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Reflections on a Sunday

Yesterday my Sunday peace was shattered by the sound of sirens. I live one block or so away from the police station, which is very quiet, and safe. Needless to say, I’m located in a safe area of town. That wasn’t the situation yesterday, and first one siren shattered the silence of the peaceful Sunday afternoon. 

I noticed that the siren came closer, until I thought that it must be nearby, even on this street. I lowered the shade and looked out, seeing a police car with lights flashing parked on the other side of the street. Then more sirens, and within several minutes, two ambulances were parked there as well. Injury? Domestic violence? I don’t know the people in that house. It was only then, standing and looking at the police car and the two ambulances, that my brain took me back in time to 28 August of 2016. You never get over suicide; you get through it. I sat here at my computer and continued to work on the project I was doing and slowly began to let what was surfacing in my mind out. I had been a part of the disruption to a quiet Sunday that day. I know the police were here, and I know the mortician showed up, but I don’t know what other cars were here. When the nice police officer told me to go inside, I went, and I would not emerge from my home until after 10:00 that evening. I was on autopilot then, doing what I was told to do. 

I won’t ask what happened, because I don’t want to know what act of “whatever” shattered my day and sent me back in time. After all this time, stuff still emerges. The peace and forward movement seem to be an illusion that a look in the mirror can shatter in an instant, and yet, if we avoid the mirror, we avoid life. 

Lately, and as I continue to age, I’ve discovered that not all “old people” have wisdom. I’m taken back to the lyrics of Neil Diamond’s “I’ve Been This Way Before” and reminded that “Some people never see the light until the day they die.” Now I understand that many people will die clueless about themselves and their lives. When I first heard the words, I thought to myself, I don’t think that is a wise way to live a life. And so, I look in mirrors and I choose to stand rather than run from the images there.

Standing at the mirror is hard work, whereas running from the images will claim our lives in different ways. What? What’s this you say, that if I run from the mirror, doing so will alter my life?  Yes, when we face the mirror, we must look hard. What do we like? What aren’t we pleased with? Why? Then we need to explore the reasoning behind the expectations we hold for ourselves. We are faced with new insights such as “I’ll never get into those jeans again because I’ll never be sixteen again and my lifestyle has changed.” How about this one? “I’ll have an older-looking face because I’m older and have lived x number of years.” The recognition that the mirror brings to our lives is good. It calls us to reality. 

I know a hospice chaplain who shared with me one of life’s and death’s realities: “How we live may determine how we die. Anger doesn’t make for a peaceful death.” I had not really given it much thought until she said those words. I love my sister, and yet the last fifteen minutes of her life were the most violent she’d ever seen. It is true that she died from liver cancer, and that the cancer was destroying her body, and it is also true she was one angry person. I don’t know for certain that there was a connection there; what I do know is that I’ve known peaceful people to die peaceful deaths. The exceptions would be the violence we can’t control. 

Reflecting on all of this takes me back to Jon and his death. He spent a great deal of time with the mirror because he had to sort out the bipolar and the family—and, ultimately, his life. He told me that he’d researched the how so that if he made the decision to end his life, it would be a one-time action. 

There is a part of me that will always have wanted to send him off with love, and yet realistically that is something that could never be. I’d be doing jail time. 

We may get through a death; we can face the good and the bad realities of a relationship and choose to move forward. We never get over the reality of what happened. We don’t get over it because you don’t get over someone you loved deeply. 

If you get through it, what do you do to get beyond what has happened?  You look in mirrors. That means you commit to asking some really hard, and sometimes scary, questions. Getting through the bad stuff in life means that we have to commit to deep changes, such as not running from the reality the mirror is showing you. Yesterday, it meant that I lowered the shade, stood at the window, and allowed the peace to be broken and the memory to return. It can make us squirm because of what we must do. It also causes the peace to return when I realize that I can continue to do this hard thing well. 

One of Six

This last week, I began to complete my Continuing Education Units (CEU) for my license renewal cycle. I need to be properly informed. A course per day keeps me that way. 

For most of the needed hours, you can choose what to learn; you must comply with the legal requirements for the license renewal cycle. This year, along with the regular legal courses, there is a requirement to complete several hours on suicide assessment. I cringed. I don’t want to go there; I know things about assessment that no instructor MA or PhD is going to know. 

It began on Thursday with two hours on suicide and grief. Geez, dude, it never ends! I’m glad he said it. He disclosed his survivor status and I thought, OK, a person who’s been through it. I was still in caution mode. What does this guy really know if he lost his brother when he was eight? 

Suicide is a delicate subject, and so is death in general. You have people that believe that children are too young to know the truth. Children who have to face active shooter drills in school! I think adults underestimate what children can process given the correct, age-appropriate information. Death, and death by suicide, are no exceptions. We need to have honest conversation with children about death in all its forms when it arises. Kids have questions. 

There is a culture of fear around suicide. While I don’t support anyone actively dying by suicide, I support honest discussion on the subject. I believe that those of us who have faced this in our own lives tend to understand it better. Talking about it can enable the person having suicidal feelings to explore them, discover the facts, and separate the truths from the fiction. 

Here are some facts and fictions that matter:

Fact: When someone feels a sense of belonging, they are less likely to die by suicide. The feeling that a person belongs, and has someone or someplace to seek companionship, can make the difference between life and death for many people. Places such as the Utah-based Encircle organization are excellent examples of this. These places provide services and a safe haven for LGBTQIA+ souls who otherwise might be at risk for suicide. Creating belonging goes a long way.

Fiction: Saying you’re going to commit suicide is an attention-seeking act. Let’s not judge this too quickly. The saying of the words are an opening for discussion. Someone might want to open up the conversation in a real way; they might want listening. They could need professional help; they don’t want you to fix them. If this is being repeated, it calls for gentle prompts to seek more listening than you are qualified to provide.

Fact: Suicide can happen when the person perceives resources are gone. Notice the use of the word “can” here. Some people who die by suicide are in therapy, feel a sense of belonging, and ultimately still choose to end their lives. This is particularly true with the bipolar population. It is also true of other mental health diagnoses. Sometimes, despite the resources available to someone, the mental suffering and anguish are so great that the perceived ending of the suffering becomes an option. This was Jon’s situation, and I understand why he did it.

Fiction: If they get help, it will solve all problems and the issue of suicide will disappear. As cited in the fact above using my husband’s death as an example, help doesn’t always meet the need. He had help, but there was the pain of waking up every day and feeling the depression. It didn’t let up, and at the end it developed into something else that caused him to die by suicide.

Fact: A person may spontaneously decide to end their life and carry out the act in less than five minutes. One thing that can alter this is having a safety plan in place. Who can a person call? Are the numbers ready at the touch of a fingertip on the phone? Is there a place they can go to so that they are somewhere else for a time? Are weapons, and other lethal methods, out of reach? 

Fact: They may feel like a burden to others. This is real and should not be discounted. A person in chronic pain, with a chronic illness, or with other issues needs to be heard deeply and be given authentic information that supports them staying around. 

Fact: For every suicide, there are six people affected directly. There are more affected in an indirect manner. In my situation, there were more than six people directly affected. This isn’t about dishing out blame; it is a fact. The fiction here would be that if you mention this fact to someone, it will stop them from dying by suicide.

Fiction: We can prevent all suicide. We can’t, no matter how much we may want to do so. There are some situations where even best efforts are going to fall short of prevention. 

Debatable: No rational person ends their life. This last item is the reason why there are laws in states and countries surrounding the ending of one’s life. It is why it takes two medical doctors to give the OK on such a thing. In countries where this is legal, the use of this form of euthanasia is lower than most people would guess. It is also something that most physicians don’t want to do for a patient. 

Back to the main focus. 

I want to bring up the stages of grief, and why they don’t work here, and will never work here. The stages of grief focus on the living and those who are dying. A hospice chaplain or mental health practitioner will have the skills to guide the dying and those who are loved ones, and in some cases friends, to a resolution around the impending death. The living are given the chance to make peace with the death that will occur. They can plan for it. 

Given the above information on Elizabeth Kubler Ross’s stages of grief, once it happens, there is no resolution. We can’t resolve issues in the same way we can with the living. If we’re doing the work of exploring our grief and pain well, we’ll also uncover new thoughts and ideas that we can’t explore with the dead: they’re gone. 

The fact is that stuff resurfaces in different forms. What you thought you had worked through rears its ugly head and you are faced once again with the death, the fight, the misunderstanding, the thing they did or you did. You might rehash a feeling of “if only” and realize that you can’t take it back. 

Ultimately, the resolution comes to us when we accept that there is no resolution for death, and suicide in particular. You never get over this; you do get through it by not going around it. Navigating our lives will change, and while we’ll move on, we’ll never move over it. Some people feel that forgiveness can resolve the issue. I’m of the opinion that there is nothing to forgive. They did what they did, and while we might carry unresolved guilt around not being enough, once again we need to cut ourselves some slack, offer up a huge helping of grace, and then we can move forward with our lives. 

Where’s the Village?

Anger, rage, and the ongoing process of being shoved to the margins as a disabled person: it places the disabled in a position of being labeled as angry, and while some of the label might be justified, not all of our anger as a community is justified.

This past week I was given feedback (privately) that I have anger issues around disability. It has caused me to experience some sleepless nights, and to question how much of my own stuff I’ve worked through.

After sitting with the feedback, crying, and realizing that I don’t want to offend or put people off in such a manner that I would not gain support of the issues I’m passionate about, I decided that I do have some unresolved issues.

The issue around the anger is twofold. The first part of the anger stems from how society has misunderstood the disabled, underestimated us, and passed judgement on what we as individuals can and can’t do and what we need to make our lives work. This in itself is enough to cause riots, and the riots don’t happen. Why? Because we don’t have the energy to riot: we’re burned out. 

We’re burned out because we’ve reached out to different communities and we get put to the marginal space once again. It sounds like this: “Sure, we care about you as a disabled person, but ____ takes precedence. We’ll get back to you and address it.”  When someone uses “but” in this way, it feels like a negative. It feels like everything before the “but” just got washed out to sea. 

The Americans with Disabilities Act (ADA) solved some physical issues. Someone in a wheelchair can access an ATM/PIN machine. There are ramps, not always convenient to the wheelchair-bound person who needs easy access. There is still the battle with health care about what one needs or doesn’t need. I hope you’re getting the idea. I haven’t even touched on government issues. In the government arena, it is both good and bad. Oh, do I lump education in with government? It is society.

Then the other part of the issue arises, and this is an emotional killer: a disabled person can be ignored, discounted, not believed, ridiculed, or told that they look weird or act strangely. And, in 2023, the hardest insult of all is “Why were you born?”

Is it any wonder I’m royally pissed off around this issue? No. 

I realize that I can’t save or fix the world. I can only guide someone to a resolution of their issues. I can only do my personal work around my own issues, and sometimes that is a daily chore. So, in an effort to heal misperception, I’ll offer up some tips. 

Nature does what nature does and nobody is to blame but nature. Nature does its own thing during pregnancy and sometimes nature creates a person with a disability, an orphan disease, or a deformity that can’t be surgically corrected. It’s a part of life, and for the believer, God didn’t do this to your child or to you. You are not being punished. Life happens and each of us are the lucky souls that get to deal with what life deals to us each day. 

Sometimes injury happens. Injury can take many forms: a car accident, a sporting accident, a bad fall, a stroke, a fire, a natural disaster, a fight in which one person is injured. Even a person who is trying to protect themselves from danger can make a choice that creates disability. How a person arrives in the wheelchair, deformed, blind, deaf, or brain injured is the backstory that each disabled person must come to terms with.

A good definition for Traumatic Brain Injury (TBI) is a sudden injury that causes damage to the brain. It may happen when there is a blow, bump, or jolt to the head. This is a closed head injury. A TBI can also happen when an object penetrates the skull. This is a penetrating injury. Talk to a competent physical therapist and they’ll be able to tell of ways people get injured that I haven’t listed above. 

We each have a back story: What’s yours? Remember the kid you saw having the meltdown in the grocery store, and the parent just stood there, and you passed judgement? Not so fast! The meltdown may be due to something other than poor parenting. It might be that the child is overstimulated by the environment: too much noise, music, too many people, and not enough brain development to use words to disclose what is happening on the inside. A parent with a disabled child understands that during a meltdown might be the wrong time to swoop in and remove the child in distress from wherever they happen to be at the time of the meltdown. If the parent knows that they could be injured by the child, it’s a hard call. Are you thinking that the parent needs to leave their child home? The parent might not be able to afford the luxury of a qualified caretaker for the time it would take to run all the errands in the universe. This might be their only option. 

Once, while on a chat site, the issue of getting hired came up. The person wasn’t hired because the company want “that weird-looking person working as the receptionist”—a job that this person was qualified to work at. When companies hold this attitude towards the disabled, they drive the person to a place of unemployment. If a person with a degree can’t become employed, what do they do? If they try to get government assistance and are told that they fail to qualify for benefits because they are employable, what are they to do? If they make the effort to work with a job coach, and the job coach has little to no training in working with the disabled population, where does this person go for help? They wind up in chats, the crazy builds, the anger builds, and those who can are told they can’t. This is an issue! 

