transabled.org

Hi Sylvie, I totally respect everyone’s choices about what they need to do or need not to do. Nobody should feel pressured into anything based on what people write here. Ultimately each one of us can only find the answers by digging down deep with some brutally honest soul searching, and probably some experimentation. I apologise if I’ve ever implied that somebody else should be doing what I do. I can only recount what does and doesn’t work for me. You have my full support for your own decisions.

As far as the practical matters go: I acquired my KAFOs from e-bay. Be very sure that you provide detailed measurements so that you get a good fit. I know people who have gone into this without enough preparation, and ended up with braces that don’t fit at all. Later, I got my GP on board and was able to go to an orthotist for even better customisation.

My first wheelchair was a super cheap one from an ad on this website. Then I got a prescription from my GP for a wheelchair and went to see a dealer for a customised fit. It helped that I could show up there already in a wheelchair.

Hi Sylvie,
I’ve written about me a few days ago. I don’t seek paralysis (the health implications totally scare me) or amputation, I just need to use a wheelchair.
I got mine in a thrift store. E-bay would be a good place too. There are a lot of websites to help you with measurements. Just don’t go with a clunker, it feels too temporary.
I even don’t have a doctor, so I can’t give you any suggestions there.
Feel free to ask me more about practical wheeling. I don’t use braces.

@Sylvie, I do apologise if the trend of discussion seems very much pointed towards surgery as the “only option”. That is not and never has been my thinking.

I do discuss surgery as an option a LOT, because that’s where *I* am at. In many ways, the mechanics of wheeling are so routine for me that it is difficult to figure out what to talk about. I think that for many people it’s a bit like that. I remember Chloe a year ago, she was wanting to hear more concrete things also, but now she’s wheeling a lot, and I think sees where I come from.

That said, you do ask good questions, and specific questions are easier to answer than trying to figure out what to talk about :) I’ll write a post soon trying to address those things :)

I forgot to add my two cents about pre-existing conditions. I was completely open with my GP about BIID. However, this was after years of seeing her, and an established high level of mutual trust. She didn’t hesitate to write a wheelchair prescription, and didn’t hesitate to use my actual medical history to justify it. The indications she wrote were fibromyalgia, back pain and leg weakness. Later on she added high blood pressure as another physical reason why I should use a wheelchair. By all means make use of whatever pre-existing conditions you might have if they facilitate the process.

“My ultimate goal in my BIID path is to get and use a wheelchair and / or braces.”

Sylvie, I don’t think BIID is to do with wheeling or wearing braces. I hate my braces that I’ve had to wear on and off for 30 years because I don’t physically need them. My ultimate goal is a paralysed leg. Maybe when it *is* paralysed I will like my brace better. In any case I’ll still have to wear it.

In my mind BIID is not about pretending it’s about being Transabled.

Peter, you’ve got it all wrong. A narrow-minded view of “what our condition is” will limit the definition … for example, your phrase “physically need”. Why should “non-physical need” be excluded? An inclusive view of “what our condition is” will tolerate variation under a general umbrella definition. I believe for most of us, the problem is not a need, per se, to alter the functionality of our nervous system or to become free of a limb that does not belong. These alterations are the treatments, not the need itself. The problem is actually a need to alter something about our body and/or the use of it, and/or other people’s perception of us, in order to more closely match or align our current and future life experience with our self-image. Self-image necessarily includes both body and mind. I purposely include “body image” (as in BIID) within the larger “self-image”.

I’m shocked that you insult Sylvie by mentioning pretending. You de-validate her condition, and it’s wrong to do that.

I’m also sorry Sylvie that you feel that other forms of BIID aren’t being represented here. Everyone is welcome to blog about their feelings and journey in relation to BIID here regardless of what form it comes in. This has mostly been a place where people talk about the emotional/mental strain of BIID regardless of what form their BIID comes in, talk of buying their first wheelchair/using braces etc crop up every now and then because that contributes to emotional/mental therapy…I’m probably not making much sense at this point, I’ve lost myself in termps of what I’m trying to say :/

Know that if you want some in depth advice about buying a wheelchair, getting braces and logistical issues (including the ones you’ve brought up) your welcome to come ask in my forums. We already have a lot of posts already there for first time wheelers and there are a few people there who enjoy crutches.

