I wish I’d saved a lot of money for equipment then gone off to school somewhere incredibly far from my parents. I could have been whoever I’d wanted to be; no one there would have been the wiser. I could’ve come home a year later in braces having made up a story & say I didn’t want to worry them (my family & friends) & that my disability was no big deal to me, so they shouldn’t feel bad about it.

Be imaginative & creative; where there’s a will, there’s a way.

@Bracy, Hardcore, maybe; the truth, possibly; not got the faintest idea what you’re on about, definitely…:)

Sorry, but i really don’t understand what it is you’re trying to say ??

Teenagers, I would say to you that if all you need is a wheelchair or braces or something similar that doesn’t necessarily require permanent alteration of your body, you should do anything & everything in your power, as quickly as possible, to get your equipment and start using & wearing it like you want to.

Make up stories (remember, medical records are private), spend lots of money, buy tools & learn how to work with metal, go shopping in Mexico, and/or explain the truth to anyone who really needs to know it (they will not kill you or even hate you). Do whatever you have to do.

I wish I’d made my move a lot sooner. My best years are past me now. I feel like all the time I wanted but went without my braces was wasted time. I feel so much better about myself, other people, and the whole world now that I can actually be myself. I know my past would have been much brighter (& probably involved a lot less drugs) if I’d started being myself earlier.

I’m telling you this because I don’t want you to waste your precious time like I did. Look as good to yourself as you can while you’re still good-looking.

Chloe I’m amused by your AFO questions. The AFOs are so trivial to me. They’re nothing! They were just an experiment that I tried, they are cheap ones I got off eBay, not custom, and I wear them whenever I leave the house, because they fit with my “neurological problem” quite nicely. I don’t particularly love them, but they work. I use them and crutches like Gordo uses his cane…they are a prop that allows me to wheel.

@Claire, Me thinks the natives smell blood, they’ll be after you with pitchforks and cloves of garlic next, “if she weighs more than a duck, she must be a witch, burn her”….run away, run away, make for hills…save yourself..lol :)

When and why did you get AFOs? What kind are they? Do you wear them full time? What are your feelings about them? How do they make your life better.

Tell us all about the BIID experiments you have participated in.

And yes, how did you get to the point of not being particularly bothered by BIID?

XoXo
SadTeenager x

your all awsum do you have to fit a certain criteria to be able to sighn up?

thank youu
xoxo

SadTeenager

Also, I have to agree with Brice. We’ve had full lives, done interesting things, known joy and pleasure and love and success. I’ve completed a college education, gotten married, had some great kids, have an interesting career, have traveled extensively and am able to laugh and have fun. Having BIID doesn’t mean that you can’t have these things.

I have to say this…and I’m very sorry, Sean, this is nothing against you and I think you’ll know this. A lot of the writing on this site is particularly agonizing, Sean’s in particular. I am not sure I’ve ever met someone with BIID as bad as Sean’s. Most of us do not suffer nearly as bad as him with our BIID. In fact I’d say that it’s the people who suffer the most, and who are going through a particularly bad time at the moment, who tend to do the writing. Those of us who are managing pretty well seem to have less need to write about it. But it gives a kind of a skewed view of what BIID is really like. It does not always get that bad…in fact I think it’s rare for it to be that bad. Don’t think that just because you have BIID that your life is going to be miserable. It won’t be.

@Brice- Hear hear!

Random thought… Am I the youngest here? o_O

We don’t really *know* if BIID is a mental problem or a neurological one. Many of us see shrinks to help with other things in our lives. For example, if you are depressed and you have BIID, it’s easier to handle BIID if you can control depression better.

You’re not pathetic, many people have gone online and presented themselves as wheelchair users in virtual worlds.

