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Home / Stories / Personal Histories / Sean's Story / A quick recap of my life up to date…

A quick recap of my life up to date…

Written by Sean on Sunday, April 1, 2007

This entry was prompted by the fact that I wasn’t able to point someone directly to a bit of my history and background. There is a lot of information throughout the site, but nothing like a "reader’s digest" version. I hope this will serve, although I realise it is grossly incomplete.

First, I must point out that while this post is published on April’s fools day, it is not a gag!

I must also point out that some of my background and history is unusual enough (particularly when combined together) that it would too easily lead to me being identifiable. Where necessary I have ommitted details and/or changed them. It is unfortunate to have to hide in such a way, but it is part of having BIID in the early part of this millenium.

I had a relatively tumultuous childhood. We moved a lot, and travelled even more. My parents divorced when I was 6 or 7, which somewhat slowed down the moving houses, but didn’t slow travels.

My father drank too much. My mother was (is?) overbearing. The consequences of that are many, some of them significant, others, not as significant as I sometimes think they are.

By age 4 or so, I had my first transabled experience. We were living in Africa at the time. I don’t have many memories of that time, but I think that this one does represent the first memory I have, transabled or not.

I remember going on long drives and thinking about my legs being paralysed. It was a naïve conception of paralysis, born out of child’s ignorance of the condition, yet I was thinking about it already at the time.

African polio survivor

We lived in Africa a couple times over the years. Once when I was very young, and another when I was slightly older. I remember seeing many people with disabilities, mainly polio "victims". I remember their legs. I remember being curious and intrigued by these mishappen legs that obviously weren’t working. I don’t remember much else, it’s more a snapshot in time, a photo of sorts, than something more tangible.

Upon seeing someone walking with braces and crutches, someone told me not to stare. I might have been my dad, or my mum, I don’t recall. I do remember thinking that it was weird and unfair that I couldn’t stare, because I just wanted to see how they actually moved. Jumbled memory of a confusing event, this.

A leg in a cast,
what fun!

So, earliest transabled memory from around age 4. Regular thoughts of being paralysed (as innacurate an understanding of paralysis as I had) from about age 6 or 7. Haunting the local university library to research paralysis, wheelchair and braces from about age 10.

I started what is now known as recreational casting around the age of 13. I managed to find Plaster of Paris bandages at a local pharmacy and purchased those, applying the casts in secret in the basement of the appartment where we lived. Putting the casts on was easy enough, removing them was rather complicated. I tried realistic casts, and some not so realistic. I loved the feel of the cast, wrapping itself so closely around my limbs. I loved the heat of the drying cast. It was exciting, and at the same time scary, as I had to do it in secret. I guess part of me wished to be discovered, because it might have opened up the possibility of understanding this part of me better. But I wasn’t, and I didn’t, not until much later.

By the age of 15, 16, BIID was pretty much set.

Therapy session.

Around that age, my mother insisted I go see a therapist, though she didn’t know about my BIID. I didn’t talk about it with the therapist, but it was an introduction to therapy. Unfortunately, the asswipe raped me. It did not engender confidence in starting therapy again.

Throughout my growing up, I was mostly a loner. I was very different from other kids my age because of travel experiences and it didn’t help mingling with the crowds. I had different interest in music, in reading, and, I had my Big Secret.

I didn’t understand it. I thought I was sick and perverted. I was guilt and shame ridden. It’s hard to grow up and have these negative feelings about yourself.

Old clunker of a wheelchair.

In my mid teens, I rented my first wheelchair. An old clunker, which at the time was pretty much the only thing available. I remember having trouble finding money to pay the deposit, but somehow I managed. I also hid that in the basement of our appartment, and escaped every time I could to use it. It wasn’t difficult, my mother worked evenings a lot. I don’t recal very well what I felt when I first sat in that wheelchair. It wasn’t anywhere near the experience some other people have experienced, like Claire’s or Robin’s. I do remember a lot of anxiety and fear of being discovered. I had to hide in the basement, I didn’t have much space to move about, I didn’t really have anything to do. Yet, it was an important part of my growing up with BIID.