Hi Sylvie. Your situation sounds quite similar to mine. I’ll re-cap a bit of my story in the hope that it will help you, I know that it helps me to know there are others on this site who need to use a wheelchair but not have complete paraplegia.

I have known / felt since I was about 7 or 8 that I was supposed to be a wheelchair user. I got involved as a volunteer in a charity for people with recent spinal cord injuries, thinking naively that being around people who had what I needed would help, or would scare me off.

In reality neither of those things happened. I learned a lot about myself and realised that I see myself as a wheelchair user but not as a complete paraplegic. I need to be seen and recognised as a wheelchair user by my friends and others that I come into contact with. I feel strongly that being able bodied isn’t what I should be. I need to be able to do a standing transfer, maybe take a few steps, but to need a wheelchair to go anywhere at all (even roon to room in my house). I’m trained as a physiotherapist and I still don’t know what impairment I’m describing there! The closest I can think of is spina biffida and seeing as that’s congenital it’s a bit laate for me. Maybe I’m describing an incomplete spinal injury, but it’s so specific that no engineered accident or even surgery is likely to produce that result.

Practically, I currently own a wheelchair which I obtained through e-bay. It’s perfectly possible to measure yourself and get a pretty accurate fit with no specialist equipment, see Sophie’s website for some very good instructions.

Although I own a wheelchair and my husband knows of my feelings (though doesn’t understand them at all) I’ve never wheeled outside the house in front of anyone I know. The idea of it scares the life out of me. I don’t want to lie to them all and I don’t have a genuine reason to wheel.

I do have genuine knee problems, which all my friends know about, and do limit me from doing certain things, but I don’t think I’ll ever have the nerve to use them as an excuse for using my chair.

Am I mad to hope that one day I get pregnant and develop the kind of SPD that requires use of a wheelchair and goes on long enough after the birth that I can stretch it into using a wheelchair forever? It’s not quite what I want but it’d get me part way without lying very much.

Sylvie, if you want to e-mail me you can ask Sean for my address and I’d be happy to discuss this with you more.

@ Beth: Why do you think wheeling outside scares you so much? Why do you think you have to lie? Simply saying that you need to use a wheelchair sometimes should be sufficient for most people. If they want to know more, a reply that it is personal, will do the trick. You don’t have to lie. Morally speaking, people don’t have a right for that kind of information. And since your friends know about your bad knees, they might just make their own conclusion without much asking. It’s hard to tell your real friends the truth but in my experience the outcome is better than the fear. All of my friends were very kind about my truth. Only my husband has a really hard time with it.
On a lighter note, my BIID has a very similar manifestation to yours, I simply walk to get my wheelchair from the car’s trunk. Nobody ever asked me about it. Whenever the old guilt creeps in, I just repeat Chloe’s mantra: “I don’t use my wheelchair to treat paraplegia, I use it to treat my BIID.” I think once we accept BIID as a genuine condition that needs treatment, we feel free to use whatever means it takes, in my case a wheelchair.

@Elisabeth. I think that I have a hard time accepting BIID as a real condition. I keep telling myself that if I ignore it then it’ll go away, even though that hasn’t worked in nearly 20 years.

I think part of the problem is that I don’t really ‘want’ to use a wheelchair. It’s really complicated because when I’m wheeling is when I’m being the real me, it’s when I’m happiest but it’s also difficult and if I did it when I went places with other people (Particually my husband) then it would be difficult/inconvenient for him. I can manage difficulty for myself but I can’t put him through it. I know that doesn’t really make sense but there we go.

I’ve also found myself in a difficult position because I decided to confide in a close friend about my BIID and I told her the full truth. She took it very badly and basically said that I had a demon telling me lies and that we had to get rid of it. She is still a good friend but she has made it clear that if I ever start using my wheelchair in public for BIID then she will tell everyone. In reality I don’t think she’d tell everyone but it’s entirely possible that she’d tell enough people who matter to me.

Most people probably would be satisfied with ‘knee issues’ or ‘it’s personal’ but not if they have someone else telling them something different about me.

I know that in theory other people’s opinions shouldn’t matter but they do matter to me. I can’t bring myself to risk a large number of my friendships over this. Perhaps they are not real friends if this would be the end of the friendship but they are still the only ones I’ve got.

Maybe one day I’ll get the confidence to become the real me. I can’t really see that happening unless it happened at the same time as a move to a new town though really. (yes I know there would be crossover of old friends and new but it would be less immediate). Maybe one day I’ll develop a genuine physial reason for using a wheelchair and the BIID won’t be the biggest reason anymore. I can’t count on that though.

