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Home / Stories / Personal Histories / But It’s Not the Disability I Wanted

But It’s Not the Disability I Wanted

Written by Claire on Monday, October 16, 2006

I’m a 36-year-old woman with a college degree, happily married to an able-bodied man for 10 years and mother of able-bodied children. I work part-time in a professional field and have my own hobbies. I’m your typical soccer mom. But there has been a shadow over me my whole life, and I have never spoken of it until this moment. I have BIID.

My earliest memory of wanting to be physically disabled dates back to about age 5 or 6. At that stage in my life, as far as I know, I had never actually met anyone with a disability. I remember playing “house” and pretending that I was the mother and that I was “crippled”, walking with a severe limp. I had great fun pretending this. My father wondered what I was doing and when I told him about how I was a crippled mother and showed him how I walked, he laughed heartily at the crazy imaginations of the young. 30 years later, I remember this episode as the first indication of something that would haunt me the rest of my life, but it wasn’t until recently that I realized its significance . I wonder now, as this occurred before any of the incidents that I am about to relate, if I was just simply…born that way.

When I was 7 or 8 my family moved to another area where we were in close contact with relatives who had three children with disabilities. They were twin brothers with Cerebral Palsy and in wheelchairs, and a third girl with mental retardation. I was much thrown together with these kids and during frequent family gatherings I was the only able-bodied child of our foursome. I was an only child, materially spoiled by my well-to-do parents, and yet emotionally neglected as well, because they frequently traveled on business and left me for months at a time with relatives who were paid to take care of me . My parents weren’t cruel or abusive, just very busy, not terribly affectionate by nature, and blind to how their frequent absences affected me. I got along well with my disabled cousins. We played, I helped them, we had healthy sibling-type arguments, had a great time together most of the time, and I felt completely comfortable around them. They were the brothers and sister I never had. But there was a subtle undercurrent going on, something that I didn’t consciously feel or recognize until it was shoved in my face, and that was the resentment of the parents of the disabled children. I was able-bodied, but with my emotional needs not being met by my parents, with adults I often acted out and made demands, generally being an insufferable brat, probably to get attention. Small wonder that the parents of the disabled children who were mostly well behaved and rarely complained should resent me for complaining when I had a healthy body and all my faculties. As if that weren’t enough, my parents had money and the other families lived with worrying financial difficulties. What earthly right had I to complain about anything? When I was a little older I overheard them talking about how much they disliked me, what an awful kid I was, how much trouble I caused. I was deeply hurt and never was able to forget it. As an adult I talked about this with one of the mothers involved and she admits that while I was indeed insufferable at times, she was very sorry for resenting me and understands now what happened, and apologized for hurting me. She regretted that her attitude and that of the other parents had likely exacerbated my behavior, and she wished she had been more understanding at the time. My needs were very simple; I just needed attention. But my parents weren’t there for me, and those closest to me resented me for something I had no control over. And here is the kicker: while my needs weren’t being met, I saw how every need of the disabled child was met with the patience and love I so desperately craved .

I was a kid, and understood none of this at the time. I didn’t even realize what a brat I had been until later in life. It took decades to come to understand how those years had affected my life. I believe that these experiences are what allowed my “wannabeism” to root and take hold. What I now believe happened to me is that subconsciously I began to believe that in order to be loved adequately, you have to be disabled . And in order to love adequately, the object of your love has to be disabled . It’s ludicrous, but to this day something deep in my psyche still feels that. Knowing that it’s not true doesn’t make it go away.

Aside from being a brat I was not outwardly an odd child. I had normal friendships in school, good grades, healthy extracurricular activities and sports and was tested for inclusion in the class for high IQ children - a test I “failed” by one IQ point. Then, as now, you would never know that there was something disturbing brewing in my head.

In an early episode of “pretending”, I read a book about a blind boy, and for months afterward I always took my shower in the pitch dark (the bathroom had no window) and pretended to be blind where no one could see what I was doing. I was 8 years old. When I played with my friends I often wanted to be blind, or in a wheelchair. I invented games where we’d bind up our eyes and have to complete an obstacle course blindfolded. We didn’t have a wheelchair to play with so I had to make do with what was available to me. Blindness was the easiest to simulate – no equipment needed. I was very interested in sign language and taught myself the alphabet and numbers. I still know them all and have never had occasion to use them in my life, except for one year at summer camp when there was a group of deaf students and I hung around with them. It was very exciting to be with them and have them teach me sign language, and try to get around our communication difficulties.

