Holistic and Realistic Approaches to Grief, Loss, and Transitions
Author: Gail Shurtleff
Gail Shurtleff is a California-licensed marriage and family therapist residing in the Netherlands, where she is registered as a clinical psychologist. She also authors "The Gift of Being Heard" blog, where she explores trauma and grief (including the experience of losing her husband, Jon, to suicide from bipolar disorder), the spiritual journey, disability, and life.
The WhatsApp came in while I slept. It was from my sister-in-law, telling me about her Easter visit with Beth.
I read the text and cringed, fighting back the tears that came up because I had a meeting in five minutes. Then I thought: I’ll process this after.
Truth be told, this sucks lemons. I know saying “sucks” isn’t professional. Cut me some slack—my sis is being eaten alive by this thing called cancer, and I’m going to say “suck” because this word describes it best.
I’m witnessing the decline of a woman who attacked her life with energy, maybe took on too much at times, and loves her family deeply. This leads me to the “it isn’t fair” thing.
Who says life is fair? Where is that written? OK, maybe in the land of the narcissist? I wish life were fair, with quiet lives lived out and peaceful, convenient deaths that we’re all prepared for. It makes me think of that Star Trek: The Next Generation episode where Deanna’s mother, Lwaxana Troi, meets this guy who is scheduled to return to his planet to die because his society doesn’t what want to impose or inconvenience itself with the brutality of old age. Really? Wow!!
So yes, watching Beth, or hearing about it, does suck, and my job is to figure out how to handle the news in a reasonable manner. So, I’m stuffing until I can let it out, blogging, and crying because that is what I need to do to process this ugly, upcoming death.
In the first post, I mentioned that I wouldn’t be flying over to see her. She’s weak, can’t walk, and uses a wheelchair to get around. She’s in pain constantly. She’s on drugs and sleeps in two-hour intervals. One of these days, she’ll slip into a gentle coma and then die. Her reality is that she’ll slip away, and my reality is that flying there would be useless because I’d be sucking energy from her. Visits suck energy when you’re sick. If my nieces, who are now there more often, find a window of good phone time, I’ll call. I can’t help but think that even a phone call at this point will suck energy. Time to use only e-mail and have someone read it to her, as she is also blind.
As I sit here with the feelings gushing out, I can’t help but cry. My Beth, my older sister who played the piano while I sang when we were young, my sister who could sew up a storm, is dying, and I’m here and not there, and this is hard. No, it isn’t fair. No, why must she suffer? Why doesn’t her body shut down and let her leave? Once again, I see lemons. I can’t hold the tears back, and I won’t stop them now. Sweet Beth, I’m sending buckets of love, a gentle hug, and a song.
I’ve debated making this post, but after sitting with it for over a month, I’ve decided that I want to give voice to what I’m witnessing from an ocean and continent away: my sister’s death process, or rather my process of the end of her life.
Last year at this time I received a phone call from my sister, and she informed me that she had liver cancer. From the moment I saw her request to return her call, I knew, and I knew that this was bad. I knew that I’d be hearing that she was dying, and I knew that I’d be witnessing this from a distance.
I returned her call and yes, it was bad. She said she’d do a round of two of chemo and that should take the tumor out. By late summer the call came again: surgery was scheduled for as soon as she could build up the body strength to withstand said ordeal.
The tumor was gigantic; it was the size of a small watermelon! That thing now out of her body, she settled in for recovery and did some traveling to see kids. She ended the year feeling OK.
January rolled around and she wasn’t feeling OK. The liver had been invaded with nasty cancer cells, and once again she began an aggressive treatment. This time it was worse, and by the end of February, with the protocol not working, she elected to check into hospice care.
This is where things are now. I talk to my younger brother these days and let him tell me where things are. Why do I do this?
I talk to him because she is now so drugged up that she can’t talk. My last conversation with her was no more than three minutes. This isn’t about me meeting my needs: this is about me allowing her the space and freedom to die and to not cause suffering.
Saying Goodbye
I’ve now had two conversations with her. The first one was a conversation in which I wanted to tell her that I loved her. As she shared her story of making the decision to die, I understood two things: this really wasn’t about me and I needed to respect whatever she wanted me to do. All she asked was that I not call too often. I could do that.
There are times when we revisit the “if only” space; I didn’t want this process to involve a revisit. Closure means saying what is important and realizing that if we do that, we’ll be OK. Closure also means that we allow for others to be in their own space with their own needs. For Beth it means granting her space to sleep, to decline phone calls, and to die in a dignified manner.
My part is to make peace with what she wants on my time. I hung up from the first phone call at peace. The next day I was depressed. This process is difficult and raises challenges for everyone. I realized that this would be my process: engagement and needing to be sad while managing feelings around knowing she is suffering. I went through this in 1991. The difference is that I was caretaking for my father and had moved back into my family home to be there for him and my mother. Seeing it in person is easier than witnessing a loved one’s death an ocean and continent away.
To Travel or Not to Travel?
Should I board a flight to see someone who is dying? As I thought about this, I have weighed cost, what my goal would be, my needs, her needs, and pandemic safety issues. I could not justify doing a flight to the U.S. on any level.
Will I regret this choice? I don’t think so. Which leads me to the next point of thought.
Certainty vs. Uncertainty
As I have grown as a person, I’ve faced the fact that nothing in this life is certain. It has also caused me to rethink death and what lies beyond. While I want to believe that life goes on in some form, I also understand that this type of knowing is not knowable.
Do we go off to a heaven? I don’t know. Do we become a part of the cosmos and continue on in energy form? I don’t know. Do we shut down and cease to exist? I hope not, and yet I don’t know. My life experience tells me that anything is possible. My seeing death up close and personal allows me to hold space for all options.
For a person of faith, the above might sound a wee bit odd, yet I hold the belief that we won’t know until we know, and so I sit with a wee bit of healthy existential uncertainty and curiosity. As my mother used to say to me, “Life is not certain, eat dessert first.” While I don’t really do that, but see the humor in the saying, the fact is that sitting with Beth’s approaching death serves as a reminder that as much as I want to have that certainty, it can’t be had.
I engage the possibility of life and death on multiple levels. I’ve found that in doing this, I’m driven to live the best life I can and to do the best I can do while I’m here on this planet. Watching Beth challenges me to hope and to hold all options open.
As I type these words, I understand that I’m fine with her leaving because I’ve said the one thing I needed to convey to her: my love.
Six years out and I’m still amazed at this process of walking out of grief. I’ll confess that on the 28th of August, 2016, when I went downstairs to get a late lunch and found the note, my concept of grief was in for a radical change.
It wasn’t that I didn’t know about people who grieved the loss of other things; it was the reality that the loss meant something different to me now. This was my husband—my marriage—and it was different. I’d mourned the loss of a parent, grandparents, a sister, our four cats that we’d had to put down, another graduate degree, a home, not having biological children, and friendship. I thought I understood what grief was about. I wasn’t wrong, and I wasn’t right either. I needed to learn some new things.
My father’s death was the one time I was prepared for to death enter my life. I was privileged to serve as one of his caretakers until he entered the hospice unit to stabilize and to allow his body to shut down gracefully. Even that final week was amazing. He’d lived a good life and was ready to die. It was, for me, both difficult and celebratory. The feelings of loss came about five years later when my husband entered my life. I learned for the first time that grief and mourning may enter our lives years or even decades later. I worked through the sadness that my father would not know Jon. This time—and this death—was radically different. This wasn’t easy at all: this felt like grief on steroids.
Five months later my mother died of a heart attack, and I’m thankful that our relationship was one of friendship, giggles, honesty, understanding, and mutual respect. The family had to laugh that she died on Friday the thirteenth. Her death was overshadowed by Jon’s death.
My understanding of my own process now is that it took two years of dealing with the trauma to be able to adjust to a new life alone. Stuff sets you off after a suicide, and stuff set me off! I was in no shape to work. I wasn’t ready to socialize because things got triggered and I’d start crying. It took year three to begin to stabilize. There was so much to do, to understand, and to discover. While time is an ingredient in grief journeys—mourning and doing the work that needs to be done—time itself is not the healing ingredient. Our inner strength and reserves are the healing factors.
Somewhere along the path we walk, the existential crisis rears its ugly head. You may or may not be a person of faith, and that doesn’t matter. Sooner or later we all question our known reality and wonder if our certainty or uncertainty will stand up in our grief process.
One of the huge lessons most of us learn about ourselves is that questioning is normal and healthy. Questioning can make for a robust inner dialogue! Asking ourselves both simple and deep questions propels us towards resolution in our process. This didn’t occur for me until I was in year five of this process. I wasn’t able to think clearly enough about some of the questions I needed to ask myself about our marriage, relationship, and where we were headed in the future. I realized that the questions I was able to ask myself five years out were only possible because I was stable, had done some basic work, and had returned to the work I loved. It wasn’t time that had carried me here: it was my personal stability and the work I had done up until that point that opened up this new avenue of questioning myself.
Looking In, Calling it Out
The universal cry of most who find themselves in the grief process during the early days is “When will this ever end?” The pain is unbearable, raw, unsettling, and triggering. In the beginning we might be triggered hourly or daily. It is true that with time things change, and with time we eventually arrive at a place where the grief is still present, but the texture of the grief softens and allows us to relax with it.
What I’ve noticed over time is that most friends and family forget the “Please Do” items that most of us may still need a year—or four years—out. It is as if the funeral/memorial and dinner afterwards are over, and so is the requirement to show up and offer comfort. Is it any wonder that down the road there is a collective cry of rage from the grief camp? What, do people think this is a simple process where, once our beloveds are buried, cremated, and the ashes sprinkled, it all goes magically away?! That type of closure is overrated.
There is no grief formula. Grief is as unique as we are. How we feel, think, and behave are all part of our personality constructs. What we each do with loss—whether it be loss of vision, a faith transition, or loss of a life partner—will be different from each other.
When we peer into the window of another’s existence, we gaze on them with our life’s prejudices and experiences. As we do this, we’re often tempted to offer up what we want or need rather than what the person who is in a state of grief and loss is needing. Please, no more “I’m sorry for your loss.” Every time I hear that, even on a TV show or somewhere else, I cringe with the thought of “Can’t you think of something more authentic to say?” Have you ever thought that the person, while grieving, may not be sorry? Sometimes death, divorce, loss of a job, or something else might turn out to be the gift we needed in our lives, and it may have been a gift for them as well.
The Window Inside
What people need to know about looking in is that you are offered a glimpse—and only a glimpse—into our passing along the path we walk. At any moment it may change, because at any moment we might discover some piece of life-altering thought that sends us sailing into new territory. It will never fully be over. How do you move on without holding the memory of the one you dearly love? We mourn the loss of what was and could have been. We anguish over the fact that we might have made a really lousy life decision and it brought more pain than happiness into our lives. We hold the memory of our beloved pets in our hearts. We speculate about what our child’s life would have been had they lived into adulthood.
You look in and ask, “Aren’t you over it yet?” We must reply that “No, I’ll never be over it because it all involves love, and love is something precious.”
We’ll draw the curtains closed and continue forward. Ultimately, grief is a thing of the heart and soul. We’ll let you in when it is safe and we’re strong enough to hold you in our presence once again.
Losses in our lives happen in many ways, and my greatest loss happened while I was trying to get to somewhere else that wasn’t on my agenda, or at least not in print. It happened in a way I won’t forget: a walk downstairs to find an altered life. A note on the dinner table telling me where his body was. That was the part of the promise he did keep.
We write scripts for our lives, and when they are interrupted the jolt can be confusing and difficult to understand. While we’re making our way along the road, the demons interrupt our peaceful walk and give us the boot off our carefully manicured path into something more like sludge, mess, and unexpected confusion.
At first, we panic, and then we try to extricate ourselves from this place, only to find ourselves pulled further into the mess of the sludge. When we realize that we can best exit the sludge by remaining calm, relaxing, and working with it, we’re free to embrace it. We can then deal with the mess in this new place. We figure out that the best method for getting free from where we are now trapped is exploring it for alternative exit options. That is how most grief and loss journeys begin: a surrender to the unknown.
I got out of the immediate sludge state and realized that there was a mountain in front of me, and that I needed to go through it to reach the place I needed to get to. That was both a relief and rather terrorizing.
With the unwanted interruption to our lives, we forget where we were headed, focusing on the path before us that has become cluttered with boulders, fallen trees, and strange critters that inhabit the once pristine path we thought we were on, and realizing that we’ve been transported to a much different place altogether. Where are we? What is this about, and will it be a help or hindrance?
No, we’re not in Oz or anyplace like it, though a part of us may wish for ruby slippers that we can click to take us magically back to before we wound up wherever this is now. We don’t get the slippers. Instead, we receive a walking stick that will come in handy in turning over the rocks, giving us leverage to lift the heavy trees that block our route, and in testing the strange new critters to see if they are friend or foe.
It’s taken several minutes to construct this, and yet the descent into this place happens instantly. We’re just not aware that within seconds of hearing they’re dead, “I’m leaving you,” “I’m moving out to pursue…,” or whatever the loss is, we’re sent by our mind into this place. As we grapple with it in those first few moments, we realize that our control is gone. Will we ever be the same? Will our world ever feel the same?
The Answer Everyone Wants
In this place we ask: When will it end? And when will things return to normal? The honest answer that we eventually discover is that we’ll develop a new normal, discover a new life path, and renegotiate what our personal universe looks like and what it is filled with. We forget about the old somewhere that had held us captive and begin searching for a new somewhere else. The catch to this search is that things no longer work the way they once did. The topsy-turvy has flung us into the unknown. All we can do is thrash around until we find something to grab onto that feels stable.
We start to learn that the tears, the missing, and the uncertainty will fade over time, and in their place the texture and quality of what is present in our lives changes. Slowly, we stop asking when and start focusing on the how to of this new place. This leads us to finding a support system, a new village of people that is populated with those who will become our new friends. They understand where we are! They’ve been in the sludge, gotten out, and faced their own mountain. They’ve dismissed some old village residents due to the fact that they left the village or are not able to attend to the needs in the village at this time. We find a therapist who speaks our language and we seek out spiritual direction, or stumble into another path altogether. As we gain strength and our concentration returns, we begin reading books and are able to question and act on those questions.
This new place of discovery is exciting, scary, and wide open. Oh, the options that we can explore! Slowly, the places we were headed fade away, and we’re left only with new things to discover.
You know how people say that we’ve changed? We have! If we do the work of grief, loss, and pain well enough, we reinvent ourselves. There are old things, new things, and a bunch of creation waiting to spring forth. It can all be good. In the meantime, the question we wanted answered disappears as we become involved in the process of creating new life within ourselves. New life and meaning are unique to each of us.
The tears and the missing are still present. They’ve taken on a new form and texture. For me, it was somewhere in my year three that I noticed the real change. How did this happen? It wasn’t about time; it was processing and a world view change. It is something we experience and understand due to the work we do around our grief, loss, and pain, effecting change deep within.
Noticing the Gift
For some people, the loss and the grief that are encountered become a gift. What? How can this be? I’ll admit that on August 29, 2016, if you had told me I’d be typing these words in 2021, I’d have had said something to the effect of “You’re nuts!” I’m typing this and I know I’m not nuts. Telling someone at the beginning of the process that change will happen is counterproductive to the process. There are some “please do’s” and “please don’ts” that are essential to observe.
Relationships can trap us, cause us to shortchange ourselves, or make us second-guess what we want in our lives—to name just a few of the things that can happen. The fact that she cheated on you and didn’t want to work it out is sad. After the heartache passes, a new discovery of freedom comes.
He or she is now gone; the love you once had will always remain, and now you are asking new questions. You want something different from before, and finding it is a good thing. You haven’t changed; you’ve grown! You are beginning to trust your own knowing, and this is an essential component of finding the new place of existence.
The gift of the tragedy is not pleasant. We are called to understanding through the unveiling of new options that we truly have choices if look and access them in the present. It is what we find buried in the rubble that was once sitting out in the open, waiting for us to discover it for the first time.
We couldn’t see it where we were because our understanding of our lives was focused on the life we had then. We weren’t stumbling along the path, attempting to find the new points of entrance into the new place that we need to get to.
I know some who have needed to step into employment for the first time in their lives and now report feeling fulfillment in a way they never have before. I know others who took the chance of a new career. Somehow, the lack of security allowed them to risk big! For others, it is doing the same thing with fresh new insight into the things they value most. For me, it resulted in several things. My favorite is that I returned to school for a certificate in spiritual direction. I love the program! Would I have discovered this had I not been widowed? NO! It took me moving to a new place and finding a new path to walk to do what I’m doing now.
Along the way, we employ new navigation strategies, discover our “rose rooms,” and come to an understanding that the interruption that occurred on the way to somewhere else, while tragic, has become a touchstone in our lives.
Each year since my husband’s death in 2016, when August rolls around I dread it. It is creepy, and while it is getting better, it is still something I am dealing with. Earlier this month I posted on my Instagram account. When I saw this shot it gave me the creeps. I have been in this creepy, stormy place in my mind. Having to go in once again didn’t thrill me. Then something happened.
When I showed this photo to a friend, he exclaimed: “I’ve stood in this very place!” He proceeded to tell me about this spot, which was in Maine, where the villagers watch the storms that come in. As he talked about his childhood, and what that place meant to him, I began to see life and love in the photo.
Maybe it was time for me to attempt a rethink of August. In having these thoughts, I wondered how that could happen. When I think about August now, the rush of memories of where we were and what was happening during those weeks leading up to his death assaults me every time I open the calendar on my desktop. Was it even possible to consider a rethink as an option?
In my personal work around his death, I’ve reached the place where the good days far outweigh the bad days. My appointment book and calendar are filled with things that make me happy and inspire me.
So, I got thinking that this round of August was going to be so much better. It was—until my individual appointment with the person I work with on a spiritual level. She took me into this familiar place. As the tears came, I realized what I’d been fighting and I talked through it. Several hours later as I sat at my computer, the depression crept up strongly, and the urge to shut it all down was great. But I didn’t.
As I sat on my bed dripping soothing eye drops into both eyes, it hit me: This is not where I want to be now! My calendar and appointment schedule are doing what I hoped they’d do when I returned to work. I’m happy about where I am and the work I’m doing. Four years later I can accept the awful that I’m feeling in the here and now, but it doesn’t have to stay around. While I know what that dark, stormy place looks and feels like, I’m not in that place anymore. I’m seeing things in new ways!
I can’t tell you when the shift happened. I can’t tell you how it happened. What I can tell you is that it was slow and gentle, and it involved my willingness to stay on this path that I’m walking on. It involved confronting the old self, being willing to engage with questions, and visiting change. Some things weren’t new to me, and others were.
Grief and loss call us to an encounter with ourselves that can be rather revolting at times. As we look in the mirror, we are asked to converse with the person staring back at us. Sometimes we must admit that what we are seeing is not something we like. At other times the image we see is one that we accept with surprise and amazement. Is this really the real me? In the moments of amazement, we are greeted with the realization that yes, I’m really doing this! Yes, what I thought would never change is changing. Then we’re taken to that place where we ask the “how” question: How did this come into being?
I believe it is a combination of both actions and events that propels us into these new spaces. Small successes that build self-esteem and allow us to reconstruct what might have been damaged by death or loss, or in other ways. The courage to dare to stick the toe into the water and test it to see if the water will tolerate the tiny toe. When we discover that first level of safety, we can progress. The testing of the waters is a small event. It is one that signals safety and that it might be OK to consider a tiny action. For some people the tiny action might be making a meal, going out to lunch, or picking up a book to read. It really depends on our personalities. My first foray back into the land of the living was a three-week trip to visit the U.S. and it was huge in so many ways. I returned knowing I could navigate places that were foreign to me: new public transit systems and other new places. Just shy of the month of August 2017, I realized that Jon would say I’m “rockin’ this!” To tell you the truth, I was terrified! It was a huge first, and it would take another year before I’d do it again. But this time, much closer to home. The second trip was a journey to Glasgow and Wales. It was all new and, once again, with the support of new friends, I made it—and I did well.
The landscape I called life changed with that trip. I wouldn’t trade it for anything! It opened up my mind and heart to new experiences, and as the next year unfolded and 2019 rolled around, the tears lessened, the new friendships began to take root, and now my legs were immersed in that water. It would really take all of 2019 for me to fully begin to swim in life’s waters again.
