Skip to content

Search results for 'raw'

Adult Work Is Life Work

This weekend I spent several hours completing some Continuing Education Units (CEU), so that I can renew my license. I’m at the point in the process where I’ve done the required courses and can now attend to the exploration of new things. This is where the fun of learning comes in. This time around, my focus on deepening learning took me to learning something I know something but not enough about: LGBTQ2s or LGBTQIA+, the choice is yours. 

I have friends and know people who claim identity in this community. I work with those who claim residency in the LGBTQ2s community. The weekend of learning was helpful, and I learned some things I didn’t know from an instructor who really knows his stuff. It was time well spent. 

All of this got me thinking about the process of coming out to oneself, and to others. Coming out isn’t a one-time event: it is a constant. There is risk in uttering the sentence that includes the words “I’m lesbian, gay, bisexual, trans or queer.” The person speaking those words in a conversation of one or one hundred is putting themself out there in a way that you might never have to, or need to, do. It’s a risk. Then I got to thinking about my own truths. 

I’ve been a part of the disabled community all my life. How much do those I work with and associate with really understand about my daily life and what it takes to do what I do? 

I’ve made mention here that I have a spiritual life. I don’t talk about it; it’s private. We’re in a time of Lent, and this season I felt the need to add to the process rather than fast from something. I added in the need to interact more, and in many ways come out fully as the disabled person that I am. My faith community accepts everyone. LGBTQ2s, the person of color, and the disabled. At times it challenges us to have some difficult conversations. Last night, after a month of services around service and giving, and bringing in the voices of my sisters who are disabled and a part of this community, I came out. 

Speaking my truth was soul wrenching. It took six takes to produce a video that I could share—a video where the tears weren’t streaming down my cheeks. A video in which I let anger, but not rage, show. A video where I could speak my heart and soul, and let the words stand. It was raw. I’ve done raw before, and this was raw. 

Most of the time, when the disabled explain their disability, we tend to work up a pleasant presentation that informs and instructs. This wasn’t that type of pitch. This caused me to really think about what I wanted to say, and not say. Still, at the end of the service, I found myself sitting with the tears streaming down my cheeks. I’m still raw. 

Coming out is about sharing, embracing, and being embraced. Coming out is also about risking something new, and discovering where the support in your village resides: who will stay, who might need to leave. And leaving the village has to be an option for safety reasons. At some point, the former resident may do the work needed to return as a productive village member. Hold the option of leaving and returning, and the hard conversations around that as a possibility: it happens. 

If coming out is a process, it is also seasonal. We mourn in different ways throughout our lives; we reframe, rethink, and return to explore places we thought had been completely explored and thought through. In our exploring we discover new ways of being, and new places to dig deeper. The work of life is not done until the last breath is taken. 

If the work of life is never completed, if coming out to ourselves and to others is always a work in progress, what options do we have to get on with the work in all of its wonderfulness? How do we embrace the joyous, work through the difficulties, resolve, rediscover, and then move forward?

There are two ways that I will talk about. Both versions of self-discovery are useful. Both can lead to the same outcome. Both are lifelong. The first is to find a therapist who does long-term growth or insight work. This is about depth, and not running from your personal truth. It is about putting someone on your payroll who will walk with you as you discover the places in your life that you need to move to. It has nothing to do with behavior and everything to do with relationships. The greatest area of focus will become the relationship you’ve built with yourself. 

The second option centers around spiritual direction. Spiritual directors, like therapists, have various areas of focus. As our spirituality is as individual as we are, so is the direction. This isn’t about an authoritarian person telling you what to do: this is about you discovering how spirituality is working in your life, and where you are feeling pulled, led, or, for some people, called. It works the same way as therapy in that we sit and talk. Maybe I light a candle, ring a sound bowl, or offer a prayer, if that is what the person desires. Sometimes we both sit in silence and reflect on what has been said. The sessions usually happen once per month, last an hour, or sometimes longer. SD is a place that is well suited to come out to yourself on multiple issues. If you need to do some therapy around something, you’ll be told to seek out a good therapist to do that portion of the work. 

Both therapy and direction can focus on the spiritual if the therapist has the ability to do spiritual work. SD, on the other hand, doesn’t touch that type of change or “fixing.” Directors don’t look to fix. 

I now realize that my life would have been deeply enriched by spiritual direction. I’m glad I know of it and can offer direction as part of what I do. 