Around this time of my life another cousin from a different branch of the family was involved in a hunting accident – accidentally shot in the back by another hunter who couldn’t see him. At age 17, he was paralyzed from the lower back down, a complete injury caused by a bullet. He was a favorite of mine. He was a few years older than me and before his accident had once accompanied my parents and me on a ski vacation. We got along great; he made me feel that I was a special favorite and the big brother I never had. You can imagine how much I loved him with my emotional needs not being met by my parents and the incidents with the parents of my disabled cousins. The first time I saw him after the accident was at a family get-together the summer after his injury. I was 9. I have only one memory of that day and it is of this young man surrounded by my other teenaged cousins. They were laughing and talking in the living room, and I was craving his attention. At one point he decided to transfer from his wheelchair to the couch. Someone brought him a transfer board and everyone hovered around him solicitously as he laboriously transferred. He was fresh out of rehab and it was the first time any of us had seen him like this, and he had yet to acquire the mobility skills of a person who has learned to adapt to his disability. At this moment I said the thing I was to most regret my whole life: “Look at the poor cripple!” in a taunting voice. There was a hushed shock as he and my older cousins stared at me in disbelief. He finally said quietly: “That’s not very nice, kiddo.” and turned away to resume his conversation the other teens. I was devastated. I looked back on that incident with regret for almost 20 years until at a family gathering he and I had drunk so much together that I eventually got maudlin and tearfully apologized. He forgave me, said he barely remembered it, and I was able to let it rest…mostly. What haunts me still is what would inspire me to be so cruel? I was not a cruel child by nature. When my younger disabled cousins were laughed or pointed at I was filled with righteous indignation and stuck up for them faithfully and vocally. The only explanation I can provide is that I wanted the attention of this special person so much, and that was all I could come up with to get it . He, of course, a young man of 17, surrounded by his cousins of like age, was probably much more interested in trying to fit in with them than he was in the little kid who followed him around like a puppy dog. Throughout my childhood I had a fascination with him and whenever we were in his company I only wanted to be around him and craved his attention more than that of anyone else. I always considered him one of my favorite people, because in spite of the incident at the family get-together, he continued to pay attention to me, and was kind to me, happy to see me, and treated me like a little sister. He treated me like I was special.

When I was 13 he moved in with us for a short period of time while relocating and searching for accessible accommodations. I was of course ecstatic to have him around so much. I didn’t realize it at the time, but I had a huge crush on him. He let me sit in his wheelchair and showed me how to do wheelies and go up and down a step. It was fun and exhilarating sitting in his chair, the object of his attention. I loved pretending to be disabled. I wonder what he thought of it ? At any rate, he clearly saw no harm in it…back then, nobody had any idea of the existence of wannabes and devotees, least of all me. And who in their right mind would suspect it in a 13-year-old girl? I read the teen magazines, and in one of them there was an article about masturbation. I was intrigued to find out that you could make yourself have an orgasm just by touching the right spot – of course, I hardly knew what an orgasm was, but it sounded pretty cool. One night I decided to try this. At first I had no specific person or fantasy in mind, I was just feeling the pleasure, but then as I continued, I began to think of my cousin, and repeated his name over and over in my mind as the waves of my first orgasm washed over me, and what I fantasized about during this experience wasn’t his handsome face or making love to him, but images of his wheelchair and his atrophied legs. I genuinely liked this special person for his personality and kindness, and was physically attracted to his handsome face, cocky grin and great arms, but it seems that the sexual aspect of my attraction for him thereafter was focused on his disability.

Somehow, by some strange circuitous route of my neural pathways, my early wannabeism had given birth to what is now going on 23 years of secret devoteeism. While most people apparently experience either one or the other, in me the two conditions are completely inseparable – two sides of the same coin . I wouldn’t know how to separate them.

