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Posts tagged ‘Disability’

Aug 20

Reflections, Part 7

The Deconstruction of a Marriage

Somewhere in my reading on grief, I read that in order to do honor to myself and to the relationship, I needed to deconstruct it before I could even consider moving forward and on to another relationship. This made complete sense to me.

Jon’s suicide came out of nowhere, even though I understood suicide to be a reality of being married to someone who had a diagnosis of bipolar 1.

With twenty-two years behind me, I’d been through it, raged over it in a raw form, wound up in my rose room, and found unstable peace.

Ultimately, if I was to do the honest work of moving forward, I had to take my marriage apart. I was about to make the mistake that so many people make: not fully examining the relationship before moving forward. How does someone look under the hood in this situation? You start with the facts that you know about, and then, as those facts are either confirmed of disconfirmed, you move forward with new information. You are boring through the mountain again, but this time the rock of the mountain isn’t placed on the conveyor belt and sent out to be used someplace else. This time you are examining it for content.

What I knew at the beginning was that, overall, we were friends first, and I had married a friend who would engage me in conversations that could go well into the early hours of the morning. Jon preferred sour candy, and I thrived on the sweet stuff of life. We were both adventurous and would try things, either doing them again or deciding against a repeat. He loved his pumpkin pie, and for me it was lemon meringue. It was pie, and we’d have pie instead of cake on birthdays, and it was a good thing.

I understood that he tried to cope with the bipolar as best he could and struggled with doing so in a dignified manner. I knew I was committed to caring for him as best I could, and that meant clearing the house of objects that could be used as weapons on the self. This was hard, and scary, and went along with some sleepless nights. I developed compassion fatigue. I don’t think you can understand how bad it is inside until you’re on the outside of the situation. I recall telling my mother before her death what it was really like. She asked why I hadn’t told her, and I replied that all you would have wanted me to do was to get out. I didn’t like the volatility that bipolar can bring, and yet, I knew leaving would need to be carefully orchestrated. I had sat with this thought and decision for some time. I had considered divorcing him that summer, but I made the choice to stay for the time being. I didn’t know his mind was moving towards a psychotic break that would decide things for him. He’d told me he would not endure that place again.

I came to understand that, while the marriage was not about his bipolar disorder, the mood swings, with their verbal abuse, were a part of the marriage.

In 2010 I made the decision to call him out on the anger and aggression he was showing towards me. Once he could hear it, he was able to work on it and commit to not behaving in that way anymore, and he didn’t go there again. When he began the DBT (dialectical behavior therapy) process, which includes acceptance for one’s actions, things began to level out in new ways.

What was my part in the marriage? As mentioned previously in the piece on exiting the Mormon Church, I was battling some demons of my own.

I needed to understand how everything I was dealing with affected the marriage. Being raised to be a good Mormon girl and woman had a great deal to do with a lot of who I was in the marriage. How did I enter into this relationship?

There was a great deal of suppression involved in the process.

In the first grade, it was the girl who had the pretty white and pink dress and the jump rope. She wore cute little Mary Jane shoes. I didn’t have Mary Janes, and I wanted some. They were so feminine. I thought it was normal to think that way. As an adolescent I couldn’t understand what all the fuss was about boys. I glossed over it and, in doing so, sent it away to not be thought of for years.

Because of my disability and experience at church, I had written off the possibility of marriage.

I met Jon when he came to do a house call on my computer. A friendship developed, and after four years we married.

Being raised Mormon meant that I was supposed to grow up and marry a nice Mormon man. I’d hit the jackpot! I’d married a brilliant man who could have powered the world on a paper clip. It was his out-of-the-box thinking that I loved most about Jon, and he liked that I could go to that place as well.

Still, there was this thing hanging around, and it wasn’t spoken about, and I couldn’t utter the words while he was alive. I don’t get men. I’m supposed to understand men, and I’m supposed to feel attracted to them. I don’t. After his death, the guilt that I felt slowly surfaced. It took several years and didn’t surface in its full ugly form until I’d left the Mormon Church and moved on.

I felt guilty for marrying him, guilty for the sex that really didn’t work well. While thinking all of this, I was also well aware that this was not a one-sided issue. Bipolar disorders affect relationships, and in deconstructing all of this, I came to understand that I was a participant, and there was no blame to be had: just understanding. Blame and guilt are so often miscued in relationships. Looking at this with my own therapist caused me to rethink my thoughts and feelings around having married Jon. In safety, I could admit, actually, that there was no way around this: I like women.

Nov 27

Revisiting Our Hardwiring (Revisit)

This post was originally published on April 30, 2024.