At the end of this writing session, I sigh, breathe deeply, scan my body to see where I’ve gone, and how I feel. Not so raw, and somewhere else. Where have I moved? I don’t know. There will be more to come on this, I’m sure.  


***In the spirit of this post I’ve left it unedited. 

I’ve been thinking about this death, grief, life and recovery-from-it-all-thing. After 22 days of being in a snarky and angry state I will speak. 

December sucks. December sucks worse than raw lemons.  December has been my undoing this year. Why? I have first lived through our anniversary day. Now I must face Christmas alone for the first time in my life.  This must be faced alone because that is how growth intends for it to be: I can’t run from it. Growth isn’t easy. Deep growth requires that we look at painful stuff head on and go through it alone. Some things just ARE.  

In my closet, the Christmas decorations are in a large box. The tree is packed away in a box and secured to the pipes that run through the house.  It could be reached but I have no desire to inflict pain on myself. I do have a smaller tree that sits atop a cabinet. This I’ve decorated with the few things that Jon and I have purchased or been given.  Amsterdam, Salzburg, a wedding present…these items represent the sacred. It isn’t that the sacred is not on the large tree it is rather, that I know that putting up that larger tree is not a place I can take myself emotionally.  Maybe next year.   

I just want this to go away.  I want it over with. The season to me is dead. It hurts to be alone with this and there is no fix for it.  People don’t try to fix it. This fix that I have to wade through is only for me, myself and I. I’m not afraid of doing the wading as I’ve done lots of wading through awful stuff in the past year plus several months.

In talking with others who are making the journey to someplace else after being left by a loved one who completed suicide I’m finding that at least I’m not alone: this is common. Some of us know what we want or need and some of us don’t have a clue.  We all want it gone.

I’m finding that family and friends distance themselves because, for the most part, they don’t really understand what to say.  SAY ANYTHING. Say that you love me, that you care! Say it with cookies and chocolate. Say it with an Audible gift card. Say it with a phone call or an email. JUST SAY SOMETHING and don’t run from me.  Don’t run from us. We don’t have the plague! We’re surviving the worst death that can be had. We’re sorting out a mess of trauma and conflicted thought. We’re doing it while the world is getting happy.  We’re doing it as many of you are busy wrapping gifts to place under trees that for some of us will not be decorated. We just want to get through it. We don’t want to think about the missing gifts, the person who should be present, but that is no longer at the table.  And yet, we remember. We can’t stop remembering and the tears that are bitter, come.

For us our landscapes have changed: permanently.  We can’t get it back, and in my case I wouldn’t want it back because of what Jon suffered. 

I miss the sneakiness of the plans. I miss the thoughtfulness of finding his gift.  I miss his joy of opening it up. I miss him torturing me with the suspense of hiding something delightful from me until Christmas morning…he was so good at that.  It is no more.

In time December will take a new form in my mind and my heart.  For right now it is bleak, empty and frozen. RAW seems to be the theme for now.  It is raw at its worst and soft at its best. It has to stand in this manner right now.

In the future I will create a new landscape that is uniquely mine but for this year, I must get through the hell that is: RAW.

From The Netherlands Peace to all and to all a good 2018


A Window Inside

two white rod pocket curtains

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.


“Mommy, are we there yet?”

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.

*Note: The dog turned out to be a no go.

The Rose Room

As some of my readers know, I’ve just painted and will be painting the rest of the space soon. There was one room that has gone untouched. It is a beautiful rose color, and in it there are many treasures. It is the Room of All Things Gail.

On the walls there are works of art, and each piece has a loving history.

There is a painting that my aunt Ruth did way back when that I treasure. I love it because she let me have it, knowing how much it meant to me. There is the counted cross-stitch that my friend Leann labored to create for me. It is beautiful, and I cherish it because she performed a labor of love when she stitched it.

Along with that, my older sister Beth has a place of honor with the picture that has been with me since childhood. It is a Gail version of The Princess and the Pea. She put me in a blue dress on top of many mattresses. Each mattress is a different color and design. I love this so much and someday it will go to one of her daughters.

Hanging in the Room, and moved from the bedroom, is another counted cross-stitch. My sister-in-law Peg made this for our wedding. It, too, was done with love. Shared love is the only requirement to be placed in this Room.