Wannabes and Devotees…usually these terms refer to those with fixations on amputeeism but throughout my life I have had fixations on many different forms of disability – blindness, amputeeism, paraplegia and quadriplegia. But my main fixation since at least age 9 has always been paraplegia and the use of a wheelchair . I think that perhaps, if I was born with a predisposition for BIID, then it was when I saw my paraplegic cousin that I subconsciously said “YES, that’s it…that’s the one.” Paraplegia was the disability I had been looking for. It felt right for me. I don’t believe that he’s in any way responsible for this. I don’t know for sure, but the way I feel about it is that I was born with some kind of predisposition for this, and by some twist of fate I was born into a family where I would have close contact with the disabled, and it triggered these conditions in me. Just a strange coincidence.

Throughout my teenage years and into college I had recurring fantasies about being confined to a wheelchair, and was attracted to certain men who were in wheelchairs or had other disabilities. One day when I was about 16 I was at the gym and a very handsome guy in arm crutches approached me. He had atrophied legs but could stand and get around with the crutches. He smiled at me and said a few words – I don’t remember what – and I was so flustered I barely responded and left immediately. I probably hurt his feelings very badly, he probably thought I didn’t want a thing to do with him because of his disability, but the reality was that I was so strongly attracted to him, and so young and unused to these feelings of physical attraction, I didn’t know how to handle it and ran. Whenever I returned to the gym I always looked for him, hoping he’d be there, intending to smile and talk to him and make up for any hurt I had caused, but I never saw him again.

At night I’d go to bed and dream up elaborate fantasies in which I was disabled and went through life as a paraplegic, or fell in love with a paraplegic. I would sit in class and imagine that I was sitting in a wheelchair instead of a regular school desk. At any moment of the day I could be imagining in my head that I wasn’t who I really was but instead some invention of my imagination. This all took place quietly in my head. I never pretended to be disabled in public, although I did occasionally pretend in private. I thought about going to a mall in a wheelchair, pretending to be a paraplegic, but I knew about wheelchairs, and I wasn’t going to do it with an old hospital chair. If I did, everyone would know I was pretending . I needed a real chair, if I was going to do it at all. And what to do about those strong muscular legs I had, how to hide those? How to push the chair with that ease and grace that long-time wheelchair users acquire? I didn’t feel I could pull it off convincingly, and would be found out. But I thought about it, and dreamed.

Once I was at the mall and I saw a beautiful young paraplegic woman. My heart started pounding and my breath came quick – I wanted to be her! I followed her discreetly around the mall, drinking it all in, I loved how she gracefully pushed her chair, how atrophied her legs were, and how she interacted cheerfully with everyone around her. That’s what I wanted. It’s what I needed. I followed her out to the parking lot and behind another car I watched her transfer into a small pickup truck. The truck was higher off the ground than most vehicles and she had more difficulty transferring than my cousin in his car. At one point she dropped her leg and it flopped back down to the ground. She had some trouble picking it back up again. My heart about stopped at this graphic demonstration of paralysis. She drove away, leaving me with a strong sense of loss. I wanted to be just like her. Exactly like her. The strong healthy body I had, it wasn’t right. I needed a body like that. I needed to do things like that.

The transgendered talk about feeling they are trapped in the wrong body – I felt exactly the same way. I just felt wrong, like I just wasn’t supposed to have two strong healthy legs to walk on. The “real” me was paralyzed from a very low injury, and used a lightweight Quickie wheelchair, and was an overachiever despite her disability. I was just an ordinary girl, somewhat of an underachiever, but if I could be a paraplegic I could be extraordinary. I needed paraplegia in order to achieve what I was meant to accomplish in my life . Sometimes I felt like nothing as I did as an able-bodied person really mattered very much. It didn’t count, because it wasn’t really me.

An interesting side-note to this is that since early adolescence I have had hearing loss, and wear a hearing aid . But this was not at all the disability I wanted. I went through the periods of denial, anger and acceptance, and it never made me feel particularly special, or particularly loved, or particularly extraordinary. It’s not a disability, because I live an extremely normal life in spite of this. It doesn’t really change what I can do or can’t do. I live with it, I manage it, but I hate it, and I would rather do without it. I suppose that’s exactly how the paraplegic feels as well (and then some!), and why they have no sympathy whatsoever for BIID sufferers. After all, I tell myself, who in their right mind would have a deep desire to suffer from hearing loss? If there are any hearing loss wannabes out there, you’re insane. But I’m sorry for you anyway. I’m insane too. Let’s talk. Maybe we can help each other. Then again, I don’t know what I could possibly say that could help you .