Now, as I write this with August in full swing, and 11 days left in the month, I stop, take a breath, and rethink the photo I posted earlier in the month. Yes, my life has really changed. Yes, Jon would love that I’m “rockin’ it.” Yes, the tiny events turned into larger actions. Yes, it has been hard. Yes, I’ve found ways to move on. Yes, I’ve met the old me and have kept much of her. She is new in many ways. I choose to stand tall and strong in this new place I call life.
This blog has a title that dates back to an incident with my husband’s psychiatrist. At the end of our conversation, when I thanked him for listening to me, he replied, “You needed to be heard.” His acknowledgement that this issue had to be addressed was huge for me. I left his office with my husband and realized that I had a title for the blog I was working on publishing. That exchange created a bridge of trust with me. I would need that trust as the years went on.
That one incident opened me up to a new understanding of how validation through truly hearing with the heart and mind can alter someone’s life path. A good decade or so later our exchange still stands out in my mind. That doc really took the time to hear, respond, and accept my truth.
Having said all of this, I’d like to share more on this subject as it relates to another healing moment in my life.
Something happened to me after Jon’s death that was so hurtful I had to put it on the back burner for two years. I won’t share what happened because to do so would expose several people who, to this day, think they did a really great thing. It wasn’t a great thing. In 2019 I began to address that hurtful act. It took one year to completely resolve the issue. It wasn’t fun, and I’m glad it’s over.
The catch—and there always is a catch—is that I had a well of pain that was connected to people’s behavior towards me. That wasn’t so easy to wipe out of my mind, or to repair. The reason why is that several misguided people thought that they were helping me in my loss when they were, in fact, doing great damage. The key to the resolution was, and is, gaining enough perspective over time to be able to step back and decide how to best handle the matter.
This is complex in that telling someone what they’ve done isn’t always the best resolution for them. They most likely won’t view the event in the same way that you do, or have the insight to think it through. You might come up against strong resistance when explaining how hurtful such actions are. I tested things out with one of the parties involved. This person couldn’t understand why I was so angry. I realized that it was not productive to force the issue.
The rage and pain were very much present. What can you do in a situation like this?
Death rearranges the address book. In my case, Jon’s death did a grand Viennese Waltz through the pages of my book. People who I believed to be friends disappeared. Family who couldn’t cope with my new reality disappeared. It left me staring at once-full pages wondering how—and if—I could rebuild with new people in my life. It served as a witness that grief, and the lack of comfort others have with it, brings great pains to those who must walk through the lonely terrain.
Fortunately, I’ve begun to build a community of new friends who view life as I do. I’ve paid a steep price for these new beginnings. It was towards this new group of people, who are becoming friends, that I turned, seeking a listening ear. But I needed more than just a listening ear; I needed to be fully heard. I found that person. I was heard in a genuine and caring manner. It allowed me to let go.
Not being heard can cause someone to become stuck in the quagmire of pain, loss, anger, trauma, disappointment, and so many other things that I won’t list here. Not being fully heard can cause us, as humans, to shut things down, to cling so tightly to the pain in our souls that we can’t find the ladder out of the quagmire.
Being heard—and truly hearing another person—may require that we face some painful places in our own souls while accompanying them through a darkness they want out of.
Being heard means opening ears and stopping the responding and questioning, in order to allow for understanding. Hearing and being heard involve authentic empathy from the person doing the hearing. It is a skill.
I am by no means perfect at doing this. Sometimes I blow it. When I realize I’ve blown the “hearing,” I go back, apologize, and work even harder at doing a better job during the next hearing.
If you’ve been fully heard, you understand that one of the feelings that opens up for a person in this process is liberation! We are liberated from our burden, the trauma, the pain, the struggle of the choice we’re making—we’re set free to explore new and colorful options. Maybe we are enabled to take that first step on a road to someplace new. This hearing might allow us to stop the repeating “sound bite blasting” in our heads about what we could—or should—have done.
Being heard entirely is a gift. It is one that we unwrap with joy, understanding that it is not as common as it should be. It frees our spirits, calling us forward to new ground. It opens us to new relationships of understanding and trust. When we engage in the power of complete hearing, it changes us because our views and hearts are altered. We can no longer choose to unhear or not see what we’ve become a witness to. Each time a person is truly heard, it changes the world.
I’ve been thinking about the ways we all look to find peace in our lives. Some isolate and hide in their own inner worlds. Some turn the news off so they don’t have to hear the crazy. I’m noticing that lack of thought is also giving people the illusion of peace. People hide in their vacations, shopping, as well as their food. Some people hide in moods, achievement, knowing, religion, and belonging. Starting to see a picture here? How do you hide?
One of the things that has been affected by my husband’s death has been the need to travel alone to places I’d rather not go. The process of going began with me sitting at the dining room table with a group of people and being totally freaked out (“freaked out“ in this case being a technical term). I was panicked, I was uncertain. I was getting drunk on chocolate because people around the table kept feeding it to me and I kept eating it. I couldn’t even envision the path that I’d be facing during that first 24 hours. I believed that I couldn’t do it alone. Who would walk with me? The walker came later.
The second full day brought with it a discovery that I wasn’t alone. I was able to reach down into a place that I didn’t understand and sit in the moment, finding peace within. For a brief period, I understood that I’d pull this off. But, I didn’t understand how at the time.
I think that inner peace comes from being still and listening to our bodies and our hearts and trusting our guts. We should also allow for some “out-of-the-box” thinking.
When we understand our inner compass it can guide us to places that we would normally not go. I had to learn to trust in what I had and to build it up as I journeyed on a new road. Getting through grief, loss, or transitioning to a new place is all about being able to walk a new road. It is about understanding that when the roadblocks appear, you can find ways of getting through them. When I would begin to doubt, a friend would remind me to “look for your options.” As I did this one thing, I could bring myself back to a place of knowing, understanding, and calm.
I had to learn to sit with the uneasiness of things I didn’t like. That is just one of the lessons I’ve learned because of the life transition I walked through in dealing with Jon’s death.
Sitting with stuff you don’t like is hard. The urge to get up and move back to the safety of the old ways can be strong. Seeing the new path and discovering the new ways will change your view permanently. Once you see the new, you cannot retreat to the old.
I don’t have a magic answer for how to pull this off. I can tell you that the longer you sit in the new space, the better it gets. It’s the equivalent of breaking in a new pair of shoes. The first few wearings can be difficult and then the shoe begins to mold to you and soften itself to your foot. Suddenly, like the shoe, sitting with the new way of being feels comfortable. It isn’t a foreign thing-a-ma-jig hanging around begging for recognition. You feel it, see it, and understand that it is now a part of who you are.
The catch to doing the above is that it is hard! This is where a good therapist, or coach, can come in handy. It can be helpful at times to have an objective third party who can come in and become a part of your team to cheer you on towards the inner peace you desire.
Discovering that peace comes in the silences of the journey has been valuable to me. Spending my first hour in the morning slowly waking, thinking, and reading has also calmed my soul. I get that I have the luxury of doing this because of my age and not having children at home. Now you may be thinking, That is all well and good, but that won’t work for me. Yeah, I know. So here are some ideas for you to snatch at as a beginning.
If you have kids, you can:
Create a family time to sit and share
Eat together and talk about the day and one good thing each person learned
Claim one day per child when the two of you know that you will be together and do something you both enjoy
Create an end-of-the-day ritual that closes out the day and sends kids off to bed. Make it enjoyable
Read together
Turn off the TV
Go for walks, bike rides, hikes, or another free activity that you all enjoy
Those are just some ideas for kids and families having to walk new paths.
What about you?
Start by claiming five minutes to just sit
Light a candle and just… sit
Swap time with a friend to get out once per week—even for only 30 minutes
Discover reading, art, or music
Find a podcast you enjoy and tune in
If you enjoy a bath, have one
At some point in time you might want to welcome a cat or a dog into your life
I’m hesitant to make this list too long, or too specific. It’s just meant to get you thinking.
My parting words to you are that inner peace comes after the tears, the hurt, the anguish, and the doubts begin to be purged. There is no magic formula for any of this. What is there? There is the knowledge that those who have courageously walked and sat where you are now, have found their path to inner peace and a new way of being that will look different than where you started from. This is a good thing!
To work with Gail, use the Contact form to request a session.
*Note: This happened in 2014. The similarities between a minor stroke and grief are mind-blowing.
October 3rd was a glorious and warm fall day. Jon and I were visiting friends. The drive south was warm and sunny, and we were having a great conversation. The visit was great and we were now headed home for a nice long weekend. We were in Utrecht, stuck in traffic, and I was getting tired. I put my head down. “We need to leave for home earlier,” I said. Once again, rush hour.
Pulling into Huizen, we decided to run to the store for butter, and I stayed in the car because I was just so tired. It was then that I lost all strength in my neck. I couldn’t keep my neck up! Weird as it was, I ignored it. Jon helped me into the house and I just sat on the sofa. He made dinner and we watched television.
It was after a bit of whatever-it-was-we-were-watching that we took a pause and he noticed me. I felt terrible and my right leg and left arm felt funny. He said that my face looked like it was drooping. We called the after-hours doctors. They sent a doctor out. I knew then that something was really wrong, and that I was headed to, as Jon and I call it, the “big house.” Yet another medical adventure was underway.
After the doctor took a look and got my history, he phoned Utrecht UMC. It was determined that I would go there, as my records were there and they knew about my situation.
The best way to describe what happened to me is that I felt detached from my world, and my body was not in my control. I felt suspended in space and at the same time, as if I were a heavy, limp weight that had to be helped to do things. My right leg felt like it was suspended in mid-air. I would later be able to state that I felt as if my leg were “drunk.”
Ambulances are weird spaces. They can be disorienting and scary. Instinctively I knew I was having a stroke but I didn’t want to verbalize it. That was too terrible a concept to utter. At the time I just wanted Jon to be with me, and it seemed like it took him forever to get there. As usual, there had been a car accident, so the doctor was off with somebody else.
Finally at 2:00 am, I sent Jon home. They’d be coming for me to admit me, and he needed rest. As it turned out, I won the hospital lotto that night and was wheeled into a private room. Now that was luck! Peace was to be mine in the days that followed as my health crisis unfolded. It had only begun on that Friday evening.
Before admitting me they had done a CT scan, but not an MRI: That would be done Monday. CT scans don’t show everything and this one was no exception. I had lots of symptoms that didn’t seem to last, or make sense. By mid-Sunday my right leg felt paralyzed. As I lay there wondering what was coming next, I thought, What if my lungs shut down? What if I can’t breathe? Or, what if I die in this room all alone? Now, that got me thinking. Being alone in this situation was scary. I would later beg a nurse not to leave me in the middle of the night. He was great and stayed until I calmed down.
By this time in the process, I needed assistance in getting around. It was not fun and certainly somewhat embarrassing, but you do what you have to do to keep what dignity you can. My speech was also being affected in strange ways; it was different from anything I had experienced before. The left side of my face felt like it had puffed up, as well as my tongue, and I was speaking weirdly. I was now scared. The nurses just watched.
Throughout the entire process they kept asking me to rate the pain. The rating was never higher than an eight. I had suffered worse pain with a pancreatitis attack! They kept asking and I kept telling them where things stood.
Monday came and I wound up getting an MRI. Then it was time to wait. And wait I did.
Jon came and it felt safe. Then the three doctors came in. There were no smiles. This isn’t good news, I thought. I heard the word “stroke” and then I was swirling in words. The whole thing sounded like the voice of the teacher in Charlie Brown. I just faded in and out and thought, What have I lost? I was sure that my right leg and left arm were damaged. Anything else? I thought as I lay there taking an inventory.
I wanted to scream “STOP!” so I could process this. “STOP! You are going way too fast! I’m falling behind!” Jon was now upset and asking why they had not done the MRI sooner. Why had they not seen the stroke on Friday? We thought I had not had a stroke because of the CT scan. Yet in my gut I had known I was having a stroke. I’d just had the weekend to believe otherwise. Why had I deluded myself?
Now I had to tell my family what the real situation was. I knew this would disturb my mother—it did. She was already thinking that I’d die. Thousands of miles away, she wasn’t taking it well. I only found that out when I spoke to my sister. The friends we’d visited on Friday had contacted Jon to see how I was doing. Upon finding out now that I’d suffered a stroke, they drove up to the UMC to be there and offer support.
The nice thing about private rooms is that nursing staff will let you violate the rules with visitors. They stayed until nearly 10:00 pm. Then they left, and Jon followed shortly after. I was now alone. I had to now make a choice about medication. That seemed to be one thing I remembered in the earlier conversation.
The last thing I wanted to deal with at this point in time was vision loss. I had to decide if I was willing to risk just that. Did I want to risk going blind but still be functional? I knew it could happen. It was a chance I had to take. I had to risk taking a drug that would save my body from another stroke but could wipe out the remaining 12% of my sight. I spent Tuesday agonizing over the choice, knowing that I had to accept the pill or whatever it was I was in for. I was still symptomatic and Wednesday it was decided for me. I drank the powder that would be a daily routine until forever.
Wednesday also brought with it a friend who knew of a great rehab center that was 15 minutes from home. I am so thankful that Marion knew where I could go for the needed rehab. Sometimes you get lucky with the right information when you least expect it. I feel very fortunate that way. So, I might not have had a say in medication usage, but I did get to have a say in where the rehab was to be done. I was learning that I had to take what positives were handed to me and accept them. The anger at the negatives would come in time and all too soon.
I got lucky in that there has been no major damage. You never get well from a stroke. You can recover a certain amount of usage and strength. You can learn to manage energy wisely and move on. But, you don’t get well. That will never happen, and believing that you will get well is a myth. So, I’ve entered the recovery and learning phase of post minor stroke in my life.
I have shed tears, felt despair and emptiness, and at times feel like I’m a burden to Jon. He is listening and offering support. I know this isn’t easy on him either. It is a balancing act of allowing him bad days as well.
I appreciate that friends and family want to send kind thoughts and prayers. I think that is more of a comfort to them because somehow they feel as if they are helping. It is nice to be thought of in that way when I am so far from you. What I need is help and at this point that means phone calls and visits, as well as a meal so that Jon doesn’t have to shoulder it all by himself.
I just folded some laundry and I’m wiped out. You don’t know how much energy you consume until you don’t have any to put out. In the past few weeks my life has changed. I know it will change more. Some things will be good and others won’t be so easy. I got lucky; it could have been so much worse, and I’m thankful that it wasn’t. I will recover all I can. I will build strength up in as many ways as I can. I have begun the fight in simple ways. This is something I know how to do: the inner warrior is back. I’m ready to fight for everything I can recover.
*Note: This was written in 2015. Putting it up now seemed right.
Today I’m thankful for science. I am glad that I am breathing, and functional, and that I get to go to physical therapy. I am glad that during this coming week I’ll begin the process of strengthening my arm and my leg. I’m glad that there are people who understand what it is all about.
I’m thankful that there are doctors, and others, that took the time to sit in classrooms and labs, and learn about what is going on in my brain. I’m thankful that they had the curiosity to study and learn. I’m glad that there were people who went before, who allowed interns and residents to work on them and study them so that they could get an education.
I think back to my days as an intern in grad school and my postgrad work. I’m thankful for clients who let me learn via the process of working with them. Next week on the 27th of November, there is a day of gratitude that is celebrated in the U.S. For those who are U.S. citizens: What will you give thanks for? What is your life all about? Who has made your life better this year? Whom do you owe a great thank-you to?
Once again I will thank my sister for the trip to the U.S. I will thank her kids for helping it to be a success. I am thankful for the fact that I was able to spend three weeks with my mother. I’m thankful that I got that time because I don’t know if I’ll ever have that again. (Thanks for the bash!!!)
I am thankful for friends. I wish I could see more of you, but you are there and I’m here, and our hearts are together.
Sometimes we get so caught up in the complex that we forget the very simple. I am writing a simple post because I want to remind you of the many things you have. You have the ability to move your hands, to walk to the mailbox, and to see the sun. You can open the box or click with the mouse. Somewhere you know someone who CAN’T. During the next year, pledge to extend to them a service they need. Pick up the phone and call them more often.
Gratitude is a two-way street. We need to take the time to be thankful for the stuff we have. We need to create things for others to be thankful for. It is about giving and receiving.
It is raining and cold outside, and I’m inside where it is toasty and warm. Penelope just popped by to say hello and stick her tongue out at me. I look up and see my back-lit parasols that Jon put up here in my workspace. I owe him a great debt of gratitude for the last five weeks. He has cooked and cleaned and comforted me when I’ve been sad and blue. I cannot repay this but I can give a thankful heart and a very public mention.
On Tuesday I will have my first physical therapy session and I hope I get pushed to the max. I will also have my first ergotherapy session and that, too, will be a challenge. I can’t wait!!!!
Grieving or mourning? That is the question some are asking now.
With the onset of quarantines, being in isolation, missing seeing those we love, and social distancing, what’s not to be sad about?
I can’t sit in my favorite restaurant and eat my favorite sandwich. I can’t get my hair done. I can’t do a great many things that I was able do in January. Because I’m at a higher risk for this than some adults, I chose to quarantine as soon as I knew there was a danger of getting the Coronavirus.
Two full months into this process, I’m missing the human contact. I’m missing planning a lunch outing. I’m sad, but not really grieving. I’m mourning what I can’t have right now. I believe I’ll get it back. I haven’t lost it forever.
So, those who have love—and have food to cook—are eating their way through this thing. We’re wearing more elastic waistbands and not buttoning our shirts. If we’re home, our dress code is a wee bit more laid-back. We aren’t missing the dress clothes.
I’m sad and I mourn what once was and what I didn’t understand could vanish, because to have it could kill the innocent and those at high risk. So many are at risk! So I stay home and connect with Zoom and Facebook. It isn’t the same, but it is something. I’ll take it!
As my count continues to rise in the area of “people I know who’ve had the Covid-19 virus,” and has gone from needing more than one hand to count on, I am sobered. No one I know has died from this—yet. I mourn the change it has brought to our world.
There are those who now grieve the loss of those they love. For them there will be faces missing around a gathering. Taken too early by a thing we don’t fully understand.
In my home, while I mourn what was lost, I also am seeing the positive. We are being shown that the earth can heal if we, as humans, step back and allow it to do so. This process has also shown me that there is a time to reach out and a time to have the quiet of my peaceful space. Don’t get me wrong, I love my princess of a cat, but when you start to want her to talk so that you can hear another voice in the room, it is time to reconsider the situation.
I think what I’m attempting to convey here is that yes, this situation sucks royally. Yes, there are some good learning points that can, and will, come out of this. Maybe tonight I’ll have food delivered just for the human contact and hearing another voice. Or maybe wait until Friday. Whatever I do, I know that I’ll get some of this back. Things might change for everyone, but change doesn’t mean lost. Change means growth, and that is a good thing for everyone. Yes, I’m sad and mourning, but I’ll get to have my sandwich and great fries again.
If you have been diagnosed as bipolar you are well aware of the pain, struggle, trauma, frustration, fear, uncertainty, and so many other things that come with this diagnosis.
Once you have a cocktail of medications that work, your visits to the psychiatrist might be paid by health insurance. But, supportive therapy may not be covered.
If you are looking to add a professional who understands the issues surrounding bipolarism in a practical manner, working with me could be the right choice for you.
Some of the things that I’ve seen with people who successfully come to terms with the bipolar diagnosis are that they do the following:
Create a quality support team
Engage in healthy diet, exercise, and sleep management
Pursue a hobby
Find quality relaxation time
Engage in activities that challenge them
Understand their limits
Understand when things are getting out of control and check this out with their support team
What I Offer:
Support for your process of stabilization and healing
Understanding that part of what you’re facing is the task of rebuilding a life of loss, and that you may be doing some grieving about where you currently are
Insight into the dynamics of how bipolarism can play out in relationships
Years of understanding that a person isn’t defined by their disorder
Who Can Work With Me?
To work with me you must meet several requirements. If you can answer 4–6 of the following statements positively, we can talk. I will want to know if there is a statement you need to work towards in order to give it a “yes” answer. The statements are as follows:
You are in treatment with a psychiatrist and are adjusting to a stable situation with your medication.
You are committed to swallowing your medication each and every day as prescribed.
You are committed to adjusting the medication as needed.
You are seeking to build a support team that understands the challenges you face in living daily with bipolarism.
You have the beginnings of a support team and a demonstrable plan of action should something happen to necessitate restabilization. This is vital in our working together.