I also have two stained-glass pieces of art that my mother-in-law Mary made. I am so thankful to have them.

Hanging in another place of honor is the wedding bouquet that my three sisters-in-law Peg, Bev, and Rebecca created for me.

There are two parasols that Jon hung up. I’ve mentioned in “Sneakiness is Happiness” that he backlit them for me. That is a day I will remember forever. Oh, the love that filled the space that day!

The Room holds objects that span the years of my life and are sacred to me. It holds something from a friend who I came to know in the last five years of my life. That friendship has given me many gifts of thought and hope. Thank you, Betty. The Room is my place of healing and restoration. I can sit quietly, get ready for my day, and read in that room.

In some ways the Room has existed for a few years, but in other ways the Room is new. The Room in its present form emerged into its new role in my life over the late summer and early fall. It started with knowing that I wanted to place a new piece of furniture in the Room, and as I envisioned where it would go and how it would feel in the Room, The Room grew in purpose and my understanding of the space began to change. What I had used as an office during Jon’s life would be no more. My office was to move to the other side of the house where the sunlight can stream into it and I can see out into a larger world.

This Room called Gail is a place of healing and hope. This is where my heart is found, where the healing is strongest, and where, when I enter, I find the most peace.

For those of you who read “Raw” or listened to the podcast (Parts 1, 2, and 3) that I posted late in 2017, my healing journey has been both traumatic, challenging, amazing, and in some ways even peaceful. I suppose that it has been a combination of watchfulness, the love and caring of others, and the understanding that this type of pain and hurt only dissipate when faced head-on. It is my tiny sanctuary, however, that allows me to find what I most need in my heart.

It is the realization that I can say a loving goodbye to someone I have loved deeply. He is not in pain now. It is also an acceptance that I can hold on to his memory in new ways.

The creation of this space has done its secret healing and holds a place in my soul that I didn’t understand until I let go to find it.

I don’t think that there is any single or correct way to heal from something like this. I think that the best healing comes from following your heart and soul and listening to your gut. Healing involves talking and finding a supportive listener. For the listener, you need to choose wisely. Find someone who you feel a bond with, someone who respects you, and who you respect. If there is not such a person in your life, then find a good therapist who understands both grief and the loss involved with a completed suicide.

Healing is about recognizing that you will have really good days, really bad days, happy days, and days of hopelessness. Healing is about allowing the depression that will come because of the death that has entered into your life. Sit with the depression for a time, and if it doesn’t fade, seek professional help. Healing is about understanding that the pain will diminish and calm. Healing is about loving yourself. It is about seeing yourself in the mirror as “enough”: no more and no less than “enough.”

Healing takes strength and courage. It is your own unique journey.

As I spend time in this healing space, I’m discovering its complete power. It is the power of the lit candle in the darkness. It is the homing beacon that steadies me. It is that place that tells me that I’m loved, both by myself and by many others who I both know personally and who I only know because of the Internet.

To walk through the process of healing is also to be able to look out the window on a grey day and see the sun that the clouds hide. It is a knowing that you and only you can fully understand. It comes from traveling through it and stumbling along the way. It happens when you stand up once more and say “AGAIN!” You are never beyond, but you have moved on.

Forward movement takes on many forms. Sometimes it is a return to the old haunts, and other times it is the unexpected and unfamiliar that call to the soul. In many ways, the Room of All Things Gail was totally unexpected to me. It was a feeling that I had to create a place of sanctuary.

As I write this, I am in my new, blue office space surrounded by books, my sand tray collection, and hope. This space is one I’ve claimed as mine. As I look out of the window, I see the stormy skies closing in; I see the other homes in the area. Most of all, I see LIFE. It is good. It is peaceful and this is my space now. This is the room where he wrote the notes. This is the room where he spent so many hours. And yet, this is not “that room” any longer. The painter came one November day and covered the rich green walls with my beautiful blue color. The painter took nothing away but what had to go. It doesn’t hurt like it did a year ago. This is a place I come to work and to enable the healing of others. This room also holds some treasures.

While blue is the color of my soul, it has not been the color of my deepest healing. That has been rose. That Room is just a few steps away from where I now sit working on this, and I shall go there to feel the warmth of the sanctuary: the Room of All Things Gail.