Money doesn’t grow on trees, and a government can’t finance all of it. True, and companies could do better as well. This issue is for another post. This is complex. None of us live in a utopia. Some of us are able to create a supportive village that can lend a hand. If it takes a village to raise a child, it takes the village reaching out the greater community to assist with those who are disabled in our society. I’ve only touched on a few key points here. 

The village is where it begins. Maybe someone in your village can begin by writing letters, making phone calls, and learning how to assist with the disabled child or adult. Offering to understand the backstory, the lack of resources, and the battle that a parent might be fighting between working and caretaking are all good steps to understanding the meltdown in the grocery store. 

Why do I have anger issues around disability? Because there are not enough caring villagers who will stand up and lend a hand. Please, become a caring village member and find out about someone you might enjoy knowing. 

Going In and Coming Out

It is a fact that grief is unique to each of us. We go into the process thinking that there are rules, and we emerge knowing there are no rules. Nothing is certain because nothing in life is certain. As much as we may deny it, at the beginning we’re grieving because something happened that was unexpected.

After Jon left this life, I didn’t do anything major for two years. My rule was simply to not make a life-changing decision during the first year of a life crisis, and I extended that to a second year. 

When the severe crying was over, my days were mostly calm, and I was moving into year three when the real changes began. I’d taken over the larger room and turned it into my space for when I would return to work. This meant sorting through things that had to go. They were his, and I didn’t need his stuff in what had to become a new space. This process has taken several years. 

I decided to let things happen in a natural manner. My desire to trash things has gotten the better of me at times, and this time I’ve exercised a great deal of caution.

The big change has been sitting with the space, thinking about what I really want for it, and allowing the thoughts to come as my head let them come. It is also about making decisions that are realistic. Like a person becoming sober and clearing their head, grief—and the journey out of grief—will take us to places where our heads clear up. Think of it as grief sobriety. This doesn’t happen rapidly; it takes distance and hard work. Sometimes clearing the head takes years because we don’t have the ability to ask the correct questions in the beginning. 

Doing a reclaim of the self is about time. Who was I before this relationship? How did this relationship make me a better person? What did the relationship do to me that wasn’t good for me? How is my relationship with myself affected by this event occurring in my life? Each of these questions are questions that we answer as we look long and hard into a mirror. Ultimately, we answer the questions, and this allows us to move forward. 

One of the tiny things that I realized was that I’m living with chipped cups and plates. It began to bother me each time I took a cup or plate out of the cabinet. Last night, the feeling hit a fever pitch when I saw something that I liked, and for a price I loved. The thought entered my mind that I didn’t need to live with what was not pleasing me. I could replace my daily table setting with something that would make me smile. Ordering that blue set was liberating. Ordering the set triggered an insight into what I was doing in the home to make it mine. Now, with my eyes open, I was seeing clearly. I need to let myself enjoy the space I have here. I’m widowed, loving my space, and I can do what I want, when I want to do it. That is the plus side of moving forward.  

The Gift of Grief

There comes a time in the process when we ask ourselves: What do I want my life to look like moving forward? This is the gift of grief, growth, and exploration. 

Creating our future comes our way when we’re able to make peace with the past and move ahead with an understanding that we’ve done the deep work of our past life. We are usually older, wiser, and with the living we’ve done comes a freedom to think it through at a slower pace. 

The healthy side of grief allows us to slow down and to plan an unrushed future. I think of this place as being in a condition of contentment.  

Coming out of grief could mean we’ve been deeply affected by any number of life situations: death, divorce, realizing that we are LGBTQIA+, coping with a disability, experiencing traumatic events, growing up and moving out on our own, or something else. Recognizing that we’ve been in a foggy place, and now the skies are clearing up, is what coming out of grief is all about. Most people quietly leave where they were for where they are. We don’t even think that we’re glad it’s over because it’s a velvet transition. 

While entering the grief space is, for the most part, traumatic, walking into the future is soothing. 

If had been told at four years after the loss that I had to sit down and plan the future, I would have planned a messed-up life. At four years, I was ready to work and to learn again. I was ready to think about what I wanted beyond that point in time. For instance: I wasn’t ready to consider new tableware. I wasn’t ready to make the emotional parting: I needed time to say goodbye. 

Gail’s Learning Since 2016: a Few Tips

Allow the tears to flow and the anger to do what it needs to do within yourself and avoid others who tell you that you’re on a schedule. 

Don’t force something that will happen naturally. Forcing emotions that aren’t ready to surface can be distressing. 

Making life decisions before the end of the first year of whatever it is you are coming out from might not be such a healthy place to go. Take the time to let your head clear. 

With some types of life situations, there are things that have to be done legally, and they are on their own schedule. You might not begin to grieve until the resolution of an estate or other major happenings. You may need to sell the home, move to a new place, or do other things in a rapid manner that will affect your grief process. Cut yourself some slack. Do the essentials and work to calm things so that you can connect with your grief. 

Isolation within a relationship is not healthy. Being so content that you spend time only with a partner can lead to social struggles when the relationship ends. Stay engaged with others! Healthy relationships thrive on variety and a sprinkling of others that we can engage with. 

Your address book will rearrange itself. I can tell you from personal experience that some family couldn’t deal with a suicide, or a faith change, and they distanced themselves. It was the same with people who I thought were friends. Grief shows us who is able to stick around when the life waters get choppy. There are also others who show up in amazing ways. These are people who are living life in a way that allows them to join us where others can’t go.  

I believe the greatest thing I’ve seen and learned as I’ve traveled this path is that rushing into anything that can be slowed down will pay off in a huge way. Rushed relationships can end sadly; rushed life changes can land us in a pickle. Saying we “won’t ever_____” may cause us to need to recant the words. Judgment can come back to bite you, and wanting it to all go away will cause you to miss out on discoveries that will make all the difference. What we think we want at the beginning isn’t what we’ll need at the end of the process. We don’t need a quick fix: it’s a thoughtful journey, this walk in the woods. 

Semi-Rant

Death can numb us physically, mentally, spiritually, and emotionally. Most people don’t die without it affecting others with some level of trauma. Think about it. Even the person who dies in their sleep can have a partner wake up with a dead body beside them. There is trauma in this. 

While birth can be a joy-filled time, death isn’t. Sure, we might be thankful that they are out of pain, no longer suffering in other ways, or “at peace.” Death leaves the living with the reality of feeling and doing what we need to do to get through it and move forward. We can behave poorly after a death. Remember, we’re in no condition to think straight. Whether we realize it or not, we’re in the twilight zone. We’re not ourselves. We’re in the death bubble. Sooner or later, we’ll need to exit that bubble and get back on the conveyor belt of life.

Getting through the process is about reconfiguring our new lives to work without the loved one, or not-so-loved-one, in our lives. We’ll miss the former and think we can get on just fine without the latter—until something doesn’t go quite right. Then we’re facing the whatever it is and making it right. 

Anything can happen. Parents don’t think kids are grieving correctly; kids feel or think a parent should get over it; grandkids miss the grandparent who the parent is celebrating the death of, and they are numb to themselves and each other. 

All of a sudden, rifts develop; people once invited are uninvited, and people fight over petty things. What was not resolved in life becomes a nightmare for those who remain. There is more numbing, and it seems that we no longer notice the real pain. By now it might be all about anger, loss, and a grief we can’t speak of because those we thought would be there to hear our pain ran out on us to escape into their own pain. It’s a cycle, and it only resolves itself when someone says to themselves or others, “ENOUGH!!!!” 

If we’re lucky to have someone with the insight to call out the crazy, we might just get to a new place with it. That person may be you. You may be the only fix that there is. The reality of it all is that we can only fix ourselves. The great personal thaw means that you engage with yourself in the healing process. This can be the greatest challenge of all: to heal when no one else gets the repair work you are doing. 

In the seven years I’ve been dealing with my own grief and loss, and the pain of others, I’ve seen and heard some really painful stuff. I’ve asked myself why people move on too quickly and don’t do the work that would lead them to true peace, and then I think about the crazy of it all. 

Is it possible to have burnout from grief? Can someone burn out from too much pain? I think they can. I recall a health course I took in the fall semester of my second year of university work. I was sitting next to two guys as we all filled in the stress scale the professor had distributed. In the period of one year, I’d gone through two significant family deaths, made a major life change, and had checked a few other boxes. I looked at them; they looked at me, and all three of us realized that our scores were much too high to be normal. It was the nonverbal, silent signal of knowing. I wasn’t in my right mind. What was I doing there? At the end of that year, I moved home, found a therapist, and began to sort out my head. Looking back on all of it now, I realize that I’d had enough physically, spiritually, emotionally, and mentally. I was so deep into grief that I didn’t know how deep I was into grief. I came out of it, and now understand the crazy. 

I believe that one of the things that saves us from yelling at others to get over it is that when we do the work of getting through it, we’re gifted with the understanding of the hard work that must be done. We’re able to hold compassion for the crazy place grief, loss, trauma, and burnout can carry us into. 

The work begins with a desire to pop the bubble of denial, and to seek for better ways of facing our pain. 

For some people, death is death: it is what happens at the end of life. It is what it is. For another group of people, death opens up a need to make sense of the existential mystery of why it might have happened. For yet a third group of people, they engage the theodicy mind trap. I’m sure there are other possibilities. It is to theodicy that I’ll turn my focus. 

Is it any wonder people turn from God when God gets abused? The use of theodicy— a way of explaining why God allows evil to happen—to explain loss, pain, and stuff that happens for unexplainable reasons can drive a soul mad. I understand that there are people who abuse, and even purposely damage, their own children. It is wrong, and I hope that such abusers are discovered and dealt with, and that their children are given a chance to live better lives. Children don’t sign up for mistreatment. Theodicy is a form of mistreatment, and is spiritually disrespectful to all human beings. Higher powers do not create death to teach someone a lesson, take someone because they are needed someplace else, expect us to bypass the grief process and focus on an afterlife, or cause intentional suffering (for instance, the birth of a disabled child). 

Tragic things happen, and we must face them honestly. Nature does strange things to bodies, and we must accept nature doing its thing. The human gene is a tricky thing, and we can be brought up short by the screwy things our genes do. Early in life I had to learn that nature behaves in unruly ways. It just is. That being said, I’ll return to the stuff that can be controlled. 

I can, and need, to control my own behavior. I can decide to behave kindly towards others in pain. As difficult as it is during the process of grief, loss, painful experiences, and whatever else I experience, I can choose to apologize, show compassion, and make amends as needed. In the end it takes less energy to show kindness to myself and others. It also keeps my brain well balanced. I’ll cry, scream, get angry, look in the mirror, face down the monsters, and make peace with it all. In the long run, that will serve me well.

This has been a nice semi-rant. I hope you learned from it.

Soul Work

During my early years of working through grief and loss, I was in survival mode. That is where we all go in the beginning. We revert to the lower levels of survival. We go to the base where we can best survive. Hopefully the house gets cleaned, food gets eaten, and we manage to stay somewhat healthy, both physically and mentally. That is baseline grief. Baseline grief looks ugly. It isn’t a place that most would willingly go to, and when we’re there we want out. 

As time moved me forward, I began to change, to grow, to search for something deep inside. None of this made sense, but then what I was living no longer worked for me. I’d grown into a new place, and it required a new beginning—a new base level to grow from. 

I’ve discovered my mystical side. I fell into the mystical in a most unexpected manner: a former nun and clinical psychologist who led a spiritual life and showed up just when I needed her to do so. She entered my life at a time when I was exploring new things and new options. She walked with me as I engaged in the Ignatian Prayer Exercises. Through his process, I found something that I needed: the ability to sit in silence and contemplate. It was grounded, and it opened up avenues of new understanding, leading me to do the deeper inner work of the soul. This is where East meets West. 

This is where I found out that I needed to chuck what didn’t work because it would never work. I’d been trying to use someone else’s idea of what a spiritual life was. What did I think my spiritual life should look like? It would be unique to me. 

As I engaged in new forms of being in a spiritual way, I began searching for other places of learning. I’d heard about the enneagram, and hearing my first podcast about it made it seem complex. There was something about this enneagram thing that drew me to it. I began to look for a book that would explain things in simple terms. I found one called The Road Back to You and digested it. It’s a very basic primer, and what it does very well is enable the reader to get a sense for the number where they might fit. Its downside is that it doesn’t go deep enough. Soon I discovered that there were better ways, and there was more to this thing than nine numbers on a weird-shaped, nine-pointed thing. 

With all the therapy I’d done, and now spiritual direction, I was looking for a spiritual growth tool that I could use for myself, and that I could use to work with clients and directees. If someone is interested in this growth tool, I’ll use it. If not, I don’t pursue it. 

When I first began therapy, I did a great deal of talking. I needed to talk. While the talking helped, and worked for me during that time of my life, deep down I knew I needed more. How does one fully engage with the shadows of a life? How could I deepen and find a path into personal growth that would work for my entire life? I needed to find an enneagram teacher. There was something in this spiritual growth tool that I wanted. I began to plan and to engage in course work. Good stuff, this enneagram! I was finding a way to engage the deeper shadows and discovered its power. 

Growth, and the inner work of growth, is never easy. If it is easy, I’ve found that I’m not going deep enough. I’m not being fully honest with myself. Looking into mirrors can be difficult, terrifying, and the greatest gift we can give our souls. It is also tricky. 