I’ve received your email and will respond to it shortly.

hi you say you see a shrink. does that mean my desire to be somthing im not and being jelouse of ppl i see who are in wheelchairs is a mental problem? im still so confused
im so pathetic that i log onto virtual worlds and live my life in there in a wheelchair.

i just dont know wots wrong with me

p.s im only 18 and havebeen liek this sicne i was about 4 i remmeber trying to break my leg when i was 10 but now i want to be a para. breaking my leg by fallin of a play ground thing is no longer acceptable to me its like as i get older my obbsession gets stronger

When I changed my name my parents knew from the start what I was doing. They didn’t like it as such but it wasn’t a secret. People can call me whichever they like on facebook and it doesn’t show up on photos. If I started using a chair with some people I’d have to make sure they didn’t tag pics of me in a chair on facebook and that somehow I didn’t get visits from people who know me as a walker while I’m with people who know me as a wheeler. If that situation arose then I’d have to invent some story and I know from experience that once told these stories have to get more and more wildly far fetched to include all the details that each individual already knows and before you know it you’re in a massive tangle.

On a different note, I found out a couple of days ago that I have a ‘lump’ in my tibia (lower leg bone). The doctor doesn’t think it’s anything sinister but said I might need an operation to strengthen the bone that would include 6 weeks non-weight-bearing in a cast and another 6 partial-weight-bearing, still in a cast before starting to really strengthen it all up again. I know you guys won’t think I’m wierd for hoping that I do need the operation!

I’ve been “caught” by a fellow student who I used to run into and chat with on the bus, and he bought my explanation, but not without asking a lot of questions.

A former prof of mine also caught me using a walking stick, but she didn’t ask any questions, and I didn’t volunteer an explanation.

Two of my neighbors have caught me assembling my chair outside my house, lol. On the same day, no less. I had to improvise something on the spot, and I don’t think they believed me but decided not to ask anything further.

The terrifying moment for me would be the day when I have to explain all of this to my parents; it’s been a “one-stop ticket to a serious anxiety disorder” (as Claire put it) in this regard, because I’m so afraid of being caught by someone who knows my parents, and in turn telling my parents about me. And I know this will seriously hurt them, which explains why I don’t want to tell them. But at the same time, if they know about this, I would feel less panicked about wheeling in certain areas or doing certain things.

Because of this, I normally have to hide my chair in the backyard and wait until my parents are asleep before I can sneak it back in. And for going out in the morning, I normally have a 10-minute window between the time my dad leaves for work and my mom wakes up. And her wake-up time varies, so sometimes I would be halfway down the stairs carrying my chair frame when I would hear her getting washed up in her washroom, and have to hurry up and leave in a panic before she opens her bedroom door (which has led me to forget to bring certain things).

“Serious anxiety disorder” in the making, indeed. I honestly don’t know how long I can keep this up. It’d be easier if I had my own car, so I can store my chair in there.

That’s not really a big problem but throw in BIID and the secrecy that would most likely come with it as well as any embarrasment factors etc.

You really can’t forsee the way your old life will interact with your new one until you get there so please don’t make the assumption that it just won’t.

It’s still good to remember that very few people will assume that we are faking it because they think wanting and choosing to use a wheelchair is plain wierd and can’t imagine that we’d use one for fun.

My most embarrassing moment was when my sister caught me in the middle of bandaging my left foot, when I was thirteen. I was very flustered, didn’t know what to say, and just hoped she would leave right away. I’m sure I had a very guilty look. I was more careful after that.

Later, I accumulated a sufficiently large collection of bandages and braces that it was simply impossible to hide from anybody I was living with. Sometimes this went better than others. In 1981 or 1982 I had bandaged my leg. My girlfriend, who I was living with, said that she didn’t want to have sex with me because it would feel like having sex with a cripple. Ouch!!! I honestly don’t get why someone wouldn’t want to have sex with a person for no other reason than they can’t walk.

After I got fibromyalgia I had a genuine need to use bandages and braces quite a bit of the time. This gave me a good excuse to use them any time even if I wasn’t having an episode.

My partner is highly domesticated, so she took over most of the house organising and cleaning when we moved in together. I still hadn’t told her about any of this when she found a box with a suspiciously large collection of rigid knee splints and hinged knee braces. It wasn’t a problem though.