The woman in the front seat of the car is fighting the urge to turn around and duct-tape her child’s mouth shut—permanently. This phenomenon has happened on every long journey since time immemorial. Then the mother has this flash in her mind that carries her back to the beginning of time and particles smashing together. Maybe it even happened with the sludge of the universe as the Big Bang occurred. Imagine two atoms: “Are we there yet? Are we done yet? Can we get on with the Paleozoic Era?” But, duct-taping them would have caused a disaster. She smiles to herself instead and continues to focus on the road ahead.
Maybe in the grand scheme of the cosmos, delayed gratification is one of the great laws. The universe took the time it needed to come to its present state. That can teach us something. The universe was formed with only what it had on hand from the first moment all things slammed together and all things followed in order. No credit here. It waited. The universe used its resources where it needed them, when it was ready for each new phase.
Let’s face it: Putting pleasurable stuff off is a drag, but a necessary drag. Delayed gratification is about learning to respect the journey. Delaying gratification is about knowing that you can never have it all, instantly. Delaying gratification is about learning to work for what you want—waiting for the good stuff until you can get it in a healthy fashion.
But isn’t that a myth? You well remember that last flick that showed someone having it all: the big house, expensive car, fashionable wardrobe, fulfilling job, loving family and friends, and, let’s not forget—physical beauty. But, it rarely comes instantly. Real success, like the universe we live in, is painstakingly forged one item at a time. Yet, today, there are those who can’t wait. Saving is a thing of the past. Sorting out needs from wants is becoming blurred.
Remember childhood with its lazy times of fun and exploration? If you are old enough to have been raised during a time when play was really creative and done outdoors, you perhaps remember when books were a passage into another world (and not instantly made into movies), and TV was something that you watched for very few hours weekly. If your childhood was like this, then you are one of those who learned a valued lesson: doing fun things takes planning and time.
It is also highly probable that chores and learning to work were a natural part of your life. You had to save for what you purchased. I remember going to the store to purchase some shoes I’d saved for. For weeks I walked by that store window and looked at those slingbacks. Getting them made me feel “adult” and responsible. I earned those shoes. I wore them out proudly, had them repaired, and continued to wear them out.
For each of us the lesson is different: Anticipation is a good thing. Anticipation makes the gift we are receiving more intriguing, the new dress more exciting, and the new car that we saved up for more valuable. Anticipation gives a deeper meaning to most things we have and desire. There is a type of magic to working for something. Keeping it becomes valuable to you because to discard it when it still works means that you are discarding your hard work. Tossing it out just to get the latest thing can be an issue.
As I think of all the technology that has evolved since I was a kid, I remember that sunny, July day when Neil Armstrong and Buzz Aldrin touched down on the moon and life as we then knew it was altered. The moment was electric. Now it seems that much of the “electric” has gone out of innovation and progress. Progress is a constant in an advanced society. More and more, having it all instantly is a must. Trading up for the latest in tech, when the old is still of value, is common. To suggest that you keep what you have might be heresy. It is about having the latest and dumping the old. There is a rush on to have it all NOW with no waiting period.
We now have smartphones, smart drugs, and smarter cars, and yet we have not become any smarter ourselves. While results are faster, we as humans are still finite. We live through our technology. We live, thinking and feeling as if all answers must come fast, as if deeper thought should somehow be instant. We want that insight NOW, rather than being willing to let life teach us. We might even become impatient when our first few searches on Google fail to turn up what we need. Searching shouldn’t take us so much time. Why can’t we get it faster? Well, searching on Google is hard work, that’s why. Finding the correct answer does take some deeper looking and heavier reading. In the process you might conclude that there is not a perfect, or good enough, answer to your search, and that maybe it DOESN’T exist out there in cyberspace.
Remember when science was supposed to save us? Remember when the Peace Movement was the answer to conflict? Remember when autonomy was the answer to authority? I think we need to reread The Glory and The Dream by William Raymond Manchester.
Maybe we as a world need duct tape on our gratification instincts. Okay, that is an eensy, weensy, bit extreme. Or is it?
I have taken up baking. It is wonderful to create something that comes out of the oven and is warm and yummy. The fact is that baking demands that you wait. There is a proper time when eating will bring the desired pleasures of good food. Just think of something you love melting in your mouth and your brain will light up in anticipation. Your mouth might begin to prepare for the pleasure as you read this. BUT, you have to work to make it, so you had better make lots of it to enjoy!!!! Yikes!! I want to eat those scones I plan to bake for Saturday, but I want them right now!!!
The whole idea for this commentary came from a conversation I had with someone about the guide dog I’m working on getting. I’ve been in this process since 2010. At this point, I just want to move on. I’ve had to think about whether I’m ready, or even wanting, to move forward, because I can’t wait. Like the universe, I have had to work with raw thoughts. I’ve had to shape and train them. Crossing the street in safer places has become a must. Thinking about HOW I’ll do it and memorizing routes takes time. Learning the train stations and bus stations has been fun, but I’m glad I’m past that.
I’ve had to reevaluate my established walking routes, my future needs, and the needs of our cat, Penelope, who will have to welcome a dog into the house. Getting this dog is life changing, and making the correct choice at the right time is important for our family.
I’ve spent 15 months in Apeldoorn learning what things that I’ve needed, and lacked. While I was in Apeldoorn, I was also able to observe others with dogs. My process is of more value because of all of this. While I don’t want to rush things, I feel the time has come to move things along. It isn’t about “when” but rather about the process and how secure I feel with it.
Childhood is all about “getting there.” Young adulthood seems to be moving in the direction of attempting to get it as fast as possible and show it off. Eventually there comes a time in life when you reach “wisdom,” or the point when you accept that you never will fully have everything you think you need, but that you can have the “needful things.” The journey is what it is all about. Saving up for the good stuff is where the greatest reward lies. Understanding our real needs and allowing ourselves to have wants that might become realities brings peace through expectation.
“Mommy, are we EVER going to get there?”
“Yes honey, count the green and red cars, and tell me how many you can find.” I’ll be content to count the red and green cars until the doggy enters my life. I hope it is sooner than later because I feel better about “it” coming into my life now.
The air was crisp and the trees were colorful. I was happy because my favorite season of the year was present. Autumn was present in every form including the warm colors of clothing that I loved so much.
For me autumn is what I like best about the year. The northern California Indian-summer days, and the crisp feel that you get when you are out and about, are wonderful. As a child, going back to school—which I didn’t like because I had to stop reading what I wanted—was only tolerable because it meant AUTUMN was in the air. For me the world was then, and is now, perfect in the autumn.
As you age, the seasons melt into the cycles of time. The playfulness of life and a budding spring and its excitement give way to the learning of summer. Oh, and summer is filled with exploration and the joys and perils of adventure: the challenges and joys of learning on your own, as you discover that the lessons of young childhood and early adulthood must become a basis for your fast-but-seemingly-slowly-approaching full onset of adulthood. There might be some true “yikes” moments during summer. Those “yikes” moments, when you catch yourself about to make a life decision that is better rethought, can be a good thing. “Yikes” means that you are aware of what is going on!!!!
Summer brings discovery of your real “self” emerging into view. Summer also brings a desire to have it all. You don’t want to see it end. You want to play hard and never see the sun go down. Summer brings a growth that you learn from trial and error. The lessons of spring and the early summer remain with you as you feel the time now fast approaching when autumn is on the way.
If you’ve had those yikes-type moments, and have taken the time to repair what needed fixing, you are in good shape now.
Autumn is the season of wisdom. Autumn is the time when the lessons of a young spring and summer are played out. Autumn is a time of realization, regrets, new focuses in life, and a time of hopes, as well as sorrows. Before autumn ends, and the onslaught of winter comes with its powerful resolution to destroy all that you hold dear, you must navigate through the autumn.
Autumn is, in a sense, “karma collection,” or payback. Realizing that I could have made better choices has only come because I made the not-so-good choices. I took risks in life. The thing about autumn is that you can’t turn back. And, you can’t avoid it, because everything we do in life has a price attached. You must adapt, accept, let the leaves of autumn fall, and move on.
Autumn still offers me time to change, to learn, and to grow. I love autumn! Raking up autumn’s leaves is important, and like it is for a child who jumps in the pile of leaves (you know, the one he or she is told NOT to jump in), it can be exhilarating. I like to inventory the leaves and really see what is there. I learn from this inventory and that is always good. I love the process of change, even though, at times, change is an unwanted aspect of life. Getting through the trials of change still brings me hope. I am better for it.
As I now reflect on my spring, and the innocence in which I lived it, I’m amazed I did as well as I did. I look at my life and realize that it has had its challenges. Challenge is what it’s about. I’m not always thankful for that which has kicked me from behind or punched me in the front. But, I can honestly say that I’ve knocked down the walls that have sprung up in my path. Tearful days and nights have made me stronger and wiser when it comes to life. It is the mistakes that make you think about the new stuff in a self-confrontational manner.
If my spring was innocent, my summer was an adventure in learning. By being able to make both good and bad choices, and dealing with the consequences of those choices, I grew. Summer is a time when the life bank account is in “deposit mode,” and what you put in will, in the future, be withdrawn. You will have to pay for your summer. Some payments will work well, and others will hurt like having a tooth pulled without the Novocain. Life is like that, and you can’t turn from it. Sooner or later, the crisp days of autumn roll around and you enter that time when all accounts begin to go into “withdrawal mode.”
I am amazed when I hear someone say that they really haven’t had any challenging stuff happen in life. I wonder to myself what they haven’t been doing. The fact is, life is a series of challenges. Making mistakes is a good thing because it can mean that you are engaged in the life process. Learning from your mistakes means that you are progressing and committed to doing better as you move through life. Autumn is that time of the year when one can reflect.
I’ve come to the serious conclusion that few are blessed with all the wisdom they need to make life decisions at 20 or even 25 years old, and yet that is what is demanded of the young. I hear of more and more adults in their 40s or 50s who embrace the unknown of what they really want to do. They are happier for it. Autumn is a time to rethink, to take a risk, and to change the course of life. “If only I knew” becomes “Why not?”
Autumn is when you realize that it isn’t “too late” or “hopeless.” Grab the brass ring and do it!!!
Healing from the springs and summers of life makes everything more valuable. Reflection during our autumns causes us to sober up, to appreciate our youth for what it was, and to anticipate the future for what we can create as vibrant adults. Whether we’ve done it well enough in the past, or are choosing to do it well at this point in life, autumn is that time of life.
I’ve learned via observation that those who seem more at peace during their winters are those who have challenged themselves during their autumns. They are actively enjoying the lives they’ve built, and face with dignity the storms that life will still produce. I will always cherish what each autumn brings to me.
As I look out my window and notice the sun’s changing position, and feel the lowering temperature, I know that once again my favorite season is approaching. Autumn, with its crisp days and warmer colors, is just around the corner. I can’t wait.
Towards the end of my work in Apeldoorn, I became aware of my personal space in the house. We moved into this house in March of 2011, and I was busy with the details of settling in and making sure our things had places. The upstairs rooms are small and it was a challenge to really know which space was best for what.
The downstairs is an open room that is “our space,” with the kitchen at one end and the other end for general use. We both like to be in the kitchen and we are learning to share the space—happily. It is nice to have a guy who wants to cook with me. The space where I work is a tiny room that has many Gail-type things within. Recently this space has seemed a wee bit cramped. Cramped isn’t good for the soul. What can I do?
Slowly, over the past month, I began to notice the lack of a feminine place for me to exist within. I’ve considered creating a dressing table where I could keep all the things that make my head pretty. The problem is that there isn’t the space to place such a table.
So Hubby will make the table, and when he really gets down to the business of design (which I’ve already done in many ways) and creating, the finished product will be wonderful. It will be nice to have the table when it is completed.
Places of Passion
As a beautiful place for me is a must, so is a place that sparks life as essential as breathing. For me, my work is such a place. I find that I become a joyous and happy soul when I think in terms of what I love and do well. I find myself exploring questions that, in turn, lead to other questions and cause me to wander over vast areas of space. I dip into one space, only to find a jumping-off point for another. The “what if” and “what about this, or that” span into hours of discussion time with another person and cause me to tingle and feel a type of life that exists nowhere else. This type of knowledge energizes me in a way that nothing else does. When I am not able to have this in my life, I find life to be dull, as if a vital ingredient is missing. I knew at a young age what I wanted professionally, and was not able to reach that goal until I was in my 30s. At 16 I was fortunate to meet, and know, someone who had returned to graduate school to pursue her master’s degree at a later age. As we spoke, and I discovered what it was she was doing, I started asking questions that we could talk about. She would tell me about what she was learning, and I discovered that I had valid opinions about what we were discussing. Psychology fit my brain in ways that studying history did not do for me. I was alive. I was also hooked.
I found that one of my early areas of interest was working with people of differing cultures; at first it was those with disabilities. How could the family system be strengthened when disability rears its head within the family walls? My interests have branched out to those of other nationalities and cultures and exploring the richness within. What was someone’s experience as a Peruvian or Mexican? How do they experience life in a different country?
During my graduate period, I began to explore other areas as well as the above-mentioned ones. Art and creativity and music were a special focus. I became aware of using journals and the power of writing it all down. I also began to understand the traumas that people endure and how they cope with them. Ultimately, my love of disability issues has remained firm. There is power in freeing the person who may be told “You can’t because you are […].” I believe that many things are possible. It is all about finding a path and making that journey—and it will take courage. This journey will change everything.
The Journey Within
There is something about the journey, and exploration of a person’s journey, that ignites excitement within my heart and soul. An “aha” moment when a light switches on, the click when a missing piece of the puzzle is found, the discovery that what one believes can change, or the finding of a new path. I want to know what the next bend in the road brings me and where the journey is headed. Change is exciting and challenging.
Respect is also a vital component. Someone is letting me into their inner space. I am allowed to walk with them through hardships and triumphs. If there is a failure, I need to respect and honor the process of their recovery and rediscovery. Compassion and respect can be a powerful ally in the healing process. It is sorrow I feel when someone decides to not go further on the path that would lead them to a better place in life, BUT at some future time, they may resume the journey. Life is full of uncertainty and how we each face the unknown says so much about us. If we each had a crystal ball, would we use it? If we saw the challenges ahead, would we still choose to go down that path? Life is about learning and meeting the challenge. “If only I had” kills the spirit. “If only I had” deprives each of us of what we can learn and gain from the mistake.
Part of my personal journey in life has been my own process of learning to ponder slowly. Learning that I don’t have to get anywhere fast has been a nice consequence of aging. Now I am prone to concluding things for myself in my own time. I may sit on something for some time before grokking it in proper fashion. My brain and soul are on a quiet and slow path to understanding the needful things. I wasn’t always as slow to conclude as I am now. The time of youth was far different. I cherish where I am and what can come of it. Who I am during my 50s will be a far cry from what I will have learned by 75 and who I will have become. If I haven’t changed and become a better person, what is the use of life? Maybe there will be one younger than myself who gains from the wisdom I’ve gathered. Someone who will say to me “You are so wise,” and I will have to say “I’ve come by this through imperfection and making both wise and stupid choices.” Maybe I’ll laugh at the thought that I’m thought to be wise. Only time will tell.
Places of Mystery
Isn’t that what all this is about? Living our best, leaving a legacy for others? Making the world a better place because we’ve touched it and made a change somewhere during our existence? Isn’t life all about doing good and not even knowing where the good leads to? You never know what you can say to reach out and inspire someone along the way. Because of what you say or do, someone might be inspired to take the first step towards a new beginning. I heard of such a situation just this afternoon: something my husband did has changed someone’s life for the better. He had no way of knowing that his willingness to be so open would help someone else reach out and move down the path of life.
I’m excited because someone is headed to a new place of discovery and mystery that will bring change and fulfillment. I’m alive!!!!
Sandi Patty sang this song and it was authored by John Mays and Jon Mohr.
Throughout my life, it has been music that has saved me from the insanity of life’s happenings. Music has been a vital part of my day. It has calmed me, allowed me to express emotions that I could otherwise not readily connect with, and it has allowed me to create wonderful things. There is one other wonderful thing about music: it is an equalizer.
My earliest memory of music is of my father playing the piano. I grew up hearing Grieg, Rachmaninoff, Mendelssohn, and countless others. Music was sometimes what I would drift off to sleep with. Music was also a chance for me to sing. I couldn’t do many things as a toddler, but I could carry a tune. I was singing before I could talk or walk. Because of my father’s music background, I was tested for absolute pitch, or perfect pitch, as it is more popularly known. I don’t quite have that, but I’m not far off from it. Considering the fact that I also have hearing loss, this isn’t too shabby. I’m proud of what I can do with music, and that I’m good enough to sing with a string quartet. It would be great to sing with an orchestra. What a blast that would be!!!!
I’ve sung in Italian, German, Spanish, and Latin. Music is a way of universal communication. Music, when done well, can shine as an example in any language with the beauty that it contains. I am discovering that there are beautiful recordings in the Dutch language. When I listen to them, the guttural Dutch sound becomes a thing of wonder. When the singer sculpts the words, well, there is an understanding that bridges the gap. Just like the “I love you” that is spoken in any language, the meaning cannot be misconstrued. So, “love in any language” becomes “music in any language.”
Music is the one thing that anyone can do!!! Think about it for a minute: You can teach someone to carry a tune and match the note. But, you don’t have to teach a child to open their mouth and sing. Singing comes naturally. Intelligence and physical ability are not factors here. Music is everyone’s gift of being heard.
Bridges to the Heart
Throughout my life there have been many bridges. One of the most powerful of those bridges has been volunteerism. During my life, I have been both a volunteer and the person on the receiving end. Both sides of the process are filled with positive feelings.
There are many ways of giving. Some commit to careers of service to others. Many people choose to give to an organization that represents something meaningful to them.
As I stop to think about the process that my future guide dog will have gone through, the first phase of that is the volunteer family who will take “my Eyelette” into their home and love and play with him, or her. What a gift!!!! Taking the time and the love to raise up a playful puppy in a healthy manner so that it can become a healthy guide dog for someone else!!!!
There is someone here at the Loo Erf who came in as a volunteer and he has affected me greatly. He loves what he does and it shows. The tricks and tips and encouragement that he has given me are gifts. It is a treat to have a braille lesson or a Dutch session with him. Personally, I think he has given this place a piece of his heart over the last ten years.
When I was in my 20s, I spent time doing an internship that involved those with mental illness. I gave several hours per week to those who were in need and in return I received a new view of life. They taught me to laugh in a new way. They taught me understanding. I learned so much from each of them. I still think of them and wonder where they are now.
We used to watch one of the animal rescue shows. Many of the animals were depressed and beaten down, but with the love and help of volunteers, they became “cute animals.” So we renamed the show “cute animals.” Volunteers are great!!!! Volunteers change lives.
My Pitch
Think about giving some of your time. The rewards are phenomenal. The sacrifice is well worth what the recipient will return to you in love and appreciation. Get out there on the web and Google up your loves, because somewhere out there, someone needs you to give to them.
I’ve spent many hours listening to and being listened to. I’ve communicated, at least on some superficial level, what I meant to say. I pause to listen, to tune in, but in my haste, I fail to hear the real sound that I am in need of hearing. I listen, but fail to hear.
You can learn listening skills that will, if you practice them, enable you to not “spring” too soon. You can learn to clarify what is being said, and the person on the other end of the conversation may come away feeling as if they communicated successfully.
We listen inquisitively, we listen out of curiosity, we listen in hopes that if we do so it will somehow all be over and we can say “I listened to you. What more do you want from me?” We listen with resentment and fear. We don’t really want to know. We listen passively. We practice “active listening.” We justify all of this as doing a good bit of what we perceive listening and hearing to be.
At the end of the person’s sharing, they may be frustrated by the lack of listening we displayed. Maybe they are right. Maybe we blew it all off, tuned ourselves out. Maybe we did a “good enough” job of listening, but it wasn’t good. Maybe we got lucky. Maybe they left feeling a bit better for having spent the time in conversation. They might feel any of the above, or they might feel something else, and we might not be given the chance to find out just how we did during that conversation. There are times when we only get one shot at listening and turning it into truly hearing what the other person is telling us.
Each conversation is a one-shot deal. It is my observation that for most of us, we spend time listening, but not hearing. Hearing is an art and most of the time we fail to do it very well. Hearing is acknowledging what is left unsaid, as well as the spoken portion. Hearing is seeing and feeling the richness of the soul. Hearing can be like unwrapping a gift box. There are no courses for hearing. There are only times in our lives when we are the person who hears in fullness and the person that is fully heard. These are the times that we remember most. To fully hear and be heard: to grock it (Stranger in a Strange Land by Robert A. Heinlein). This knowing is what hearing and being heard is all about: to have a fullness of understanding and to view the “gestalt,” or the picture in its entirety.