I’ve noticed that while people want to change, want answers, and will even tell themselves they can do the changes needed, sometimes the past fouls it up. Sometimes past traumas, letdowns, or the reality of what we must give up to get what we seek traps us. We think it will be easy; we think it won’t hurt; we can’t sit with ourselves for the length of time it will take for the process to affect us and move us into change. We sprint out of the awful, find safety in old ways or a new distraction, and slam the door just when we need to keep it open. Hiding in bubbles doesn’t work. 

It Sounds Scary, but in the End, it Frees You

How do I know if I’m ready? The answer to this question is complex. We don’t find relief in catharsis—that is a temporary fix. Relief is found when you can sit the monster down and engage in a conversation and decide two things: the first thing is that you want to understand the monster, and the second is that you will entertain the monster in conversation so that you can learn from it. 

This is not easy to do, because we delude ourselves by thinking that we can win our monsters over with one simple chat and a table of cookies and tea or coffee. This is not high tea: this is plowing the field and finding the huge clods of earth that need to be broken up and put to use in healthy ways. 

Our monsters want all our tea, coffee, and our cookies. Our monsters lie to us. They tell us that we don’t deserve the good stuff of life. Sometimes our monsters deceive us into believing that there are shortcuts. As much as I love a short route to places, I’ve discovered that I might miss some essential scenery if I don’t stop along the way to engage the process. This brings me back to mirrors and the enneagram. 

I have found that I can use the enneagram to understand my monsters. I can meet them in a place where they feel respected by me, and I can converse with them in ways that are generous and insightful. I am taught and moved to new places. I don’t always like my teachers, and that is OK, as long as I hold space for the learning that comes because of the conversations. 

This trip through grief has taught me that there are better paths to follow and better ways of seeing myself and others. This trip through grief has also taught me to question and to find new ideas, and that taking the leap into the unknown can be scary, challenging, and just the thing we need to do to change in unexpected ways. This soul journey is going to last the rest of my life, and that is good. 

No Life Hacks

The Quilt

In 2017 I traveled to the US to attend a conference, to see a friend, and to spend time with my family. 

My mother had died on January 13th, a Friday. It came five months after Jon’s death. To be truthful, I was still crying for Jon; now I had to cry for her as well. I was numbed by Jon’s death; I did my best. I knew I would be bringing some treasures home; I didn’t know just how much.

My mother loved green. Her bed had this lovely green quilt, and it was filled with many other colors as well. The tiny flowers that danced across it brightened up a room. 

While at my sister’s, my sister and sis-in-law came bouncing in with the quilt: “You need to take this home, Gail!”

HOLD IT!! I don’t do green—I do blue. I didn’t have a bed that would work with that quilt. I took the quilt. What would I do? In December of 2017 I ordered a new bed with a blue headboard. The quilt would work with that bed. My mother would approve. Yes, I had decided to honor her with a bed large enough that the quilt would work. It felt good. It resolved something; seeing the quilt on my bed was just what I needed. 

Had I tried to force emotions around my mother, the gentle peace that came to the process would not have happened. The fun and delight in finding the bed would have been stolen, and the crazy part of all of it, the part that made it my mother, would not have come into being. The memory of it all is delightful! 

As I sit here writing this in 2023, my mind is taken back to the recent past. I’m thinking about the fact that grief does its thing on its own timeline. If we do our work with that in mind, things will surface when they are ready to surface. There was no need for me to “hack” it, or force anything to happen. 

While I’ve done a great deal of work around Jon, I thought about my mother, who was ready to go when she went. It is the two most recent sibling deaths that I haven’t fully processed. 

The Nightmare of 2021-2022

I was raised in a large family. I’m the middle child, the middle daughter, and now one of two living siblings. 2021–2022 is a time period I’d rather not relive. It was a time when I had to face the possibility that all three siblings could die. 

April and May of 2021 played out like a horror story. It began with a phone message from my sister, Beth. I knew. I knew that this call was to tell me she was dying. She was hopeful, felt they could treat the liver cancer. But I knew. Over the next year, it unfolded until an ugly death scene played out as her husband witnessed the end in a period of fifteen minutes. By the time the hospice nurse arrived, she was gone. A year of sadness ended. I miss her but am glad her suffering is over. Writing this seems to bring insight that, in many ways, the year of processing was what I needed.

My two siblings and I understood the fact that my brother wouldn’t live to the end of 2021, and, mercifully, he died that fall. A call from my sister-in-law alerted me to the fact that he’d been admitted to the local hospital late on a Friday evening. He never regained consciousness, and around Sunday at noon he was gone. When I got the WhatsApp message, I yelled into the cosmos; I was so angry at him for not taking better care of himself. I was at him: crying, yelling, and making peace with it was all I could do. Singing at his funeral was also a good thing. 

Returning to May of 2021, my younger brother had a heart attack. When the testing was done, he was facing a quintuple bypass. (As far as I know, the record is a septuple bypass.) I cringed. With that heart attack, and the surgery he’d face in July, I had to face the ugly truth, and I’d better face it full on. He might not survive it all. 

I didn’t want to do any of this grief work, and yet, it stared me in the face like the ugly monster in the dark. I could become the only living sibling. Yes, I have nieces and nephews, and even great nieces and nephews. The thought of being alone, thousands of miles from family, was terrifying to me. 

Fast-forward to 2023, I’m fighting the tears that for some reason won’t come, and need to come. There is no “life hack” for this. As much as I know I haven’t done all the work yet, I can’t force it. When someone forces things, the result is more work. If we allow our minds, our hearts, and our bodies to open to the process, the heart, head, and body will be much gentler in leading us to where we can release the emotions we’re holding safely. I find myself in a place of peace, patience, and willingness to sit with the stillness that whatever is needed will be delivered to me when it is needed. I don’t need to fight the unknown. It will find me. No hacks needed. This is super liberating. 

Once again, I realize that sitting, writing, and reflecting does the work for me. I don’t need the tears: I need the time to build peace within myself. It’s a good place to be. 

Support Sites at the Right Time 

In this era of wanting instant gratification, the art of waiting is messing up the soul. When I first started this process in 2016, I waited to look at support sites. When I did search out a site or two, I was stunned to see that people were coming to these places so soon after the death had occurred. 

It works differently for each of us. I sat with the pain; I had a friend who listened, and ultimately made my way through two years of hell. 

I took knowledge from the sites; I came to a realization that the path into the grief process would become my unique journey: no two paths are the same. Each of us face differing life circumstances. While we might each want the tears to go away, they go when they’re good and ready to do so, and not a moment before they have done their work. Learning to wait, getting support for it, and learning to live in the present moment with all of it is needful. Trying to push it disturbs the process. 

One of the gifts I took from the support group was that I was right where I needed to be. Being able to read someone else’s experience affirmed to me that I was doing well. The other gift of the support group was that I became less judgmental of myself and others. I learned to accept my own process. The online support groups served as a place of understanding and peacemaking for my own needs.  

I slowly returned to life, rebuilt, and am still to a great extent doing the work of creating the new life I desire. What I envision for myself in year seven is so different from what 2016 looked like. The deep spiritual and soul work I’ve done is nothing like I would have imagined it would be. For me, knowing comes with the understanding that I’ll continue to grow, reflect, and reach upward towards new places. Yes, once again the spiral moves me upwards. It is good. 

Thanks, but Not This Gift (Revisit)

Lately I’ve been musing about life, the self, and self-acceptance. This post is a good reminder that taking back choices and life situations doesn’t work. Once we’ve done it, we’ve opened up a new pathway. Jon gave me a great gift with this realization.

Gail, January 16, 2023

Late Wednesday I asked Jon: “If you could give me a gift, any gift, what would it be?” I wasn’t ready for the reply.

He told me he’d give me a healthy body. He told me he would want to take away all my discomfort and give me health, and I was stunned silent. Two days later and I’m still stunned.

I’ve had this petite, not-quite-a-gem of a body for 56 years now, and while I don’t appreciate its lack of functionality at times, I still love being petite. It is who I am. I love my blue eyes and my once-curly hair. I don’t like the PXE (Pseudoxanthoma Elasticum) that has made life hard. No, I don’t like that at all.

I’ve made the comment before that if I could see normally, I’d want to play tennis. That would be first on my list of items to do. That is just a thought and a desire, but when I think of things in terms of my entire life changing, I have cause to rethink. Doesn’t everyone want health?

About two weeks ago, my family found out my younger brother might be facing some serious heart surgery. He, like me this past year, had to come to terms with his own mortality. It changes you and causes you to rethink who you are and what you do with your life. Things that didn’t seem needful take on a new view. In this past year, the things that really matter to me have changed.

As much as I would like health, I’m going to decline the gift. It isn’t that I’m not moved by the thought; it is that it would change some things. It makes me think of one of the most powerful “Generation” episodes of Star Trek, and the lesson that it teaches.

In the episode, Jean-Luc has yet another encounter with Q. He comes to understand that the lives we live are due to the choices we make. We walk the paths we walk because of what we either do, or fail to do. I may not like the hassles that my lack of a healthy, functioning body brings to my life, but without it I lack the knowledge and power that its lessons have taught me.

Instead of pontificating on all the lessons I’ve learned (and I could do just that ), I’d like to ask you each some questions: Would you change your life? Would you alter it so radically that the lessons you have learned now would change? Who would you be if you weren’t this current “you?” How does thinking about this alternative “you” change who you are going forward? Why would you make the changes? What would your reasoning be?

The offer of Jon’s gift has made me look at myself and accept that I’m OK with the mess of my disability. I’m more accepting of it than I thought I was. I like me. I may not always be happy with life, but I like my life lessons and am glad I’ve had them to shape who I am.

I will return to the gift of health. It is a good thing to ponder and revisit because it has made me think about my life in new and better ways.

In asking myself the question, I found another gift. This gift is that I like being Gail. I like some things about being who I am with my own disabilities that I didn’t think I was happy with. Thanks, Jon.

The Route to the Root (or Changes Happen When We’re Prepared)

As I journey into my seventh year of being alone, I marvel at where I am, where I was, and still cringe at where I need—and want—to go. The process of grief is also the process of growth. Growth hurts. If growth is not hurting you, think, look, and observe your life because you might not be doing your best work. Growth is a combination of insight and forward movement. 

When I think about what it takes to engage this process called growth, I’m taken back to the basics of what we need to survive. Maslow’s hierarchy of needs serves as a great framework for why growth works, and what it takes for growth to work. I would propose that personal growth and discovery cannot even begin to be considered until the two basic tiers are secured. The reason for this is that in a crisis situation, which much of growth tends to stem from, we need to first secure physical and safety needs. Looking within can’t begin until we do the prep work. Once the bottom rungs are established, the freedom to build the upper rungs becomes possible. 

People talk about doing grief work, and the fact is that until you are in a safe place, with your basic needs met, you can’t go there. In a real sense, no matter which route you might want to take to do your needed work, it won’t work unless the basics are firmly established. 

Looking back over the years, I can see that it took the first year to establish and secure the first three rungs. While I had food, clothing, and shelter, and I was “safe,” I needed to feel as I was safe in the new situation. As I began to be able to feel that things were stable, I could move forward and look at the third rung. In looking at my need to belong, to be supported by friends, and to know that I had the love of people I cared about, I could sense that it was time to move forward. Grief is movement in motion, and if we aren’t ready to engage in the forward motion, seeking professional help will not be helpful unless you know you need to do the work and are willing to engage in the process at a lower level of readiness.

I don’t talk about doing therapy or spiritual direction much. I hardly ever mention either. The route I took to get to the roots of my own grief issues began in one way and ended in another altogether different manner. 

I’ve talked about the “Please Do’s” and some do nots. I’ve seen people face their hell with powerful honesty, and I’ve seen others run like a bat outta hell from the work that needs to be done. This past week, I heard the “How do I?” question again. It’s all part of the route to the root. 

A therapist should converse with, question, and guide people to discovery. Short-term therapy is the quick fix. You might gain a skill or two. It will work, and you can learn to manage the basics. Short-term therapy won’t fix the deep-down stuff because the deep-down stuff is buried and in need of being discovered. The discovery conversations take much longer and are centered on enabling you, the client, to understand yourself fully. These conversations happen when we’re able to move up the pyramid of Maslow’s hierarchy of Maslow’s needs pyramid, which is where deep changes happen.  

My first therapist stirred it all up. I did a great deal of growing and learning about life. It would take other therapists holding space for more mature work to be done. All therapists listened, and the really good ones called me out on my stuff. I learned, I hurt, and I grew.

Insight therapy is about a process and involves creating a relationship with someone. Hopefully that relationship will reflect the reality of our lives when we’re engaged in the outside world. What insight work offers us is a chance to understand how we relate to the world in better, and possibly healthier, ways. Sometimes it is sobering, and at other times delightful. The lightbulb moments are the best. 

I’m thankful for insight work. I’m thankful that I’ve been called out on my stuff, and for the professionals that walked with me into uncharted personal territory. 

After Jon’s death I returned to the model I knew and discovered that I needed to do a different form of growth work. Four years ago, I was tapped out. The psychological road was too familiar and worn, and I realized it was time for another type of insight work. I didn’t need to be fixed, which is what much of therapy is focused on. I needed to do the work of the spiritual, and I had found a great spiritual director who listened and called me out in new and wonderful ways. It has turned out to be an amazing growth route.