As I sit here, I realize that I could not have created this lovely space without the Room of All Things Gail. It was the power of healing that let me say goodbye to what had been, and greet anew what was to be. It was the power in that Room of Rose that set me on a journey to claim the space I’m now working on. It was the realization while sitting in that space that I could, and should, listen to my heart and follow my desires to create what I wanted for myself. Thank you, Rose Room. I think I’ll go there now to pause, give thanks, and continue the journey.

No More “I’m Sorrys”

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.”

Please Do! Suicide and Trauma

When someone takes their own life, what do you say to those left behind who must rebuild, pick up the pieces, and move forward?  

If natural death is difficult for people to deal with, traumatic death and death by suicide are far more complex. This post is about what I call “the death bubble” bursting and making a mess. Oh, what a mess a traumatic death can be! And a death by suicide is far more complex than any other type of death. Why? Maybe it has to do with the unthinkable, and that the person taking their own life, in a sense, is “playing God,” or choosing to control a process that society says, and believes, should come at a natural end-of-life sequence. To so many, it is “taboo.” 

Maybe this taboo is what makes others pull back and not say anything to those affected by the death. In so many ways, those who are faced with a death caused by trauma or suicide need different support than others. I’ll try to say some helpful things here.

This Grief Is on Steroids 

The grief that surrounds suicide is intense and feels like a volcano erupting. The catch here is that it erupts in stages, each of them violent. It quakes, it steams, and at some point in time it will explode, and then all that lava slowly runs down the sides, burning everything it touches. Everything about the event and its aftermath will alter how most people who survive those they love will alter their world view. This subject matter can be addressed in another post. For now, the reader can choose to accept that the above-stated fact is fact. 

As I’ve stated in other posts, grief does not have stages—it never has. Grief, at its best, is messy, and grief that surrounds suicide is best likened to a catastrophic eruption in slow motion.  

During the first days, people might have to deal with a biohazard team cleaning up a very unpleasant mess. There might be a loss of possessions. These possessions could be meaningful to family and friends. The biohazard team takes it all away. If authorities in the area the person resided in still place crime tape at the scene of a suicide, there is that added burden on loved ones.  

There may or may not be a viewing. There may or may not even be a funeral or memorial service. The closure that these events offer to those who mourn can be shadowed by the difficulty of these events.   

During the first few years, those who mourn are forced to come to terms with their own lives, deal with the contents of a note, or the lack of a note, ask the “Why,” say over and over “I should have,” process guilt, come to terms with the death on a spiritual (not religious) level, as well as process any religious beliefs around suicide and possibly confront them. Simply stated, many survivors of a loved one’s suicide face an existential crisis. Supporting such a crisis is challenging.  

What Can You Do?  

Everything I stated about death still applies here. There is more, and here it is:

The First 24 Hours 

If the death has occurred in the family home, please, if possible, provide another place for the survivors to sleep. Try to keep everyone together. Ideally, a hotel should not be on the list of places to gather together. 

If sleeping somewhere else will not work, the next best thing is to move in with them for the first two nights, make sure the family is fed, cared for, and assured that for right now, they aren’t required to show up for life. They are going to need to deal with arrangements for the service if there is to be such an event. They will need help on so many levels.  

If there are young children involved, and if schools are in session, ask the children what they would prefer to do and arrange for it. YOU be the one to make school calls. Empathetic staff will understand the gravity of the situation and support the children in their needs. 

Assistance with meals and errands can be helpful. With meals, consider the fact that clean-up needs to be kept to a minimum.  

The Death Bubble 

If you’ve been through a death, you know what I’m talking about: that place where the world stops for you, and the focus isn’t about getting it done. And for however long it takes, you are in this place, or state, of surreal being. The world has stopped. Then the memorial or funeral happens, and society tells you that you have to get back to the races. You step outside, see the cars and people whizzing by, and you think, I have to get back on this grand people mover that is whizzing by me a million miles an hour! How? So you jump for it, and maybe you make it, but most likely you fall off again and wonder, Why? What is wrong with me? Then you stop and you think, I forced myself to move, and I tried to leave the bubble, but I’m still really in the bubble, and HELP! With suicide, it is as if you jump into the people mover, but you are hanging in the air and you miss the people-mover, and you get all banged up. Re-entry into the bustling world happens at a slower pace.  

When someone finally reaches a place of resolution and forward movement, it is because the hard work of grief has been journeyed. And while all might not be as it once was, a new normal is emerging.  