Recalling the conversation that sparked this blog title isn’t essential. The last comment, however, was the true gift: the gift that told me that for a brief moment in time, I mattered to this person. “You needed to be heard.” Those words became significant. That one sentence caused my soul to change. I had been given the gift of being heard and I knew it.
Hearing it Physically
Music is a major part of my life. I listen, I sing, and yet I don’t hear all of its richness due to a hearing loss. I can hear harmonies, but not the richness that is present. I miss what the composer intended that I hear. If I use headphones I can hear more, but not all of the richness that is present. Headphones can be a pain. To hear the richer and fuller sounds of the music, I must wear them. I must use them when I Skype. I must be tuned into the other person.
Recently I decided that I needed to revisit the hearing instrument market. I had worn one such gadget from the mid ’80s to the late ’90s. The gadget was big and not very effective. When I moved to Germany, I stopped wearing it. I would live without hearing because it felt better to not have that gargantuan thing in my right ear. I would also be rid of the background noises that were not wanted. Hearing was not pleasant.
Life changed and I needed to see if I could introduce a better quality of hearing pleasure into my daily experience. I found a center that does thorough screening for hearing loss and took that information to the techie who would do the actual work of finding the proper gadget for my sorry state of being. I didn’t feel very hopeful. My past experience was foremost in my mind.
The next week something wonderful happened: I heard a conversation and didn’t have to ask the person to repeat what was said. This was novel!!!! There were no raised voices. The experience was beautiful. Listening was effortless. I could once again hear the world around me.
I began to explore and found that I could have background music on and still hear!!!! I could listen as our three cats munched down their meals. Cats are noisy when they munch. I could listen to the sound of the water, which had always seemed so quiet. Once the initial adjustment to hearing old sounds in new ways passed, I was happy. I was excited about having something else switched on. That switch was triggered a week later.
That next Monday, my music-listening program went live. I heard music in a new way. I was ecstatic. I could hear notes that had gone missing!!! The guy told me about some technology that would enhance my hearing experience to even greater heights. I had him order the “Mini Tek.” NOW I WAS EXCITED! Oh, to hear the world in ways it was meant to be heard!
This gadget Mini Tek enables the user to have the sound transmitted directly to the hearing instrument. I would have a clear stream of beautiful noise!!!! I would be tuned in precisely!!!! I would hear my phone conversations while out and about and not have to ask the speaker to repeat themselves. Life was getting to be a bit of heaven on earth… UNTIL I found out that the insurance, which was paying for thousands of Euros of hearing pleasure, would not cover this 300 Euros of enhancement technology, and I was faced with having to return the box that I had only hours before opened so excitedly.
Returning that box to the Beter Horen (we’re now in Holland) was one of the most depressing days of my life. I asked my husband Jon to do it because I was too depressed, too sick in my heart of hearts, to take it back. So, for now the gift of really hearing music and out of the house phone conversations is not happening. For now it is hard, but not as hard, to hear. But this is just about physical hearing and not about the needful hearing.
The Gift Box
Fortunately, for the true hearing of the soul I don’t need a hearing instrument. I don’t need a Mini Tek; I need an open heart that is tuned to the correct frequency of another’s heart. The transmission will be clear. I will be shown what I am meant to see and hear. That is what the gift of being heard is all about.
The gift of being heard is about feeling the soul. We must not only hear the words of the heart, but we must see the landscape of the soul. Only with both true hearing and clear vision can we understand and grant the gift. Only then can we hope to understand the rich soul-scape that awaits us. Only then will we rejoice and be thankful that we unwrapped and shared the gift of being heard.
For the past 21 years there have been cats in my life. The first cat was Phred. Phred came with my current husband, so I got to know both of them before we married. Phred was wise, good, and a mighty hunter. Phred was an amazing boy who could sit in porcelain-kitty pose on the window box and just be the most precious, welcoming cat in the universe. This doesn’t describe him perfectly, but it is a start. For me, Phred was my son. Yes, a child. The one outstanding thing I must mention is his addiction to fishy-flavored flakes. IF we let him have some of those things, he would then go on a hunger strike and demand MORE. Never feed a cat something they can become addicted to!
Next came the princess, and her name was “’Roo,” as in kangaroo, due to her early kitty behavior. ’Roo, like Phred, lived on two continents, but had the distinction of living in three countries. The princess was an international kitty. ’Roo had the most amazing quality of not only being beautiful on the outside, but glowing from within. Quite frankly, I’ve never met another cat that I could say that about. ’Roo had so many good qualities and, like Phred, had a nice furry life.
When Phred departed in April of 1999, we decided to wait to see what happened before we became kitty parents yet again.
Barney came to us as a farm cat. He just wandered into our tiny house on the mountain and made friends with ’Roo, and by the end of the fall of 1999 we asked our landlord if we could take him in permanently. I’m glad we did.
Barney moved with us from Southern Germany to Eastern Netherlands. We lived in an upstairs flat. There was a landing that had a narrow banister. Barney could hold his ground in that space, even when the fierce wind was present. He scared us when he did it. We could imagine him blowing away. Barney was stronger than any kitty we’ve known. Hubby and I would have to restrain him if medication was needed, and we lost more than one battle with him. Barney was also very territorial, squirting up a storm in my new blue kitchen. He almost lost his life several times—cuteness saved him.
Barney loved yogurt and had a “yogurt voice.” I think he had a sixth sense for when the stuff was to be served. His little furry life was cut short due to heat stroke during the heat wave of 2003. We were devastated. It was then that I said, “I don’t think I can do this again. My heart is being pulled and my feelings for our kitty children are so strong.” I was learning something powerful about what our cats could be in our lives.
’Roo and Barney had been true friends. They would adventure together, causing us to wake in the middle of the night as they ran from one end of the house to the other. Barney became the defender of the territory and ’Roo, while older, let him do so. She kept dominance in a laughable manner and when she disciplined “The Boy” for crossing her, it was more comical relief than anything else. Barney got the message and fell into line as a good submissive should. I remember the first night ’Roo had without Barney. A cat entered our yard as if to take up the place, and all holy hell broke out. We looked out to see our princess running the little twerp off HER land. She still had it out there. ’Roo held the dominant place her entire life, but you never would guessed it at first glance. Her sweet and gentle personality was misleading.
Cats are just like children. When you get to know them, you discover a treasure chest of delightful happiness. Taking time to share in their little lives is the real gift. And now back to the narrative…
Hubby and I let ’Roo do her thing for several months. I wasn’t ready for a new cat. Barney’s death was so unexpected and my heart was being pulled into new forms of growth.
At the end of 2003 I began to talk about getting a Russian Blue. I had always wanted a Blue. We started to research them in more detail. I also knew a couple with a Blue and knew her to be skittish. This would not do in a cat. It was then that we stumbled on to the Britt. This was it!!!! During the holiday season we connected with breeders. The wait was shorter than I had planned for and I wasn’t certain if I was ready to “mommie” another kitty yet.
We met Penelope and her sister Tweety on a cold January day in 2004, and we both fell in love instantly. What was not to love? Penelope was perfect: designed just for me.
’Roo had had periods in her little furry life where she had been alone, but had matured and gained a sense of self. She was confident and ready to share her life. This was a healthy choice for ’Roo.
When we carried Penelope home with us for her first night away from her sister, we were concerned about how she and ’Roo would accept each other. We isolated Penelope and she cried. By midnight, ’Roo was upset and wanting to help, so we decided that we’d try it another way. We let ’Roo into Penelope’s space. They bonded instantly. ‘Roo mothered the child and Penelope grew into a sweet, beautiful kitty daughter. All was well! My days were filled with loving our two kitty daughters and life was happy with them. Both were adorable and wonderful to have.
Just as bringing a child into the world should take two agreed-upon votes, so should bringing a kitty child into the home. We had talked about a third kitty and, finally being in agreement, it was time for action.
Hubby was smitten by Tweety, Penelope’s sister. I called the breeder to let her know that when Tweety got pregnant, if there was a blue and white male, we wanted him. “Funny you should call,” was the reply, “because she is giving birth tonight.” And in the morning the call came: JRA Bob had arrived. And it was a good thing I had called because several others were also interested in Bob. We felt blessed that he would come to our home.
That year for Christmas, I gifted JRA Bob to my husband.
Now, we do know that Bob had already eaten through some hot computer cable. He tore up some curtains. He was a general troublemaker as a wee kitty. He was the ringleader who looked as innocent as could be, but there was always something brewing inside. And, this was while he was still with his mother!!!!! To this day, we are certain there was some brain damage: He never quite managed to grow up.
When we carried Bob home, we decided to let the boy out and allow the introductions to come naturally. There would be no isolating Bob. This time all holy hell broke out!!!! We thought Penelope would kill him. This was not good at all. Long story short, we put Penelope on Prozac. ’Roo, while irritated at times, was, for the most part, fine with the newbie.
Bob was the craziest, most curious, and all-around cat-like kitty to be had. There was never a dull moment with Bob. My kitty mommie hands were full!
When they were passing out kitty personalities, we figure Bob kept returning for yet another and another and the conversation had to have sounded something like this:
Bob: I want more personality.
Giver: We already gave you a personality and that is all you get. Now go away!!!
Bob: But this isn’t enough. I can’t be as happy, bouncy, lively, and beaming as I’m meant to be. I need more personality and I just know I’ll burst if I don’t have enough. I need so much MORE!!!! Please?
Giver: OK, JRA Bob.
Bob was right. Bob was loaded with love and affection beyond belief, and Bob was Gorgeous. “Beautiful,” in my mind, just doesn’t do him justice. Bob was the most beautiful of all of our cats and therefore he must have a different adjective. (I know males aren’t supposed to be gorgeous, but he was, and will always be our most gorgeous of kitties.)
We were forced to say our goodbyes to Bob in the last week of April of 2013. It was a sunny day and a day that was meant for Bob to be outside in the world. And we took him out, as we had done as part of our saying-goodbye ritual for Phred. Keeping him any longer would have been cruel. We miss him so much. There is a huge emptiness here that will never be replaced by another kitty. Bob was unique in the cosmos. I like to imagine a grand meadow where he can play and be with our other kitties. It’s a nice thought.
As I write this, Penelope has gone through many phases of progression after Bob. First, Penelope was alone and bored. She, too, missed the pest. (Her thoughts, not ours.) She faced being alone for the first time in her little furry life.
We hoped that she would discover a new self and become a new cat. Penelope is a cat’s cat. She is independent and does it all on her terms. She, too, is beautiful and sweet, and learned to become secure in her new environment.
She has shown us that she really needed to be an only kitty for a while. We have enjoyed her and hope to have many more years with her.
Our kitty tapestry has been filled with the rich warmth of individual cats who we will always cherish, and from whom we have learned so many lessons about life. Twenty-one years ago I did not understand the power that an animal could have to shape a human life and color it in beautiful ways. Each loss is real.
So goes the cycle of life and death. It enters, snatching souls of all types, human and animal. Those we love pass on and we are faced with the loneliness of not having them on a daily basis. Time and soul-searching can heal many things, but you can never go back.
I move forward and can only resolve to make the best kitty life possible for Penelope.
In thinking about all of this, I must admit I believe that there is a time and a season for all to end as we know it. I believe that each of us creates a future based on possibility.
Because we knew that Bob was destined to live an unnaturally short life, I created a mosaic of him that hangs where we can see him and be reminded of just how beamy he was.
I began this piece in 2013. I thought it had a different focus. I kept it in my draft section not knowing what to do with it. I can now publish it because I know the ending. It has to do with mental health issues.
More and more, we as human beings are discovering the power of unconditional love with our pets. We are finding that they are sensitive to many powerful emotions we, as humans, display. I’ve seen this with Penelope. If I’m really feeling sick she will come and be my protector.
I’ve seen this phenomenon with someone else in my life. Because of her dog, she is more engaged in daily life. While her depression is still present, she has a sweet, loving dog to help her calm herself.
Remember George? He has been affected by animals as well. I believe that it really does help his depression.
So, telling you about my kitties and who they are is a plug to remind you that cats and dogs can reach into souls that might not be reached with words.
Therapy for those who struggle with whatever-it-is-they-struggle-with can be made easier with an animal by your side.
Tonight Penelope will grace us with her presence and I hope that she will desire to snuggle up with me. I love her and the joy she brings to all who know her.
This is a memorial blog. In keeping with my husband’s wishes, and to keep knowledge about depression and its life-threatening effects alive and in the public domain, I am hosting his work on this site. Jon fought depression and understood it clearly. Here is hoping that his words will help others. Rest in peace, Jon.
Entries have been left unedited, just as he wrote them. I did add a link to a TED talk.
Book: The Man Who Wasn’t There: Investigations into the Strange New Science of the Self
I stumbled across this interview and found it completely fascinating. It’s something that I’ve thought a lot about – out of necessity – since my illness causes fundamental disruptions to my sense of ‘self’. I often say that that I use the pronoun ‘I’ only out of convenience. It really doesn’t have much meaning for me. Rather than being able to take it for granted, as I imagine most people do, I have a kind of methodically constructed definition of what ‘I’ means. It helps but it’s not a replacement for the real thing.
I’ll write more about this when I’ve read the book.
In the meantime, this interview with the author of the book is really worth reading.
*****Note the link was lost the aunthor’s name is Anil Ananthaswamy and here is his TED talk.
This May Seem Like an Ordinary Scene from Anyone’s Kitchen …
The photos at the end of this post may seem ordinary. But they’re anything but.
I generally use the diagnostic label Bipolar Disorder and ADD to describe my condition. But diagnoses in the mental health business are anything but precise.
In my case, there’s a component that I generally call just ‘scrambled thinking’.
It’s very hard to describe. I generally use metaphor to explain it to myself and to help me to understand it so that I can learn ways to cope with it more effectively. But, in general, just ‘scrambled thinking’ works.
In technical terms, it has to do with the so-called ‘executive functions’. This is the stuff that happens in the brain’s pre-frontal cortex, behind your forehead. It’s where you plan, think things through, prioritize, sort, sequence, organize. All that stuff.
Most people take for granted that that stuff just works. But, if you’ve experienced it when it doesn’t, you know that it wreaks havoc with everything you try to do.
I think one experience that most people have had that might make it a little more familiar is what happens when you lose a lot of sleep. Have you ever missed a nights sleep because you were cramming for an exam, preparing for an important presentation at work or because you were caring for a sick baby? You know that foggy, groggy, fuzzy-headed feeling of just not being able to think clearly? Imagine it being that way ALL THE TIME! That’s my life, more or less.
But, since I started using Ritalin over six months ago now, this has gradually improved. It’s far from a cure. It’s not even entirely manageable. But it’s improving.
So, back to the kitchen …
I like to cook. First, because I love good food. Despite the depression, which takes the joy out of most things, I can still enjoy good food. Second, we’re poor. So, to get good food on our budget, we have to make it ourselves. Third, It’s in the vein of being creative, inventive, building things, in a way, that’s always been rewarding for me.
Finally, it’s been a benchmark for how well my mind is working. How well my executive functions are working.
I suppose that for people with normal functioning brains, cooking may seem straightforward. But, for me it’s very, very difficult.
In the past, it’s been a very chaotic process. Even simple recipes were almost impossible and very stressful to cook. Recipes are generally just a linear sequence of steps. Think making pancakes. One bowl. Dry ingredients. Wet ingredients. Mix. Drop some on a hot plate and cook. That should be easy to follow, right? But, before I could master pancakes, I had to read and reread the recipe over and over again to understand the sequence.
Eventually, I got an App for my iPad called Paprika. With that I can record and edit recipes in a way that I can understand them. I have to carefully sequence and word them and break them up into steps that I can understand. This helps a lot. But, Paprika also allows me to search the Internet for recipes and download them into the App. The recipes on sites like allrecipes.com are formatted in such a way that Paprika sucks the list of ingredients and the instructions and even the picture in and creates an easily editable recipe. Often, the recipes are confusing to me. But, I can study them and edit them so that I can understand them and follow them better.
But, it’s still really difficult. These limitations create a lot of extra mental ‘overhead’ that consumes energy and creates stress that detracts from the rewards of the experience.
I suppose one way to think about it is that I have enormous difficulty seeing The Big Picture of a process like cooking a meal. I can hold the individual steps in my mind, sort of, but only one at a time. It’s extremely difficult to put them in sequence mentally. In fact, I get confused very easily and forget steps or get them out of order. I have to constantly refer back to the recipe even for things I’ve done many times.
Pancakes are relatively easy to cook now since I’ve done them so many times and it is a very simple linear process. But, many recipes are not linear. One of my favorite meals to cook is Chicken Marsala. It involves a frying pan and a sauté pan and slicing chicken and coating it in a flour/spice mixture and slicing mushrooms and spring onions and doing it in several parallel streams. It took many, many iterations to get this one down. But, even though I’ve also cooked this one many times, each time, I have to sit down ahead of time and carefully review the recipe first. And it’s still difficult to do. But, the results are generally worth it.
The other problem I have is that I can’t see the process from beginning to end. Only the first step. Then I might remember the next step and then the next. But, generally, I have to refer back to the recipe to keep track of things.
The upshot is that generally cooking is process of carefully reviewing the recipe as best I can and kind of vaguely understanding it and then just diving in and it just kind of chaotically more or less happens and may or may not turn out. I often feel like I’m flying blind. It often feels like, regardless of how many times I’ve cooked a particular meal, I’m doing it for the first time. It’s very frustrating.
The same applies to every other mental task I try to do, which is everything. I have to carefully think through almost everything I do, no matter how simple and frequently, it feels like the first time all over again.
So, here’s where the pictures come in. Over the years, at various times, I’ve had the strange experience that all at once it’s as if some kind of neurological switch has been flipped and something just starts working.
Last week, I was going to make good old American hamburgers. It’s something I’ve done many times and it’s always been the chaotic process I’ve described above. But strangely and unexpectedly it was different this time. What you see in the photos is how I laid out everything ahead of time before I started doing anything. It’s probably hard for you to understand, but up until this event, this was literally, neurologically impossible.
I didn’t even consciously intend to do it this way. It just kind of happened, as if it was just natural, which, I guess, for most people it is. I laid out the mixing bowl with the burger, the spices, the soy sauce and liquid smoke that would go into the burgers. I laid out the mushrooms that would be sautéed, the tomatoes to be sliced, the cheese to be sliced, the tools I would use and the bowls they would go in so that we could load up our burgers at the table according to individual taste. I even laid out a container for the organic waste. I got the grill down and even the flipper that I would use. And I put the sauté pan on the stove with the butter and wooden spoon. The fridge shows the pink lemonade in the white pitcher, already prepared for the occasion. You see the bowl and towel next to the deep fryer, ready to make the fries. Not shown is that the table is already set, including condiments, ready to use. That last is something that, prior to this, I would consistently forget to do until the last minute when everything was ready to be served. Interestingly, there’s an onion on the cutting board with one end cut off already. I almost dove into dicing it in the usual chaotic, out of order way I’ve always done. But, I recognised it and checked myself until everything else was ready.
I was able to look over the scene and verify that everything was ready and see in my mind the whole process, from beginning to end, more or less. A kind of calm came over me to replace the kind of almost panicked anxiety I would usually feel when undertaking something like this.
Then I pulled the trigger and everything went off without a hitch.
It was a magical experience.
That doesn’t mean that it will be like this from now on. I know from experience that this will come and go. What it does mean is that this is a new high-water mark and a clear indicator that things are improving and hopefully, as time goes on, this will become the norm, not the exception, and I’ll have access to this kind of clear thinking in other areas as well.
***** Note that the images did not transfer. I’ll work on it.
What Do You Do When Someone Tells You They Are Suicidal?
Recently a friend of mine asked for my input about a situation with a relative of his.
He had been chatting with him online and the subject of depression came up. This relative expressed that he was struggling and said some things that were concerning. He spoke of suffering from Depression, Bipolar disorder, PTSD and having suicidal thoughts. He also said that he coped with the suicidal thoughts with humor.
Hard to know what is going on in chat, right?
So, here’s what I told him (edited). I thought it might be useful to someone.
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I don’t think you should *ever* take it lightly if someone is talking about suicide or expressing thoughts about persistent depression or mental health issues.I also don’t think you should just take them at their word or accept their reassurances that they are coping successfully, whether it’s with humor or otherwise.