In a college course I sat next to a student who used an electric wheelchair and had very little use of his hands. I actually maneuvered myself to sit next to him. I was strongly attracted to him and would have loved to go out with him, but we never had a long conversation outside of class, we never became friends and nothing came of it. I angered him one time by offering to help him with his book when he had trouble taking it out, and he said “I can do it myself” very coldly . I was quite hurt and was afraid to approach him again. I had sexual fantasies of him in bed, and I dreamed of being able to tell him how attracted I was to him, of telling him that I found his being in a wheelchair sexy, that I thought he was sexy. Again at this point I had never heard of wannabes or devotees. I didn’t understand at the time that my feelings were disordered ; I thought that what I was feeling was very special and would be flattering to him. There was a handsome, able-bodied French student in our school. All the girls – myself included – thought his French accent incredibly sexy. I considered my interest in the disabled student something of the same order, a natural, innocent attraction to someone based on a unique, exotic characteristic. It was the disability that first attracted me to these disabled men. While I realized that this was unusual, I regarded my feelings as not much different from someone who has a natural preference for blondes – it’s the thing that first attracts you, before you get to know them to find they are also funny, kind and intelligent. I simply believed that my experiences as a child had given me a unique perspective on the disabled, making it easier for me to overlook their disabilities and see the beauty and ability inside. That much is actually quite true. If only it stopped there. I must have realized even then that there was something really “wrong” with me, because I never did tell any of friends about my attraction. If it had been as normal as an attraction to blondes, I would have talked about it .

I fantasized a lot, and my dream lover was gorgeous from the waist up, extremely upbeat and persevering and an all-around great guy, sitting in a “hot-looking” sporty chair with thin atrophied legs. Aside from my first cousin who was unattainable, I never met him. I dated able-bodied men, and eventually fell in love and married one. I truly love him, and have no regrets on that score. But I still fantasize about what might have been. My ideal life would have been as a para, in love with another para!

When I had my first child, I had an epidural . At first, I never gave a thought to the epidural except as a relief to the intense pain I was going through, and getting the epidural was in itself painful. I was totally concentrated on the act of giving birth, with my husband beside me, holding my hand, shedding tears of joy when our first child was born, beautiful and healthy. I went through all those normal new-mother emotions as she was born, the first time I held her in my arms, put her to my breast. After a time they took her away to weigh her, clean her, and transfer me into a hospital room. As they transferred me to a gurney to take me to my room, I had no thought but for the baby they had just taken away. But when we got to my room and transferred me into my bed, I was suddenly thunderstruck by the realization that I was actually paralyzed from the waist down. I couldn’t feel anything, couldn’t move anything – my entire lower body was a dead weight. It felt wonderful. I never wanted it to end. I hoped with all my heart that it wouldn’t go away. But it did, and with the return of the sense of my lower body, I felt a deep disappointment. The mother of a beautiful new baby girl, and joyful about that, yes, but at the same time, bereft at the loss of a desire I was able to realize for such a short time, and then was taken from me .

If it weren’t for the Internet I probably never would have known that there are thousands of individuals out there who suffer the same conditions that I do. The Internet has opened up worlds of possibility for everyone. We all know that it’s been used for some very good and very evil purposes. I stayed home after the birth of my first child and found myself with a lot of time on my hands and a whole new online world to explore. My interest in people with disabilities led me an online chat for the disabled. Hearing loss was my “in” with this group. I never pretended or lied to them about not being disabled, I just told them I had hearing loss and family members who were disabled. That was enough for them. I felt at least some fulfillment from this. If I couldn’t be one of them, at least I could be accepted among them. I actually made some good friends in this group, friendships that (I believe) transcended any disordered feelings and were based on mutual compatibility and interesting conversation on all kinds of subjects. I could talk to these people about problems I had, and they understood in a way that my family and real-life friends didn’t . Or talk to them about problems in my marriage (of the kind that most marriages face at one time or another), which was safe because they didn’t actually know my husband.