I tell you all of this so that you, the reader, who have not been in this place, can be aware of how to help in the beginning, the middle, and the continuing future. You get through it, but you don’t get over it. For those of us who have faced this in our personal lives, there will be differences in our process, but the understanding is there.  

Please Do! 

1. Look with your eyes. Act with those eyes and be proactive about bringing in meals, coming to clean the house, take the children for playdates, or whatever else is needed. In other words don’t ASK when; TELL your family, or friends, when you will show up! Then show up.  

2. Listen to, and provide a place for, someone to talk—if and when they want to do so. 

3. This is about them, not you. If someone is behaving in a self-centered manner, they are doing so because the pain they are facing is raw. Gentleness is needed. 

4. Keep in mind that no two suicides are alike. Once again, make no assumptions that what your friend or family member is now dealing with is anything like what you dealt with. Ask what the experience is like for them. 

5. Never ask about how the suicide happened. It isn’t any of your business. If the person wants you to know, they’ll share it. The fact is that you might not really want to hear the details that would be shared. This is not violence on a screen—this is real.  

6. What was in the note? Once again, this is private. Some people leave a note, and others don’t. Some notes give detailed reasons, and others don’t. To share a personal example, my husband worked on several versions of a note which I have. In the end, the note I found was only for me, and it was short and signed in a way only I understood. The note doesn’t get shared with others for that reason.  

7. Please stay near your friend and family member. Now, more than anything, they will need you to be present. They won’t need “fixing,” just lots of love and support.  

8. Please support them and remind them that while they may have the urge to make major life decisions, now might not be a good time to do so. If a major life change has to happen before the first year is completed, be present to support it.  

Why is #8 important? If you are in a place of dealing with trauma, the chances of making a good decision in your life is slim. Staying in a routine can help to calm the eruption that is occurring during the first part of the process. When a volcanic eruption happens, you are in “fight or flight” and survival modes. This means that cognitive functions might not be functioning as they need to in the realm of competent life choices. Offer to be a sounding board and sit with them to help them flesh out the “why” of the process.  

9. While there are no set stages to this process, there might be some feelings that are common to suicide. Some of the most common feelings and emotions that arise are anger, guilt, shock, hurt, “If only I’d known,” and being stunned into inaction by what has happened. This is normal. You don’t fix it; you listen to the survivor. In understanding this, you might also be better placed to listen as someone works through #8.  

10. Could this suicide have been stopped? This might seem strange, or out of place, on a tips list. It isn’t. I’ll share some things I learned from living with a man who was bipolar, and who discussed his ideas about why some people decide that suicide is an option.

People in emotional crisis need resources that work. They need psychiatric and other mental health people to be fully present and fully willing to serve as holding containers for their pain. The family and friends that surround them need to be open to serious listening. For instance, I had to go to some very dark places with my husband. It was going into these places that enabled me to understand the magnitude of the pain he was in. He had a workable cocktail and a great psychiatrist, and psychologist, who were extremely supportive. It wasn’t enough. For this post, it doesn’t need to be explained.  

One of the things he shared is that when the urge comes, it could be just that: an urge. I would remove what he asked me to remove from the house and get him calmed down. Those three seconds of non-access to tools made all the difference for years. He knew that I understood.  

I’m glad that places like NAMI (National Alliance on Mental Illness) and Suicide Prevention are around. They do good work. I’m especially glad that they are present for children, adolescents, and those in early adulthood. When the brain isn’t fully developed, understanding the consequences can be challenging at best.  

I’ve said it often: no one should have to find the note or the body.  

The above is complex. No, not all suicides can be prevented. There are several reasons why this is so. I’ll list them in no particular order: 

  • Lack of accessible resources
  • Lack of support, or ability to get to the resources
  • Undiagnosed mental issues that could have been treated had the person sought help
  • Family structures that are too rigid and do not tolerate outside assistance
  • Religious beliefs that prohibit mental health consumerism 
  • Lack of understanding by others of what the person is really dealing with 
  • The person masking the severity of the symptoms
  • Secrets that are thought to be so terrible that they can’t be shared with another person
  • Intense mental health issues that are so painful and untreatable that the only way out for that person is to end it
  • Uncontrollable impulsivity
  • Isolation that has gone on for decades

I’ve listed just a few of the reasons the person who completes their suicide chooses this route.  