I’d first want to get an idea of his current state. Is he in some kind of immediate crisis? Is he in a dangerous situation? Has there been a trigger of some kind? Some kind of stressful event? Is some kind immediate intervention is important? If you suspect that some kind of immediate intervention might be necessary, don’t hesitate.
Also, I think the medium of communication can make a difference. You miss the a lot of non-verbal information in chat, email, etc. But, sometimes people will talk about things in writing that are difficult to talk about in real-time conversation. Be sensitive about using the right combination of methods. Switch to the phone if you think it will help.
If it really does sound like an emergency, urge him to contact friends of family or call the National Suicide Prevention Lifeline at 1-800-273-TALK. Unfortunately though, if someone is in an acute suicidal crisis, it may not be possible to persuade them to take action. That degree of depression and crisis can be emotional and mentally paralysing. He may not be able to think clearly enough to take action even if he wants to. You can’t be sure if he will follow through. If you think he is in genuine danger and is resisting taking action and you can’t find friends or family to intervene, consider calling emergency services and talking to them. You can find the suicide prevention number in the front of you phone book. If it is truly urgent, as in, he has gun or a knife or is on a ledge threatening to jump, call 911 and keep him on the line. They are equipped to deal with this kind of thing.
If he’s not in crisis, try to get an idea of the broader picture. Is he functioning well? Working? Engaged in normal activities and interests? Spending time with friends? Or, is he deviating from normal life activities or withdrawing from them? Is he aware of any changes? Does he have insight that things are different, for better or worse? People who have insight into their situation are more likely to recognise problems and seek help. You can be discrete by carefully questioning him or if you have contact with his family or friends, you can contact them.
He’s referring to Mood disorders, clinical depression and PTSD. That’s a combination of things that suggest to me some kind of complicated history of environmental and/or clinical issues. This is pretty serious stuff. That also means it means it might be difficult to treat or resistant to treatment. It sounds like he’s got some level of knowledge about it and has put some thought into it. I’d be wondering first if he is self-diagnosing (Internet of whatever) or if he’s in treatment and diagnosed by a professional. The potential seriousness suggests he needs to be in treatment. If he’s not, is he resistant to getting treatment? If so, that’s a red flag to me. If he is in treatment, is he confident in his health care provider and treatment? Psychologist, psychiatrist, whatever. Does he feel like he’s improving? Does he want to get ‘well’, whatever that means to him? How hopeful is he about that? How committed is he to it? How stable is he? Is there the potential for serious escalation? If there’s a risk, Is there an escalation plan? For example, is there a trust level with his providers where he would contact them if his condition escalates? Does he have a social safety network that is aware of his condition that he would talk to if he were to escalate? At the point in my recovery when I was unstable and couldn’t think clearly, I had a placard posted on the wall in my house with instruction in large print for what actions to take and who to call.
It’s hard to talk to someone about this kind of thing if you don’t have some experience with it. The stakes are high and you’re not sure what to say and the effect it will have. Trust is crucial. Cultivate it. It sounds like he’s willing to talk to you pretty openly, which is a big deal. Be sensitive to the fact that It’s very hard to find people you can trust to talk to when you have this kind of problem. Most people don’t know how to deal with it. I think a lot of people suffer in silence because of fear of rejection, judgment, stigma. There is often an increased level of distrust, defensiveness, fragility and vulnerability that is heightened as a part of the illness itself. This kind of condition seriously affects how you see yourself, your value, whether you are deserving of support and your ability to advocate for you own care. You can feel like you are not worth saving. It can feel like the situation is hopeless and the problems bottomless and that no one can help you. You feel like you have nothing to offer anyone and that you are only a burden. So, you’re not worth the effort, sacrifice and investment in time and resources to support you.
The visible reality of physical illnesses tends to attract attention, concern and support spontaneously. This kind of illness is different. It’s hidden and it can make you feel like it’s your fault that you are in the situation you are in and you don’t deserve support. It makes it difficult to reach out. It can be a huge relief when you find someone who is simply kind, gentle, sincere, patient, empathetic and, perhaps most importantly, non-judgmental. Gently, sincerely telling someone that they are unconditionally loved and valuable, even when they resist it, goes a long way. Try to keep in mind that the resistance to your efforts is probably a part of the illness itself – a product of how the illness makes them feel about themselves – not a lack of appreciation.
To give you a real-world example, 20 years ago I had to gradually convince a friend to get help over a period of several months. She knew something was wrong but thought she was handling it. I used the ‘Depression is as serious as cancer’ argument with her and that finally got her to do something. I eased the way for her by arranging for a consultation for her with my therapist. She ended up being referred to a psychiatrist and started on medication. She’s told me many times since that she’s sure that saved her life.
I hope that’s helpful. If there’s anything else I can do to help, let me know.
Six Months
Six months ago on February 18th, I started taking Ritalin (in addition to the rest of the cocktail that manages my condition).
It has changed my life.
I want to go into some detail, but as it always is, my mental energy level is unpredictable and it’s just not up to it at the moment.
But just briefly, I recently posted about my Mental Health Scaleand I will use that to illustrate how things have changed.
I didn’t really see this clearly at the time, but prior to starting Ritalin, my score on the MHS ranged pretty consistently from -7 to -9. I would say at the time that it got up to 0 but never got into the positive range. It’s true that it never got into the positive range, but in retrospect, I can see that it never really got to 0 either. The best I did was maybe -5 and that took immense and unsustainable effort.
I had resigned myself to this. I didn’t expect it to improve much and I believed it was unsustainable. I was committed to holding out as long as I could and doing everything I could to stick around but I did not expect to last forever. I believed that suicide was inevitable unless things changed.
Now things are different.
I think there’s a good chance that I can avoid suicide.
I think there’s even a chance for stability and semi-normal mental health.
I would say that my MHS ranges typically now between -8 and +3.
NOT ideal, but that’s a huge improvement.
I still have spikes to -9 and occasionally -10. But I also have occasional periods where I’m at maybe +5 or +6.
At first this happened only in the first couple of hours after taking the Ritalin. It would kick in after 20 to 30 minutes and then a couple of hours later, I’d suddenly start to plunge back deep into the negative. A second dose would not seem to do anything.
But, I’ve experimented with dosage and timing and stuck it out.
Often it has been VERY difficult. It’s often seemed more painful to experience what it’s like to be almost normal and then return to the depressed state than to just stay depressed. The contrast just makes it more clear how horrible the depressed state is.
It’s like I had a certain equilibrium in the state I was in. It was horrible and unsustainable and I almost certainly wouldn’t have survived it long-term, but it was familiar and I had ways to deal with it.
Ritalin disrupted that equilibrium. For months, I wasn’t sure if I could find a new equilibrium. EVERY morning is still a monumental challenge. It doesn’t matter how good I felt the day before, I always wake up in a -8 or even -9 state. Anyone who has experience Depression with the big D probably understands it when I say that it is almost impossible to get yourself to do even the things that you know will make you feel better. So, every morning, I have to absolutely force myself to take this medication that I know will pull me out of this horrible state.
But, it’s gradually getting easier because several things are happening.
It used to be that the effect of the medication came on suddenly and then stopped suddenly after a couple of hours and then it was back to blackness. Having the lights go out was worse than not having them going on in the first place. Now, the effect comes on more or less as fast, but it lasts longer and tapers off gradually over a period of hours.
It used to be that a second dose had no effect. Now, sometimes, a second dose does help, but not as much as the first dose. So, through further experimenting, it may be possible to further optimize it.
Over this period, despite the ups and downs, there has been long-term improvement in both emotional and mental function. I thrive on improvement. As long as I see improvement, however small, I can keep going. That’s why the resignation to my state prior to Ritalin was so dangerous. But, I’m learning to recognize and deal with a pattern of punctuated improvement, plateauing and then punctuated improvement again.
My confidence that this is for real and that I will continue to improve is increasing.
So, I can feel good and optimistic, at least part of the time now. For at least short periods of time, I can see how to solve the huge backlog of problems I have to deal with after many years of illness. For short periods of time, I can actually enjoy things.
And, at least for short periods of time, for the first time in my life, I feel happiness.
I guess that’s worth something.
The Mental Health Scale
Have I talked about my Mental Health Scale before?
It’s how I tell myself, and others, what my mental health status is. I often can’t do that in conventional terms because my mind and emotions don’t work in conventional ways that most people can understand. I don’t even understand them very well. But, I can kind of generalize. I’m one of the lucky ones who, while I suffer from a condition that confuses my emotions and thought processes, has some insight into what’s ‘normal’. So, the scale is built on that insight to kind of indicates generally how healthy and/or unhealthy my state of mind is in terms that others can understand and that help me to understand where I am in relation to ‘normal’. It’s also an indication, generally of how well I can function at any particular time. And it can be an indicator of my risk level for dangerous behavior and therefore when intervention is needed, such as changes in medication, therapy or, if necessary, hospitalization. Fortunately, in the almost 30 years I’ve been in treatment, while I’ve been on lots of medication, hospitalization has only been necessary once.
So, the Mental Health Scale goes somethings like this:
It ranges from -10 to +10.
The ‘normal’ range is from approximately -5 to +5.
+5 is a typical good day. You feel good. You are looking forward to the day. You’re optimistic, hopeful and maybe even happy. You have interesting things to do. The future looks reasonably positive. There’s nothing excessively stressful happening. You’re not overly anxious about anything. You’re enjoying hanging out with friends, family, your partner, your kids. You’re enjoying leisure activities and hobbies. Maybe you’re enjoying binging on your favorite TV series on Netflix.
0 is neutral. You’re not feeling up or down particularly. Things are just ok. Maybe this is how you feel when your just waking up and having breakfast.
-5 is normal discouragement, anxiety or sadness. Your overly tired. There’s too much work to do and you don’t know if you can get it all done. You’re boss is hassling you. Maybe things are a little rough with your partner. Maybe your kids are giving you problems. Maybe you’re depressed about Donald Trump leading in the GOP polls.
From +5 to +9 is the really good range. I don’t have much experience with this range, so I’m kinda speculating. But I think you would put things like getting a promotion, getting a new car, a dress or a cat in the +6 or +7 range. Maybe going on a first date with someone you really like or celebrating your birthday.
+8 to +9 are really special days. This is graduating from college, falling in love, moving into your first house.
+10 is a perfect day. Getting that perfect job, getting married, having a baby.
I’m more familiar with the other side of the scale.
On this side of the scale, -5 to -7 is where you start to cross over into crisis. Maybe work is not going well. You’re in danger of being fired. Maybe your relationship is on the rocks. Maybe your child or a friend is sick and you’re worried it’s serious. Maybe your wrecked your car. You’re stressed, anxious and depressed. You’re really sad. You’re not sure how you’re going to deal with this. You’re life is going to change. But, you think you can handle it. You’ll find a way.
Beyond -7 going down to -9, things get more serious. This is something more like, you have lost your job. What are you going to do? You’re marriage is breaking up. Your partner, a parent or a friend dies. This is a serious crisis. You don’t know how you’re going to deal with it or if you can. You may start to question everything. Values. Priorities. Goals. Your decisions, plans and strategies. The world is turned upside down. It’s more than sadness. It’s depression, hopelessness and despair. Somewhere in this range is what I call the ‘soft-suicide line’. You’re not necessarily really thinking about suicide but you are starting to think about whether life is really worth living.
By the time you reach -9, you can’t deal with it yourself. You’re losing control of your thoughts and emotions. Your ability to think clearly and your judgement is deteriorating. The depression, hopeless and despair are turning into total, seemingly inescapably blackness. You’re starting to seriously question whether life is worth living and you may be having serious suicidal thoughts and may be thinking about suicide plans. You are in danger. You may try to cope with it by ‘self-medicating’ with alcohol, drugs, sex or other high-risk activities. You need outside intervention from friends, family, professional support, or you’re likely to slip further, possibly past the point of no return.
-10 is the most serious. This is, simple put, the hard suicide line. You are in mortal danger. You *are* past the point of no return. If you reach this level, and stay here for any length of time without intervention, you will kill yourself. I think everyone has built in resistance to suicide and some reserves even at this level. But they are finite and won’t last, unless there is intervention.
I’ve logged a lot of time in this state. So much, and during some periods for such long stretches of time that, honestly, I really don’t understand how I survived it.
-10 is very, very dangerous. But, many people don’t know that there are people who also get into danger at the top of the scale too. For healthy people, +10 days are wonderful but they are transitory. Too much +10 is very dangerous though too. This can be the result of the euphoria of drug use, such as cocaine, for example. But, this is also a characteristic of the Manic Phase of Bipolar Disorder. People who are manic may appear happy, positive and euphoric but they can also be very unstable. They can be prone to very poor judgement and risky behavior. And, much like it is with drug use, someone in the Manic Phase, can suddenly crash into the Depressed Phase. Someone in a +10 state can suddenly and unpredictably crash into a -10 state. This is why Bipolar Disorder is arguably the most dangerous mental health condition. It has a very high mortality rate. Approximately 50% of people with Bipolar Disorder attempt suicide one or more times. And about 25% die by suicide.
I’ve experienced the Manic Phases a couple of times. The euphoria is intoxicating and it was a wild, fascinating roller coaster ride. Your brain is on fire and you can do, think and feel things that you can’t in a normal frame of mind. It’s a kind of window into what our minds are truly capable of. But you can’t control it and I’m a first-hand witness to the kind of collateral damage that someone can do to themselves and others in that state. For all the excitement, I would never want to repeat it.
Sometimes, it’s hard to tell the difference whether someone is in a dangerous +10 state because of drugs or because of Bipolar Disorder because people with Bipolar Disorder, especially when it is undiagnosed and untreated, sometimes self-medicate with alcohol, drugs, sex or other things in order to cope with their mood swings.
Having said all of that, I kind of imagine that the ideal would be to range from 0 to +5 day to day with occasional dips to -3 to -5 and occasionally ranging up to +7. Hopefully there are special events that reach up toward +8, +9 and even +10. And, while inevitable, hopefully events that lead to dipping below -5 are rare. I would wish that going into the -8 and -9 range is extremely rare. I wish that no one ever had to deal with -10.
But everyone is unique. Each individual has their own pattern and there are countless factors that influence it.
In future posts, I’ll explain more about this and try to use it to help you understand what people with mood disorders experience and how it is different from ‘normal’ emotional experience.
My Mission and Vision for Jon’s Hideaway
It’s been hard to find the help I needed to cope with this dangerous monster of an illness I live with.
It’s taken years … decades … to find the right combination of professional help, medication and other resources.
Finally, it seems to be paying off. Although it is still a roller coaster, it is gradually leveling out. It’s not easy. A healthy person might think that now that I have an effective treatment, it would be easy to put this behind me and get on with life. That might be true if I had been healthy once, gotten sick and now I’m getting healthy again. Maybe, I should know how to be healthy and be able to pick up where I left off. But, in my case, I never was healthy. My depression started at a very early age and my life has revolved almost entirely around coping with it with little left over for anything else. So, I have to learn how to be a healthy, functional person, essentially from scratch at 55 years of age. It reminds me of accounts I have read of blind people receiving their sight later in life. It is a complete life transformation.
But, the ‘mood positive’ state on my new medication is really wonderful. And it gets gradually better and better and I am gradually gaining more confidence that it is real and that this is going to last.
The ‘mood negative’ state is still very difficult.
The two states are so very different in so many large and small ways.
Out of this comes what I think is a chance to carefully observe the difference and document it and share my experience.
I’ve been struggling though to understand why I feel such a passion for writing about my experience. It’s very difficult. It requires being painfully frank and open. I get positive feedback which is essential to being able to have the strength to do this but I know that, this being the Internet, I’m going to get negative feedback too.
Then i saw this article on Upworthy and which draws from Stephen Fry’s brilliant documentary about living with Bipolar Disorder, ‘Stephen Fry: The Secret Life of the Manic Depressive’ which I saw a couple of years ago. You can find it on Youtube here and you might be surprised at some of the people who he talks to about their own experience.
What really struck me though was this statement at the top of the article:
Every fearless ambassador for mental health is a lifesaver.
That sentence keeps echoing through my mind. A lifesaver. Is it really that important? I believe it is.
I have often said: Depression is as serious as cancer. When I was visiting my older sister in the US recently she reminded me that I had told her that almost 30 years ago. She said that that was what convinced her to seek help and she told me that it saved her life.
It’s really true that helping people with mental health issues can make a difference between life and death.
I put those things together and realized that this is why I do this.
So, Here’s what I want for Jon’s Hideaway:
For it to be a place to go to hear about my experienceand see that it’s possible to survive, cope with, manage, overcome and live a full life with a mental health problem. While this is still very much a work in progress for me, I have periods now of real happiness and well-being. I’m learning to cultivate those periods and expand them. And they help me to cope with the other times when things are not so positive.
To provide a collection of curated resources to help those with mental health issues. It’s hard to navigate through the endless supply of available articles, blogs and websites to find quality information, especially in a format that is easy to understand when you mind is not working normally. In my view, people with mental health issues need concise information with substance to keep them moving and improving when it is difficult. This will include educational and reference material, sources of inspiration, biographical material about people who have coped successfully and resources about new or upcoming treatment options.
To provide a collection of practical tools for every day use. Resources, inspiration and stories are helpful but you also need tools you can hold in your hands, literally or figuratively. I have had to be proactive, creative and inventive to come up with ways to live with this thing. I’ll share those plus anything else I find that others have used.
Those are the basics.
I’m not a crusader or a rescuer.
Just someone with some knowledge and experience that I hope might be helpful. And I just hope that it will be useful to someone and make a difference.
Depression and Anxiety Made Visible
I have always tried to capture my experience with Depression and Anxiety in writing, mostly through metaphor. I’ve thought that music might be a good way to convey it but that requires skill I don’t have. I do make extensive use of abstract visuals such as charts, graphs and diagrams to both represent it and cope with it. I’ve thought of using painting or graphic design … but again, the skills. But for some reason, I never thought of using photography until now.
I wonder if these images mean something to someone who has not experienced Depression or Anxiety, but they resonate deeply with me.
Please visit Katie Crawford’s site to see the whole collection
Well, I’ve hit the double nickel. At 16:30 my time, here in the Netherlands, I will have arrived on this planet fifty-five years ago.
It’s been quite a ride. It’s amazing I’ve survived it. I don’t really understand how I’ve done it.
I don’t remember anything from my first five years but photographs from that period seem to show a normal, happy, healthy kid. But, in my earliest memories from kindergarten and first grade I am already struggling socially and experiencing serious depression. It’s a long story that I intend to write about as time goes on and I hope it’s helpful to someone, at least to know that they’re not the only ones and that maybe there’s hope to overcome it.
Fast forward to 1985, three decades ago, and I was descending into the worst 3 years of my life from ’86 to ’89 and honestly, I did not expect to survive another year, let alone till now, three decades later. It’s staggering and incomprehensible to to me that it’s been this long … that I’ve been on this long detour this long.
I call that period from ’86 to ’89 ‘The Dark Ages’. I am a native Californian, but in 1985, I was living in Utah, one of the last places on earth I even wanted to live and my mental health was deteriorating rapidly. In early 1986 it was becoming dangerous, and on July 4th I left Utah, and returned to California for treatment. My first diagnosis was schizophrenia, one of the darkest and most terrifying of all mental illnesses. I was told I it was incurable and that I would have to accept that and adapt to as best I could. And I was put on heavy medication with terrible side-effects. I was devastated. But, I refused to accept that diagnosis. As fragmented and impaired as my mind was at the time, I didn’t believe the diagnosis was correct and I had reason to question the competence of the doctor who diagnosed me, despite his impressive qualifications.
Had that turned out to be an accurate diagnosis and prognosis, I am virtually certain that I would have chosen not to live that way. Not because of the limitations that it imposed – I probably could have adapted to that – but because of the suffering it caused. The pain I was experiencing at the time was almost unendurable and I think it would have been unendurable long term. But there was something in me that comes from some source that I still don’t understand that wouldn’t allow me to give up. And I clung to a few specific reasons why I was not going to let this thing kill me.
Fortunately, although my symptoms were severe enough to mimic schizophrenia, that was not the underlying cause. Although diagnoses in the mental health field are of limited value, we’ve settled on Bipolar II with AD(H)D, which is generally more treatable and/or manageable. But that’s another story.
The Dark Ages came to an end in ’89 when I found the first medication that was effective and the long, slow climb out of the illness began. I was finally able to return to work full-time in ’94 and had a period of relative health and productivity for a few years, but for complicated reasons, it was not sustainable and another crash came in the 2008 to 2010 range, though it was not nearly as severe. Since then I’ve been on another slow climb. Even a year ago – In fact, even 3 months ago – I was saying that I was not in immediate danger but my lifetime risk of losing the battle with this condition was very high.