@Elisabeth, I’m really inspired by your courage and I’ll be here following your progress and hoping/planning to one day follow in your footsteps (tyre treads?)

Dear Beth,

you wrote: “She is still a good friend but she has made it clear that if I ever start using my wheelchair in public for BIID then she will tell everyone.”

In my eyes, it is not possible to be a good friend and at the same time threat you with telling your secrets to others. Maybe this is not really a friendship.

To me it makes a lot of sense that you don’t want to make your husband co-disabled. But it might be a sign that you tend to take others’ needs and wants more serious than your own.

One needs the whole life to become oneself. Don’t push yourself too hard, but at the same time don’t let yourself be dominated by others.

Sylvie and Elizabeth, I’m very much with you in the kind of BIID I’ve got, and I agree with those who think Peter’s got it wrong about us. Our mind says we our legs should not be fully able to carry us unaided. That’s BIID. Beyond that, the conviction that we need them amputated, or cut off from communication with the brain, whatever, that’s a variation.

It’s interesting that I have always seen “my BIID” as the pure need that I have two thigh stumps, a certain form of my body, and that the wheelchair and all that are more or less inconvenient, but necessary auxiliary means I would just need because of my body form.

But what I consciously think might all be “rationalisation”, and the “real” reasons are lying much deeper in the subconscious.

You who need “only” weak legs could be very interesting for research! Maybe you have a “milder” form of BIID? At least it gives a better picture. Have you already taken part in research projects?

@ Phil: It seems that there are different degrees or levels of BIID. On one side of the spectrum the body image itself (a para, an amputee etc) is essential and devices as wheelchair and crutches are accidental. On the other side of the spectrum are those whose body image is tied to the devices, thus for example a body image of a wheelchair user and of a person with disability and thus the body image itself is not very concrete. And then there is anywhere in between those two. That’s my theory, not sure how correct or if those of us who just have a need to be wheelchair users are not just plain pretenders. But I would still call it BIID as there is mental suffering connected with it.
@ Beth. Thank you very much for your frankness. I will write more later.

It is not always obvious how much of BIID relates to body image itself and how much relates to assistive devices. I would never have figured it out for myself just by thinking about it. I used to think that my primary need was for leg braces. It was only after practical experience in a wheelchair that I understood that my primary need was for paralysis, and that the assistive devices were incidental.

Brice, I’ve searched but I cannot find a description of you. What sort of BIID do you have?

I don’t think it’s a question of anyone being “right” or “wrong”. BIID expresses itself at different places on the spectrum. It might be that someone really needs to be a para, but for whatever reason will be satisfied with using a chair. It might be that someone needs to be an amputee, but hasn’t processed to the point of realising that’s what they really need. Things change with experience.

I created this site to offer something for everyone. Sylvie’s post I thought was important. In fact, I invited her to write it after she made a comment to me. It’s entirely too easy for me to get so “engrossed” in my issues, with where I’m at in the process, that I sometimes forget that I haven’t always been here. Ten years ago, I was convinced surgery wasn’t the option for me and I’d be happy just to wheel. We all evolve.

Please folks, play nice. Disagreeing is one thing, but keep the tone civil, and the personal attacks out, ok?

@Phil. I certainly do take other people’s needs and wants to be more important than my own. I know that in a friendship situation that is a bad thing and I am trying to get out of that habit.

In a marriage it’s very important that I consider my husband’s needs as equal or higher than mine. He does the same for me, even with BIID.

I think part of it for me is the permenance of the decision. I don’t want to use a wheelchair for a few weeks then go back to walking, I think that would be worse for me than never wheeling at all. But it’s a big decision to make and it doesn’t affect only me. There is my husband to consider and in the future my children will be affected by whatever decision I make.

@Beth:

It’s my experience that I can only then really be open and loving towards others when I am accepting and loving to myself.

Decisions about your life and your body are your decisions. They may affect your loved ones, and it certainly is right to consider this, but if you sacrifice too much of yourself, you will suffer and they will suffer, too, maybe less visibly.

Wheeling is a lot of fun for me, but often I am happy to stand up and walk afterwards again. In the end, the legs are there, and they want to move, like all of my body has this need to move.

After a while, the desire to wheel becomes bigger again.