Around the age of 21, I came out to my parents. I told them about my feelings. They did not take it well, no surprise there. At the time, I didn’t know I wasn’t the only ‘freak’ with this condition. I just knew I needed to tell. In retrospect, had I accepted myself better, been more assertive then, perhaps their reaction would have been positive, or more positive.

My mother insisted I go see a therapist (ha! again). To placate her, more than anything, I did go see the therapist she suggested. We met once and talked about it. He admitted that he was totally out of his dept about this and ventured a few ideas. The one that I remember most was that the wheelchair was a symbol representing how stuck I felt with my life at the time. Ok, so it’s a nice idea, and it fit at the time. But if there’s a part of truth in that, it’s only a part. I felt betrayed by that therapist also, as he had told me he wouldn’t discuss our interview with my parents, other than reassuring them that I wasn’t psychotic or dangerous. As it turns out, my mum was privvy of things I had told only the therapist at the time.

A Miwaukee brace
similar to mine

Between my late teens and my mid-20’s, I purchased (and purged) several expensive braces. My first brace was a SOMI, followed by a custom molded TLSO, and a few others, including a Milwaukee brace (that one I didn’t purge, I sold when it stopped fitting!). I was a typical teenage boy, full of hormones, and my original interest in braces was a confused one where sexual interest played a big part. The sexual aspect of the interest quickly morphed when I started wearing the braces. I suddenly felt comfortable, safe, supported; it wasn’t about sex anymore. I’ll readily admit that part of the attraction to braces is still somewhat sexual, but that’s not actually directly related to BIID, it has more to do with bondage. I think there is much potential for confusion there. As much as I enjoyed the braces, I still felt dirty and guilt-ridden that I had those feelings, and so I went on a rampage a few times, and threw out those "toys". I thought perhaps I could repress my feelings by getting rid fo the stuff. But getting rid of the hardware did not get me rid of the feelings. It never does. I regret having thrown away several thousand dollars worth of braces, and even a wheelchair!

I continued to do recreational casting occasionaly, and I had acquired my very own wheelchair which I used at home and in towns and cities far away from where I lived. I worked in a trade that wouldn’t allow me to use a wheelchair. My first interactions with people, as a wheelchair user, were interesting. I was looking for interaction with people. I didn’t want to just push a wheelchair out and about: I wanted to talk to people and have them interact with me as a wheelchair user. Paying for a movie ticket wasn’t quite enough. That said, please don’t think that wheeling is about attention for me. It is about being able to be myself. And interacting with people as a wheelchair user allows me that. I once went into a wheelchair shop, thinking I could have a longer exchange there, went in, heart hammering, asked a question, got a response and went out nearly immediately. Between the act of using a wheelchair and the interactions I got, something must have been good about it because I continued to do it. To this day in fact, though now I am not working so hard at making things happen, I just go through my life from a seated perspective. I don’t look for the "adventure", my life has become it.

Around that time, I went on the internet for the first time, and that was a complete, total and utter revelation.

I started looking for information about legbraces, and wheelchairs. Somehow, I came across Sue, who was the very first person I knew to share my need for paralysis. To discover that I wasn’t the only one elicited a feeling of freedom, of lightness, and somehow of validation. I was a freak, ok, but I wasn’t the only freak!

I found more people like me, though the other "wannabes" I knew of mostly desired amputation(s). I found a community of amputees and devotees, and was able to speak about all these feelings freely. It was very therapeutic. It helped me accept the fact that I was transabled. It helped me shed guilt and shame.

I started a website, the precursor and ancestor of this one, in fact. I shared my thoughts, feelings, experiences as they related to BIID. A mate accused me of having "verbal diarhea", but I believe he still reads my posts faithfully to this day, nearly a dozen years later! Through the website, I was able to meet many others who felt like me. It was good to be able to talk about it all. It allowed me a greater understanding of myself, and of the condition. It also helped me to know I was able to help others.