I’d like to make a plea to the Western world: Please do take the time to know your family and embrace them for who they are. Please recognize that while we can’t save everyone, we can support and help those within our reach. A smile, a hug, sincere concern, and understanding go a long way to stopping the flood that causes so many to cross over and reach for whatever they have that will end it forever.

Please Do!

Please Do! Death

As I was out walking today, I got to thinking about how many times I’ve been asked “What do I say? What do I do for someone who is experiencing grief?” Those are great questions, and as the words hit the screen, I found this post one of the hardest I’ve ever written. Why? Read on and I’ll try to lay it all out for you. 

So, here goes! I’ll write from the first-person perspective and you can consider my words as if they were also coming from others. The catch? It isn’t so easy because pain is universally messy and anyone who says or thinks otherwise needs to rethink that view. However, I’m not trying to make this any more challenging than it is. 

Consider Grief and Loss as a Complex Process

We aren’t limited in our grief to the death of someone. A move, a change in schools, a friendship that goes bad, a failed relationship, an act of God that destroys everything you owned, a shift in belief, growing up and moving on: it is all part of the cycle of grief and loss. For this post, we’ll journey with death.  

Please consider your feelings as you think of others who face the unthinkable in their lives. Please credit them for facing what they are dealing with in their own way, just as you do the same. Please consider their minds, hearts, souls, their physical needs, and the relationship you have with this person. 

You never know what will happen to you to set you on the path into grief and loss. You never know how your life may suddenly transition along paths you thought you would never be walking.  

We as humans tend to think of ourselves as indestructible until we are well into adulthood, and we still avoid the thoughts that it—whatever “it” may be—can, and will, at some point, happen to us. When it does happen, we are caught ill prepared. Few people think about the “what will I do if” scenario seriously. True, you might let your mind wander, but most people don’t really go there because they don’t want to think in those terms until it blows up in their face.  

I’ll admit that I was rare. I was forced to think about it at age 14 and again at 16 when my younger sister underwent heart surgery. I thought about her possible death, and when it actually happened shortly after my high school graduation, I still wasn’t prepared for what actually happened. But, having thought about it earlier helped. Living through it was another thing entirely.  

Some Handy Things to Know 

The catch is that what might work for one person may not be the right thing for another person. So, with that in mind, I’m going to lay down some general guidelines and a few specific things you can say and do for people in emotional pain after a death. 

The first rule is that we all miss those we care about. To say that we will never think about them is an untruth. We get through the process, but we don’t, if we’re honest, ever get over it completely. No matter what you believe about death and an afterlife, we miss those we care about being with us! Yes, at some point in time we move forward, but that movement is a process. It is normal and OK to miss and hold on to the memories. Someone just got removed from our life, and whether it has been a lifelong relationship, or a shorter one, that person is irreplaceable. This is why the “at least you can” comments, or “God must have needed an angel,” hurt so much. Regardless, these people can’t be retrieved.  

Who we are is formed by our relationships: our memories, the love, the pain, what we’ve gained, or lost, by having them. Death happens, and we can’t replace that person. I won’t delve into the negative side of a loss. I know it exists.  

The next rule is there are no other rules, because everyone’s grief and pain and journey look different. So, the first big “to do” is to remember that there is no such thing as “fixing” someone’s grief. There is nothing wrong with anyone who is grieving that a good cry and lots of caring won’t help.  

Another thing you need to understand is that humans can react like injured animals to grief, loss, and pain. We might feel the need to defend our territory aggressively. Like an injured cat or dog, it might be important to secure the wound/person in safety, and let them know you are aware of the loss they have experienced. They still might snap and react. Stay calm, keep a cool head, and give them a wee bit of space. Don’t abandon them: tell them you are still with them.  

I know, now you might be saying “Snap?” (Any label might fit this behavior, but I’ll use “snapping” here.) I don’t think I want to deal with a snapping person. Why should I have to deal with snappy behavior? You need to deal with it because at the core of pain, depression and uncontrollable reactions camp out like an ugly monster. This monster is in attack mode until it understands that it can let down the defenses it has erected. Many times this is when people turn and leave, abandoning their family member or friend. Knowing why a person is reacting violently by displaying intense emotions toward you is helpful. Hopefully they are also letting you see them in this state because they trust you enough to let you into their space. Reserve judgement because you don’t know enough to have an opinion yet. When they calm down, ask gentle questions. They’ve just let you into a dark and scary place and sympathy is needed here. Remember that empathy can allow reflection in a gentle manner. What both of you have just witnessed was powerful. You may both be sitting with strong emotions. Your reactions, both verbal and nonverbal, can be crucial here.     