At this point my default mobility mode is in the wheelchair, unless I have some particular reason not to be. So it’s no longer an issue for anybody to see me in a wheelchair. The issue is the other way round, like Sean said. I could not have imagined this a year ago!

Mobility mode number two is leg braces, which I use when going to somebody’s house or a resaturant, that I know to be wheelchair inaccessible. I deem this to be equivalent to the wheelchair in terms of people seeing me.

At the opposite extreme is no assistive device at all. There are only two places where this happens. Although most of my time at home is spent in the wheelchair, I do walk around at times. The only person ever to see this is my partner. If someone is coming over for dinner, or whatever, I am always in leg braces or wheelchair regardless of whether they do or do not know about the BIID. If anybody knocks at the door, and I happen to be walking around, the very first thing I do is jump in the wheelchair.

The other place unassisted is skiing. There is a possibility that someone could see me there. We had a guy over to dinner some weeks ago. It turned out that he is an avid skier and he goes to the same ski resort that I go to. He only knows me as a wheelchair user. Actually in response to a question from my partner he said “Yes, you need really strong legs to go skiing”. Then he realised what he’d said and gave me a very embarrassed look. If I meet him up there I will just bite the bullet and tell him that I have BIID. Although that can be nerve racking, my experience has been that it’s usually not as bad as you think it’s going to be.

Last mobility mode is the single crutch, which is reserved for work. I have covered all bases for people at work. They know that I ski in the regular manner, AND they know that I have and use a wheelchair. I have pitched my level of impairment such that both of these seem plausible. They comment on things like large bruises on my arm, or a wrist brace, and I can honestly say that I fell skiing. Of course they will assume that I fall a lot because I am unsteady on my feet, whereas it’s really because I ski like a complete maniac. This also gives me further excuse to use a wheelchair at work, because I can say that I reinjured my back while skiing. By the way, thank you Claire for suggesting quite a while ago this gradualist approach at work. It’s going very smoothly.

So the only remaining issue is people outside of work seeing me at work. This is not unlikely because there are a lot of psychotherapists here. For example the psychotherapist who has the office closest to mine is an MtF TS. She sees a lot of people for gender issues. So sometimes I meet someone in the corridor who I know from the Gay Lettuce Bacon & Tomato (GLBT) center or gay pride parade, etc. They will have known me without mobility impairment, but the crutch is easy to explain. I simply tell the truth about my back injury, and they will assume that the extent of paralysis is a good deal more than it really is, just because I have a crutch.

The worst case scenario is someone who knows me only in wheelchair or leg braces seeing me at work with the single crutch. Since most of my friends have depression it could happen. I don’t have a good explanation ready for this. It’s a good reason to wheel at work.

Sorry this got so long without much in the way of entertaining stories. It’s a complicated issue.

My dog likes to hide under my bed. When I had the bandage under there, I was so afraid she would decide it was a toy and take it out. But she never did. Also, she hides under there sometimes when my mom doesn’t WANT her under my bed. Every time THAT would happen, I would be afraid that she’d find the bandage. But apparently she never did. One weekend she decided to clean my room (when I wasn’t there) fortunately, she told me beforehand and as soon as I got the chance, I grabbed the bandage and put it back in the closet… It’s still there. (This was actually like, last week…)

I have been seen by other people that I know and have been able to use a similar excuse each time. Being a medical professional has it’s advantages!

My fear is that I’ll be seen by someone I know and that I won’t see them. Particually that they’ll bring it up in front of other people at a later stage and I’ll have to explain to a whole group of my friends.

Sean : That sounds awful having your mum pull out your neck brace in front of your friends. I don’t have any idea what she was hoping to achieve either!

The one kind of getting caught that I haven’t done and hope never to do is to be caught by a stranger. e.g. by falling out of the chair and giving myself away in the attempt to get back in. I’m comforted by the range of disability and the existance of incomplete SCI because if I do move or use a muscle to get myself into my chair or something it doesn’t give anyone the immediate right to pronounce me a fake (even though I am one)