Around that time, I attempted therapy, and this time I was firmly resolved to discuss and address BIID. That didn’t turn out too well either. Back to talking to amputees, devotees, other wannabes, and a handful of paraplegics. For some reason, I have gotten more benefit from talking to like-minded people than talking to health professionals.

At the time, while I desperatly wanted to become a paraplegic, I didn’t think I *should* be one, as I didn’t think it would solve my issues. I’ve come to view things somewhat differently now, as I’ll explain later on.

A personal crisis led me to go visit a paraplegic friend for a couple weeks, seeking haven from the world at large. Louise was the most understanding and accepting person I had met. We quickly formed a relationship and married. That is the time where I started using my wheelchair full-time in public, switched jobs and started working in the disability services field.

Those first months and years were particularly good for me. While I had extensive experience using a wheelchair, things just can’t be compared from part time use and full time use. Being known as a paraplegic somewhat takes away your ability to chose whether you use the chair or not. In effect, you don’t have a choice but to wheel. This lack of choice was very good for me. It is part of my need. I need to *need* a wheelchair. I need to not have a choice in the matter. And being known as a para did just that for me. It filled that need in a way.

In the past, I had gone to movies, restaurant, even flew as a wheelchair user, and those experiences were very good. When I used the chair then, I felt more comfortable within my own skin. I was better able to relate to people. I felt my self open, perhaps in the way of a chick cracking the egg shell, ready to come out.

Wheeling full time, well, that was stepping out of the shell and saying "Look out world, here I am, at long last!". I saw my self-confidence grow in leaps and bounds. I learned more and more about disabilities in general, and paraplegia in particular. I knew quite a bit already from reading books. My academic knowledge suddenly took shape and form and became alive. My view became three-dimmensional. I finally was home. Home within myself.

Seeing a para causes
intense feelings of longing.

But as good as this was, as good as this *is*, it wasn’t and isn’t perfect. I still longed to BE a paraplegic. I can’t transfer without thinking about the fact that I’m not a para. I can’t push the chair, open a door, step off the sidewalk, all that reminds me I’m not a para. And the more I wheel, the more these reminders hit me. But if I didn’t wheel, I’d be reminded just as much.

It used to be that I had to hide my wheelchair from people who knew me. I was leading a double life, escaping in a town far away to use my wheelchair. After starting to wheel full-time, I traded one double-life for another. I now had to hide my good legs. I was forced to lie to people in order to be able to be myself. And this lying caused pain. There are people to this day that I wish I could come clean with. But I can’t, as the truth is likely to hurt them more than having to lie is hurting me.

I became accepted and included in this disability community. I was welcome as a brother, in shared struggles and joy. I am saddened that this acceptance would likely have been withdrawn rather quickly by many, had they known the real reason for me using a wheelchair.

Back surgery

Still plagued with strong moments of despair at NOT being paraplegic though. Louise died a few years after we were married.

I changed jobs, but remained in that field, continued to live full time as a paraplegic.

My view of "surgery" as an option had changed. I still think that acquiring a spinal cord injury wouldn’t miraculously heal me. But I think that it would allow me to go forward, to finally be free of the constant obsession and need to be a para. I could finally *live* (with all the happiness and problems that may entail).

And so here I am, still living as a mostly full-time wheelchair user, though not in a disability related field. I am nearing my 40’s. I am in a relationship that is not particularly happy: my partner knows about my BIID and it turns out she isn’t able to cope as well as we thought she would with my wheelchair and the idea that I need to be paralysed, much less that I might become paraplegic one day.

I don’t know if I’ll ever see a surgical option offered to me. I don’t know if that is something that is going to happen for other transabled individuals. But I hope that my work and advocacy is helping towards getting us there.

Tags: Paraplegic, Paralysed, Transabled, BIID, Spinal+Cord+Injury, Wheelchair, Braces, Legbraces, Amputees, Devotees, Therapy, Cast

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