I took their issues to heart and became quite militant about disability issues. I would complain to local restaurant owners about access problems and call the cops when I saw a car illegally parked in a handicapped parking space. This drove my husband crazy, as we had no one in our immediate family who had a disability (my numerous disabled cousins by this time lived thousands of miles away and he had never met them anyway), and he couldn’t understand why I had suddenly become so vociferous about it. And I couldn’t explain it to him.

Once, the chat conversation turned to devotees and wannabes. It was the first time I had ever heard of such a thing. My friends violently hated devotees and wannabes . The entire phenomenon was presented to me as evil and sick, deviants out to damage the disabled community in any way they could. If a wannabe or dev dared to declare his or herself in the chat room, they were immediately banned. I was a moderator and I banned them as readily as anyone else did. I remember feeling like I might have something in common with these “wannabes”, but didn’t really feel an instant connection. After all, I didn’t tape my ankle to my leg and hop around on crutches, or rent wheelchairs in shopping malls while on business trips, or still less stalk female amputees and post pictures online for deviants to masturbate to. People who did that were sickos; my interest in the disabled was healthy and caring and admiring. I wasn’t one of them. Couldn’t be .

But there was still a nagging intrigue, and eventually I checked out a devotee site that had been mentioned by one of the group members. It was a site devoted to photos of paraplegic women, and my reaction was immediate and almost overwhelming. There was a particular photo of the girl I wanted to be and I had a strong sexual reaction to it. She was beautiful, topless and wore sexy panties while showing off her atrophied legs in a striking pose that made them into a desirable sex object. It was almost exactly how I saw my “ideal self”. I was struck with an immediate need to masturbate while looking at the photo . Again I saw her atrophied legs and her wheelchair in my mind, and didn’t actually imagine myself kissing her or making love to her. When it was over I was shocked and alarmed over having had such a reaction to a woman. I had never before been aware of any homosexual feelings. Was I really a lesbian? Bisexual? I didn’t know how to answer that question, but there followed a bizarre period of my life when I became addicted to going to online devotee photo sites and masturbating to photos of disabled women. The more disabled she was, the most sexually aroused I got. Why women? I don’t know, really, I haven’t been able to come up with a definitive explanation for that. I don’t believe I really am a lesbian or even bisexual. I think that it is probably that I was simply attracted to disability regardless of form or gender, and there just weren’t as many devotee sites with photos of disabled men. And when I did find them, they didn’t seem as sexy as those of the women. There just seemed something about the vulnerability of a woman that enhanced her disability, and thus her attractiveness. Eventually I stopped this behavior, but I don’t have a clear memory of how or why I managed to get a hold of myself. It just faded away after a couple of years.

I have found during my life that symptoms of my BIID and devoteeism wax and wane . I believe that during that time, I was in the grip of a particularly strong bout and when it ended, so did the bizarre behavior. After that, though, there was little doubt in my mind that I was indeed a wannabe and devotee. I finally admitted it to myself, but I just wasn’t going to flaunt it. Or even mention it. To do so would be to lose the love and acceptance of a group of people who had come to be extremely important to me.

I became aware during this time of my life of a severe depression that I believed was post-partum, although it started halfway through the pregnancy. This lasted for more than a year, but I wasn’t able to talk about it with any of those around me: not my husband, or my parents or my real life friends. Only a couple of my closest friends in my disability chat group knew about it, one of whom was suffering from depression himself. Jacob was physically disabled but didn’t have any of the disabilities that I was attracted to: he wasn’t an amputee, or a wheelchair user, or sexy in any of the ways that I was sexually attracted to a disabled person. But I believed myself in love with him (but I wasn’t, not really). He was attractive because he was funny and intelligent and a genuinely good person. Because he didn’t fit into my idea of what was sexy about a disability, and I never felt turned on by his description of his disability, I’m doubtful that falling in love (or more accurately, believing myself in love) with this guy was actually a symptom of devoteeism. Rather, I was going through a difficult time in my life personally, living through a series of upheavals unrelated to any of my disorders , and feeling very out of love with, and unloved by my husband. It was easy to fall in love with someone who was a patient and kind listener and felt that I was important and my feelings were valid. I met him a few times in person, but I believed in marriage and keeping my vows and truly loved my husband deep down, and nothing happened.

