transabled.org

Oh man. You mean there’s never a minute in your day when you’re just in the chair and that’s all there is to it?

Oh man. That must be exhausting.

Yeah, that’s pretty much what I mean. Ohh, I guess there are moments where I’m not overwhelmed by thinking how different it would be. And it doesn’t hurt as bad when I *am* wheeling. But by and large, it’s relentless.

And yes, it’s exhausting. I wrote a bit about it here http://transabled.org/thoughts/living-life-is-exhausting.htm though that post also focuses on depression.

Kind of makes me think twice about getting a chair. It seems like a chair is buying a precious few moths or years in some cases of freedom. After that though things go back to normal, and then to getting progressively more intrusive. I don’t think it will stop me from buying one, but it makes me think.

Well rorsach, the thing is, without having the chair, it would be unbearable. With the chair, I can at least survive through my days.

The thing is, everyone’s journey is different. It’s not because *I* am having it harder as I grow older, as time goes by, that you necessarily will. Although I must admit, anecdotal evidence seems to indicate that it gets indeed worse with time.

Nothing can be repressed forever. Eventually it must be dealt with.

Moving forward isn’t always easy, but it’s always beneficial in the long run.

Marie, yes, you’re right. But… Tell me… Just *what* is the way forward? The only way out of this miasma, for me, is to be a para. There are no real ways to accomplish that.

It’s part of what makes it even more frustrating. As a transsexual, you would know there is a way out, even if it takes patience and mucho $$. As a transabled individual, there isn’t.

*shrug*

Yeah, that is a tough rub. One place where the similarities diverge, unfortunately.

I’m very much aware of the overwhelmingness of the transabled condition, as the thoughts of it inflict themselves on our every action. Every single thing that I do, from the time I wake up, until the time I go to bed – and even the way I sleep – would be different if I were to have my body adjusted to the condition with which I would be comfortable. As such, it becomes impossible to put it out of my mind. I’ve heard others suggest that the ‘obsession’ with the condition should be treated with OCD treatments, which strikes me as a clear demonstration of complete lack of understanding of the condition we face.

I draw comparison to the inverse of my condition: If it would be considered unreasonable for one who has lost her arms to just go on as though the condition didn’t affect her, then why is it seen as reasonable to expect me to go on with my own arms present as if it were something that I could just ignore? Truth be told, I’d be more than happy to donate my own arms to someone who needs or wants them. They can transplant a kidney, at great risk to both donor and recipient; yet they can’t (and won’t even consider as reasonable to) transplant a limb from one who neither wants nor needs it, to someone else who does. Why?

I really feel for you- I know how exhausting BIID can be, but I myself seem to have these very intense spots on a more on/ off basis. The underlying need is always there, but the intensity varies from month to month. Sometimes it pushes all other thoughts from my mind- but at other times I get through the day and just sink into the BIID world inside my head as bedtime approaches and my time is my own. Maybe it helps having kids in this respect- they are the ultimate distraction (as well as the ultimate cage to prevent me doing what I’d like to do to myself…)!

Thats really sad. it ocupies everything i think about to. i have ocd too so that maybe adds to the obbsession when you see somoene in a wheelchair rolign past i wonder wot they are thinking .
am i jelouse?
it makes no sence in logic.
but makes sence to me

“•It invades my dreams, and my nightmares.”

Mmmm…. I don’t remember a night since very long time that I hadn’t had at least one dream a night about me being paraplegic, the accident that maks me paralyzed (so many different accidents and some self-inflicted), the rehab, moving from my appartment on the 4th floor (56 steps, no elevator) and making the new house wheelchair-friendly, going out with my friends in the wheelchair, transfering… and so many other dreams but it dosn’t end there I wake up and I start thinking about it, I try to immitate getting up as a para, trying to not feel my legs, trying to not use my abs… All day long thinking about it, verything I do makes me think about it, it’s exhausting! I fall asleep wishing that the next day I finally might have the accident I so long for, the accident that will leave me paralyzed from T-7/8 down (I’d much prefer T-12/L-1 but I don’t mind it as high as up to T-7). I don’t want the surgery, it’ll be my last resort if I will have no accident in the near future and before longing will drive me crazy. I often think of making myself fall the stairs backwards or jumping to the road when there’s a car or jumping from a cliff, but I am afraid, I am afraid to die, I don’t want to die, neither I want to be quadroplegic (which might happen with such accidents), I want to live – as a paraplegic. I often watch documentaries of the stories of paraplegic people, the story or their accidnt and rehabilitation. Today I found a video of a woman who fell down 8 stairs and broke her T-12 vertebrae… Why can’t that happen to me!? My whole appartment building is build of 8 stairs and that is the level of injury which I want but it just doesn’t happen!
I am 18 years old, and nobody knows about my BIID. I can’t tell my mother – she’ll admit me to a mental institution, I can’t tell my friends – they won’t understand.
I struggle, alone, I feel my insides burning when I see a paraplegic, I – envy. It’s such a huge burden to bear. There is no one who can tell me that I better live feeling that way and be AB rather than being finally free of that suffering achieving the disability I so long for…
Maybe tomorrow…

Hey Victoria,

I’m 43 and have BIID, too. Not paraplegic but double above amputee BIID.