So why not change from wheeling to walking and back? Because it is difficult to explain why I can jump and walk and run and dance one day and use a wheelchair the other day.

And using the wheelchair means sitting a lot, and while sitting the energy flow into my legs seems to be limited and my hip becomes a bit stiff and all that might make BIID worse. Plus the wheelchair constantly reminds me of BIID, whereas when walking I can forget about it at least for some minutes.

This has been discussed under the “slippery slope” metaphor before, but I think everybody has to find her/his own way, like always.

@Beth: It sounds as if your friend has some serious psychological problems that will probably require professional assistance. I know there is a great instinct to help one’s friends. However, one can be more effective in this if one looks after one’s own needs first. It’s like what they say about oxygen masks in airplanes. Put on your own oxygen mask first, before helping others with theirs.

Take care of yourself, Beth.

~ Chloe

@Phil and Chloe

I understand what you’re both saying. I need to put myself first.

I’m trying to make a really hard decision and at the moment I’m finding that delaying is the best thing to do. I think that at some point in the next few years I will start to use my wheelchair in public and in the presence of my husband and others but for now I don’t feel that waiting is damaging me. Of course it’s hard but my husband is going through a hard time and he needs me. He knows about my BIID and doesn’t really understand but he has enough of his own to cope with at the moment that I can’t make him deal with this too.

I know I could very easily fall into a trap of allowing there to always be some reason or excuse. When my BIID feelings are strong enough that I have to do something more than daytrips away from my hometown then I’ll do it. Until then I’ll cope in my own way, save my shoulders and help my husband through his difficulties.

I’ll admit that I’m very disapointed by my friend’s reaction to me telling her. She has her reasons for feeling the way she does but it still doesn’t excuse blackmail.

@ Beth:

Take your time. Don’t feel wrong when you don’t wheel. It’s you who decideds.

I don’t wheel because it is good for me now. I don’t know what I will do tomorrow or in a week.

Wheeling is good, but my legs are still there and I feel them. So I prefer to use them – at least for the moment.

Just follow your heart.

@Beth: None of us here intends to pressure you into wheeling. Only you can make these decisions, taking everything into account. We are here to care about you, and support whatever you need to do.

Phil said: \”the wheelchair .. reminds me of BIID, whereas when walking I can forget about it .. some\”

For me it\’s the opposite … wheeling *frees* me from being occupied by BIID feelings.

@Peter and others who may be relatively new here, I came across this description of my BIID I wrote for the Wheelchair Zone a few weeks ago.

I’ve been BIID as long as I can recall with the need for a completely paralyzed right leg, with the left foot and calf paralyzed along with the muscle along the inside of the thigh that extends the lower leg — but no loss of feeling or bowel/bladder control. It’s strange, I never came across the Australian author Alan Marshall (I Can Jump Puddles, etc.) until my mid-teens but from what I can tell in his writings his impairment just about exactly matched what I need.

By the time I discovered via the ‘net in the mid-90s that I am not the only one, I was living alone and already using crutches around the house every day. I ordered a right kafo and left afo from Bob and discovered that using them produces something of the desired effect, especially the kafo. Use of crutches was the basic thing though, the braces have always been secondary. I also discovered a couple of other post-polio BIID guys at a reasonable distance who hosted me in several outings in the late 90s on into the early 2000′s that allowed me to go crip full time and in public for three or four days at a time. Now unfortunately my shoulders are beginning to go bad and I can’t sustain much crutching any more. I do have a little Quickie chair that I use around the house but other than that it’s walk, walk, walk.

Once I found there were others who share this strange disability I began to write around just about every fantasy, dream, etc. I ever had, the fruit was a kind of novel, “Buddies”, which you can find at http://sgstories.com/fiction/authorbrice.htm along with a couple of short stories. The protagonists are amps because it’s an amputee fiction site but Scott Phiiips who shows up in chapter 6 of “Buddies” is more like the real me (as distinguished from the everyday me who is obliged to pretend to have working legs).

Wow Brice. That’s me but the other way round, left completely paralysed. Like you I started with crutches, then contacted Bob and just last year discovered the fun of wheeling.

Peter, not really new, I think I was the sixth person to write Thoughts here.

Anyway thanks for the introduction. I feel more comfortable talking to people who identify themselves in some way.