Direction focuses on the spiritual. For some people it is about where God might be leading or guiding us. It is not about organized religion or any church; its goal is to accompany the person on their life journey and not fix anything. I began the process in 2019 and the growth from direction has been a gift. I’ve done much of the same work around grief and loss and have been led in my once-per-month sessions to reflect, grapple with a new life, and navigate the storms the changes of 2016 offered me. 

Over the years I’ve spent time in chat rooms, seen people rush to find solutions, and have noticed a trend to escape the crying jags, the uncomfortable, and want it all to go away soon. I watch, do some head shaking, and realize that as much as it is normal to want to avoid pain (physical or emotional), we get to the route of what ails us by committing to the wrestle within. As much as I would have liked to feel more control over when the crying jags hit me, letting go and letting tears come naturally sped the growth and discovery along to a better place. I discovered in the tears that I was crying for any number of reasons. The tears took me into looking at our relationship and opened a gateway into understanding the positive and the negative of all of it. 

The struggles of the first two years enabled me to do the work of the last four years. I wouldn’t alter the path. Had I not sat with some really hellish things and dealt with the crisis, the fear and the uncertainty, I could not have gotten to a point of deeper insight. 

In this age of instant gratification, the challenge is to wait for the good stuff, and to trust that it will arrive at a good and healthy time. Grief and loss work is done in layers and can take years. The areas of my life I’m working on now are things that I could not have dealt with in the beginning. There are reasons for where I’m at now. What I face now are is what I would term “essential but go slowly and uncover safely” issues. The route that has taken me to my root has been spectacular!  

If it’s January, it Must Be Resolution Time

It is January first, and I’m getting a jump on my Monday. I’m doing it because my January third is going to be slightly cluttered with an eye appointment. Here it goes!

I was logged into Facebook to check on pages I manage and spotted people I know posting their New Year’s resolutions. It got me thinking about change, and why this stuff seldom works the way people envision resolutions working.

The first thing is, why wait for the new year? If it really needs to be done, do it now—don’t put the thing off. 

My next observation—or question—would be, Why do diets begin on Mondays? Shouldn’t they start in the mind, on the next shopping trip, or in an online order?  

My third musing would be that people make resolutions but seldom lay the groundwork to establish successful life change. How do we each lay that groundwork? What does it take to do the work that will establish change in our lives?

It begins in stages: the first stage is to come to an understanding of what the real issue is. I’ll use a diet for the example, though most any example could work. I’ll use my own diet journey.

Often a person wakes up to their personal reality, sees themselves in the mirror, and shudders at the sight that is reflected back to them. The realization of the pounds that are now present isn’t a happy one. You might have a range of clothing sizes, and some of those sizes might never be worn again. You hold on to all of the sizes in hope that “someday” you will fit into those jeans you wore fifteen years ago. I didn’t have that issue because moving to Europe is all about weight, and getting it on the boat. I had to give clothes I was wearing, and not wearing, to someone who could use them right then. I’m glad that the choice was made for me.

In 2006 I realized that I felt awful, and I didn’t like my reflection in the mirror. I felt ugly, frumpy, and unattractive. We purchased a treadmill so that I could walk inside, and I hoped that walking would help me take the weight off. Four years later my “goal” had not been achieved, and I was miserable. In 2011, after years of back pain that began in adolescence, I made the decision to have a breast reduction. That was a good choice on my part. Talking to my husband about the decision I was making was a process. He had the concern of things not turning out right. They did. The reduction enabled me to walk easily, and to feel better while doing chores. The “bench,” as I thought of it, was gone. Wow, was that a game changer! I also began to win at taking the weight off. Having a couple of kilos gone in one day gave me hope! Maybe I could do this thing.

All the tears I cried, the times when Jon had to hear me grapple with the issue that it was taking so long to drop the weight, now seem like an eternity of days gone by. That was one kind of looking and digging to get to the root cause of my food issues.

There is something to be said for feeling good, and feeling like you are winning at something you want. After a decade, I was wearing smaller sizes; I was winning the battle, or so I thought. I was doing the outer work. What about the inner work? 

My health insurance covered a dietitian, and she was helpful. It took a conversation about doctors being vigilant about the Body Mass Index (BMI) to turn the entire weight loss process around for me. Wowzah, had I fallen into a nasty trap!

I thought I’d done all the inner work as I began to understand that in my genetic heritage of deities, a love of sweets from two grandfathers and my mother had caused me to deal with sugar like alcoholics deal with a drink: one is never enough. This sent me spiraling into a new level of self-discovery. It was unbearably painful. I engaged in a dance, and while the weight was coming off, my eating and I were doing a wild rumba. All the years that I’d focused on BMI had held me back from focusing on feeling good. I had to contemplate how I might have bought into the diet myth, and the body image of fitting back into a size 6–8. Intellectually, I understood that there were things I needed to do. In 2021 I crossed into a new zone: the I’m-happy-with-who-I-am-and-what-I-see-in-the-mirror zone. It was a massively delightful discovery. It also lifted a huge burden of non-reality off of me. Now it was about management.

I recall the day clearly. I was sitting on a stool, getting dressed and taking a look at myself. No, my stomach wasn’t model flat. I would never have that EVER again. My arms were OK, not perfect but good enough, and my calves, they were still wonderful. Throughout my life my calves were the one body part that always looked great. I took time to reflect on this wonderful factoid. My thighs really were OK, and my face had thinned out. I realized in that moment I would never see a size 6 or 8 again. 

Then I began to think about how I really felt inside. I felt good, and as I realized this fact, I began to look deeper. Why was I stuck in the weight loss mode? I came to understand that I didn’t need to go there. A size 10–12 was perfectly fine. At my age it also felt like I could maintain that size.

Healthy isn’t about the perfect body. Ultimately it is about feeling good at where we are. It becomes a process of cutting ourselves some slack, offering ourselves the same grace and generosity we tell others to treat themselves with. In all the inner work I spent time doing over the years, I realized that I, too, had cut myself some slack and offered up a huge healthy serving of grace and generosity to myself. In 2022 I sat on the stool, looked at myself, and smiled. Yeah, I’m good with her!  

Resolutions are fulfilled when we lay a foundation of inner work, dig deep, and discover the generous helping of self-love we are serving ourselves. We make peace with the demon within. We grant ourselves the insight that the real work takes time and is about honoring ourselves over what we think we want. The question we must ask at the beginning of any goal or resolution journey is, What do I really need, and why?

It took me from 2006, a lot of treadmill and conversation time working with a professional, and a real hard look in the mirror to come to understand that what I wanted (getting back to a 6–8 size) was not what I needed. What I needed to do was to like—and love—the reflection of the 10–12 sized woman who sat on the stool. It doesn’t matter the size or the kilos/pounds that I carried. I started this journey thinking size and BMI. What matters most is that I got healthy. What matters most is that I’m enjoying where I am and can manage life where I’m at without my body doing the yo-yo cycle.

2023 is starting off with some real peace of mind. I’m good with this.

Gratitude for Tech

In early November, on a lazy Friday afternoon at around 3:00 PM, my tech world blew up. The power went out in our neighborhood, and with it, my computer died. While I knew it might be repairable, I also knew this was not the first round with this issue. Getting it to the repair place would be one thing; the other thing was whether I wanted to spend the dough to have it blow up yet a third time. The next day I ordered a new machine. That machine arrived three weeks later. In the meantime, I was on my iPad, and had to deal with eye strain. 

This time I began to notice that I depend on my tech, and I need to use my Mac for work, and to do some basic tasks. I was in panic and upset mode. I think I drove a few people to collectively shaking their heads.

Technology is a gift, and a curse. As a society we’ve surrendered ourselves to machines with screens, social media, and a connected lifestyle. I didn’t grow up this way. As a kid I had to ride the bus to the library, have the librarian locate the proper microfiche, and then copy information. Copy, paste, and cut weren’t options. Research, advertising, and social connection were so different! Google makes our lives simpler. Yet, here I am typing this tech lament. Why? 

Over the past few months, I’ve ranted about issues surrounding disability, and how many don’t really get how we roll. What works for you may be a far cry from what will work for us. What works for one disabled soul will not work for another. This time it isn’t about cutting us slack: it’s about understanding our panic and why the loss of tech is different for us. For us, it can become a crisis.  

I’ve been thinking about this for some time now, and it stems back to childhood for some of us. It’s about parenting and beyond. 

There was a time in our history when a child was born, and the doctor sent the baby home with the parents to let them discover that “something isn’t quite right with our newborn child.” I was lucky because my parents understood what they were and weren’t seeing at six weeks old. In 2022 we understand what disability looks like at birth, and we’re aware of what it might look like in early childhood. This translates to being able to provide resources that will enable a child to succeed in school and in life at an early age. It also means that if tech is to be part of that process it can be delivered to them. Individual Education Plans (IEPs) can be structured for the the child to include needed assistance. (OK, if and when the system works well.) Providing reliable, accurate information to both children and parents is a huge portion of the process.

There is another part of the issue that isn’t tech, and it affects us deeply. It is about having accurate information for lifelong interaction. That information comes from two sources: professionals and parents.  

If someone is born with the disability, they are dependent on parents to lay groundwork so that as adults they understand their situation. If they become disabled later in life, doctors and other professionals need to companion with them to enable the disabled person to gain a complete understanding of what is going on in their mind and body.

The knowledge we have now, versus what the medical profession could have told me in 1970 when I was transiting the education system, has changed.  

I’m not here to talk about teachers. They are the frontline. I will say that teachers are there to teach. A checked-in parent can assist the teacher to ensure that their child is given the best possible shot at succeeding in life beyond the classroom walls. 

How do we help? I will spend the time here talking about skills. 

Do children have the study skills they need to compete in the real world? Are they given the chance to work to their full potential? For instance: a child with a learning disability may need to learn in a different manner than a child that doesn’t have that disability. The learning-disabled child may be very gifted, and need the stimulation of an Advanced Placement (AP) class in high school. Are they given that chance? Learning disability means that a person needs to get information into their head in a different manner than how they may be taught. Tech comes into its own here. The ability to hear the text read, to talk it out, and to even feel something might be options here. 

Processing disorders are common, and once it is understood that a student needs to think things through differently, it changes the game. 

Tech can be a gift. We can level the playing field with accessibility features that count. Audible, Kindle, Book Share, and other options open up the world to the visually impaired and people who deal with a variety of processing and learning issues. Now children who might have been told that obtaining an education beyond the basics of K-12 find themselves applying to graduate programs!  

What is understood now wasn’t understood when I was born. Back then my options were: learn to type and/or learn to read braille. Typing was the logical choice. Was I viewed as a higher education candidate? No, not as a child. As an adult that became possible. As an undergrad the Americans with Disabilities Act (ADA) paved the way. I had readers that enabled me to consume volumes of information. They had eyes and could point out things I couldn’t see. It was the tech that put me on the same level as everyone else. The tech didn’t come about until my grad school days. Now, I can’t function without it. I am back at the crisis situation, and what it did to me.  

I think that this piece is more of a post about being thankful for what I have as someone with very low vision. While I can see a face on Zoom, hear the distress in a person’s voice, and understand that tears are coming, I couldn’t do it without all this tech. 

I did have a tech crisis, but today I’m thankful that I have tech at the ready, and that I can move forward with a more appreciative heart.

Sneakiness is Happiness (Revisit)

During the holiday season, our minds turn to fun and wonderful giving. This gift came to me on a warm day, not during Thanksgiving or Christmas—just because he could pull it off. Go out and be sneaky.

Originally posted on December 20, 2019.

Today has been very hot. I like the heat because it means that the sun is out and the sky is blue. The only bad thing about the heat is that sticky, humid feeling. Today I had to be out in the heat and it was wonderful!!!!

Why? Well, it was because of all the nice things that happened while I was out and about and doing the many things that I had to get done. I was out alone with Myrtle Mae. Myrtle Mae is a good sidekick. “She” keeps me safe from others. I’ve also noticed that people are really nice to me when I’m buzzing around with my stick. (Myrtle Mae is featured in stick magic.)

There are so many things that are different about being a person with low vision. Some things are just more complicated and time consuming than they are for a fully sighted soul. People being nice to me made me feel OK about walking around in the heat. So to balance my happiness, I find myself listening to one of the most pessimistic guys of rock: Don Henley. I like Don.

There were things to do, like the veggie run and the bank. I like getting this stuff done—but there was also laundry to do before I could do the veggie run.

I tell you all of this because the man did something wonderful for me. He can be sneaky in phases because my sight just isn’t good enough to see what is going on in my tiny room that I use as an office. I didn’t see the first phase at all.

My office is filled with very “Gail”-type things, two of which are parasols that are mounted into the corners of the ceiling. Once they were up I thought, Wouldn’t it be cool to backlight them? I haven’t thought about it for some time. He has.

While I was out and about, he got to work and gave me a very beautiful surprise to come home to. Yup, he backlit my parasols!!! So, even though it is hot out there and in here, I’ve got the tiny lights on. I couldn’t resist as it is so pretty to have the soft light around me.

Being nice pays off not because it has to—it just does. There is something about generosity that is contagious. So, when I’m out and about, I smile, and others say hello to me. Why?

I think that is because we, as humans, crave positivity in ways that will never be fully understood. I, for one, have no desire to study this, as it takes some of the magic out of the process. I will studiously avoid the research on the topic. Some things are better enjoyed and left alone.

I think I’ll go find someplace cool to enjoy the evening. I also must switch to something other than Don Henley. Before I do—remember to smile and see what you get in return.