Author’s note: I’m involved in a book project that is requiring me to submit one chapter on the idea of perfection. This is huge, and I’m going to write about some of what I’m musing about today.

Today’s meditation was one of exploration. I began by asking about why humans are hesitant to include those who are disabled. My path of thought led me to question many things.

Animals may kill a defective offspring. Maybe they smell it, see it, or somehow sense it, and then they kill. As humans, we judge our species based on different criteria. We struggle to accept humans who are diverse.

We run from diversity as if it were a disease that it isn’t. We struggle; as humans we are born hardwired to fear diversity. What we fear we push away or shun. Like animals, we react rather than question.

A doctor friend once told me that back when he was in medical training, they didn’t teach doctors how to properly react with the parents when a disabled person was born. They handed the newborn to the parents and sent them home, only to have the concerned parents show up at the pediatrician’s office with the disabled baby, where they’d experience the same attitude. Things have gotten better, but we still push away what we as humans can’t cope with.

It is a process that makes sense but doesn’t make sense at all. There is Enneagram theory that supports the concept that we all begin as type six, and then slowly move out and around the circle to other types. Type six souls have a fear component in their makeup, whereas type eights lack this fear. Eights have fears: we just deal with it differently. Humans are wired to fear diversity. Can we change as humans to evolve into people who can learn to not fear other humans?

There are more type sixes than any other type on the Enneagram. While I might want a type six in a crisis where we run out of crazy survival stuff, I don’t want a six who hasn’t done their work on themselves in other situations. I digress.

We tolerate diversity, and in that tolerant space we still want sameness. We thrive in sameness, and when there is failure to thrive, we label it abnormal, stick it in the Diagnostic and Statistical Manual (DSM), and many times tell the mother that she’s doing it wrong, or that the baby isn’t “right,” and try to move on. Meanwhile a little human needs help.

Jon and I had a kitten who couldn’t get the milk she needed from her mother. Jon fed the kitten, who we named ‘Roo. She bonded with Jon, and we adopted out the mother and kept her. ‘Roo grew into a beautiful cat who loved us and the other kittens we adopted. From ‘Roo I learned to love in new ways.

Humans bond with all types of critters but not all types of humans. We are like animals who are selective in who they allow into their space.

Over the past forty years, we’ve begun a movement to change all of this. This morning during meditation, I began to wonder if we can change from fearful to naturally curious and wanting to know about the differences and embrace them joyfully. 

I want to live in a world where I’m understood. I want to live in a world where the questions I get are ones that lead to that understanding instead of more intolerance. I’m confronted by the human condition: fear.

Here in The Netherlands, the word “revalidation” is used when someone must recover from injury or stroke. The word means to be made acceptable again. It is no different than saying rehabilitation in English. We value a certain level of acceptability, and we attempt to have conformity. While societies choose to punish the nonconformist, those of a different color, religion, economic status, the LGBTQIA+ community, and the disabled are separated from many in society.

A quick search on Google shows that the Han Chinese are the largest race in the world. Other facts that turned up are that the U.S. still thinks that it is the world. And this is not good for the human condition.

My Monday meditation has taken me to a place I would have rather not gone. Is there hope for us as a species? I suppose if I could raise Mr. Darwin from the dead, he’d tell me that the human condition is set, and that evolution will occur, and we will all evolve, and some of us will be wiped out.

I think I’d tell Mr. Darwin that while we are evolving, we’re devolving. While children are becoming more tech savvy, many are losing the ability to form human relationships, and relationships are what it’s about. If we fail to teach children to put down the tech and look people in the eyes, we’re not evolving.

Tolerance is one thing. Understanding and acceptance of what causes us to fear is another thing.

I wouldn’t change who I am because my disabilities have been a part of that process. I’m happy with who I am. The problem is that society doesn’t fully understand me.

Humans are hardwired in a weird or confusing way.

Mar 7

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. 

Dec 16

Thanks, but Not This Gift

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.

Dec 9

1 Comment

Dear Parental Units

Dear Parental Units,

It seems that I’m the recipient of an opening in the space-time continuum, and being as I’m a very brainy baby, I’m going to take advantage of it. I don’t know how long I’ll have to say all of this, so here goes something!

I just popped out and I know you are so glad that the pregnancy is over, that you are through labor and delivery, and that I have ten fingers and ten toes. My head looks normal and I’m breathing and crying. All is well (for now). Enjoy the next six weeks because after that, you all are going to enter a world that you don’t know you are unprepared for. Good luck—we’re all going to need it.