Hi Sylvie
I came across this site by chance. I’m replying because you mention polio and that was the cause of my disability. I was born in 1983 and caught polio when I was six. This may sound a bit odd because everyone thinks that no-one catches polio any more. That was probably why I was never immunised. I caught polio by sharing a bottle of Coke with my friend and her sister, who had just had a polio booster. It turns out that the vaccine stays in the body for a couple of weeks after vaccination and is in the saliva, and that’s how the vaccine got on to the Coke bottle and into me and gave me polio. It left me with paralysis in my legs, hips and lower back and by the time I’d finished growing I had one leg shorter than the other and deformities in my feet and ankles.
I wear callipers on both legs and orthopaedic boots, with a seven inch raise on one. I can’t walk, but I can get around on crutches and I use a wheelchair some of the time. Most of the time I get on OK, but occasionally I have a bad day because I can remember being able bodied. I would give anything not to have had polio and to have normal legs, so I thought it was weird that someone who’s not had polio would want to wear callipers.
It is physically very demanding using crutches and callipers, and awkward to use a wheelchair because of the difference in the length of my legs. I wish I could lend you a pair of callipers so you could see for yourself how difficult it is, but mine would never fit you. Please don’t think that I find what you want offensive. I don’t, but I am very curious. It seems sort of cheating to want callipers without the actual disability. I don’t know what you think you will get out of wearing callipers or using a wheelchair and I’d like to know.

Philippa, thanks for responding. If you take a little time to browse through this site, you’ll read different perspectives on how people arrived here.

This has been a long road for me, which I’ll not detail here.

I want to respond directly to your comment about how it seems like cheating to want the braces but not the disability.

I do want the disability. However, the whole situation regarding surgery (again, browse through the site) boils down to this for me:
Firstly, I don’t have enough money for the surgery and likely never will.
Secondly, I have worn calipers although they were not mine and I wore them briefly. I realized that while for you they allow mobility, for me, they greatly limit my mobility.

I don’t understand why a chair would be hard for you. Surely you can adjust the foot rests to accommodate your shorter leg. However, accessibility is a common issue and one occasionally discussed here.

I hope you will stay awhile and become more acquainted with the intricacies of BIID.

Thank you, Philippa. I truly appreciate that you would share your experience and feelings with us. We (with BIID) can’t really explain why we feel the way we do. We just know that it is so, whether we like it or not. Many of us would be more than willing to give you our good legs in exchange for yours, if only it were possible.

~ Chloe

LLD explained. With such a discrepancy (7 inches) there is a huge different AK so the knee is well before the edge of the seat which means you either have your leg sticking out straight or you have move to the edge of the seat, or get a short seat and have the knee of the longer leg protruding way over the edge.

In general people with such LLDs find it hard sitting anywhere, let alone in a wheelchair.

One solution I’ve seen several times is to put the little leg on your lap.

Peter – thanks for saving me having to explain, but your last suggestion isn’t comfortable for me (maybe for some people).
Chloe – don’t take this the wrong way, but you are so missing the point. I want MY legs to work. Even if it was possible I wouldn’t want your legs (or spinal cord, which is more relevant).
Sylvie – I hope you won’t take any of this as criticism. I’ve looked at more of this site since I first wrote. Never heard of BIID before, totally don’t understand it. Probably the weirdest thing I’ve ever heard. I discovered devs a few years ago and thought they were weird. I’m wondering if the two are related?? Did you get some form of satisfaction from wearing callipers (even if briefly)? If you had your own would you take them off when you’d had enough? Carry on with your normal life until you wanted to wear them again? Have you ever really thought about people who HAVE to wear them and the reality of being disabled for the rest of your life? Apart from the visible signs of polio, do you know about the stuff that isn’t visible? Because that’s the biggest part of it.
Sylvie – this is for you only, but if you can get the site owner to give you my e-mail address I’ll be happy to e-mail privately as long as you promise not to give my e-mail to ANYONE else.

Phillipa. I’m not a dev. At first I thought I was but soon discovered that in fact there was absolutely nothing sexual in my desires. however I do not consider devs “weird”. To me they are just like anyone else who has preferences. Like a guy who might fancy girls who are a particular shape or have long hair or wear glasses etc. Devs just prefer people who wheel, limp or have part of a limb missing.

I know several disabled people who appreciate devs, as otherwise no-one would give them a second look. Also, devs usually have a very good undestanding of a disabled persons needs and limitations and are generally very considerate and understanding.