I had another special friend, a girl with Spinal Muscular Atrophy. She was a lovely girl, but I never felt sexually attracted to her, either. I was envious of her as a wheelchair user, and liked to discuss disability issues with her. I met her once in real life too, when I happened to be in the area for a few days and her parents wanted to go on vacation for the weekend, so I offered to help her out with general caregiving. I didn’t feel the least bit sexually attracted to her, just matter-of-fact and doing what needed to be done. As I look back now, knowing what I know, I realize that could have been an awkward situation for both her and me. While I would not put myself in that situation again, I’m a little bit comforted to know that in spite of my disorders I am at heart a decent person . I did what needed to be done because there was a need, and not because of any predatory nature or sexual excitement derived because of it. It wasn’t as if I had to fight against a sexual attraction and managed to hold myself together and act decently; there just wasn’t an attraction to fight against. It just felt right and natural to help someone in need.

With regards to my devoteeism, I never actually felt a sexual attraction to anyone I met in that group (with the exception of Jacob, who I already explained.) I felt sexual attractions to photographs I saw on websites, and to some disabled people I saw in real life, but not to people I had met on the chat board. Perhaps it was just the nature of the medium. You can’t see anyone in a chat room. There are just words: thoughts, ideas, emotions. You get to know a person in a bizarre way on the Internet. You don’t know what they look like, or what their voice sounds like, but you get to know how they think and what’s important to them. These people were real to me, if disembodied. They were so much more than a disabled body. I don’t think it’s merely that I was reluctant to exploit anyone (although that’s true). It’s just that the attraction was never there.

However, my involvement with this group fed my wannabeism in a huge way, until I became quite desperate. I wanted to be one of them so badly it hurt. I began to fantasize almost constantly whenever I wasn’t online. If I were taking a walk I’d imagine that I was pushing a wheelchair. If we were at a party I’d imagine myself in a wheelchair at the party, and what I would be doing and how people would be treating me. Missing half the party, only half there, because I was busy reliving it all differently in my head.

When in the grip of a strong BIID attack, I live a double life . Whatever I am doing, I can see and feel myself doing it in a wheelchair, paralyzed, and as I’m going through the motions of what I’m doing, or saying whatever I’m saying, I feel the paraplegic me saying and doing them at exactly the same time. It’s like the Star Trek episodes where they go through the wormhole and get trapped in the "alternate universe" and meet the alternate "them", except I’m aware of both "me"’s most of the time. And sometimes the real me has to climb a staircase or chase after a runaway dog or go to the gym and the "other" me gets left behind, and then I feel like I’ve lost something, and I have to retreat into a dream to get it back.

I was obsessed with the chat group and was on it nearly every minute of the day and night. I could write a couple pages on how this negatively affected my marriage and my children. To this day I see problems with my kids that I can trace back to those days. I’m still trying to make up for it now. People become addicted to the Internet for different reasons; mine I believe was my BIIID and devoteeism. But a lot has been written on Internet addiction and how it affects families. I’m not going to go there, because it’s all been said before. I’ll just say it happened, it had long-term consequences, and I’m still dealing with guilt over it.

There was a lot of melodrama, strange goings on, and soap opera-like situations in the chat room. I think now we were all a bunch of chat addicts trying to live out life on keyboard and monitor, each with his own serious issues to deal with. With my depression, at one point I just couldn’t deal with it anymore and left the chat, for good. I kept up contact with my two special friends, and the melodrama continued, mainly due to my own depression and the fact that these two friends had their own issues to work out. The two of them fell in love, which left me in a painful position; watching one best friend fall in love with the man I thought I was in love with, and becoming an awkward 3rd person in the relationship. The depression continued a downward spiral until I was having constant thoughts of suicide, and my condition was a destructive drain on my friends’ own compromised emotional resources. I finally confided in my mother and she took me to get help. I didn’t tell the doctor about my wannabe and devotee feelings, just about my depression and suicidal thoughts. I was put on Paxil. Jake and Sophie felt that while I was recovering it would be better not to have contact with each other, for which I don’t blame them. We pretty much broke it off, and while I’ve talked to them a few times since then, I’ve never again become involved in a strictly online friendship, and I avoid chat like the plague.