The Burden

The disabled carry so much inside. On a daily basis we are challenged with what we let people know about our lives and our needs. Is it a good day or a bad day? Do we need to ask for help, and if so, how much of that help might be robbing us of our dignity? You may be thinking that we need to get over it. If you aren’t in our shoes, please think twice about that remark.

I like to think of myself as independent, though as I’ve lost more of my vision, I’ve had to ask for more assistance. I try to do as much as I can, and I’m noticing that the abled world is making it more difficult to do so. It adds to my daily burden. 

At first, I was going to write a regular post. Sitting here, I’m going to do this differently. Here it is: 

What I Do

As I 

wake, I notice

My legs

And

Scan the rest of my body.

I’m rested.

I move from the bed realizing that I can walk when others can’t do this.

I engage in morning listening to a book because

I can no longer read print easily. 

And,

I give thanks that I still can hear.

Today should be a good day. 

I think of those I know in wheelchairs 

or 

struggling to walk this day.

I hold them in my heart and hope that they will have the help they need to survive

Another day.

My mind travels to those who must have assistance in all things.

We don’t think about that much unless we’re directly affected by someone in that situation, and

I hope that caretakers will treat them with dignity on this day.

I leave the house to run errands

And

The sun shines in my eyes.

Even with sunglasses 

I strain to make sense of the path that

Is covered by foliage.

It is beautiful and crunchy and 

I love it.

But

I can’t make sense of the path with my cane.

How would I explain my reality? 

I try.

But

It is so different from yours.

You can’t really understand 

This life of mine.

Then I must explain to the abled that 

I can work, 

because they can’t imagine me doing what I do.

Should I do nothing all day

When I can do something I love? 

More of a burden

That I haven’t created.

I feel: 

Judged,

Enraged,

Worn out,

Like screaming!

I want to cry.

To protest.

To yell at people.

But

WHY? 

The disabled person’s greatest burden 

Is

That

We get lost in the shuffle 

And

Are not seen when we need to be seen.

Good Enough

This past week, I spent a great deal of time in preparation for a Sunday church service. The topic was the poverty trap. I’ve seen it, talked to people trapped in the cycle, and I’ve lived in a third-world nation and seen and smelled poverty in a way that has left a lasting imprint on my mind. I was using a video that talks about the poverty trap. I spent time viewing it multiple times to make sure I understood what was being said. Each time, my takeaway was added on from the previous view. When we gathered, I felt like I’d not done a very good job of things. Not enough, and things had gone off the rails. Had they gone off the rails or was it my thinking?

I’m using this as an example of how we, as humans, tend to pass judgement on ourselves and others. We all do it to some extent, and to say that we’re immune to it isn’t truthful. The fact is that most of us can name a long list of the negatives, and it isn’t balanced with the positives about ourselves. Good grief, why do we do this? 

The answer is complex, and I’ll try to expand on one or two of the areas. 

Social media and the ads we are confronted with affect us daily. We view advertisements that attempt to sell us, tell us, and convince us that without the latest gadget, or the vacation, or the right clothes, we can’t, or won’t, be enough. I’ll give you an example using someone’s weight experience. 

I’ll call her Amanda. Amanda has done the yo-yo diet thing; she’s listened to the docs who tell her that she needs to be within the proper weight for the Body Mass Index (BMI) to be healthy. She also did the research and took a close look at her body. She has dense bone structure, is petite, and no matter how much she wants to be slender, she’ll never look like women of Western-European descent. She’ll look the way she is meant to look: healthy and beautiful as she is. She isn’t an overeater; her body processes things as it should. Has it been hard on her? Yes. Making peace with who we are physically is about having a chat with the person in the mirror, asking ourselves how we feel inside, and understanding what good health is about. It is understanding our bodies and knowing when to check out of the advertisement myth. How honest are we being with ourselves? Ultimately, it is about personal responsibility and doing the hard work on the inner self: the shadow work. It is this hard work that creates space for each of us to be good enough. It is saying goodbye to the myth of perfection. Amanda has done this essential work on her body. 

I mentioned doing the inner work, or shadow work, on ourselves. I used to read this and not quite get the depth of what was being said. In my youth, I didn’t understand what inner work or shadow work is were about. If it’s about doing therapy, then yes, I’ve done that. It isn’t just therapy! I didn’t know that then. True, we can explore our issues and do some changing. The deeper work is stuff that causes us to look at ourselves mentally, emotionally, physically, and spiritually. 

When I was younger, therapy was enough. I needed to address the issues of youth. I found therapists who were good at that; it worked. As we mature, things change on all levels. Eventually, we’re face-to-face with the ghosts we failed to confront in our younger days. The shadows we see in the mirror cause us to rethink and ask ourselves different questions. Our life experiences are showing us that it is time to move forward. We look in the mirror and begin to think: “Is this it?” or something like that. Now we’re looking for a different type of therapist, or a spiritual director. We want the person who will call us out on our stuff in ways that matter. We might discover the Enneagram, or another spiritual growth tool. The drive to change within becomes new, and we begin to put away keeping up with the Jones’s. We find that keeping up with the Jones’s is costly in time and energy, and not worth the effort. We find that the need to confront ourselves is real, and that the other things are not as real. 

Marriages dissolve, faith changes, careers change; we get sober for ourselves. What once was happy and joy filled is sour. We want honesty from the person in the mirror. This is when the deep changes happen: we’ve hit rock bottom in our lives. This isn’t a rock bottom in the addiction way. It is a life rock bottom, and it demands to be addressed so that we can move forward.

We go to battle with ourselves, and in doing this new kind of work, we find books on spirituality, meaning, and we ask questions that we’d never have asked ourselves five years before now.  

We begin to overturn the rocks of our soul, and we become disenchanted with anything less than answers that lead to real discovery and honesty. We begin to learn to sit with the uncertainly of life. We cry the ugly tears that teach us our inner truth. We speak the words of our real truth and mourn the loss of what isn’t, in exchange for a face without makeup. We stand stronger for all of it. Then we get down to the real business of life. 

In this process, we learn to overturn some boulders on our own, or with help. The shadows that were once enemies to our souls become our friends; we look back, and realize that in our youth, we knew something, and now we know more. We do better. In our understanding, we burn the myth of perfection to the ground and embrace being good enough, and in this we move towards wholeness. 

By now the things of youth are gone: the magazines, the desires, the noise, and the clutter of an earlier life. We’ve traded all of this in for retreats, quiet nights, smaller gatherings, a group of close friends, holidays with meaning, and an understanding that whatever happens, happens. We are no longer slender; we’ve filled out and have dense bones built on strength. 

In our budding new self, we may come across our old self in the faces of younger souls. They look at us and may see wisdom built on experience. When they struggle, displaying the behaviors of the perfection myth, we can embrace them and allow for them to be themselves: good enough.

Dear Helpful Soul

Dear helpful soul,

I realize that when you see me at a street crossing, you want to take my arm, tell me it is clear to cross, or even help me to cross the street. Your kindness, while well meaning, is not appreciated. I’ll explain why this isn’t helpful, or needed.

I’ve been living with disability my entire life. For many within the disabled community, this has been our situation. For some who are disabled because of illness or injury, this is not the situation. Their journey into disability might be more traumatic. They may slowly lose function in an area of their body, wake up one morning to the horror of lost capacity, or find themselves in a hospital bed with a missing limb. Many of us, if not all of us, within the disabled community deal with trauma surrounding the disability, and some must cope with ongoing trauma due to a gradual loss of even more function. Imagine someone with Usher Syndrome, who faces this on a daily basis. When sight or hearing can disappear, or you watch as you see less each day, or can’t tell what is gone until there is a radical difference, it is traumatizing.

Trauma may look different for the disabled. Please, ask and listen to understand. Someone may seem to be reacting abnormally when it is normal for their circumstances. When someone lives with ongoing events that are traumatic, and treatment for the trauma doesn’t completely solve the problem, cut them some slack. They may need it.

In most of the above situations, the journey of learning to live again may take a person to a rehab center. My journey into a rehab center began with the realization that I’d lost more vision and couldn’t see as I once had been able to see. I was down to twelve percent of my vision. For me, rehab was about learning better ways of doing things, using less of my vision, and confronting myself in a new way. I’d spent most of my life trying to fit into mainstream when I didn’t fit into a mainstreamed situation. I had to come to an understanding that now, more than ever, I had to embrace new ways of doing most things. When I think of leaving my home without my cane, I cringe and know I’m not safe without it.

Why do I need a cane? At first, I thought the need for the white cane was to enable me to navigate tricky spaces. I understood that I needed the help at night, but why did I need it in daylight? The longer I used the cane, the more I became aware of a few things. The cane let me sense areas to stay away from, such as sand or gravel. Both sand and gravel do not allow me to feel what I need to feel underfoot. I need to avoid both sand and gravel because I could slip and fall. The same scenario goes for ice and snow.

The cane also serves as a warning to others that I’m not going to see you clearly. I may not see you at all because you are out of my field of vision. People need to be prepared to take evasive action to get out of my way! This brings me to my first gripe: anyone on their phone and not tuned into their environment. Do you want me to collide with you? No, you don’t. Prevent this by walking with 100 percent of your attention on the task of navigating the space you are presently in. Having had several close calls with people who have been inattentive to their environments, I know it would be appreciated by so many. We don’t want to injure you or become injured by you. While you may not be driving, you are navigating spaces, some of which are very crowded. Please look out for oncoming people because if you don’t, someone might say something like “Watch where you’re going!” to you. They’re correct in saying this to you! Your phone can wait, and if it can’t, then move to a safe space to focus on what you need to do.

If you feel I’m being harsh, I’m attempting to protect myself in an environment that isn’t always friendly to me because I can’t see everything.   

Offering Assistance

Here’s some handy advice on assisting those with visual disabilities. You’re at a street crossing where there is no signal. You can see that the traffic is nonstop (the visually impaired person may be using their hearing to know when to cross). You also see that there are gaps that would be difficult for the disabled person, even though you could make it to the other side rapidly. You could make the offer of assistance in this way: “Wow, this traffic isn’t going to slow to let you cross easily. Would it be helpful to you if I assisted you to make a faster crossing to where we need to get?” If they say yes to this question, ask them how they want you to walk with them. This approach places the disabled person in the position of accepting or declining, and it comes with a reason for the offer. It is good help that may be very much accepted and causes us to accept the offer because it isn’t a rescue, allowing us to remain dignified—and that is a win for everyone! If we’re at a signal with a walk feature, we don’t need your help.

Speech and Hearing

Imagine not being able to hear clearly. When you can’t hear clearly enough to distinguish a D from a T or and S from an F, or other consonants and vowels, the life of a hearing-impaired person becomes stressful. 

Imagine trying to spell words that you can’t hear properly. Imagine not being able to pronounce those words properly. Add the challenge of uncertainty when you’re not sure if the word you heard spoken was “who” or “shoe.” The conversation becomes draining, confusing, and if you’re in a crowded room, it can become difficult. Social situations can become a challenge. For those with a hearing loss, the issue may be about isolating as best one can. 

While at the rehab center, those who dealt with the added hearing loss gave voice to the difficulty of hearing in the crowded dining area. I spoke with staff about not being able to enjoy the mealtime, and the need to engage in conversation at the table. No one had spoken up about this issue before. I was asked for solutions. First, I was isolated. That didn’t work. I didn’t want to eat alone. The next step was to ask others in this situation if they were experiencing this. “Yes, I am!” This was the common response. The next step was to reserve a table for us. This table was on the edge of the dining area. Nope, that didn’t work. Then they put us on the other side of the space. They were hoping the distance would solve the problem. Distance didn’t work as the noise trickled into our space, and it was difficult to filter it out. When I left, they were still working on the situation.

I’m faced with the fact that I need to semi-isolate in social situations or avoid them altogether. I’ve tried it both ways, and enclosed social situations with heavy noise levels are a pass for me.

I’ve been in The Netherlands for over twenty years now. I’ve tried to learn to speak and hear Dutch. It has been a challenge to learn a second language with a hearing loss. For the most part I try my best to converse in Dutch, and for the most part people are polite. Then there are the ones that judge and condemn. I’m told it is my fault that I can’t speak this language fluently at this point in my residency. The people who respond to me negatively are few in number, and to them all I can say is that given my situation, I do my best. Don’t judge until you understand that hearing is my challenge.

So, helpful soul, please listen for understanding. Understand that I know what I need, and above all treat me, and my disabled brothers and sisters, with respect. We’re having to face this every time we step out of our front doors. Cut us some slack, please.

The Lighthouse, and Beyond — Doing the Work and Looking Back: Part 3 of the Holiday Journey

Looking at the lighthouse on Bracelet Bay, I opened my heart to the path ahead. I can now look at my life heading into a new path. To move forward, it is also necessary to look back, and understand why you stand at the present waypoint.

It was after the ashes had been freed that I began to take note of a nagging feeling that I’d mentioned in the first post. Something wasn’t feeling right, and I didn’t know what it was. I didn’t ignore it, and I didn’t explore it either. I let it sit in my head, and let it work on me until I returned home.

Grief is a challenging process. We face it in death, divorce, a breakup, or a loss of a friend because one of you has taken a different life path and the friendship or partnership no longer meets someone’s needs. People’s values change. Our life focus changes. There are so many other things that happen to us in life that can bring grief into our midst. Pets must be set free from suffering, and we’re faced with the goodbye. What happens in the grief process is hopefully healing. First, it gets ugly: it must get ugly.

