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There’s a really blurred line in all of this between the people who have researched the earth about their needed impairment like myself who knows as much as they possibly can without actually experiencing an SCI, and then you have the people who seem utterly clueless and know nothing beyond legs that don’t move. I guess a good question is have you done research into what your needed impairment is? Do you still have an unexplainable need for it after you know you’ll spend the rest of your life worrying about pressure sores, UTIs, Arthritis, failed shoulders and drop foot?

I’ve never been through anything like having family members and strangers cath me. I’m not going to try to pretend I have. I will say this though.

I’ve told you guys in the past I had kidney stones when I was seven. There are two things I will always remember about that experience. 1, the night long excruciating pain I went though. My parents would sit up with me on the toilet the entire night (7 pm - 7 am) trying to ease the pain with rawleighs tummy medicine, hot water bottles, Ural Sachets (I had to take them several times a day, including during school. I remember once when it was raining and we had to stay inside a kid said her mother uses the same stuff for a more serious urinary problem) and anything else we could think of. 2, The fact that after having the procedure done to break up my stones I had to pee into a cardboard “hat” and leave it at the end of my bed (which was by the door) for the nurses to take away and sift through. For the first few days it had blood in it and I was never comfortable with having my business on display like that for all the world to see.

So no, I’ve never experienced anything remotely close to catheters or other such close and personal moments but I know exactly what it’s like to feel a loss of dignity over an action that I have always considered private.

I think a common experience is that the general notion of our specific disabled body image is present for as far back as we can recall, and our appreciation of the implications grow with time. Loss of bowel and/or bladder control would be one area of growth in understanding. Exploring the various styles and functionality of associated hardware is another, and one that is as much indulged by PWDs as with BIID sufferers — which is to say, some do, some don’t.

Again, we here about the realities of disabilities. Little, if any of life’s experiences are A La Carte.

This is a VERY interesting post; and one which demands complete honesty in response. It is also a very complex issue.

To me, the most important consideration is one brought up by Claire a while ago. She pointed out that we are not born with knowledge of specific diseases, conditions or injuries pertaining to the real world. Consequently, there is no reason that whatever manifestation of BIID we might have should necessarily be in exact correspondence with a real life condition. Therefore it does not lessen BIID in any way, make it any less real or authentic, if one’s self image seems to match paraplegia fairly closely but yet does not include every aspect of it. It is not surprising that some of our needs may seem “a la carte.”

My first BIID symptom was thinking that my legs were not supposed to work. That was in place by the time I was four. Urinary incontinence and loss of genital sensation did not creep into the picture until I was seven. This was followed by an awareness of the need for sensory loss in my legs a couple of years later. My earliest knowledge of specific conditions that seemed to match was at age five, regarding polio. Eventually I figured out that a SCI was a better match.

You brought up your bowel issues. No, it’s not too much information in my opinion. This is a real issue that should not be swept under the carpet. However… I have to admit that I have been reluctant to be completely open about it. Here goes: I don’t remember exactly when I figured out that it comes with the SCI package deal. I would answer now, as always, that I have no desire for any bowel problems. BUT; it is not quite that simple. When I was in my thirties, I figured out ways to simulate complete loss of bowel control. I carried this out many times, such that I would have no choice but to randomly shit myself in public (with appropriate containment systems). My turn to feel like I am sharing WAY too much information! I have a lot of anxiety about other people thinking I am a weirdo. Anyway, it surprised me a bit that loss of bowel control did not feel at odds with my self image. It’s not the same thing as actually wanting it though.

As for the privacy issue, I can honestly say it’s not a big deal for me. After genital surgery there were plenty of nurses who saw and cleaned what resembled a mess of bloody hamburger meat with a tube sticking out. Er, sorry! TMI again? In any case, I wasn’t at all bothered by such stuff. I wasn’t bothered by Alicia draining my catheter bag either. I was instructed not to move my legs for a week, so a lot of things had to be done for me.

@Chloe,Brice It seems that Claire has beaten us to to the punch again.

I’m not trying to be divisive, but the idea of body image vs. mode of impairment is not really that fine of a line to me in this sense: Though I don’t state it above, I think it divides us into those that want to be (disabled) and need to be. BIID is the need to be, based on the incongruity between our mental map and the physicality of our bodies. I believe that there are also those with a greater fascination with the injuries themselves. That’s OK, but it’s not BIID IMO.

Truth or Dare: Here’s the worst part: Though there is no question that my BIID came first, I do wonder more and more if engineering the injury and my interest in the outcomes is progressively taking a larger and larger piece of my mental pie. Unless I’m reading into things way too much, I’m far from the only one experiencing this imbalance. Does this, specifically, complicate treatment of the emotional symptoms of having BIID?

@Sophie Sorry you had to go through that. Genetics can be a real bummer, eh? I have the 6-8 year cycle of kidney stones, too. Not fun at all, as you know. What’s worse is that there isn’t really anything you can do about it but wait an hope it passes soon!!!!!

(Got the arthritis, drop foot, and minor pressure sores too, but who’s counting…)

This is an important issue you are raising Lane. Important and somewhat controversial. The idea that people with BIID somehow pick and chose the impairment we want is one of the things that really upset and anger a lot of people with disabilities. And I can understand that.

I know that the suggestion we might be selecting characteristics of a condition also upsets many people with BIID. To the point that I can’t help wondering how close to the mark it may be.