But, now I feel genuinely hopeful again. In the past, after each new round of treatment that seemed to provide a little hope, I would ask, ‘Is this what it’s like to be normal?’ or, ‘Is this what happiness feels like?’. But after a kind of honeymoon period, it would prove, indeed, to be a real improvement but not a sustainable solution.
I seem to have the right formula now though. I feel ‘normal’ – and even ‘happy’ sometimes – for at least for a few hours a day, and that helps to tank me up to deal with the condition the rest of the time. I don’t have to ask myself, ‘Is this normal?’ When I’m in that state, it’s self-evident.
Now, I just have a decades-long backlog of accumulated experience to process that’s been on hold while my attention has had to be concentrated entirely on this other little problem.
And I have to figure out what to do with the rest of my life. And I honestly, really have no idea what to do about that … at present I feel like an almost entirely blank slate as far as the future is concerned.
I’m still scared to death that this isn’t going to last, but I think that’s probably irrational. Living with a condition like this becomes a kind of lifestyle and breeds an entire worldview and way of coping with life which isn’t easy to change. It can be hard to adapt even to positive changes in your life.
I hope by next year, I’ll be past that and that the future will be a lot more clear and I can celebrate July 4th as a true Independence day.
The Anti-Food Babe, Cross-Cultural Wisdom, Tolerance and Being an Expat
I’ve been reading Kavin Senapathy for a while, mostly because she’s the Anti-Food Babe. But I was struck by this article. I’ve added the comment that I left.
Grounded Parents | Go Home Little Terrorist!.
I’ve been living in Europe for the last 17 years. There’s a phenomenon that’s familiar to many expats that for the first couple of years, you go through phases of having your eyes opened about the world beyond your shores. 1) Everything is new and exciting and different! 2) I can’t get Cap’n Crunch and bacon, houses are small, gas is way too expensive! And there are all of these other differences I don’t like. 3) You start to realize there is good and bad at home and abroad and hopefully learn to take the best from both. This takes a couple of *years*. It forces you to recognize that your default values are not universal and forces you to come to terms with other cultures who see things differently. Ideally, you come out of it appreciating the differences and realizing you don’t have a monopoly on the good. And it helps you to better understand the complex dynamics in world affairs and that rest of the world doesn’t see the US as the beacon of pure goodness that many Americans see it as – sometimes for good reason. But it’s not just Americans. All nationalities tend to favor their own perspective. I often say that I think that the world would be a better place if everyone lived outside their own country of origin for at least two years. Maybe people would be more understanding, accepting and balanced in how they understand the world and more likely to cooperate to solve our increasingly complex, globally intertwined problems.
A Day in the Life
This is extracted from an email I wrote to my sister about what is happening in my life as a result of the new medication I have started. I always face a conundrum when writing about my experience. I want passionately to write about my experience with this condition because it is 1) highly therapeutic for me and 2) I hope it might benefit others struggling with the problem. But to do so, I have to write about very personal things in a very public way when I, partly because of the nature of the condition, I don’t have a very thick skin. Call it fear of the insensitivity of the public. Whatever. I lean toward doing what is important to me, come what may.
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Last Wednesday, I had a particularly good day. It was a new high-water mark. I felt a kind of ‘normal’ that I don’t remember feeling before. This probably won’t make sense but I felt ‘whole’ and ‘solid’. I felt a kind of confidence that things were going to work out and that I could solve whatever problems we have. I literally felt physically like I could stand up to my full height and say, ‘I have done well’, without needing validation. Otherwise, I feel kind of scrunched up. I want to pull into myself like I want to just be invisible. And I feel the need for constant reassurance. I felt I could see what I’ve been through in a healthy perspective and that I have done remarkably well with what I’ve had to deal with. I was also able to see what living with the depression has done to me psychologically. I’ve been intending to write a blog post called ‘Depression as a Lifestyle’. It would be along the lines that when you have a debilitating condition it can breed a kind of dependence – despite your best efforts – that it unhealthy and, for someone like me in particular who is ambitious and wants to be productive, very painful and full of conflict, shame, guilt and lots of other stuff. This high-water mark period happened to overlap with my session with my therapist and I talked to him about it. I always record my sessions and I have that as reference if I need it.
These positive periods only last for a couple of hours at a time right now and a really positive period like that one hasn’t happened again since. But I know it did, so that is a new reference point. It’s the memory of reference points like that, however rare they’ve been, that has helped keep me alive.
Prior to starting the medication I would wake up early but I was in deep, deep suicidal depression. If I got up, that would persist for the rest of the day. If I went back to sleep for a couple of hours, I would have intense, technicolor dreams that were very topical to what was going on in my life and actually kind of positive and therapeutic. Then I would wake up and be relatively stable and able to function somewhat, although it was very difficult. I try to maintain a work-like routine. I do a lot of reading and ‘studying’ as much as I am able and I choose projects that require work-like activities. But, my concentration and comprehension was so bad that, for example, I would start reading and article and just have to give up after a half a page or so because I just wasn’t getting it. I’d file it in the ‘read later’ folder and hope to come back to it. But that folder just kept getting bigger. The frustration, anger, pain and discouragement at this was enormous.
Now, with the medication, I’ve set an alarm for the first time in forever. So, that goes off at 8:30 and I take the medication and then I just lay there and think about the day and witness the miracle while my mood improves and my thinking clears up over the next 15 to 30 minutes. I actually want to get up and I have a sort of normal energy level. Then I can go about doing things and getting them done in a kind of normal way.
It seems like I’ve needed more rest in the last week though. But, I have to expect that it’s going to be up and down. That’s what it’s like for everyone, right. My range is just skewed way into the negative.I’m getting more confident that the medication is going to continue to work. But it is very scary. As my mind clears up, I can see more and more clearly what the ‘other’ state of mind is like and I just don’t know how I’ve been able to endure it. And I don’t see how I could go back to that. I really was at the point of running out of reserves again prior to starting the medication. Had, I not started the medication prior to Mom’s death and then David’s suicide, I don’t know if I could have handled it.You might think that I’d be jumping up and down and saying, ‘Yay! Fantastic! This is wonderful!’ Sometimes I do feel a little bit of that. But, the thing is that because my mind and emotions are working more normally, it enables a lot of stuff to come up that was otherwise buried. My memory improves, for example, so I get bombarded by a lot of very painful memories out of the 30 year backlog I have that I haven’t been able to process and I have to deal with that. I can think more clearly so I can see more clearly how fragile our life situation is and how uncertain our future is. So, there’s that to deal with. Lots of things like that. I get easily overwhelmed by all of it because my mind doesn’t have the structure yet to break it down into manageable, step by step pieces. But, with help, that’s coming along.
I am cautiously optimistic, at least during those periods when the medication is working.
Does Ritalin Change the Behavior of the Brain’s Stimulus Barrier?
I highly recommend that everyone study a little basic neuroanatomy. You’ll be amazed at how much insight it gives you, not only into how the brain works but how your mind and emotions work and into the experiences you have every day that you normally take for granted.
For example, did you know that only a small percentage of the input from your senses makes it into the brain? Most input from the body, eyes and ears is discarded. It’s the job of the thalamus to prioritize this input and decide what gets through. Here’s an illustration of the Thalamus:
You can see that it is at the top of the spinal cord where it receives the sensory signals from the body. In addition it receives signals from the retina in the eyes and the cochlea in the ears. It then decides what to do with these signals and selectively sends them on to the relevant brain areas. Signals from the eyes, for example, are sent on to the visual cortex, which is at the back of the brain. Smell is the only sense that is routed directly into the brain, bypassing the thalamus. Some speculate that this is why smells are so powerful at evoking emotional responses and triggering memories.
But, getting back to how the thalamus regulates sensory input, have you ever wondered how it is that you automatically turn to see what’s happening when you hear a siren or a baby cry? It’s the thalamus that is involved in deciding that this kind of sound needs immediate attention.
How is this relevant to mental health?
One theory about what goes wrong in various mental health conditions is that there is a problem with the thalamus in that it either doesn’t pass enough information on to the brain or it lets in too much. The thalamus provides a so-called ‘stimulus barrier’ which, in this case, does not work normally.
Now, this is my own hypothesis, based on my own observation of my own internal experience with my condition.
This is a bit difficult to explain. To try to understand how this works let’s try a little math. As stated above, the thalamus only passes a small portion of the signals entering into it on to the brain for further processing. So, let’s start with the total 100% of the signals coming in through the senses and lets say that a normally functioning thalamus discards 95% of those signals, passing the remainder on to the brain. So, the brain normally receives only 5% of the total input. That 5% is what the brain normally processes.
Now, let’s say that the thalamus is not working quite right and discards 96% of the input instead of 95%. That’s only a 1% difference and may not seem like it would make much of a difference. But, how does this affect the amount of information passed on to the brain? Now, instead of receiving 5% of the total input, it’s only receiving 4%. That’s not 1% less, but 20% less than the brain normally receives. Conversely, if the thalamus discards 94% of the input instead of 95%, that’s only a 1% difference in the stimulus barrier but the brain now receives 6% of the total input instead of 5% or 20% *more* information than normal.
The point is that small changes in the stimulus barrier make much larger differences in what the brain receives and has to process.
This may explain what happens in some mental health conditions. A large body of experiments has shown, for example, that the brain doesn’t deal well with having inadequate stimulation. In sensory deprivation experiments, people soon begin even to hallucinate, as if the brain is making things up to compensate for being starved for external stimulation.
And what if there is too much stimulation?
Maybe this accounts for what I experience much of the time. I am hypersensitive to my environment. I notice every sound. I have a low tolerance for disorder and clutter. My office is painted in forest green because light colored walls are ‘too bright’. I generally keep light levels low. Going outside is generally overwhelming. Just too much stimulus. A short walk around the block is usually all I can take. I prefer overcast days and night time to daylight. Shopping is exhausting. When I try to go to sleep at night, the opaque blinds have to be pulled but even the small amount of light leaking in around the edges is too much. So, I have a pair of motorcycle goggles that I have blacked out to give me total darkness. I can hear Gail’s every breath. Sometimes I have to wear ear plugs to be able to sleep.
Sometimes even during the day, it gets to be too much. I have another pair of motorcycle goggles with lenses that have the same prescription as my normal glasses. They block my peripheral vision, reducing stimulation, and sometimes putting them on is like taking a tranquilizer. I pull the blinds in my office. I close the door. Sometimes music is helpful. But, sometimes during the day, I get so overstimulated, despite the countermeasures, that I have to go into the bedroom, turn out the lights, put on the goggles, put the ear plugs in, and just lay there in the dark and the quiet until the overstimulation subsides.
Ritalin helps sometimes too. After the 20 or 30 minutes that it takes to take effect and for the couple of hours that it’s effective, I am much calmer. The overstimulation subsides and I can function more or less normally. This isn’t what you might expect from a medication that is actually a stimulant. In fact, it’s chemically similar to cocaine! This is characteristic of the ‘atypical response to stimulants’ that some people like me have who have AD(H)D. One therapist told me that when a client reports that cocaine calms them down, they screen them for AD(H)D and their response to medication like Ritalin. It’s hypothesized that sometimes people use drugs like cocaine to ‘self-medicate’.
This leads me to hypothesize that Ritalin is affecting the stimulus barrier. Ritalin *is* a stimulant, but the brain works in complex ways. Maybe Ritalin is stimulating it in a way that adjusts the thalamus so that it discards a little more input than it otherwise would. So, by nature of how the stimulus barrier works, my brain is getting significantly less input and so it doesn’t have to work so hard just to do it’s normal job.
In this way, Ritalin, rather than inducing a ‘high’, induces a ‘normal’.
It’s a hypothesis that I need to research further …
Boundaries, Constraints, Overhead, Achievement and Health
My life has been overwhelmingly dominated by my mental health condition. It affects *every* conscious thought and feeling. It affects the pace and organization of my thoughts. It even affects my physical coordination. It has bounded and constrained everything I’ve experienced and done.
I think that it’s probably hard for healthy people to understand this, but maybe it shouldn’t be. They are also bounded by their subjective conscious experience. They go where their minds take them, partially carried by subconscious brain activity, which influences us much more than most people are aware of, and partially by conscious choice. But they are constrained by where their minds allow them to go. They encounter obstacles in much the same way that I do. We all have free will. But, free will does have constraints. We just may not be aware of them consciously.
For the healthy, these constraints are relatively benign boundaries that they encounter at the edges of their experience. They can choose to allow these constraints to limit them or they can choose to challenge them and cross into new territory. They feel a reasonable and manageable level of anxiety, risk and danger at the boundaries.
I think it’s different for someone like me because the boundaries are higher. They are more threatening. Crossing them seems more risky and dangerous. And, even though I’m fully conscious that these heightened boundaries are the product of an illness, that doesn’t decrease their level of intensity. In fact, one of the key characteristics of the condition, in my experience, is that emotions are relatively disconnected from intellect. I can know – with certainty and clarity – that something is not threatening and I can attempt to reason myself through it and it will have no effect on how I feel.
I hope it’s obvious what the potential consequences of this in someones life can be. Take two people who have the same goals and equal levels of ambition and willingness to take risks. Now think about the trajectory that their lives might take if their brain delivers to them a conscious experience with differently weighted boundaries. What is going to happen? It’s a complex question. Some people accomplish *more* because they have greater boundaries to overcome. But at some point, the boundaries can overwhelm anyone’s resources.
Why? Because achievement requires effort, energy, work. And, there’s always an element of mental and emotional ‘overhead’. That’s the part of the effort, energy and work that just goes into managing mental and emotional wear and tear.
What the healthy often don’t realize is that for people like me, the overhead can be much higher. I mean much, much higher. I believe it can be orders of magnitude higher. The ‘overhead’ can exceeds the resources. I’ve been there for much of my life. There’s some kind of deeper level of reserves of some kind that you have to tap into in this case, but it too is limited.
So, today I am starting as a volunteer at a Elder Care Facility (Best translation I can come up with for the Dutch Zorghuis voor Ouderen). For the last couple of years, since my health failed the second time in 2010, my ‘job’ has been getting my mental health condition under control and learning to manage it in a sustainable way. This the first conventional ‘job’ I’ve attempted since then.
I’m scared.
Should I be? No. Probably not. I’m going to be pushing old people around in wheel chairs, for heaven’s sake.
But, what would I be doing if I didn’t have this illness? I’m a pretty smart and creative guy. Even despite the illness, the highest level of professional success, without college, was as an IT Project Manager for biotech company. I worked my way up from personal computer technician. Not bad, I think. But that wasn’t sustainable, unfortunately.
It is partially speculation, but had I not had the illness, I think that I almost certainly would have completed a university education with at least an undergraduate degree, but most likely a graduate degree. That’s if I dropped out to start a company to build iPads or something . In fact, I had just been accepted into the Electrical Engineering program at the University of Utah when my health failed the first time in 1986.
Someone might ask whether there is value in that kind of speculation. For me there is, because it gives me some insight into what my theoretical capabilities are and as I look to the future it informs my thinking about what ‘subset’ of what I might have accomplished I might still accomplish.
I don’t seem to ever be able to give up on the future … and maybe that’s part of what’s gotten me through this. I’m only 55, after all.
But because of the elevated, irrational boundaries created by the illness, even simple tasks – like helping elderly people enjoy some time in the open air are dauntingly difficult.
A lot of living with chronic illness is about realistic, often lower, expectations. And it’s about values. Maybe building iPads isn’t so important. Maybe helping old people is.
Private: The Personal Narrative.
Everyone lives a narrative in their heads, whether they realize it or not.
We have a story that we tell ourselves about our lives that gives it continuity and meaning.
Where there is lack of continuity and meaning we feel distress.
Such a contrast – Draft
My experience with my new medication gives me a perhaps unique – or at least uncommon – opportunity to observe and comment on the difference between a normal state of mind and a depressed state of mind.
Usually, the climb out of depression is slow and gradual. And, I think, usually people are just glad to be out of it and move on. They don’t necessarily want to reflect on it.
As for me, I’ve had no choice but to reflect on it because that’s how have I coped and survived. Had I not deliberately reflected on it, consciously analyzed it and applied my intelligence and talents to developing coping strategies for it, I never would have survived this. So, after a couple of decades of coping, I’ve catalogued a lot of observations and developed a lot of survival strategies.
I’ve often wondered, if I could push a magic button and make the condition disappear completely and permanently, would I? When I was in it, I wasn’t sure. The only meaning I could find in my life was in battling the illness. I couldn’t see beyond that and literally couldn’t form a mental picture of a life without it. I tried to imagine life without the condition as clearly as I could so that I could somehow plot a course to get there but it was as if my brain was incapable of forming those thoughts.
So, now here I am and a ‘magic medication’ pushes that button, at least for brief periods of time and I see the stark contrast between what the Universe looks like with the condition and without.
Now, that I see that, would I push the button and have it gone for good? Probably yes. The difference is so stark and dramatic in so many large and small ways I would opt for life without this condition.
But, I don’t have that option. The medication is only a partial solution, at least so far.
First, I can’t be sure it will continue to work. I’m terrified that I will develop a tolerance for the medication which will require me to take more than I can safely take without dangerous side effects.
Second, when it works it’s only for brief stretches that it’s really optimal. I mean an hour or two at most. Then the condition starts to creep in again. It’s not always safe or wise just to take more medication. The roller coaster ride is difficult to deal with.
Part of the reason it’s difficult is that there’s a whole lot of momentum behind the condition after a couple of decades of living with it. The brain is plastic. The short version is that the number of neurons that we have is more or less set by the time we’re in our mid 20s. There are a few areas of the brain where new neurons form but not that many. The number of ‘wires’ and connections between neurons is amazing though. There are about 86 billion neurons in the average human brain with 16 billion of those being in the cerebral cortex. But each of those neurons is connected to tens of thousands of others meaning that there are tens of trillions of connections. And each of those connections is not just an on/off connection like in a computer. It’s very sophisticated and has many states. The total state of the brain is continuously changing. It’s continuously rewiring itself. The wiring of the connections are changing. The characteristics of the connections themselves are continuously changing.
In some ways this is a fast process and in other ways it’s very gradual. When you learn a new word, for example, there’s a rapid change in your brain’s state that is lasting. When you’re scared by a loud noise there’s a rapid change but it is probably not lasting. But, other aspects of our conscious experience only shift slowly over time.
Maybe it’s accurate to say that the overall ‘shape’ of our brains changes slowly but the details can change rapidly.
My brain is connected up, over decades, to be depressed and that is going to be slow to change.
But, with the help of the medication, I have the experience of having many details of my experience change suddenly during the periods that the medication is working optimally. I think this is what I am seeing.
It’s manifest in so many ways that it’s difficult to know where to start to inventory them.
Why is it even important to inventory them?
Because there is great joy in experiencing every one of them while they last and that’s what keeps me going when the effect fades.
So, when I started this post, my mind was is that, more or less optimal state. I had wanted to go on but that state is already fading and I have to save what’s left for other things that I have to do. So I’ll have to continue later.
A Really Rough Blog
I have a lot to say.
A lot of it has to do with my journey through life living with Bipolar Disorder and AD(H)D, though I’ll generally be commenting a lot on Life, The Universe and Everything also.
I’d like all my posts to be coherent and polished. Unfortunately, while my mental health is relatively stable now overall, from day to day and hour to hour and sometimes minute to minute, it’s still highly variable.
When my brain is ‘on’, I have to strike while the iron is hot and generally can’t type fast enough to capture my thoughts as I would like to. If it stays ‘on’ long enough, I can usually do a decent job of writing a draft and, through review and editing, produce a decent result. But that’s not always the case. Not even necessarily the majority of the time.
But, It’s more important to me that I try to say what I have to say than that it is polished.
So, you’re going to see a lot of variability in quality.
I hope that, despite that, what I have to say has some value.
I’m going to try to state in the title of the posts what stage the post is in if it’s not final. If it’s difficult to understand or I’ve made glaring errors or if you want me to elaborate, please let me know. If you have any questions or topics you’d like me to address, please let me know that too, either in comments or by email.