Keep in mind that they might be triggered by something that they don’t understand yet. Helping them by listening as they talk it out will bring both of you closer to an understanding. Remember, this is one of the things that friendship is all about. Remember, you aren’t there to fix anyone. You are there to support and listen.   

Setting healthy boundaries is also helpful. For instance: “I think that this is pretty scary for you and I can tell that you are showing it by snapping at me. But, please don’t snap at me. I’m willing to sit here with you. I know you need someone to sit and hear the ______ that you are feeling, and when you snap it causes me to want to back off.” I actually had a friend remind me of this after I told him not to interrupt me. It was, for our relationship, the right thing to say, and I was relieved that he could keep a cool head when my emotions and pain were tumbling out in ways that I would have rather not hurt him with. At the time, things were raw, but I recognized that I did need what he offered me.  

Boundaries, set in a gentle manner, tell the person being heard that you will be patient with them, but that you are also needing to protect yourself so that the urge to leave when the hard stuff hits the fan is safe for both of you.  

This next part is tricky. In setting boundaries, you may have to go to some places and hear some stuff you don’t want to hear. If someone has to let a string of words fly that you don’t like to hear, sit with it. Sometimes the use of multiletter words is shorthand for the stuff that, in the moment, the person can’t verbalize. It buys some time to be able to return to the thought and rephrase it. Sometimes it is all someone has. Don’t set too rigid a boundary in this. Be tolerant.  

During the first days or weeks, people are in hypersensitive mode. Everything is a trigger. Relationships and boundaries get tested in new and horrible ways. This test can go on for weeks or months. I’m not excusing awful behavior. I’m saying that you can gently set some healthy boundaries so you don’t feel like running away. You can do this by acknowledging the pain you may both be feeling. The two of you are feeling it differently, and there is no correct way to manage pain. It just is.   

For some people, the depression around their grief and pain hits them hard, and for others, it is a gentle, oncoming cloud. They may or may not see it or feel it coming on. They might get defensive about it. Part of the defensive behavior is that they might not fully understand what they are dealing with. This might be a huge first for them. Don’t try to fix it. Sit with it. Our feelings and thoughts with grief aren’t always worked out quietly and gently. Trying to fix something disrupts the natural process of things.  

There Are Some Helpful Things to Know in This Process   


Tell me you respect me for getting up every day and facing the nightmare I’m living. 

Tell me that you don’t understand, but you want to understand, and mean it. Tell me this even if you’ve been through something similar. I’ll tell you what it feels like for me. Most likely it will not feel, or be the same version of grief, loss or pain. 

Tell me that you will listen to my stories, no matter how many times I need to talk about whatever it is I’m dealing with, and follow through with this promise. I’ll move forward in my own way and in my own time. Don’t expect to see me on a schedule, because it doesn’t work that way.  

If it is OK with you, tell me I can call you when I’m in a bad place, and then be there for me when I do get courageous and risk calling you. I’m not going to be in a good place, so you will need to drop what you are doing and create a safe place for me to let it all out. 

Tell me I can fall apart if I need to, and mean it.  

Tell me you will sit with me until… (This might mean different things to different people. This sitting business is hard.)  

Get Curious

Sometimes what ails the soul needs exploring and understanding. So ask if you can question me about what it is I’m struggling with. Your healthy curiosity will cheer me on. I may, or may not, be desirous to share my experience with you. Ask open-ended questions that require a sentence, paragraph, or even a page to answer; be patient. Grief, loss, and pain aren’t contagious, so feel free to learn about what I’m willing to share. The things I’m not willing to share might change over time, so be open to a changing landscape.  

This means that you might ask some very basic questions. Tell me in advance that you are wanting to understand me, the pain I’m in, and you, just like me, are summoning up the courage and bravery to explore and learn. Turn towards the unknown. As you face the pain with me, I’ll still struggle, but I won’t be as alone.  

Understand that when I’m alone, I may still dissolve into a ball on my bed. I might shed tears that I can only cry in privacy. This is normal and part of the healing process.  