Six weeks from now, Mom, you are going to decide to take me to the pediatrician because my eyes don’t look right. I’m not tracking stuff, and you and Daddy are concerned. On that day, you are going to get a bucket of news you are not ready for. I’d have liked for both of you to go instead of just Mom. You see, if you both hear the news together it will be better that way. So many times mommies have to hear difficult news without daddies being present, and that isn’t right. I can tell you that getting your kid diagnosed with disabilities is bad enough, but often it is the mother who hears it first, on her own. Even though the woman (yes, in 1959 you won the doctor jackpot and got a woman) is going to spend time with you, remind you that this is not your doing, that you had a very mild case of rubella and nature happens, and she’s going to try to help you deal with it all in one day, I’ll tell you now that her good intentions won’t do the trick. Don’t feel bad. Doctors still don’t get it, and in time I’ll come to have friends who are doctors and they’ll validate this fact. Talk about it and help others to go through what you have been through. Sharing will be good for you and others.

So, take me home and get that home nurse and learn and enjoy having me. Let me explore, and let me be the happy soul I am. Let me grow up in the loving secure environment you both want to provide for me.

I Can Feel That I’m Getting Older.

Now, growing up is tricky. You are going to want to shelter me from bullies, failure, and all things that go bump in the night. Unfortunately, you can’t. You are going to want to hide when I come home from school crying because of the bullies. I need you to put your arms around me and let me know that you love me, and when I shed tears, cry with me so that I know it is OK and that you hurt with me. That would be the best!!! But the era you are raising me in will teach you differently, and you will hide the pain you feel. I’ll grow up and gain insight into this, and it will be alright.

While I’m on the subject of things that hurt: Don’t trust caregivers. I know that in the 1960s you won’t think that your daughter can be harmed by any form of abuse. The disabled are hurt by angry people and sometimes well-intentioned do-gooders who should not be allowed to work anywhere near them. I’ll be hurt, but I’ll get through this as well. All three of us are victims of having had this happen to me. You didn’t know, so don’t feel guilty over not knowing. When you do find out it will be because the time is right and I will heal from past pains.

I need to tell you that you began to do some good things for me in the late ’60s and early ’70s. You need to pursue those things even more and give me the jump-start on my career planning, and help me to see that I can reach my dreams. Just because I’m disabled doesn’t mean I can’t achieve what I want. I know my limits and I don’t need society putting false limits on me.

I’m Feeling Even Older as I Write This.

Dad, you and I are going to turn out to have passions in the same areas. Social injustice is something we will both come to understand. I’m glad that you will work with, and respect, women. I’m glad that you will be open to that.

Mom, you are going to wind up raising two daughters who have health issues. It is going to change our family. I’m glad you will have Joyce because she’ll be things I’m not. She’ll be easier to raise—trust me on this one. We will both cause you and Dad to grow beyond what you ever thought you’d have to do, but in the end it will be worth it.

As I grow up, I’m going to want to do it all by myself. I’m going to want to be just like the other kids. This is going to be hard on you, Mom, especially because you and Dad decided you’d stay at home with the kids while we were growing up. He won’t be home as much as you might like for him to be, but I know that you will tell him everything and he’ll be in the loop. But, back to the being like the other kids. This is something that many disabled kids feel, so try to understand and let me do it myself unless I ask for help. Let me struggle some and then gently offer, even if I make a stink. I’ll understand when I’m older and all grown up.

You should put me into Girl Scouts. Give me outlets that will help me to make friends and to achieve goals. This would also help society learn that the disabled CAN participate. This is very important for girls!!!! This is something you won’t think of doing, but I wish you would. I can tell you this because it is something you would think of if I had been born at a later time.

Help me discover who I am as a young girl so that I can grow to be a strong woman. Putting me in dance and swimming lessons is going to help me to become more coordinated. It is also going to fill my intense need for being in and near the water. I’ll learn from these, and even though the dance will be hard, it will plant some seeds.

I’m going to have insight into what I need. Listen to me because others won’t, and as you support me you can know that I appreciate the fact that you value who I am. I’m going to raise a wee bit of hell along the way and you two won’t understand it, but you will accept it and love me.

When I reach my teen years I’m going to struggle with who I am becoming as a woman. Part of this is normal for all teenagers, but there are special issues that are associated with disability. How I wish someone would author a book about this stuff so you both could read it! Unfortunately, there won’t be a book. Maybe in time I’ll write that book, or maybe someone will beat me to it.

Early on in life you are going to turn me on to books and I’ll devour them. I thank you now for this gift. Reading and learning will be one of my great joys. It will allow me to stand equal with anyone.