This is very difficult to do. The more feedback I get – good or bad – the better. I have wanted to do this for a long time. I feel passionate about it. But, it’s a delicate balance. The nature of the writing is that to be effective I have to talk about very personal things when I have a condition that can make me feel very vulnerable. So, where do you draw the line; where do you set boundaries? And, while I’m told I have some writing talent, I’m not an English major and I’m prone to perfectionism, so there’s that …
Reality. Really? A Mental Health Perspective – Really Rough Draft
There’s an old saying that ‘Perception is Reality’. It’s used in various ways such as explaining differences of opinion between people viewing the same facts.
Perception is also something that is dealt with in any basic psychology text. It’s the part of the process of creating consciousness where physical reality interfaces with these senses.
The human brain is the most complex structure in the known Universe. Recently, researchers found a way to accurately count the number of neurons in the brain. Not really surprisingly, it’s not the even number of 100 billion that’s been tossed around for decades. That was pretty much a guess. It’s actually about 86 billion. And 16 billion or those are in the cerebral cortex – the rumply part that is largely responsible for making us human. By comparison, Penelope the cat, who is curled up on my desk next me, has about 1 billion neurons in her cortex.
I’ll take the ‘Perception is Reality’ now and play with it a little.
Do you think there’s a physical reality beyond yourself that is ‘real’? I do.
Does it depend on or change based on your perception? I don’t think so.
We all have this complex experience we call ‘consciousness’. Is it reality? Yes and no.
What do I mean by that?
Let’s frame the ‘Perception is Reality’ statement differently. Let’s use some modern technological concepts. How about Virtual Reality? That’s what we, or at least our kids, experience when they are playing video games or when pilots are training in simulators or when Neo is in the Matrix. The intension is for them to be ‘immersive’. They should provide input to your senses that is sufficiently convincing that you can at least suspend disbelief and think that those worlds are real.
I’m going to suggest that our ‘consciousness’ is a Virtual Reality that our brain creates based on the ‘real’ physical world around us.
Another of my favorite quotes is ‘Reality is an illusion created by a conspiracy of the sense’. This comes from physicist Roger Penrose.
The fact is that we really only know about the external world through our senses. But have you thought about this:
As we navigate through our environment, light reaches our eyes a short time after it reflects off of the object we are looking at. If we were sitting across the table from each other, that’s just a couple of nanoseconds. But if you’re looking at the moon, it’s more like a second and a half. So, you’re already only getting the ‘raw data’ about the outside world with a delay. It’s already in the past.
Then that raw data has to be processed by the brain. That takes time in the tens of milliseconds range before you experience it consciously. So, you are still further in the past.
Next, the eyes aren’t just cameras that project images into your consciousness. Vision is an amazingly complex with layers of different kinds of processing for color, shape, detecting edges, recognizing motion and more.
One aspect of it that fascinates me is that color isn’t real. It’s just electromagnetic waves with different frequencies. In fact our eyes can only detect a tiny range of the electromagnetic spectrum. This corresponds roughly to the colors in the rainbow. But what I find most interesting is that only the ‘colors’ of the rainbow are ‘real’. The rainbow doesn’t really have colors. The brain assigns those colors to the frequencies in the rainbow and that’s what we ‘see’ in our minds. But what that means is that all other colors, shades and hues are produced entirely by the brain from combinations of the colors in the rainbow. They are the products of additional levels of processing and interpretation made by our brains after the raw frequencies strike the retina. Objects in nature do not have instrinsic color at all.
The same applies to all the senses. What we see, hear, taste, feel … all of it is not reality. It’s all a Virtual Reality created by our brain. Our consciousness is a time-delayed Virtual Reality drawn from the external physical reality that we live in.
So, how does this apply to mental health issues?
The average, health well-adjust person probably never thinks much about the above. Roses are red and cold is cold and they don’t think anything of it. Their brains interact with the environment to deliver a conscious Virtual Reality to them that is mapped to physical reality in a reliable way that allows them to navigate through physical reality, adapt to it, make decisions based on it, etc. This mapping is stable and reliable. There’s rarely a need to question whether this mapping of the conscious Virtual Reality is an accurate, reliable, predictable and useful representation of the outside world.
But where there are mental health problems this is not the case. In my view, the essence of mental health problems is that the conscious Virtual Reality is distorted. It’s not a reliable, accurate or predictable and therefore it’s not as useful to the sufferer as that of a healthy person is to them.
There is a disconnect between the outside world and the Virtual Reality within.
Depending on the nature of the disconnect, the degree of distortion and the nature of the distortion, this disturbance in the sufferers Virtual Reality can make one’s conscious experience very difficult to live in and make it very hard to function in the external world.
In severe cases, this distorted Virtual Reality can be so distorted that it creates the worst kind of human suffering and can render a person unable to function normally at all.
To some people with this kind of distortion, the mapping to the external reality breaks entirely and their Virtual Reality becomestheir reality.
For others, they are aware that their Virtual Reality is distorted but they have insight into how it is distorted so that they can find ways of compensating for it. But this creates extra overhead for them that healthy people don’t have. This can very stressful, difficult and draining.
For others, like myself, most of my life, the distortion is sufficient that, although I have had insight into how it is distorted, it has not been clear enough to fully compensate for it. The extra overhead was so great that to maintain any kind of normal level of functioning was too draining to be sustainable.
I have often thought, especially through the worst periods, that it would might be easier to just surrender to the distorted Virtual Reality and not try to compensate and just try to find a way to live within it. But, for mutliple reasons, I just couldn’t do that, among them, that it would have meant not being able to take care of myself or my loved ones, being dependent on the kindness of others and society and finally, I felt that if I let go, it would be a one-way trip with no hope for return. Finally, for me, it would still not have been sustainable and I would have ultimately lost the battle and ended my life. I couldn’t accept that.
But, it’s been very hard. The worst periods have been when I’ve known that a physical reality exists beyond myself, I’ve had some insight into what a healthy Virtual Reality is like, I’ve known what mine is like, I can see the difference and I can’t do anything about it.
From Facebook Following the Death of Robin Williams
My sister shared this with me and here are my comments in addition to it. I’ve avoided saying anything until now because I was afraid that I would be coopting the Williams family tragedy with my own stuff. But this is too good and maybe it will help someone understand this difficult subject
That brought tears to my eyes. That’s exactly what it’s like. I’ve been trying to figure out how to explain this. I have wanted to share it with everyone. It’s not that you choose to commit suicide. It’s that everything in your mind and your emotions is screaming that this is the best and right thing to do and you just can’t think any more of any reason not to because you’re exhausted and you can’t think clearly anymore and you just can’t think anymore about anything else. Your mental world shrinks to the point where there is nothing but the pain and a way out. You’re virtually blind to everything else. You don’t feel any joy or feel any pleasure or find any source of inspiration or peace in anything. You just feel hopelessness and despair and you feel disconnected from everything. You ‘know’ in your mind that people love you but you can’t ‘feel’ it and so it doesn’t provide strength and support and I think that is a difficult concept for most people to understand who haven’t experienced it. And you literally feel like it’s always been this way and you’re deluding yourself to think that it hasn’t. And you feel like it’s always going to be this way. You’re only going to be able to distract yourself from it with whatever obsessive behavior you’ve developed to accomplish that. But it’s only a distraction and the pain is always there underneath it and when the distraction is not there you are completely naked and defenseless against all its relentless, impersonal fury.
There was a time when I literally thought that I was defective, like a factory second and the Universe wanted me dead. It wanted me removed from the gene pool. I was a liability to it and it didn’t want me consuming any more resources. And no one is going to miss me and they’re better off without me anyway. So, who was I to keep resisting? I literally had an item on my to do list once, ‘Check to see if life insurance has a suicide clause. Gail will be able to start over’. I’ve felt that way to one degree or another since at least 1979.
But somehow there has always been this tiny little voice that said, as persuasively real as this seems to be, I choose to believe that it is an illusion. Why would my mind and my brain do this to me? I don’t know, but I refuse to believe it is real and I won’t give into it, no matter what. But, I couldn’t have held out forever.
I don’t know where that voice comes from.
I think one thing that compounds the problem is that you don’t want to talk about it; not because you don’t think people want to help but because they don’t know how to help. They say things that are not helpful and even harmful and you just can’t handle the pain of feeling so alone with something that no one can do anything about. But the self-preservation instinct is still there and it feels safer to say nothing and think that maybe someday, somewhere I’ll find someone I can talk to or some other source of healing, than to talk to people about it and be disappointed.
That’s part of the reason that we call it a disease. This is not rational thinking. Something is causing you to think things that you would not normally think, even in a time of stress.
So, when you have that kind of treatment-resistant depression you think: What’s the point of seeking treatment or support?
The best thing you can do for someone, is just to be *unconditionally* involved in their lives. A person in this situation needs to know that you will be there *no matter what*. I think most of us who suffer this know that you can’t be there 24/7 and that you need a break on a regular basis. But we need to know that there is a lifeline we can count on. And you need to be pro-active about it and not wait until it builds up into a crisis. There usually are things that you can do that will make a difference and make a dent in it, until hopefully, gradually someone can, by their own internal efforts and through treatment, find a way to get out of it. But it requires determination, dedication, creativity and resourcefulness to figure out what those things are.
But the reality is that while many people do respond to support or therapy or medication or other kinds of treatment, some don’t respond to any kind of treatment, regardless of its quality or their own efforts. Then it gets very difficult for the sufferer and those around them.
Lately, I’ve been thinking that my life is divided into two phases: the one where I am depressed but hopeful that it will improve and the other when I am depressed and have no hope that it will improve. The latter state is the risky one. Fortunately, so far, and more and more, the former state has prevailed. I hope that becomes the rule.
Ironically, some people think that suicide is an act of cowardice. The real cowardice is that, in my opinion and in many cases, people around the sufferer and in society in general, turn a blind eye to depression and suicide and do not fully engage in helping. This illness is so common and under-diagnosed that *I guarantee you* that you know someone who is in it. There’s no lack of resources out there for understanding this problem and providing support.
But the thing is that this is not confined to this illness. The principles underlying helping someone with depression are not that different from those underlying supporting someone with any other kind of serious illness. You just have to first recognize and fully acknowledge that it is an *illness*, a serious one, a potentially fatal one like cancer or heart disease. It’s just that this illness has no external signs and you can’t see it on a medical test.
But the reality is that it does. With my extensive experience with it, I feel like I can look around and see it on people’s faces and in their eyes and in their posture and body language and the way they speak and conduct their lives. And there are other signs if you learn to recognize them.
For me, suicide is still a risk. I’ve become kind of philosophical about it. It’s no different than having some other potentially fatal illness. If you have cancer, your doctor is likely to give you a statistic for the five year survival rate for whatever variety you have. Well, the lifetime mortality rate (risk of suicide) for someone with Bipolar disorder is 25%.
It’s far better now than it once was. But I still frequently have periods where, if they were to persist, it would be quite impossible to hang on. But I do, somehow and I keep seeking better treatment and keep finding better ways to cope and I hope this is helpful to someone.
The Loss of Robin Williams
was deeply saddened and disturbed by the loss of Robin Williams. It’s going to take a while to adapt to it. I’ve known for years that he suffered from addiction and depression of some kind but I never expected it would take this turn.
I just read an article (1) talking about how there’s always a spike in suicides after a high-profile celebrity suicide, and this is about as high profile as it gets. Another article commented about how this is the first high-profile suicide in the era of social media (2) so the flow of information has been quite different than in the one-directional, news source to audience past. I’m encouraged that the content of the commentary has almost universally been one of understanding that depression is an illness and that suicide is sometimes a symptom of it. This is in stark contrast to the more judgmental tone that there has been in the past, that it is a sign of weakness, or a character flaw or even, by those who are religiously inclined, a result of sin, which, in my opinion, is the most insidious, if not downright evil, explanation.
I’ve often wished that there was a pill I could give someone that would cause them to experience depression temporarily. I’m convinced that just 5 minutes would be enough for the average person to understand how debilitating and dangerous this illness is. The statistics are staggering. Even I was stunned when I read this from the World Health Organization recently: ‘Depression is the leading cause of disability worldwide, and is a major contributor to the global burden of disease.’ (3) People just don’t realize how common, under-diagnosed and damaging to people’s lives and to society this is. And this is tragic considering that for many people it is easily treated, especially if recognized early.
But, other than experiencing it somehow first-hand, there are other ways to communicate it that seem to help people to understand and encourage compassionate support to those who are ill. This devastating loss provides just one more reason for me to try.
Or so the Dutch say in my adopted country of The Netherlands. It means, ‘Something important is ready to happen.’ And so it is that I just start writing. I’ve intended to do this for a very long time but various things have held me back. Fears and doubts of all kinds. That’s a particular issue with me. I don’t deal with exposure easily. I feel terribly vulnerable even in ordinary, everyday human exchanges. Talking to the cashier at the grocery store is awkward and painful. Even talking to the techie salesman at the computer store, where I know a thing or two, is difficult.
And here I am proposing to expose myself to the whole world. Not that what I have to say might even attract much attention. But it’s possible. When kitten videos spread like viruses, anything can.
So, if it’s so hard, why do this at all?
Well, I just can’t help it. I don’t know if I have anything valuable to say, but I think I do and the only way to know is to try … and deal with the consequences, whether they are friendly, critical, kind or mean. The Internet is such a rich resource for nearly everyone. But can also be such a harsh wasteland.
My first real experience with loss was when my grandfather had to be hospitalized and then died after having a heart attack. It was the first funeral I attended. I wasn’t more than ten or eleven. I understood that he was really gone. We had family around and, as a child, I took it well.
Death touched our family several times, and in several posts I’ve talked about how I was affected by the different deaths that took place in my young life up until my early 20s. Forty years later I realize how sheltered I have been from grief and its realities. You don’t see the real stuff when you are young—I didn’t.
Several years ago, after observing how many people would respond to someone’s loss with “I’m so sorry,” I decided to use my Facebook page to conduct some nonscientific research. I asked people “Why do you say I’m so sorry?” and the response I got was “I don’t know what else to say.” This response saddened me.
As I’ve journeyed through the loss of my husband, I have noticed some things in ways that I’d let slide before. One hundred and eighty-three words into this post, I’m going to talk about what I’ve noticed and what it can do to those who suffer from grief and loss.
Death Is Out of the Home
I now live in The Netherlands. One of the huge differences here vs. the USA is that it is still common after death for the body to be viewed in one’s home. This isn’t always possible, but it still happens in many situations. Having attended such a viewing, my first thought was In the home!? My next thought was that by being in the person’s home and being with the loved ones, one could relax in his or her own surroundings as friends came by to show their love. By the end of my time there, it felt like a great way to mourn the death of a guy who kept us on our toes. It was peaceful and joyous. There were no “I’m so sorrys” said. We spoke of him and shared quietly. The Dutch are able to do this well.
My husband’s viewing was not in our home and it wasn’t even suggested that I hold it here. However, it was a wonderful experience. People who knew him came, and by the end of the evening, I was “high on really good chocolate.” Once again, the talk was honest and we laughed and I felt supported.
For some time (until I said “Stop”), people I knew brought me meals and it was wonderful. Then I told them that I needed to cook for myself and everything stopped. As long as they were cooking for me, they knew what to do and say, but after that…
Death moved out of the home to someplace else. Because of the trauma surrounding his death, I really didn’t pick up on what had happened in the way I might have. Slowly, people who didn’t know what to say, or do, moved or distanced themselves from me. They didn’t want to talk about Jon or hear me talk about Jon. The first year was hard, and over that year people drifted further away until by the end of the first year, I was more alone than I would have liked to have been.
Death Reorganizes Your Address Book
This is a fact, and it is something I’m coming to terms with as I live through year four of life without Jon. I think this is a complex issue. This is not just about knowing what to say, but also understanding how to kindle a solid relationship. I think we’re failing in this area.
One of the things I learned from one of my aunts was the value of real friends. She had one real friend. She and Dot had been friends for… forever, and even though they were separated geographically, they were very much in each other’s lives. They went through the good, the bad, and the ugly. Dot’s children were a real part of things as well, and when my aunt and uncle celebrated 50 years of marriage, Dot’s kids came! Like a really good marriage, Dot and my aunt Lois really worked at friendship. “I’m so sorry” was not uttered in that relationship. When Dot was diagnosed with a serious illness, words of comfort were exchanged.
I’ve often thought that maybe it was just a slower time. Maybe it has to do with the fact that you became friends with those in your immediate surroundings, and when they moved, you wrote or called them. Was there more social necessity to make relationships work so that they would last?
Maybe it is none of the above, or all of the above, and I’m not wanting to say that since the world has “shrunk,” and distances are smaller, we aren’t valuing things in the same way as we once did. I don’t want to blame social media for the demise of friendship. But, I have to admit that social media has affected the way we, as a world, interact with one another.
Yes, grief reorganizes your address book, and it does so because there are many people who don’t understand how to support such loss as death, divorce, illness, or other life events.
I’ve posted about what to say and do in the category “What Do I Say.” Yet this issue still gnaws at me. Why? My first thoughts are that people react to grief and loss in the way they want to be treated when it happens to them. It is as if all logic and reality blow out the window, and instead of saying anything, people say and do nothing. I got particularly angry about this in RAW (The Suicide). Has our social IQ dropped that much? Have we, as a society, drifted from understanding empathy that much? Brené Brown says it well in this video.
I think we’ve lost some of our ability to empathize. Maybe it has to do with the growing need to state our individual pain while forgetting about the pain of others. Therapists are in the business of pain. What I hear when I listen is the deep pain of others not being completely heard by those they feel should be hearing them. This thought causes me to recall a conversation with my husband’s psychiatrist and his ending remark to me: “You needed to be heard.” And I did need to be heard! His comment to me reminded me that with all the hearing and caretaking I was doing, I needed listening to as well.
As I look at hearing, and being heard, from the perspective of having or getting needs met, I can’t blame people for the lack of empathy. Here’s why: There are so many forms of grief and loss that to show proper empathy for all of them might not be possible.
I don’t know what it is like to come out as LGBTQ. I don’t know what it is like to have a miscarriage. I don’t know what it is like to have a child show hate for a parent. What I do know is that deep pain hurts, and that I can show empathy for others by tapping into places that are not so pleasant within my own life experiences that contain things I can use to empathize with. I might not understand perfectly, but I can understand. Sometimes that means doing a great deal of listening and then asking questions that will deepen my understanding of someone’s experience. I’m not expected to know it all; I’m expected to know that I can ask and learn.
When life was less expansive than it is now, we didn’t have the “experts” to tell people what was, and wasn’t, normal. The truth is that those thought of as “experts” now may, or may not, have known what to say. My aunt and her friend Dot had to rely heavily on empathy and questioning to really understand each other. They were present in ways that mattered because it meant something to both of them. So, maybe trauma as a whole rearranges address books because people think they have to know before they open their mouths and friendships are lost. Personally, I’d rather have someone say to me “I don’t know what to say and I’d like to say the right thing.” While this puts it back on me, it also opens up a pathway for me to say “Thank you” and “This is what I need.”
In saying all of the above, I must admit that writing this post has been a thoughtful challenge. Here is why: In conversing with several people, I’ve discovered that we really have lost the skill of empathy. The “I’m sorry for your loss” remark really is the best they can do. People are overwhelmed with all of their own stuff, and the balancing act of trying to support another person when you don’t have the skills to do it well causes you to shut down. It may also have to do with loneliness in our Western society.
Don’t hate me for saying the following because it is not something I wanted to say in this piece, but I’m finding that I have to say it: Social media has moved many people into a state of social detachment. What I mean by this is that people know how to react to a photo or meme, but they can’t, and don’t really have the skills, to thoughtfully react to substance in long form. Knowing this may mean that right now, as you read this, you may want to engage a wee bit more than the average. You aren’t looking just to “get in and get out,” and want to say you have really connected with a thought or an idea. Think about your own social media pages; what gets the response from you?
Facebook marketers tell you to use photos and limit words. Why? They’ve dumbed down for a faster pace. They’ve dumbed it down because people aren’t reading thoroughly.
Gaining Empathy Skills
In most healthy family situations, it begins at a very young age: “It’s mine” is followed by a parent saying “You must share.” Slowly, the young child learns the social graces that allow for becoming friends. By four years of age, a child has enough insight to answer the question “Do you like it when…?” By the time a child enters school, the building blocks are laid for social connection, and those kids who have learned rudimentary skills in the first years of their tiny lives are ready to test their newfound skills on the larger stage. As the child grows into adolescence, the skills of childhood are put to the test as relationships deepen, friendships broaden, and exploration expands. By the time the 18-year-old enters the adult world, the lesson is done but the learning is just beginning.