The thing is, for many of us, we never really picked a condition and then went through the effects of that condition, like a checklist, picking what we wanted or not. As other people have already alluded to, we had “effects” in our mind, and as we got older, we associated a condition to these effects, rather than the other way around.

I must agree with Lane, too: I think it is also true for some people that they are picking and chosing their “dream” disability. The people who do that are probably the same who say they need to be paralysed, or amputees, or blind, but if they had a real opportunity to make it happen, would probably run away fast.

While I often think about ways to engineer a self-injury, it certainly isn’t a large part of my “mental pie”. There is no emotional attachment to the process of injury, aside from the anguish that I will never be paralysed until that aspect is figured out.

These issues certainly are important things to consider for our understanding of our own “flavour” of BIID.

This idea of choice somewhat frustrates me, I must say.

I have never felt I had a ‘choice’ of impairments, or parts thereof. I need to lose function and feeling in my fingers and from my chest down. There is only one way that I can see of getting that. The other things that go with it - AD, bladder, bowels and the attendent risks arepart and parcel - whether I want them or not is immaterial because I must have the others. I will tolerate them because I must, same way I tolerate my dodge metabolism and my mood swings.

Well, as a minority here ;-) I have to say I only want my legs end in the thighs, and I doubt that I have chosen this desire, nor can I choose another one.

Being paralysed is a horrifying imagination for me (yet fascinating, as all kinds of disabilities have something fascinating for me). I feel the line, I feel the “hidden” stumps in my thighs. Often I have tried to change my desire. But it doesn’t work.

At least longer stumps would be rational, better, easier. Yes, but I feel the line.

I can’t be certain that I cannot change it, but up to now I was unable.

I don’t want to be disabled. I want to be just a normal man. But it seems I CANNOT. With no legs, I would have to accept the fact that I am impaired/disabled.

I think I agree with Cath on this one.

I see myself as someone who’s legs don’t work to the point of needing a wheelchair. The reason they don’t work isn’t important, but the most obvious/straightforward reason would be a low level SCI. It seems like most of us have an external vision of ourselves and then we go hunting to figure out what matches.

I don’t particularly want to deal with bladder/bowel issues. I would prefer not to. But I know that goes along with what I do want. So, I’m willing to accept the icky stuff in order to get what I want. It’s like my job… I don’t want to be living a thousand miles from my family, but I put up with it because that was the only way I could advance in my particular career.

This topic got me thinking about something I’ve never been able to figure out. I’m happy to have some sensory loss in my leg, genitalia, and lower torso. That makes sense. But when I had my finger dislocation/fracture two years ago the distal part lacked sensation just for the first two or three months, on account of minor local nerve damage. I was happy about that sensory loss too. WHY???

I think a big part of BIID is sensory loss.

I have often thought about this (mostly in the form of highly confusing dreams that I try to interpret) and I have decided that, when you get an injury, you get whatever comes with it.

Once or twice I have thought about the easy, doctor-involved spinal transection, and realized that isn’t realistic at all. I think it was one of Ahiru’s stories that made me think about it. It is all fiction, and the chance of having a painless spinal transection is absolutely not.

Well, the point of that was that, you don’t get to pick and choose your “details”, this isn’t a buffet. You get what is served, and if that is a leaky bladder, fine, pressure sore? something to keep you awake in an otherwise semi-boring routine. And I know that will all become routine, but at least for a time, it isn’t. If something is routine, there will probably be something that’s not.

Ask the waiter to choose anything on the menu in a price range, but don’t ask what it is. Your surprise.

My desired level is T-9.

My understanding that spinal cord injury may lead to incontinence entered into my mind quite early on, actually — not long after understanding the “legs not moving” part. Almost from the get-go, I have been aware that being paralyzed would likely result in a loss of bladder and bowel control as well, and accepted that. (Even when I pretend, I use a condom catheter so I’d be able to experience the process of having to find a place to empty a legbag.) I accept the likelihood that I’d wet or crap myself once in a while, or get a UTI. I accept that.

I problem of pressure sores was something that came later on, but it’s something that I’d expect to deal with, and I accept that. It’s one of those things that tend to happen once in a while. I accept that.

My shoulders may give out if I use my arms too much. That may suck in a major way, but what did I expect, without the use of my legs? While wheeling, I was recommended by someone in a scooter on the bus that I should “talk to my therapist” about getting a motorized chair to give my shoulders some rest. But I like the appearance of a rigid chair, even if it can harm my shoulders. I accept that. (I can always try to get a power chair as a backup, if I’m actually paralyzed for real.)

I might have to have help with personal care, like bathing and toileting. My family’s Asian, and Asian culture calls for family unity and personal-ness (if that’s a word) way more than your average Western family. (In fact, I’m surprised I’ve managed to hide BIID from them for so long.) So having anywhere from partial to total assistance with my personal care from a family member isn’t really that unthinkable. Obviously, I have no trouble accepting that.

Spinal cord injury can result in excruciating pain. I’d rather have physical pain than emotional pain, quite frankly. I accept that.

Like I said, if I could pick and choose, I’d pick a T-9 level injury. Most of the things that can possibly go along with that, I accept them.

The only thing that I’d have trouble accepting would be losing the use of my arms or my ability to breathe without a ventilator. But mostly because that doesn’t seem to fit with the T-9 level I’ve felt that I should be at.

I agree with Sean. I know what way I want my body to be (loss of some function below the knee requiring the use of braces and crutches) but I have no idea what condition would go along with these effects.