Oh, Something Is Happening

Mom and Dad, I’m going to thank you, now, for all the time you will give to me. Driving me when I can’t drive, reading to me when my eyes just can’t see straight, and staying with me when I freak out because the depth of things is hard for me to see. The times when you have held my hand and helped me navigate going down to rivers, and other hard-to-get-to places, will be appreciated. I’m going to thank you for trying to keep the family in “normal” mode and doing things that my siblings enjoy. They will need that.

Dec 6

Night Walk and Maira

I guess you could call today “Maira Eve,” and as I have been thinking about my life and events that have led to this very day, I thought I’d update the original posting. This post tells of how I came to understand that I needed to have a dog.

For the past four years I have referred to Maira as “Eyelette,” as all things living need a name. I’ve even had a tiny transitional object to pull out of a drawer or set upon a desktop when things seemed grim. Right now it just seems surreal. This REALLY is happening!!

It has been a long journey, and tomorrow at 0930 I will be at KNGF to begin my two-week intensive work of becoming a partner with Maira. What is in store for me? I don’t fully understand at this moment. I am packing my bag and will find out in the morning. So now for those who will walk with me and remember that night of several years past…

Night Walking

Late this last November, I found myself waiting for my husband; we were to meet at the shopping area. My iPhone went dead and I was scared. It was dark and windy, and I knew I’d have trouble walking anywhere alone. I almost left the stairs, where I was sitting in hopes that he’d look for me there, to go look for our car. I should have known that the car was there—where it always was. But fear kept me on the stairs. Had I left, I’d have found the car—and safety. I was to discover that I had been doing a dangerous dance on a rooftop with a skylight.

I finally decided to walk to get to the bus. I was scared. The thing about being half blind (or so I thought) is that bumps in the sidewalk aren’t your friends. Bumps can really hurt you. So I walked in the street, but then the streets here in Europe can be bumpy as well. The streets everywhere are bumpy. It just doesn’t pay to try to stay safe or sane when you can’t see the road. I was walking SCARED. In my mind I was dancing on a skylight and trying to calm myself and telling myself that I would be just fine. I was scared because about ten years ago some nut with night blindness hit me and I fractured my L1. I was scared for some good reasons. In feeling the fear, I realized that my vision was far worse than I had ever admitted to myself.

Normally, husband is my “Seeing Eye Hubby,” and I depend on him. But hubby was in some unknown place and I was scared. I was all alone, and there was no one to help guide me. I made it to the bus, which was a good ten minutes’ walk. Then I had to face the walk home, which in many ways was even more terrifying. You know you are severely low vision when you have a dark street with a dim light and you think that you know the road but don’t know where the bumps are. All at once I realized that I didn’t know the road at all. I had to make a decision: walk fast or walk slow? I just walked. All I wanted was a phone and a warm house. More than that, though: I didn’t want to fall on my face.

After what seemed like a horrible forever, I could see the house and then the car and the door. I crashed through the metaphorical skylight. The tears and mixed emotions exploded within a safe house. I was grateful that I had made it home. Jon, who was upset and concerned, came to me. At that moment I realized that I would never feel as safe as I once had before. That crash was just the first.

Life can be a terrifying dance routine with a choreographer gone mad. That is when you slam through the skylight. This is when your soul sinks and you discover that you are frail. Then, and only then, can you realize that you have been dancing on a rooftop with a skylight.

In the next days I began the search for the “doggie” school. After a week of looking, I knew that I needed to approach KNGF. I made the call. The darkness has served as a reminder that I am not safe. The naive woman who was dancing on a skylight is no more.

Today

Jon is downstairs cooking dinner and I am wondering what will unfold next. As I look back over the past few years, it has been quite a ride. The Loo Erf, the beginnings of a new private practice. It will be a new dawn in the morning. I can’t wait!!!!

A Sad Update

I am going to post this to my blog because it will reach more people faster.

On Monday, 23 June, I went off to the KNGF with high hopes. Maira is a great dog, but she will not be mine. On Thursday the 26th, I was admitted to the UMC-Utrecht neurology unit. The short story is that after all of the time I spent planning, I can’t have a dog.

I am totally bummed and depressed and feel like a piece of my world got yanked out of my life. It did. But, I will move on. For now, it is important that I accept and take the time to cry tears of sadness.

I am thankful for some great doctors. I am thankful that I am alive, and that with care, I can stay that way. I will say more later. For now I am just trying to enjoy my first complete day home from “the big house,” as Jon and I call it.

With much thanks for support,

Gail