Some of my most valuable learning came about from moving out of my parents’ home at 18 and going away to school in another city. On my own, I screwed up some relationships, but also had successful ones. I came to understand things as an adult that being under my parents’ roof could never have taught me. It was hard! When I returned to my hometown in late 1990, I’d had some disastrous and some good experiences. I’d built up some life experiences that would allow me to understand deeper feelings and understand in a credible fashion: things that I could use to empathize with others.
I share all of this to tell you: You get the skills by experiencing life. You gain empathy by blowing it, learning from it, and using the learning you acquire to reach out to others.
You discover empathy by finding a similar feeling or experience within yourself. You don’t share the experience, but rather you recognize the power of this experience and quietly listen in order to understand. You might have “been there, done that, and have the T-shirt,” but in this case you only mentally put that T-shirt on and remember how hard it was to get through the experience so you can empathize. It is then that the questions come and the understanding and connection follow. Now two people understand, by more than words, the experience that one is having. Empathy is a marvelous thing. No more empty “I’m so sorrys.”
*Note: My goal here is to put a more human face to several psychiatric disorders. I hope you will read and learn. All names have been changed and identities concealed.
As part of my undergraduate experience I wanted to do some volunteer work in the community. The university I attended had a program running that enabled me to do just that. I was privileged to work in three different settings. One was a care facility that dealt with geriatric patients. The other larger facility I worked in was a halfway house for women who had been discharged from the state psychiatric hospital. I also worked with someone in a private home. I will be talking about the two latter experiences in this post.
When the LCSW (licensed clinical social worker) interviewed me for the job and match me up with patients, I had not given working with schizophrenics much thought. I was excited to learn and my fear factor was low. I must have said something that made them think of matching me with Ann.
My first assignment was to work with a woman who had been out of the hospital for four years. (Remember that I’m a young, enthusiastic, university student who still thought of herself as indestructible. I didn’t give a second thought to being in a private home with a schizophrenic. I didn’t even think that something terrible could happen to me. Ann was just someone who needed some help. I was someone who wanted to not only offer what help I could—I wanted to learn. More later.)
Ann had an adolescent onset with her schizophrenia. Her intelligence had been affected, and I found that I was working with a woman who had the equivalent intelligence of a fourth-grade education. The social worker explained this to me before I had met Ann, but seeing it in action changes the hearing of the information. My job with Ann was to get her out of the house so that she could eventually learn to take the bus to the day treatment center in a larger town. They had also hoped that I could find a way to teach Ann about taking better care of her diet. This was to be in preparation for a weight-loss program they hoped to enroll her in.
It began with tiny things. First, I spent time with Ann. I had to let Ann feel safe with me if I ever hoped to get her away from her home. When she finally made her first attempts to leave the house, they were small. First we walked outside for five minutes. Eventually we went to the nearby park. Then mini health lessons sandwiched between talking about being away from her house. If she began to panic, we returned to the house. She learned safety and I encouraged her in her confidence.
I learned a great deal in working with Ann. I never asked her about what being schizophrenic was like. I did ask her why she was willing to take medication that caused her to have terrible side effects. I admit to being curious, and when we had built up a good relationship, I queried her as to why she was willing to swallow pills that others would take for a brief period of time, go off, and then wind up back in the hospital because of not taking the drugs. “Why would you do that?” I asked. She replied: “I don’t want to go back to the hospital. EVER. I’d rather take these pills because that is a terrible place to be and it is scary in there.” Scary? The reality of being in the hospital was worse than what she’d go through to be there? That is a powerful reason to take your medication.
Several years later I found myself waiting for a bus to get to school and I heard Ann yell hello as she passed by in a car. I did a double take: That is a thinner Ann!!! I found out that the work I had done with her paid off in big ways. She was able to get to the cooking classes and into the weight-loss program. She was still taking the medication. Her success impacted me in ways that helped me in my future work as a mental health professional.
I’ve thought about the statement Ann made about taking medication. I’ve thought of it from understanding the terrors of what a person with schizophrenia can endure. My understanding is not complete because I can’t feel or see as they do. I’ve come to respect that statement made so many years ago and I take that with me in my work. Ann impacted me in powerful ways that I continue to discover.
Ann is part of the one percent in the US that suffer from schizophrenia. Most of this one percent desire some form of treatment so that they can live as best they can. Some don’t understand the need to swallow the pills. Some can’t see beyond the side effects of the medication, and others think that having a symptom-free life for a short time means that they don’t need the pills any longer. Because of those thoughts, the cycle of hospitalization and illness continues. This is the talked-about “revolving door” that leads to nowhere.
After working with Ann, I was asked to go to a halfway house and run a fun music group for the residents there. “Get them to sing, talk, and create something,” I was told. I could do that because I like to sing and create things.
The group I ran had eight members. Four of the women were named Ann. (I wondered to myself if there was some kind of strange coincidence that so many of the women I was working with were named Ann.) The women were wonderful to get to know.
The group was a short-term project that managed to get the women to interact more on a light-hearted level. During my time running the group, one of the Anns—and my favorite group member—went off of her medication and was rehospitalized.
When Ann went back to the hospital, it affected the other seven women deeply. They cared about each other and were working to integrate back into the community. That following group session was a somber one in which we just sat and sang some sad songs. Each woman had her fears and knew that the same thing could happen to her. They had lost a friend to a relapse.
Seeing the impact of what had happened to this Ann sobered me to the realities of the population I was working with. I was told what had happened: A hallucination had caused her to think that she could fly. She tried, failed, and cracked three of her ribs.
While schizophrenia can wreak havoc on the mind, it does not mean that the person with schizophrenia will ever become violent with others. It would be better to state that this population need support and love because they are at greater risk for self-harm and suicide.
I think of my five Anns every once in a blue moon. I wonder what has happened to them. I wonder how they have been treated or mistreated; understood or misunderstood. I hope that they have found a supportive place. The fact is that my hopes for them are just hopes. The truth is that I know dealing with schizophrenia is never easy.
This population may not affect you personally. But they are someone’s mother, father, brother, or sister. Would you come to comfort someone you knew who was in need of help? Those who are schizophrenic are in need of so much love and help! They might not be able to return that love and caring, but they need it all the same.
These are people who are alone, living under bridges, because there aren’t funds for treatment. These are men, women, and children who deserve our help. Those with mental illness have no voice. We, who are not burdened with schizophrenia, or any other mental illness, are the voice. Where is your voice?
Now, I should also mention the successful and more well-known schizophrenics: John Nash, Peter Green, Syd Barrett, and others. People who are schizophrenic do work, live peaceful lives, and contribute to society in productive ways that have enriched our lives. I chose these members of society because I know of their work. There are others. Will you raise your voice to help these other people? They are part of the group society judges.
If my words have caused you to think, that is good. If my words on this cyber page are causing you to want to know more, I’ve done my humble job. I’ll leave you with a teaser: What did John Nash do that won him a Nobel Prize? What did John and the King of Sweden talk about when he won the prize?
How many of us think about what we could do with more money? How many of us understand its true value? Whether we squander, or spend lavishly, everyone gives thought to having more stuff that makes it possible to live.
The fact is that having a sufficient amount of funds for meeting life’s needs can provide each of us with the feeling of being safe and secure. Having a surplus of funds can provide us with more options. The more wise options each of us has, the more choices we can make to free us up to pursue better solutions for the challenges we face in life.
I’ve come to rethink how I feel about the paper we call money. I now think in terms of options rather than wealth. What options do I need to provide a good life? What are the consequences of having any of these particular options? What is the meaning of having enough? It wasn’t always this way. My thoughts and feelings about money have been an ongoing journey.
I’ve learned a lot from living and working. The process of returning to work as a self-employed therapist has caused me to ask myself about money, what I need to provide for my family, and what I would like to do with the money I earn. So, what are my needs, the needs of my family, and the needs of my business?
One of the most important values I have is that of being able to assist others less fortunate than myself. This can only happen when the needs of my family are sufficiently met. It means having enough for not only our family’s needs, but having enough to fulfill a dream, or two. Having enough is about being realistic and feeling good about the things you have. So for me, it means being able to give back.
So, in practical terms, what is enough? Being able to buy what I want at the grocery store. Providing new clothing for my family when they need new things to wear is also important to me. Saving for retirement and taking a vacation to relax, and then returning to work refreshed. After that, it means being able to save and give assistance by offering to buy groceries or replace someone’s worn shoes. It means doing good things for others. It means giving someone who is starting out in business my support. It means that I want to do nice things for my husband without him knowing about them.
Having enough also means that you don’t waste what you have. There is something about meeting your needs and not overconsuming; that is just good for the world we live in. When you live within your means and use only what you need, you have less trash, less stuff to store, and less cleaning to do. I’m not professing to be a minimalist because I’m not such a person. But, since our family has cut back on consumables, our trash isn’t as full and our house is less burdened with excess.
I will confess to wanting more kitchen space so that I can buy some cool kitchen gadgets. We like cool gadgets and we like to cook. So, it also follows that we like to eat good food. It is all about determining what “enough” is, and living that way in a realistic and calm manner.
One of the things I’ve learned from living here in Europe is that Europeans like nice stuff. They have less stuff, but what they own is nice. Most people here don’t go into debt; they pay cash for what they own. Most will have enough to retire on and are satisfied. Being here in the Netherlands has taught me to rethink my thinking. It has been a lesson worth experiencing and learning.
As I think about who I am now, versus who I was when I came to Europe to live, I can see how being here has affected me in a positive manner. It has changed me for the better and it has taught me valuable lessons that I could not have learned by remaining in the US.
Insight is a great gift that each of us can provide to ourselves. Insight comes when you look in the mirror and notice that the face staring back at you has taught you a valuable lesson, and one that you would not trade because you are better off for knowing it. Insight can heal the pain that comes from making lousy decisions. Insight is like a plate of your favorite comfort food. When you have it, you want to enjoy it and you want more of it.
As I move on with life, having enough for our family’s needs is good enough. Evaluating what enough is was a challenge that has brought me inner peace. Understanding what enough is frees me to do what I need to do in my life. Having enough means that you can live your life and not chase a false dream.
*Note: This is another post from the vault that was written when my husband was still living. Enjoy!
I found this in a mass mail that a friend sent out. It made me giggle. I giggled and thought, RIGHT. This kid gets it. Do I?
“A little boy was overheard praying: ‘Lord, if you can’t make me a better boy, don’t worry about it. I’m having a real good time like I am.’”
My thought: this kid is comfortable in himself. He is having a good time with life. The good and the bad are all a part of it.
I hope that the fictional boy will keep this attitude in life. I hope he will love himself and others and bring joy to everyone he meets. I hope he’ll pull pranks, tease, and get teased. I hope he’ll love his pet tortoise. As he learns to be kind and compassionate to others, he’ll earn friends. He will grow into a healthy adult who will pass these same traits on to others.
Being able to know that you are fine just the way you are is a gift. It is a gift provided by loving parents who care enough about a child to foster a proper self-image from the beginning. This child is not indulged, but rather encouraged to do his or her best in everything. She is praised for accomplishing things, and supported to get back up and try again when she fails at something. Like our fictional boy, she knows that “I am having a real good time like I am.”
A healthy child learns to earn the privileges he or she deserves. She learns to wait for the toy that she wants, and earns the prize honestly. And along the way, she comes to understand that she is unique, but not “special” within her world. She learns that success is won and failure is a lesson to be learned from.
Recently, a friend sent me one of those captioned pictures. You know, the kind that floats around the Internet. This one had an interesting caption and I took the time to respond to it.
The subject matter of the photo was having regrets. Throughout my life I have made mistakes and felt sorrow over decisions that could have carried me down a different path. I am “me” because I’ve made the choices I’ve made. I’ve learned the good and the bad lessons from those choices. I own my choices. Ownership of the outcome means that I try to live by not asking “WHAT IF?” or thinking “IF ONLY.” Once it’s done, you can’t take it back.
My first lesson from life in these matters came when I was 18 and headed off to school in another state. My mother and I were present when my younger sister died of a heart attack. There was a part of me that wanted to cancel my life and stay home. That wasn’t to be, and I moved on to the next phase of my life: learning on a larger scale.
Because of the choice I made to move forward, I made friends that I would have never made. I grew up and discovered that my heart could get broken, heal, and, yes—I could even fall in love again. I learned not only to love, but to give, in new ways. Had I stayed home and attended school locally, the lessons would have been different. Leaving home caused me to want different things from life. That is what should happen because growth requires change.
As I write this from the vantage point of age, and hopefully, more wisdom, I am thankful for the roads I have walked. Sometimes I speculate about the roads that weren’t traveled. And I think back to that fictional little boy—you know, the one that is just fine the way he is—and I think that I’m fine having walked down the paths I’ve taken. I’m glad I’ve learned, hurt, healed, and grown. No real regrets—just lots of lessons to learn from.
In 1958 there was a pandemic, and my mother happened to be pregnant with me. It was only a slight case; she didn’t even know she’d had rubella until after the fact. It was during an era when medical abortions were done if the parents and the doctors were willing to do so. My mother told me that they didn’t ask, so the docs didn’t offer. Nature took over and produced a child who had been conceived to be healthy, but who became injured while still in the womb. That is what nature does.
In talking with my mother about this issue, she once told me that she could understand both sides of the argument and why a woman would choose one or the other. From her I learned that the issue around the health of an unborn child, or the termination of that pregnancy, is not an easy, cut-and-dried process. The choice to raise a disabled child came with a great deal of pain and learning, as well as tears and sorrows on all sides. Society blames and doesn’t help. My mother learned radical acceptance and radical compassion. I watched, I listened, and I learned from her.
In the past month, I have sat and watched as so many have blamed gun owners, children, the shooter, the NRA lobby, and Congress for the travesty of yet more dead kids. I hurt for the families and friends who have lost children. I am angry that people are using an act of violence to force a political solution, as well as a mental health solution, to this situation. There is enough greed and corruption to go around! There is more than enough blame that is being spread to the innocent. I want to scream “NO! STOP IT!”
I do support change. I’d like to see assault rifles, code red drills, bullying, blaming, and greed to be taken off the streets. I’d like to see respect and support become common. I’d like to see corporations become responsible for what they are putting on the streets. I‘d like to see violence in video games and films done away with. I’d like to see everyone have access to good mental health care and not just a set number of visits per year. I’d like to see education and understanding for all.
I’d like to see scientists search for effective medication that could reach into the abyss of a shooter’s mind and allow that person to be healed with both medication and talk therapy. It is dark in that mind. It is lonely in that mind. To be able to befriend such a person would be rare. Why? Because what such a person thinks is so black, so far from the norm, so chaotic that most professionals can’t—or won’t—even go there. I’ll venture to speculate that the person owning the thoughts is just as terrified of going there. What I’m talking about is a radical compassion for others.
Few have been able to show such compassion because few are the Buddha, Mother Teresa, Jesus Christ, or others. To be part of that universalizing place takes a lifetime of journeying. However, each of us is capable of listening with love and compassion. You do it as a child when you show sorrow for your friend’s pet that passed on. You do it when you spend time listening to a friend sharing grief. You do it in a darkened theater when you let out the buried pain that you can’t show for yourself or someone else, but can show for the character in a film. You do it when your best friend tells you that they are coming out, and your love for them takes you to new places of joy and acceptance for who they are. You do it when you ask “Why?” and come away with only more questions, but a determination to find one solution and you join a cause. In joining, you move to radical compassion, when you sit down in a room and listen to the others who believe differently than you do. You do it when you realize that “they” care just as much as you do. You do it when you take a hand and find a way to work together for peaceful solutions.
I saw it in my mother as she was faced with how society treated her two disabled daughters. I saw it in her heart when she wept and yet didn’t lash out at others for the treatment that came to her children because other parents didn’t teach the same values of love and acceptance.
I want to see more kids step up and take responsibility for the things they can do. I want to see those of us who are older applaud the courage that we are witnessing and show love and compassion for the process they are initiating. I’d like to see each of us stop and think about the words we speak and the actions we take in our daily lives, and how they might affect others. I want to be on the path of radical compassion with my fellow human beings. Right now it feels sparsely traveled. I think back to my mother, and if I can do what she was able to do, I’ll be doing well. Join me on the journey. It isn’t an easy journey, but my mom thought it was worth doing, and so do I.
Today has been very hot. I like the heat because it means that the sun is out and the sky is blue. The only bad thing about the heat is that sticky, humid feeling. Today I had to be out in the heat and it was wonderful!!!!
Why? Well, it was because of all the nice things that happened while I was out and about and doing the many things that I had to get done. I was out alone with Myrtle Mae. Myrtle Mae is a good sidekick. “She” keeps me safe from others. I’ve also noticed that people are really nice to me when I’m buzzing around with my stick. (Myrtle Mae is featured in stick magic.)
There are so many things that are different about being a person with low vision. Some things are just more complicated and time consuming than they are for a fully sighted soul. People being nice to me made me feel OK about walking around in the heat. So to balance my happiness, I find myself listening to one of the most pessimistic guys of rock: Don Henley. I like Don.
There were things to do, like the veggie run and the bank. I like getting this stuff done—but there was also laundry to do before I could do the veggie run.
I tell you all of this because the man did something wonderful for me. He can be sneaky in phases because my sight just isn’t good enough to see what is going on in my tiny room that I use as an office. I didn’t see the first phase at all.
My office is filled with very “Gail”-type things, two of which are parasols that are mounted into the corners of the ceiling. Once they were up I thought, Wouldn’t it be cool to backlight them? I haven’t thought about it for some time. He has.
While I was out and about, he got to work and gave me a very beautiful surprise to come home to. Yup, he backlit my parasols!!! So, even though it is hot out there and in here, I’ve got the tiny lights on. I couldn’t resist as it is so pretty to have the soft light around me.
Being nice pays off not because it has to—it just does. There is something about generosity that is contagious. So, when I’m out and about, I smile, and others say hello to me. Why?
I think that is because we, as humans, crave positivity in ways that will never be fully understood. I, for one, have no desire to study this, as it takes some of the magic out of the process. I will studiously avoid the research on the topic. Some things are better enjoyed and left alone.
I think I’ll go find someplace cool to enjoy the evening. I also must switch to something other than Don Henley. Before I do—remember to smile and see what you get in return.
Late Wednesday I asked Jon: “If you could give me a gift, any gift, what would it be?” I wasn’t ready for the reply.
He told me he’d give me a healthy body. He told me he would want to take away all my discomfort and give me health, and I was stunned silent. Two days later and I’m still stunned.
I’ve had this petite, not-quite-a-gem of a body for 56 years now, and while I don’t appreciate its lack of functionality at times, I still love being petite. It is who I am. I love my blue eyes and my once-curly hair. I don’t like the PXE (Pseudoxanthoma Elasticum) that has made life hard. No, I don’t like that at all.
I’ve made the comment before that if I could see normally, I’d want to play tennis. That would be first on my list of items to do. That is just a thought and a desire, but when I think of things in terms of my entire life changing, I have cause to rethink. Doesn’t everyone want health?
About two weeks ago, my family found out my younger brother might be facing some serious heart surgery. He, like me this past year, had to come to terms with his own mortality. It changes you and causes you to rethink who you are and what you do with your life. Things that didn’t seem needful take on a new view. In this past year, the things that really matter to me have changed.
As much as I would like health, I’m going to decline the gift. It isn’t that I’m not moved by the thought; it is that it would change some things. It makes me think of one of the most powerful “Generation” episodes of Star Trek, and the lesson that it teaches.
In the episode, Jean-Luc has yet another encounter with Q. He comes to understand that the lives we live are due to the choices we make. We walk the paths we walk because of what we either do, or fail to do. I may not like the hassles that my lack of a healthy, functioning body brings to my life, but without it I lack the knowledge and power that its lessons have taught me.
Instead of pontificating on all the lessons I’ve learned (and I could do just that ), I’d like to ask you each some questions: Would you change your life? Would you alter it so radically that the lessons you have learned now would change? Who would you be if you weren’t this current “you?” How does thinking about this alternative “you” change who you are going forward? Why would you make the changes? What would your reasoning be?
The offer of Jon’s gift has made me look at myself and accept that I’m OK with the mess of my disability. I’m more accepting of it than I thought I was. I like me. I may not always be happy with life, but I like my life lessons and am glad I’ve had them to shape who I am.
I will return to the gift of health. It is a good thing to ponder and revisit because it has made me think about my life in new and better ways.
In asking myself the question, I found another gift. This gift is that I like being Gail. I like some things about being who I am with my own disabilities that I didn’t think I was happy with. Thanks, Jon.