To get to the healing, we need to allow life to do its thing. I had made the decision within days of Jon’s death that I would avoid making any major life decisions that did not have to be made during the first year of the grief process. This turned out to be the best thing I could have done for myself.

For the first year I did nothing. I let the trauma of it all surface. The crying was awful, and as the tears came, the pain of it all surfaced. At the end of that first year (2017), I took a trip to visit family and friends. I returned home and faced years two and three.

In September of 2018, I made a major life change that involved a decade-long faith journey I had been on: I joined a new faith tradition and church. At the end of year three (2019), in the fall, I applied to the spiritual direction program at San Francisco Theological Seminary/Redlands University, was accepted, and I began to plan a new phase of my life. I noticed that things were changing for me. Four years later in 2020, it felt safe enough to return to the work I loved. I was stable and things felt right. I’d done enough healing. What is that healing like? 

The Beginning Stage of Healing

In the beginning it might be a numbing to the world, to ourselves, to others, and we might seem detached. We sleep at weird times, eat nothing or too much, and we might not engage in normal, routine things. We can be caught gazing into nothingness. We can curl up into balls and sob. We rage at the unjust death of a loved one. We rejoice that someone is free from their body that has only been a source of pain. We mourn what wasn’t, rage at what might or should have been, and throughout all of it we want you to speak their name. Please, speak their name, don’t forget them. I won’t, and at times it seems as if their presence will always be around. Surely, they will walk through the door with a cheerful greeting, lighting up the space, being who they uniquely are. They are gone and it is a crushing pain. How can I possibly move on from this? Slowly, sometimes gently, and at other times violently, we begin to move forward.

Present Time

As I moved forward from the spreading of the ashes, I came to realize that after six years of making peace in my heart, I made peace on the beaches. I had moved beyond grief. I came to realize that the work of the past was done, released to the sea, and that the work of a new life stood ready to embrace. I let the rest of the holiday run and allowed this realization to greet me as I opened my front door. 

One of the most common questions that newbies to grief get asked is when will the crazy erratic tears will end. Will they ever end? The answer we give to others is yes, and they change in texture and quality. With time, the tears slowly diminish to a softer cry. Slowly, and with time, it changes. We can’t say when the tears will change for you, but they will change. I never asked the “when” question. I let it happen. I listened to the community and those who had more “time in the process.”

Middle Stage Grief Resolution

For me, it took a full three years to cross from the full-body crying to a gentler form, and in year four there was nothing. This was a middle place. It can be a time of deep exploration. Doing good work means that you take your time and allow others to take their time as well. Good work is about looking in the mirror and not tolerating dishonesty from yourself about the “what” of the relationship, the “who” you were in the relationship, and the “why” the relationship was as it was. Honesty takes guts, and grief isn’t for wimps. Asking yourself the hard questions and being able to sit with the discomfort for however long it takes characterizes that middle stage of work that we do after the loss of a relationship. Whether it is death, a breakup, divorce, or another type of loss, in order to heal and resolve our portion of the relationship, we must visit the relationship fully, see it fully, and not forget what we’ve seen. All of this takes a great deal of time and effort to get it into proper focus, and to move forward. 

Resolving the Process 

Six years later it was time to see beaches, visit friends, and new places. It was time to look back on the land behind me and face a new sea. It was time to say goodbye to the past and hello to the new life ahead. Bracelet Bay served as a point of closure as well as a new beginning.

Moving forward no longer feels or seems scary. I’m on my timeline. I’ve done the work. I don’t know what’s ahead. There is a sense of freedom and peace in all of this.  

Jon used to want me to send him a song, and I’d sing to him, and so I’ll end this journey with Lisa Kelly sending a song that works for both of us. Love you, Jon.

Lessons from Bracelet Bay: Part 2 of the Holiday Journey

So, what about the rest of the holiday? It was great! I managed to consume heavenly food, and the ice cream in Wales is scrumptious. I took advantage of the fact that I could get chocolate mint chip anytime they had it in the ice cream parlour. It was wonderful to enjoy every bite of that ice cream. I had the most delectable fish and chips at Langland Bay. The traditional Sunday lunch was a walk back into childhood and my mother’s cooking. Eating with friends, sharing a meal in a local pub where they served up Sunday lunch in two settings was the only way to do it while enjoying their company. Being able to binge listen to podcasts (and not be thought of as rude) was a cure for long years of working and stress. I warned my host/hostess about my binging need, and I’m glad they each honored my need to enjoy it guilt free.

While I was there, Queen Elizabeth’s life came to an end. It was interesting to observe the process. The British do pomp better than any other nation. What an experience and a joy to watch with friends who had lived their lives while she was queen.

This portion of the holiday wasn’t about the food, or the learning: it was about setting Jon’s ashes free. There were two stages in the process.

It began at The Shack, this quirky, quiet cottage that has the best chaise longue in the universe. We could have stayed on that longue for, forever! The host, Helen, was delightful and accommodating to my almost-blind needs. Helen was incredible and helpful, as neither Sara nor I had been to the area before.

One of the things I needed to do in the first few days was to scout out the bays for the one I wanted to scatter Jon’s ashes into. Sara and I spent Thursday and Friday looking at bays.

South Wales has some incredible bays; the views are spectacular. I was certain I’d find the right place.  

Exploring My Options

Caswell Bay is a happy place with its welcoming benches, café, and yummy food. Sitting on the benches and chatting was wonderful, and while the bay and the water were accessible, it wasn’t the right place.

The drive into Oxwich Bay was a normal drive—until we came up over a rise to this amazing and stunning view! This happened more than once in our travels. While this beach was the most accessible of all beaches, it wasn’t the one. I sat and took it all in. It was playful and wonderful, and I’d go back.

Langland Bay, full of people, sunny and warm, was wonderful, and the restaurant that served up my fish and chips has an incredible view. The tides in that area dictate beach access. It also meant that to get to the water, I would have needed to cross some difficult areas. While it was a wonderful place, it just didn’t do it for me.

Then there was Bracelet Bay. The moment I saw it, breathed the air, and looked at what was there, my heart was stolen! The ice cream was lemon—and the first ice cream I had in Wales. It did not disappoint.

The bay holds my heart with its lighthouse that I had seen as we drove into the area. I would have loved to see it up close, but not this time.

As I looked at Bracelet Bay, it called to me: Here! Here! But the beach was not accessible to me. It is accessible. This is where I wanted the ashes to go. My heart sank. AND, on the other side of the lighthouse: a pier! Where was its access? I wanted that pier. I sang “I left my heart in Bracelet Bay” to the tune of “I left my heart In San Francisco” because I had fallen in love. Sara got it.

My time with Sara ended on a Monday morning: Goodbye Mumbles, shack, and on to an area I was in love with. We drove to my next destination, and to the couple that would be with me when the ashes were spread.

Hello, warm and love-filled home! I’ve been lucky to know Grace and her husband, Ken, for several years now. The home, and these people, wrapped me in care. The cold from hell continued to rage. I rested, binged, and enjoyed the fact that when with Grace, you enjoy her enjoying her tea.

I informed them that when the weather was behaving, we’d be off to spread the ashes. I will admit to being concerned that Wales would rain on me, and I’d miss my chance to do what I needed to do. I found out that Ken knew where to park to get to the pier. Hope was alive! I relaxed and trusted that it would happen. That Wednesday morning, we put the ashes in the boot, and around noon, with the sky not promising a blue pallet, we set out for Caswell Bay. 

Lunch was delightful, and as I sat in the café the urge hit me. Ken and I walked onto the beach for confirmation of what I was thinking. No, not here. As we neared the car, the sky dumped rain. As we drove into town, my heart sank. Rain. NO, not now! And yet, it was present. Would I ever free the ashes? 

Joe’s Ice Cream Parlour called to me, and I let my heart enjoy some incredible vanilla. It is wonderful! I’ll go back for more. Then, a quick pop into a shop, and on exit, sun!!!! Glorious sun and, yes, I wanted to go to the pier on Bracelet Bay!

The Release

You really don’t want to script this type of thing, and I didn’t. I knew where I wanted to put the ashes. What I would say either silently or speak out loud would happen.  

I had run several things through my head. I had sat with this for six years of grief work. Yet, at the moment of release, my heart went to a quiet, sacred place. I spoke to myself, for this was mine, and mine alone. A silent “I love you” as the ashes left their container. As the ashes hit the water, there was only love. I had done the work of healing the pain, the hurt, the anger, and the struggle. There was nothing but love in my heart. His ashes were now in the water; they were free, and so was I.

I allowed myself the pleasure of a whimsical fantasy that now, Jon was exploring the bay, making friends, and asking lots of questions. For me it is a fun, harmless fantasy that expanded on who he was in life. I let the playfulness stand.

I was pleasantly surprised that all the anger had left me. When it was time to let go in fullness, there was no anger to be had. Six years, crying, angry, hurt by what he’d said to me in the last fifteen minutes of our life together. While I remember the words, the pain is gone. I had thought that I’d explode in anger; I didn’t. I had allowed myself to do the work of navigating through grief, to accept, to give time the chance to work on me. I had not turned from the difficult work. I have faced it head-on and accepted the process. I’ve run the river well.  Six years later, it was time to set the ashes, and myself, free. It was a closing that I can look back on and move forward into something new.

Leaving the Safe Space: Part 1 of the Holiday Journey

On August 31st I boarded a flight that took me to Wales. I’d be there for three weeks. What I didn’t expect was that I’d get an education on my disability. I observed myself in ways that I hadn’t done in years, and I discovered that environments can be illusions. It was a great holiday and learning experience. 

Before Jon’s death, I had created a safe environment for myself in this home. I’d forgotten how hard I worked to accomplish the deed. Jon had his space, and all other spaces were “Gail friendly.” After his death, I put the final touch on this place. The final touch was doing the front yard, to make it safe for me to be in. It took years, and careful thinking, to do it right. I needed to look inside of myself and ask, “What is and isn’t safe about this? What do I need to work in my home?” I realized that I needed to order new office and bedroom blinds, lay better flooring, and move things around in the kitchen. I reworked where furniture was placed in the living room. This home has become so safe that I haven’t wanted to notice its safety, and I became oblivious to what I had created. I realize now that I didn’t want to leave my safe haven. Now, I will leave more often because of what I learned. I need to get out, get away, and return refreshed. Yes, I needed this holiday, and I needed to learn some things about myself.

There is a process of becoming reconciled with one’s own disability. When we’re born with it, we adjust slowly. It feels normal to us. As children we naturally think that the world may be the same for others. I thought, at first, that how I saw was normal. Then I matured and found out that while I saw less than others, my vision didn’t work the same way. My seeing was radically different. Talk about a shocker! An example of normal versus abnormal would be like going into a functional home and finding out that not all families fight all the time. For a kid who comes from an abusive situation, this is a great deal to process, and then to attempt to unscramble on their own. My vision issues were present from the beginning; as such, my parents normalized things. From a young age I had to deal with what might be considered an adult issue—I had to figure it out. No one thought to help me make sense of it because I didn’t know, at first, what I should be asking.

I’ve been sighted since I was a one-year-old. My vision, what I have of it, is what I have. It’s my normal. Lack of vision didn’t slow me down: I found constructive ways to make things happen.

That was the way it was—until it changed. It changed for me one cold November evening when I engaged in some Night Walking. That night the world became unsafe for me, and I discovered I’d lost vision. That night led me to the ophthalmologist, realizing I might need a guide dog named Maira. It would also lead me to a place called Loo Erf, and fifteen months of rehab with the help of Koninklijk Visio. While the Loo Erf was a lesson in adjusting and confronting my vision once again, it forced me into the realization that I had lost more vision due to the PXE I lived with (Thanks, but Not This Gift). Looking back, I thought I’d done all the work. I was wrong. There is always more to discover!

One of the issues that I’ve had to deal with, and I’m not alone in this, is that I need to control the environment. I need good lighting, the best seating I can get in any room, a good hearing situation, and spaces that allow me to function as normally as possible. I’m not a control freak, but I need to see and hear it all. This also came up at the Loo Erf with my mentor, who thought I was being controlling. He consulted with another mentor who worked with visual and hearing issues, who informed him that I wasn’t controlling, but rather I was doing what I needed to do to gain environmental control in order to maximize the best situation for myself.  The holiday was a lesson in gratitude for my environment, and also a lesson in what I can’t do by myself. YIKES!!! I discovered a list of “can’t-do-it-alone items.”

I can’t eat in poorly lit places anymore; I can’t walk and explore new places without assistance; it is harder to adapt to new places rapidly. While I can navigate a new location by creating a map in my head, I may not see all of the dangers without a sighted person to alert me to them and prepare for them. And so it was that “Myrtle Mae” (my cane) and I had a grand time in Wales, and I had sighted people with me the entire holiday. And yet, I still silently freaked out when the new space came up. It was a cross between wanting the adventure of it all and freaking out that in order to have the adventure of it all, I had to do new places that were not safe or familiar. It could have, but didn’t, traumatize me. I know how to deal with such things now.