You are desperate. But look, I am more than double as old as you and still am living – with BIID and both my legs.

You have so much time before you. Please be patient.

What you write about your mother and your friends sounds as if they were not really your friends. Where are you living? With 18, you could go to a therapist alone in most European countries.

Try to build you a life, regardless of BIID. Try to find real friends whom you could confide your deepest secret. Go and see a therapist, maybe he/she won’t be able to help you with BIID itself, but they will be able to help you to deal with its side effects.

There IS some help. You might also meet other people with BIID. This has done me very good and still does me very good.

If you want, we can talk on the phone or via skype or so. Just drop me a note.

You need a lot of energy when you have BIID, and the best is to look for sources of energy, like there are a meaningful work, really good friends, a friendly and open atmosphere, etc.

I wish you the best. We all can understand you so well!

Sorry, in the first sentence it should read: double above KNEE amputee…

I live in Israel. BIID here is even a less welcomed thing if at all known about.
I have a Psychologist and I can’t tell her my true feelings because I also have a psychiatrist and she will be informed and then I’ll be back on meds which made me sick and again be vewed as a threat to myself. I can’t do it, it took me almost 8 months to convince my therapists and my mother and my friends that I am not suicidal or self-harming or mental as they believed I am.
My mother hospitalized me when I was 17 because I was desperate enough to draw attention to me. I was diagnosed as psychotic…
I’ve been in that place for 4 months and they made it all worse, I felt horrible, I’ve been vewed as a sick person, who needs help, desabled… Teachers at school pushed me to the edge but I decided to fight back, my honour and dignity still were inside somewhere, I finally convinced them in a different theory than telling them about BIID (since it’s not in the DSM-IV, they might not even have heard about it).
Now just so you understand how BIID is vewed here: If you search the web for BIID in hebrew, you just won’t find anything, no explanations, no information, nothing. What I did find were 2 articals: The first was published in the “Less Interesting News” section of some site and it begins with “it could be a start to an interesting story but…”
The artical explains briefly about the disorder in some negativity… (The page has been deleted).
The second one (I can’t find it at all now…) is about an Australian man who used dry ice on his leg to make doctors amputate it. The title is “Hated His Leg and Chopped it off”. It is stated in the artical that he claims to have BIID but they can’t really use that as a genuine disorder since it’s not in the DSM-IV (…)
Now if I tell my friend about how I feel, she would probably want to know more about BIID and after saying that it’s mental she’ll advice me to seek help… Just no use for it.
I want to meet people with BIID especially a support group like for the gay but it’s dangerous to talk like that, telling that you want something that “isn’t normal” so my chances are little, I can only have the internet remembering to delete all info, history, forms, and anything there is every time…
I am only 18 years old but I have quiet a story and if you are interested in hearing it add me on Skype – b1na2y

@Phil: By the way I read it as “double above KNEE amputee”, I didn’t notice the word “knee” is not there =D

@Victoria, it is certainly a lonely existence to have BIID and be unable to talk about it to your friends. Unfortunately, I don’t know of any support groups that meet in “real life” for BIID. There are a few Yahoo! groups, and of course there is here.

I know it is hard, but hang in there! You’re not alone.

@Sean: I recently saw the movie “Quid Pro Quo” and there was a group so I assumed that there are underground groups like that.
I am now going to the bank and always when I go out (actually also when I am at home) I think, I wish that maybe now I’ll have an accident, the accident that will relieve me finally of my suffering.
I then come home (or the day ends) and I face it telling myself – “what were you hoping for silly girl, things like that happen when you are not waiting for them to happen, when you don’t expect anything to happen, when you don’t think about it! Those things happen to the people that believe it will never happen to them…”
Maybe now… Maybe later… And maybe NEVER!

There ARE groups who meet, but only seldom. Most meet on a private basis, at least here in Germany. On the 1st Frankfurt BIID Conference there were 30 to 50 people with BIID, too.

So just contact a lot of persons with BIID and you might find one who lives close by.

I had contact to a BIID sufferer in Israel some years ago, he also was gay and stuck in one of these orthodox religious families.

There ARE more persons with BIID in Israel. Maybe you could open an own yahoo group, a blog, a web site, a forum in Hebrew? We have a web site plus forum in German, and over this we can also arrange meetings with each other.

And there is always the option to visit somebody else in the holidays by going abroad.

Hello Victoria,

Your descriptions hit home so hard for me. I can’t get in a car without wondering if this will be the drive leading to the accident that will give me what I need.

I also didn’t notice that Phil had left out “knee”. My brain just filled in the word automatically.

At three times your age, I’m still hanging in there. Never give up.

Most importantly, I would echo Sean: indeed you are not alone.

oh wow…..
this is totally random, but i was being somewhat masochistic and using stumbleupon to find “disability” sites and found this page! o-o
out of all the disability-related pages on the web, i accidentally found this. again. lol

meh! I guess @Tora that it was meant to be :)

You know we luv ya Tora ;)