6 months of Paxil did the trick for the depression. It went away and never came back. The wannabe/devotee feelings eased up a bit during this period of my life . I raised my children, got a fulfilling job, and was generally very happy. I was no longer chatting on the Internet and was involved in more healthy, “real life” activities . But whenever I saw someone in a wheelchair my pulse and breath would quicken and I’d feel a little weak in the knees. If I had to interact with them I had to force myself to “act normal”, which I’m sure resulted abnormal behavior, as if I was uncomfortable with them because of their disability – which was true, but not in the way that they thought. I still fantasized about being in a wheelchair, but usually only at night. When I turned out the lights and closed my eyes, I would imagine myself as a paraplegic in a wheelchair, pushing the wheels, adjusting my legs with my hands, transferring, interacting with people, and these thoughts helped me to relax so that I could go to sleep. I am still unable to fall asleep unless I think these “calming” thoughts . Sometimes these thoughts would evolve into elaborate fantasies in which I would invent an entire love story involving a paraplegic girl and her lover who may or may not be disabled. I might “follow” a particular story for months at a time. Once in an while I masturbated, but I couldn’t have an orgasm unless I imagined myself with a disabled woman, but usually I didn’t have to fantasize about anything when with my husband. The only time I did that is if he wanted to make love and I couldn’t get into it, for example if I was brooding on an argument with my son’s football coach, or unable to stop thinking about a good movie we just saw, and I needed a little “help” to concentrate on lovemaking and get in the mood. Then I would imagine myself as a paraplegic making love to him, or perhaps think of him as a paraplegic, and I would become aroused. But this was rare.

So today, I don’t pretend, I don’t have any contact with disabled people, I don’t visit devotee photo sites, I just live it all in my head . Fantasizing at night about being a paraplegic, and about being in love with one, and being loved by one. In the past few months, though, I have found that I can’t keep the fantasies at bay during the day. I imagine myself in a wheelchair as I’m going through my day, how I would be doing whatever I’m doing if I was in a chair, but also thinking about the paraplegic love story I follow in my head almost like a soap opera.

Finally the distractions got so bad I went online to find out more about wannabeism and discovered that there is another name for it. It’s Body Integrity Identity Disorder (BIID), and it’s increasingly accepted as a mental illness. It feels like a mental illness, because it’s illogical and compulsive. It was a strange thing to find out I was mentally ill. On the one hand, I finally had an answer to a question that had been haunting me for decades: What is wrong with me? I don’t really have a solid answer to why I’m like this, but now that I’ve found out I’m not alone, I understand it better. On the other hand, since there is no effective treatment for BIID, and it’s a condition that gets worse over time, it’s profoundly disturbing to think that I will likely never be rid of this and my desire will only become stronger. To deal with these feelings I started writing this story about how it started and how it progressed throughout my life. This was cathartic and therapeutic. The more I wrote, the more I understood myself, and my BIID feelings diminished to a manageable level for a few months .

During this interval, my beloved cousin who was a paraplegic died at a relatively young age from complications resulting from his paralysis . The last time I saw him he seemed to have aged considerably, and 20-odd years of pushing a manual chair had all but destroyed his shoulders and wrists . He was definitely aging faster than the rest of us. He had been in the hospital several times with pressure sores and staph infections. It was the first time I had understood the long-term consequences of paraplegia . Then he died, and I mourned the loss of a wonderful person in my life. One of those few people that we have in our lives who love us no matter what. He was the only person I might have talked to about my BIID, but not knowing whether he would hate me for it, and afraid to lose his love, I never said anything, and now it’s too late. I wish now I had trusted him. I think I could have, but then again, I would have hated to have caused him any pain or worry during the last weeks of his life. It is probably better that I never said anything.