My cottage mate, Sara, was a gem. She sacrificed exploration to allow me my limited abilities. On Saturday, while I crashed, she went out exploring. I’m glad she did. Grace and Ken were loving, kind and gracious, and they took me to Joe’s Ice Cream Parlour. Claire was her wonderful self; we talked and giggled and learned from each other. (Thanks for the taco run.) Sue and Paul were delightful. None of them made me feel ashamed, awkward, or incapable. If I needed “eyes,” they became “eyes.” Unpacking and repacking is never easy for me. Taking the suitcase down and setting it up again was not fun. Everyone was stellar during the time I was slowly coming to terms with a reality I wouldn’t connect with until I walked through my front door. The reality: my home is what I need to have in order to make things work for me visually. I’ll leave because returning will reinforce some good things. I’ll leave home because I need the time away from my home with a holiday.

Looking back, I realize that, along with the cough from hell, I was dealing with a vague uncertainty that hit me each time I walked outside, had to learn a new place, or navigate something else that was new. Myrtle Mae and I walked, but I was never alone. The fact is that I only have 12% of my vision left, and that isn’t a great deal of vision. It’s enough to consume tacos and to do the things I did. I’ve returned home to a Gail-friendly home. It is good. 

I’m still in shock over what I learned, and know that my reality is far different from the safety of this home. It is unsettling. It is real and what I and so many other disabled people face when we leave safe environments.

The Hitch: Part 2

Is preparing to go on holiday always a hassle? I got all the crazy put into place and found another crazy but not-so-crazy something waiting to greet me: my calendar! I think I need to travel more often. It could serve to keep me on my toes.

The above sentiment is healthy, and yet, I don’t like to travel due to what I wrote about in the first post; here I am poised to do this again. I know I’ll love it once I’m there; it’s the getting-there part that is annoying me. It’s also the fact that I’m self-employed, and the secretary/boss has to make sure all things are buttoned up before going. The hitch? People with low vision don’t do things fast; we do them slowly.

I can listen to stuff on audio that is at a faster speed than you might think possible. It takes time to learn to do it. When it comes to seeing, I look slowly to make sure I don’t see it wrong. So, clearing my schedule takes more time. Everything does. I wish it were not so.

The most frustrating thing I deal with is the “abled” who get bugged because I’m not doing it fast enough. Do your work, people! I am not your problem. Your inability to exercise patience with me is your issue, not mine. My independence is not up for grabs. Is yours?

Maybe the biggest hitch in our lives is people who aren’t willing to allow those of us with lesser physical abilities the opportunity to create our own ways of independent functioning. Those of us who have done our work know our limits. We ask for help when needed. The chances are high that in therapy, a rehab center, or somewhere else, we’ve had to come to terms with hard realities that haven’t broken us. If they did break us, it was only until we scraped ourselves off the emotional floor and got up again, knowing we could rebuild ourselves. We’re secure in what we need and don’t need. We don’t need others trying to feel comfortable for their own sake.

I spent fifteen months in a vision rehab center, learning how to do new things independently, without the use of my eyes. The two most essential skills I learned were how to talk to others about what I see and don’t see, and the ability to face the ugly truth about what my life really is. Simply stated, I learned to deal with messiness in constructive ways.

I spent one hour every week being confronted by the sweetest woman. She could match her clothes to a coffee cup and dish out confrontation of the highest caliber. She made me think, reframe, and understand myself as a person with disability. Most of the residents didn’t like the process; I inhaled it!

Our independence comes at deep personal growth, and often we pay a price for that growth. We lose friends who can’t deal with the fact that life is messy. We gain new friends who get that the messes of our lives encourage the roots we’ve planted to go deeper, to reach the water that is buried deep within the earth of our souls.

We’re strong; we can stand for ourselves. So, cut the worship narrative—we don’t need it!  We’ve dug down in places you may have not gone yet. You may have dug in soil we’ve not been in. Let’s learn from one another by offering up the needed insights we can give to each other.

I’ll settle into a slow, methodical clearing of my calendar this week. The days of fun, laughter with friends, eating, and discovery are near at hand! Time to move towards it. Hopefully there won’t be any holiday hitch.

Velvet Deconstructions

In 2006 my husband fell down the rabbit hole of a faith deconstruction process that would last until his death in 2016. In 2006 I listened and supported, but didn’t follow down into the rabbit hole of Mormonism. I didn’t feel I needed to know what was and wasn’t down there. It wasn’t my time. It has to be the right time to fall down that hole.

At the beginning of this tale, I should state that I was raised in a home where reason and logic were present. This would come in rather useful in the years to come.

It took me six years to go there. I’m sure that seemed like a long time of waiting for Jon, waiting for me to dive rapidly into that same hole. When I did, it was scary, sad, depressing, and full of questions, culminating in a process of mourning what could no longer be. In 2012 I entered what I now look back on as my “velvet deconstruction.”

I’ve never written about this because, to be honest, I haven’t seen—or felt—the need to do so. That has changed. What changed?

This year I’ve read a series of books that began with delight and quickly turned to needing to rethink, reframe, and reconstruct the Western Jesus. I realized my journey had challenged me in ways I hadn’t seen coming and left me feeling as if I was splayed on a spiritual floor. This time around it wasn’t velvet: it was brutal. As of the time of this writing, I’m healing, looking back, and wondering why I missed this until I was so deep within the process that the mess was ginormous.

Having a crisis of faith should be normal for everyone who is on a healthy self-development path. James W. Fowler researched and wrote about personality and faith development in Stages of Faith: The Psychology of Human Development and the Quest for Meaning. Stages is a classic and outlines our cognitive development throughout life. This is an academic work of research. What I really love about Fowler is that he illustrates that we never fully arrive. We cycle through all the stages over time, arriving at a higher level, only to begin the process over again. As with all things in life, learning never ends, and we’ll be doing it until our last breath.

So, I should have seen a second deconstruction coming, and I didn’t. I’d settled into a sweet spot, and when it ripped me apart it really tore at my soul!

How did this all happen? The simple answer is that I moved from one stage to another. The more complex answer is that I began to explore my values, my beliefs, and my life in new and deeper ways.

While I began to explore faith, I was enrolled in a rehab program for people with vision issues. It began as a five-day residential process, and during this time of my life I was confronted in a bold manner, asked to face my visual realities, and supported on multiple levels. And, in the end, I was able to confront myself. Looking at my religious life became an extension of that. For fifteen months I reconstructed my visual self; I wrote about it in Living With Disability. It was a life-changing experience.

Because of the work I was doing in this part of my life, it followed that I would look at the rest of my life. I began to allow myself to feel the sadness and pain of understanding that things are seldom what they seem. And so, it happened on a Sunday morning as we drove to church that I uttered the words that altered everything: “Can I make this church a place to stay and do good things?” That was in 2013, and I was trying to figure it out while realizing my husband’s need to stay away from it all. By 2014 I was still in place to try and a find a path to change. That all ended in November of 2015 when Salt Lake City announced what became known as “The Policy.”

This policy was set to discriminate against children who had an LGBTQIA+ parent in a relationship that was not heterosexual. That evening at dinner I lost it. How could a church deny baptism or anything else to a child?!!! Up until that moment I had thought I could make it work. Now I realized that I could not support such thinking. (The policy was reversed in April 2019 and the damage that was done couldn’t be undone or unseen.)

Suicide alters everything in the way you think, and in 2016, when Jon decided that the pain and suffering, he’d been enduring for the majority of his life needed to end, I was changed. I began to realize that I couldn’t go back to that church, and slowly during 2017 I drifted into nowhere land. I wasn’t making any major life decisions. I was moving to something, and someplace, new. I didn’t understand what it was—I just knew I was changing.

I was traumatized from a suicide, trying to re-establish a life. In the fall of 2017, I was discovering that another faith home was calling to me. I had to check it out. Certainly, I could look and still stay LDS. October of 2017 rolled around, and I found myself in a Starbucks at the Utrecht train station, having a conversation with someone whom I would come to love and respect. He wanted to know what I thought, not what I felt! It was in that realization that I knew I had a problem. Everything in me had been raised to be LDS. I was dealing with multiple generations of Mormons in my family. How could I even think of leaving? It wasn’t doctrine so much as other things that were tugging at me, calling me out to something that felt so different, so new, and where I needed to be. I told myself that I could attend this church service on Sunday evenings and it didn’t mean I was going to do more than that. Why would I ever leave? I didn’t need to do that.

I began to read, to learn, and to discover new ways of thinking. Growth is about freeing the soul and giving it permission to walk into new paths. By the spring of 2018 I was no longer feeling I could stay LDS and realized my value structure had shifted or rewired itself. I let go and relaxed into the process.

Looking back on all of it, I can see that this entire process was velvet. While there were tears, trauma, and fear involved, the process was gentle. Considering everything I went through from 2006 through 2018, it really was velvet. How could this be? As I look back, I think I view it as gentle because I wasn’t trying to force tings. I allowed the questions to surface, didn’t panic, and the few difficult situations didn’t last that long. The most difficult week was a conversation with my mother, and it ended with her apologizing to me. My mother and I could talk about most anything and giggle over life. We had a mutual respect, and she was open to many things that many LDS would have flipped out over.

I’ve come to the conclusion that faith transitions or journeys are more about a rethinking of a value system. Many people who choose to develop and leave the safety of certainty can remain in the same faith and approach things differently. For others, the choice to stay in one’s faith of origin is not an option. There are times when what we need changes because our ladders are sitting against a new wall. Sometimes the search can take years. The search for a new faith home can lead us out and to something completely different.

As I complete the last few months of my spiritual direction certification, I’m amazed by the paths that people are finding that bring them peace. I look back with my new understanding, and the new tools that got put in my toolbox, and offer up gratitude for both the velvet, and the not-so-velvet of the past few years. My new home is just what I needed.

The Hitch

I’m planning my holiday, and over the next two weeks I need to firm things up. During the past few weeks, I’ve come to understand that Covid-19 set me back in the travel department. I had not realized this until I started this process of booking flights, making sure I could get to where I was going, getting the proper testing done, and making sure that I can get to the airport. When you’re disabled, can’t drive, and depend on third parties to make things happen, it puts a kink in things.

There is a part of me that doesn’t want to deal with any of this; I just want to stay home and not deal with the hassle of it all. I know I can’t do that. So, I better face up to the hassle and get it all done.

Meanwhile, I’ll tell you about why being disabled and traveling when you’re single is such a major pain-in-the-everywhere.

When the average person plans a trip, they plan the trip, get themselves to the airport easily, check in, find the gate, and get on the plane. When the average disabled person plans a trip, there are added complications: HOW am I going to get to the airport? Is my needed assistance set up and confirmed? Is the airline I’m flying on friendly to people with my particular disability? Are the airports friendly to people with disabilities? If I’m on public transit, is it reliable? If I’m in a taxi, is it reliable? If friends are helping, are they dependable?

Now, add to all the above that I’ve got to meet travel requirements for airlines and countries before I board a flight! Can I get to a testing center? Do I need to ask someone to take me to the center? When do I need to make the appointment? Are the sites for the information accessible?

By this time, I want to curl up, call it off, and stay home. That won’t do.

This leads me to people I know who use travel services that support the disabled, at a slightly higher rate. They pair people with companions. For some people, this works well. For me, I’m not really interested in this type of thing. So, I have to deal with the annoyance of creating and doing it myself. Visiting friends for this holiday is the best option.

Don’t take this the wrong way: travel is skewed to favor those who can easily do it. It brings back memories of family activities where my siblings would be able to get to the accessible places; my mother felt like she needed to stay with me, and I felt guilty over depriving her of being with the rest of the family. “Mom, I can watch,” were words often spoken. The memory hurts. Now, I don’t just watch—I join in on my own terms as best I can.

I use the “wheelchair” service, I get assistance, I have cards in large type for safety instructions, and I meet some very nice people who are there to help me get to where I need to go.

This time around I’ll connect with friends that I love. I’ll explore beaches and other places, knowing that those I’m with will understand that I don’t see the world as they do. This time I’m staying in a cute but quirky cottage by the sea—some wonderful locations that will afford me more beach time than I’ve had in almost a decade—and I’m going to eat my way through all destinations. Eating is one thing that I can do without issues! So, let the feasting begin the moment the wheels are down and I’m on terra firma!

This week I prep so that next week I can relax about it. This week, I’ll embrace the insanity and make sure it is all ready for the safe, fun, event-filled days I’m hoping for. Next week I’ll reward myself for a planning job well done. Well, that’s the plan right now.

Where Were You When…?

On July 27, 1977, my life stood still as I watched my younger sister fall to the ground dead. It was a Wednesday afternoon, and we were in Paradise, California, at the 76 gas station. During the next two or three hours, word spread in our church community. People would later tell me where they were when they heard the news. No one asked where I was: I was living it.

That was forty-five years ago! The memory is still present, but the pain and trauma of what happened that sleepy summer afternoon stand in my mind; the wound of that past experience healed but will never leave.

To this day, those who knew Joyce remember where they were and what was happening. They tell me where they were, but they don’t ask where I was when it all went down. The code of “don’t ask” slammed it all shut. They don’t need to know. To this day, I don’t know what was said about where my mother and I were. We witnessed it all in its horror.

The truth is that our trauma was not for public consumption. My younger brother never got to say goodbye to her. I left with two cousins for school, and he was now home alone having to adjust to being an only child—when that wasn’t the plan. You never plan for something like this, and yet I had thought about it because I knew she could die.