Consider that the “first” of everything will be hard. I don’t know how I’m going to feel, so ask if I want company on a holiday, birthday or anniversary. If I say that I need to be alone, ask if there is anything that you can do to help ease the day. A simple phone call might do the trick. I might not be ready to do lunch, or anything, in public. Respect my wishes. On the flip side of this, keep me in the loop. I might be one of those people that needs to know what’s going on in the world despite not being able to pull it together enough to get out. However, I might want to get out, and then when I’m there, I find it was the wrong choice, so allow me to exit stage left gracefully.  

Sometimes someone’s struggles might require a meal six or twelve months after the grief has set in. (The grief might not set in for over a year.) Bad days come at different times. They are not predictable. This is also true for being able to provide self-care for oneself. While the thought might be appealing, the energy needed to actually pull off the self-care might be lacking. Making the coffee or tea and cleaning up the mess is a huge help. Running the bathwater for the much-needed soak and cleaning up the mess might be necessary.

Sometimes the person can tolerate reading, or being read to, and other times, the sensory overload is way too much for them. It is the same with music. This is not abnormal. The brain can get messed up during this process, so be gentle and sensitive.  

Fixing Me and Fixing “it” Doesn’t Work 

Fixing me or fixing it—whatever the “it” is—can’t be done, so instead, learn to sit with the uncertainty that the ugly pain brings to our doorsteps. I think it is the idea and desire to fix the pain that someone is feeling that leads to all those “don’t say this” articles, as those comments, no matter how well meaning, cut like sharp knives and cause deep wounds to be opened. If you want to offer reassurance, offer the reassurance that you will walk with someone through their grief and pain for however long it takes. Saying something like “Get over it,” and other comments like it, tells the hearer of the comment that you are wanting to fix it and rush them through a process that can’t, and shouldn’t, be rushed. “Fixing it” is more about your needs. I think this is also one of the reasons why “at least” and “they are in a better place” comments are so unwanted. While it might reassure the person who says it, such things are insensitive to the loss that is on the surface. It feels like a fix and a “I need you to exit your grief and get back to the way things were” kind of thing. Things won’t ever be the way they were. 

What Do I Say? 

Start with “I don’t know what to say, but I’m really sorry that this has happened in your life. I can’t imagine what this is like for you. I’m bringing dinner over tonight/tomorrow.” (Then show up—no excuses!)

Make this about the grieving person. Ask about sharing memories of the deceased. Many times people hold back with this. Sometimes when people lose someone, they want to know about the things that others remember, and reminisce. There is a desire to share what we loved about them. “Gone” doesn’t mean it’s a taboo subject. “Gone” can mean that the need to remember is vital, and it should be present in our relationships.  

Sometimes it’s actually the “doing” of something. One of the hardest things for widows or widowers to do is to grocery shop. There is something about roaming the aisles that sets the mind, the memories, and the grief flowing in ways that nothing else does. Maybe it’s all the stuff they loved to eat, or the fact that you won’t be fixing it for them anymore. Maybe it is all the stimuli going by that causes people to abandon grocery carts and head for their cars without having purchased anything. The cupboards may remain bare. So, offering to help with the shopping might be useful. Offering support for this task might be just what is needed, but then again, it might not be easy for the person to tell you what they want and need. It might be helpful to go with them and have a list, so if they need to leave, they can, and you can finish the job for them.  

Keep in mind that it is embarrassing to have laundry pile up and not take out the trash. Offering to help with this, if you know them well, might really hit the spot. Brew up the tea or coffee, or whatever it is they are drinking, and let them relax. The fact is, a cleaned-up space can help them relax. Actions count!  

There is so much, but I think I’ll leave the reader with these parting words: you can’t fix it, replace it, or rush it. Speak words of gentleness and care. If the words don’t contain your own need for fixing, replacing, or rushing of the process, you are on the right track. 

Jon’s Hideaway

Memorial Blog: Jon’s Hideaway

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 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.


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

Here’s just one example: 

Happy Birthday to Me!

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.


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.

1) Upworthy: We Need To Talk About The Way We Talk About Robin Williams’ Suicide

(2) Mashable – Finally, We’re Talking About Mental Illness Like Adults

(3) World Health Organization – Fact Sheet – Depression

Het is so ver

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.

All I can do is try.