My BIID feelings have flared up again within the past few weeks, and I thought to seek help with an online community. Since writing about it had helped before, I thought talking about it would help more. I found two groups for BIID sufferers, but for a couple weeks I was terrified about actually joining the groups and posting my first post. I was afraid to drop the first breadcrumbs that might eventually lead my loved ones to find out that I had BIID. It’s pretty easy to figure things out about people on the Internet, if they leave enough clues and you’re good with Google, and know what to look for . It was a dangerous business, walking out that front door. Finally I knew I had to take the risk, or I would go crazy . So I did, and it was like a dam breaking as the flood poured out. It was the first time in my entire life I had ever told anyone about my feelings. It doesn’t matter that it is all anonymous, finally, someone knows, someone understands. It doesn’t matter if they’re in Belgium or New Zealand and I don’t know their real names and I’ll never see them in my life. Those are real people on the other end and they know what I’m feeling . They’ve been there. They are there. I find that I want, I NEED to talk about this and get it out. I have started up several private conversations with other people who have BIID.

I’ve found out a few things from these people. The most astonishing thing I’ve learned is that I am one of the lucky ones. There are BIID sufferers out there who live in sheer torment, who actually have gone to the lengths of removing their own limbs, or tried to . Or they pretend regularly or even constantly in real life, something I’ve always wanted but never had the guts to do. I’ve never felt that desperate, but also, I’m a horrible liar and know it. I couldn’t imagine that anyone could be more of a wannabe than me, but there are many whose symptoms are much stronger than mine . This scares me a little, because I now know that BIID only gets worse with time, so is this where I’m headed?

These BIID communities talk a lot about how to obtain their desired result. Do-It-Yourself, or getting the medical community to accept amputations and such as a treatment for BIID. My initial reaction was one of hope and excitement. Perhaps it could happen someday for me! Maybe I could make it happen! That euphoria lasted maybe two days before reality set in.

First I had seen first hand my cousin deteriorate and die as a result of long-term paraplegia. At 36 I’ve been aware for three or four years now that I’m not getting any younger . Relatively mild health conditions have popped up, telling me that the clock is ticking. A close call with diabetes, a shoulder that refuses to heal after an injury, another shoulder that pains me for no reason I can think of, memory and concentration problems, loss of energy, problems sleeping. Nothing that is in itself serious but taken together, it means I’m getting older, and that I’m not aging particularly well. And I have very young kids in the house; I have to hang in there for decades yet. Not to mention hang on long enough to finally enjoy the retirement my husband and I dream of. I owe him that . Realizing my dream of paraplegia at my age would not turn out to be what I had hoped for, I know this. Painful locomotion or use of a power chair also don’t correspond with my body image of being a paraplegic. I see myself as a healthy, perhaps idealized, paraplegic. So should I someday get my dream and make it into that chair, I wonder if the dream would become a nightmare because I would STILL not be who I perceive myself to be. Instead of being an active para with a positive outlook, comfortable with who I am, I’d be a para in pain, having trouble getting around, not being able to do the activities I had so wanted to do as a para, and still longing for what might have been. If I’m going to long for what might have been all my life, I’m better off doing it as an able-bodied person and not putting my family through everything they’d have to go through adjusting emotionally and financially to having a para for a wife and mother. If it was going to happen, it would have had to have happened at age 18. It’s too late for me now.

Secondly I realized that the surgical cure of BIID very strictly goes against the teachings of my religion, which state that one should not amputate or mutilate a healthy body part. So for me, unless I get so mentally ill I have abandoned rational thought, it can never happen. I will not abandon my beliefs and principals for this . But I won’t judge others on what they do. While I believe in an objective truth, they may not share my beliefs, and while it may go against the natural law to amputate a healthy body part, they won’t incur sin because they don’t believe it to be sin. And if BIID is a mental illness, no sin is incurred by the mentally ill who have lost the power of free choice due to a compromised psychological state. So I won’t try to promote my religious beliefs, except in the case where I am specifically asked. But I also won’t, can’t, promote the idea that we should make the medical community accept surgery as a treatment option for BIID. What I can do is to promote awareness of the condition, understanding and acceptance by the disabled and able-bodied communities, and continue searching for an effective psychological treatment for this.

But as yet, only one treatment exists, and it’s not available, and even if it was, it’s not for me. Apparently I can look forward to a downward spiral: bouts of BIID increasing in frequency, duration, and intensity. So where do I go from here? I’m not looking forward to finding out.

Tags: BIID, Transabled, Stories, Transability, Wheelchairs, Paraplegia, Childhood

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