Her death messed things all up. We had to re-group, re-think, and adjust to life with no Joyce. Forty-five years later, the memories of people telling me where they were surface. Today is her death anniversary.

My mother and I talked about it when we were older and had distance from it. Death was riding with us that day and somehow my mother knew it. She thought it was going to be her that would die. We finally talked it out and realized that we were glad we’d finally said the words—late as they were to our journey of loss.

The truth is we all remember the “Where were you when…?”question. Those of us who are old enough know where we were when JFK, MLK, RFK, and others were brutally cut down. We remember the Apollo 11 landing, Challenger, the other shuttles, and now school shootings. We stand as witnesses to personal and societal pain.

We’ve taken to gathering at impromptu memorials to share as a community, and yet there is still stigma around personal trauma.

We’re not quite there yet with personal trauma; it’s like the accident that everyone drives by slowly in hopes of seeing the gory stuff. It’s about people wanting to be voyeurs into pain that they would not want seen themselves.

The catch here is that the “Where were you when…?” question enables us to talk through our own trauma around the incident. So many knew my sister, so many loved her, and no one had expected her to drop dead in a phone booth in Paradise, CA. So, the collective mind was collectively blown. Because of the collective trauma, we process it how we can.

For whatever reason, all of this came up forty-five years after the fact. I now live in The Netherlands, I’m far from family, and so, I’ll put this up instead.

Today I purchased flowers for myself and they turned out to be her favorite color: yellow. I’ll enjoy them for her.

I look at the clock and think about the fact that at this time forty-five years ago, we all had to eat. Some of us went for pizza and some stayed home at my aunt and uncle’s place. I went for pizza. I know, weird. The next day, my parents and my younger brother got into my father’s car and drove home and planned the service and all that went with it. Where was I? I was assigned to clean the house and so, like the dutiful daughter I needed to be, I vacuumed and answered the door for people paying respects. I think I’d rather tell people where I was when JFK was assassinated. Where were you when…?

Yes, I’m Taking a Holiday

I suspect that this will turn into a series of postings, partially because I’m amused at what I’m discovering about the journey out of grief and loss and what my brain seems to be doing with all of it. Let’s get on with it!

The first trip I took after my husband’s death was about a year later. It combined a conference with seeing friends and family. All things considered it went well, and the post-“husband-committed-suicide” conversations weren’t bad. I got home after three weeks and was glad to see my cat, Penelope. She had a blast at her kitty hotel in the country.

Traveling takes brain power, and once home I settled in for a year of hard work, looking at where I was and where I needed to go. I had a wee bit more confidence in the travel department, so when the next adventure rolled around, I dealt with it smoothly. I pulled it off with the help of charitable friends. 2019 produced two trips that I needed to take, and then: shutdown! We all know what happened next.

When I reflect on it now, I was fortunate to not have too many things go wrong. Going back into how my body was feeling when things did go wrong was telling. It was the same crisis response that happened a few times in the second year of post death trauma. It is so true that our bodies really do keep score on what is happening, and mine had.

When our bodies are in crisis, we miss a great deal. We can’t see how we’re reacting in the same way that others around us can observe what is happening to us. We fail to see signs that we’re missing cues. We tend to think that we have everything covered and that we really are just fine: Far from it!

The first year is the year of the first everything: a survival mode year. Then, during the second year, we drop defenses and we get slammed! It is the worst year to live through. It isn’t until the third year that our life texture really alters itself. In 2019 that is where I was. I was putting things together in new ways, able to see and understand how I was being triggered. I was able to understand that one month before Jon’s death anniversary was my younger sister’s death anniversary. It had also been traumatic, and when I connected the dots, things calmed, and I understood the strange depression that had set in and lifted promptly after his death anniversary.

I was thinking and functioning in healthy ways now and thought that all would go well. It would be onward and upward!

Here’s where things get dicey. The pandemic shut my brain down, again. I was doing so well, and then, splat! I slid back into I don’t know where. Our brains respond to stimuli and come to expect it when we begin to move forward. My brain had no way to know that the entire world would stop functioning as it once had. My brain regressed with the isolation. I think all of us regressed. Old traumatic events might have been triggered, new trauma might have been born, and the uncertainty of what the world would look like was an issue. So, my brain took two steps back, and until I really sat down and looked at the situation, I didn’t see it clearly in the way I needed to. I could have traveled last year, but I didn’t. Now, I get it.

A combination of fear and the realization that I hadn’t taken a real holiday in almost a decade set in. When I verbalized this to a friend, she was concerned: “You need to do something for yourself!” Stepping back, I could see the excuses I’d been making to myself and realized that yes, I needed to plan something that I wanted to do.

With all of this in mind, I thought about what I wanted: a beach, a reading binge, good food, seeing friends, seeing pretty places, and some lovely chats. It might not be your dream holiday and that is just fine. I’m going to create some magic on the beach. Why? Reason has returned and I need to do this.

Hearing it, Seeing it

Last night I learned a valuable lesson about hearing someone, doing the listening that needed to happen, and being awakened to what I was seeing with my ears. Confused? I understand that this would sound quite confusing. I also know that how we hear, see, and understand complex situations is not simple. Life isn’t simple.

Most of the time in conversations, people listen while planning what they’ll say next. That is not listening or hearing: it is pretending to listen and to hear. The idea that a great conversation should click along, be fast paced, or flow smoothly is only accurate if you want a bad conversation where you are not heard. So, nix on that sort of conversation.

Learning to listen is an art, unless you are Guinan, the listener, on Star Trek: The Next Generation. Then it is supposed to be genetic. Listening is an art, and sitting with someone, and their story, is a gift. The gift is being fully heard, and the art is in shutting up and offering the gift. Those conversations take longer and have a great many bumps in them.

What happened last night? I had gone into a conversation with a friend, who was doing something that I didn’t agree with. I was fully prepared to say that, and more. I began to do just that and then, hearing with my eyes, looking with my ears, I noticed my friend’s pain emerge. I’d never seen it that way before. It emerged in the words, the anger, the deep hurt, and the loss of what should have been in the past—but wasn’t—and what was being created in the present. I understood my friend’s actions in a new way. I had to chastise myself for my previous thoughts. I went to bed last night understanding that I was the one with the issue. Wow, how could I have been so dense?

The answer to the above question is that most of us operate on dense! We only switch to healthy operational listening when we really blow it or get called out on our failure to hear what is being said.

How many times have you gone to visit a friend who is grieving, only to see the dirty house, judged that, and not heard or seen the pain that isn’t being uttered? What is being spoken when we see the house, the hair that needs a cut, the meals that aren’t eaten? Are we hearing with our eyes? Are we seeing with our ears?

What if it is other family members in pain, or friends who are suffering from the same loss? Are we hearing and seeing right past each other? Are we thinking that because it is the same loss we’ll handle it in the same manner and at the same pace? During tense situations we tend to shut off, close down, and generally tune out the excess noise levels that we cannot tolerate. It is difficult to process everything when we’re hurting.  What can we do to bring sanity to ourselves and to those we engage with?

Here are some suggestions that, at different times and with different people, have been effective in providing solutions to tricky communication situations. This isn’t a complete list, but it should help you to think of original ideas that will work for you.

  1. Hold conversations in neutral spaces where you’re both on equal ground. 
  2. Own your feeling words. Feelings are never wrong: how you feel is how you feel.
  3. We’re going to have different feelings about the same situation because we’re different.
  4. Meet each other with respect. This means seeing the conversation through to its completion.
  5. If you need to pause the conversation, when will it resume?
  6. In a larger group, use a talking stick to indicate who the speaker is. It can be passed around the group. While the talking stick is in use, all members listen, and there is no crosstalk.
  7. Parroting what someone said is not conveying what they said. Respond to the visual and auditory cues as well. The response you give might have a question attached to it. For instance: You really like the new room, and I’m sensing there is still not something right with the space. Can you tell me more?
  8. If you know that the conversation is going to be difficult, bring that up first and give the person two or three options around when and how it can be done. Keep it realistic. In other words, hell freezing over, or the equivalent, is not a realistic option.
  9. Feeling volatile around a subject? Work off some of the energy around it before you engage. Being clearheaded in conversations will improve their outcome.
  10. Breathe deeply three times before you respond. In those three breaths, question the response you are preparing for respectfulness and consider the long-term damage a remark could make. Explore how you’d feel to be on the receiving end of the statement.

The Relationship File

In the last decade, I’ve lost my husband, mother, brother, and sister. I’ve jokingly told my younger brother that he’s under orders not to die on me. I’ve also said goodbye to an old faith home and welcomed a new place of faith into my life. All of this comes with grief, loss, mourning what was, and needing to reexamine relationships.

Of those who have exited life, only one was old enough to do so; the other three were all far too young to go. The reality is that they are all gone. The relationships now stand for review in the memory file, and what is done is done. The past faith home also stands in a memory file. Everything is up for discussion and it’s all fair game; nothing is sacred, not even my mother, whom I love deeply.

In looking at all of this, I must turn back the clock to the year 2006, when my husband’s questioning of his faith began. At the time, I wasn’t questioning, but I did want to hear about what he was thinking, feeling, learning, and what was making him angry about it all. The process altered the way we communicated, and it led me to my own path of discovery. It was a good thing, and ultimately, I took from it that relationships can change and that the change can be for the better. We didn’t need to go to antagonism. The concept that we could be different and have a healthy relationship was new to him. We could talk and nothing was off limits. That was where we were when he made his exit. Because examination of things was possible while he was alive, it made it possible to return to the relationship after his death and turn over some of the things that I needed to look at.

Relationships don’t end at death. We carry them forward; they are woven into the tapestry of our ongoing existence. As much as we may wish to erase someone or something from our lives, we can’t. We learn through turning over the rocks to look at it all.

This is also true of my relationship with my mother. I was fortunate that for approximately eighteen years, my mother and I spent every Monday in conversation. We’d giggle, laugh, cry, learn from each other, and talk about things that were deep and serious. Obviously, we spent hours before that time in conversation. When she made her exit, the “I love yous” had been said, and the one question I never asked—the one that I’d like to go back and ask now—I think I know the answer to. Her death came less than six months after Jon’s traumatic death, and I did not go to the memorial. My not attending was a bad choice, and I learned from it. Being there is needful in so many ways.

As I examine my relationship with my mother, I can make peace with what negatives there were. I think the fact that we had that conversation base to draw on has really helped. Pushback was allowed.

Then I look at my sibling relationships. My two older siblings and I didn’t always understand each other. I’m sad about this, and I also know that it wasn’t of my making. I tried. Could I have done more?

In looking at the hard question of putting things right in life, and after they’ve made their exits, I’m challenged by the meaning of our relationship. What is “right?” I love them both. I know that they, each in their own way, loved me. As I take relationships apart, I arrive at the same nasty conclusion that I did in life: They never understood disability the way they needed to understand disability. They were never able to completely understand me. I’ve come to the conclusion that I can be at peace with my end of the relationship and that is the best I can do. This brings up another question for me, and it is one I’ve been musing on for some time.

Why is it that in death, loss, and grief, many people choose to move forward without the work of examining the loss they’ve had in life? The urge to replace someone or something can be strong, and it can also damage us. The more I sit with this question, the more I wonder if it has to do with the fact that our society has radically changed relationships, trauma, and life in general. I’ll explain using WWI and WWII.

Both of my grandfathers were veterans of WWI. They came home on ships. They came home together with war buddies, and in large numbers. On the ships they had time to process the violence and the trauma, and they supported one another. WWII came around, and their sons enlisted and went off to two different fronts: Europe and Japan. They also witnessed violence and trauma, and they came home on ships. They also came home to a hero’s welcome. Their fathers had processed the war and now could mentor their sons. War breeds atrocities, and WWII left the world with several that can never be undone. Old times weren’t any simpler, but they were slower. What’s changed? My grandfather knew the wisdom of allowing his son to prune the rosebushes and tend the garden. He worked through some of the trauma that way.

Leaving the site of battle is a matter of days or hours now. People now come home by boarding a flight that will carry them home. Veterans now come home to a fast-changing society, fast tech, and a culture that is in constant motion. They return traumatized and, in many situations, misunderstood by loved ones and society in general. It alters relationships. This is not to say that my parents’ and grandparents’ generation didn’t suffer from PTSD and other war-related issues. I’m pointing out that their return was slower and allowed for a different type of processing time.

I’m suggesting that maybe we’ve become immune to the damage we’re causing to each other by not slowing things down. In the past seventy-plus years, we’ve moved forward in both healthy and unhealthy ways. This applies to how we treat our relationships.

Are we willing to slow down and take the time to process our lives a wee bit more gently? Parting is hard. No matter how hard we try to avoid it, the past does catch us, and sooner or later what we failed to look at in the near or distant past resurfaces to bite us when we’re not looking!

I reflect back to a night around the dinner table when my father lost it over food. I realize now it was a war memory that he should have sought therapy for, but in those days doing therapy wasn’t common. At the time, it had been about thirty years post war—pruning the roses had not resolved it all. I wonder what would have happened had he looked, talked, and resolved? I wonder how our family would have been changed had he looked. I know how I’m being changed by working slowly and deeply on the past, whether it is peaceful or difficult. I’m moving forward in a healthier manner than had I rushed into my future life. I’m walking into something new, and I hope I’m doing it with grace.