Blog > Thoughts > Sean's Thoughts > Real Life Test Recommended
Real Life Test Recommended
Written by Sean on Thursday, December 31, 2009
This last week, I have exchanged a few emails with one of the prominent psychiatrists in the field of Body Integrity Identity Disorder. This exchange leaves me somewhat disturbed, due to the implications I see in this person’s position.
We were discussing potential surgery for paralysis BIID. He’d just had dinner with the only surgeon who is open to help with paralysis. The surgeon will not do spinal cord transection, as that involves too many "life organs". He is prepared to provide an alternate solution which I think is acceptable. The psychiatrist tells me that:
[He] did recommend to [the surgeon] that anyone considering this procedure should undergo a reversible nerve block first in order to demonstrate that the person is willing and able to live with this disability before doing something more permanent.
This seems entirely reasonable on first look. I’ve been saying myself that doing a real life test before surgery is really important. When I started thinking about it a bit more in depth, I became quite uneasy.
Anaesthetists Won’t Provide Nerve Blocks
While the idea of undergoing a reversible nerve block is really good, there must be access to medical professionals who will provide such procedures. Otherwise, it would be creating a criteria that is impossible to meet, hence an effective denial of surgery. One would think that finding an anaesthetist that would accept to do such a procedure would be relatively easy, but it doesn’t appear to be so. Even my GP inquired around to see about giving me an epidural, to no avail. If an open minded doctor is unable to talk anaesthetists into a procedure that is routinely done during childbirth, how much more difficult will it be for us, the "patient" to convince anaesthetists to provide a long term nerve block, even though it would be "reversible"?
Cost Prohibitive
Assuming that the team willing to provide the actual surgery would also be willing to provide the long term nerve block (something that hasn’t been discussed), it would increase the total costs significantly, as it would involve a trip to Asia, as well as the costs of the nerve block procedure. This to me doesn’t really screen for the person who really needs the surgery, but rather for the person who can afford it.
Amputee BIID Don’t Require Such A Real Life Test
There is no way to engineer a practicable and realistic real life test for those people who need to be amputees. Even wearing a stiff brace would not reproduce the condition of missing a limb. So there’s no real practical way to do a real life test of any duration for people who need to be amputees. To my knowledge, none of the several people who had a limb amputated by elective surgery had to undergo such a test. They just had surgery. In some cases they had to undergo psychiatric evaluations, but not in all cases.
Negative Perception Of Paralysis?
Given these issues, I can’t help but wonder why a long term reversible nerve block is recommended for those of us who need to be paraplegic, but not those of us who need a limb amputated? Is it because of the perception that paralysis is more disabling than an amputation? With the suggested procedure that would not affect "internal organs" (such as bowel/bladder/genitalia), in effect, the only thing that would be impaired would be leg function. While it is indeed a significant impairment, it is not a disability! No more than a single leg amputation is a disability.
It is all a question of perception. I think it is unfair to impose conditions on us based on prejudice. Obviously there will always be a dose of preconception that seeps into things, but such a negative prejudice of paralysis is relatively easy to correct. I am not saying that paralysis is "all good", far from it. But I think it is reasonable of us to ask doctors to acquire a more balanced view of it.
And What About Needing Double Above Knee Amputations?
Some of us don’t need to be paralysed. They need to have both legs amputated above the knee. So far, the few surgeons who have been willing to do amputations have refused to do both legs. The most they’ve agreed to was to do one leg, and later down the road consider, perhaps, doing the other leg. They can’t be asked to have a nerve block – having paralysed legs would not given them the experience of being legless.
Yet, in terms of level of "disability", being paralysed from just below the hips down to the toes isn’t all that different from missing legs from mid-thigh down, is it? So if a surgeon is willing to conduct a procedure that would paralyse both legs, logically they should also be willing to amputate both legs. And if they are willing to amputate both legs, without doing a nerve block ahead of time, why should a nerve blood be required from those needing to be paralysed?
My Real Life Test
I have been using a wheelchair full time for nearly 15 years now. I was married to a paraplegic woman for many years (and the only reason we aren’t together anymore is that she passed away). I have worked with people who had a variety of physical impairments. I have provided services to people who had a variety of physical impairments. I am as knowledgeable about both the physical and emotional experience of the condition I’m seeking as it is humanly possible to be. Is this "life test" not sufficient?
More Thinking Required
Seems to me that there is still more thinking required here. I am left with the impression that the people who have power over us (the medical folks) are still struggling with finding their way through the maze of issues related to BIID. I am thankful to have these people at least willing to examine these issues. At the same time, I can’t help wishing it happened faster.
Where Are We Left?
Indeed, where are we at with all this? I honestly don’t know. I *am* concerned however that as we’re getting closer to the goal of surgery, the goal post is being moved further back with each passing moment. What do YOU think?
Tags: Amputee, BIID, Nerve Block, Paralysis, Psychiatrist, Surgeon, Surgery
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9 Comments
No, no, the goal posts haven’t moved. They’ve just put another two goalies in. The sad thing is I thought one of them was playing for *our* team.
3 On 4 January, 2010, Phil said:
The new goalie is still playing for us, but in order to help us he has to understand the other team and do something to reduce their fear = their risk to make a big mistake.
It is a realistic approach to get ANYTHING started, I would say.
I can get behind the spirit of a real life trial for people with BIID. I understand that acquiring an impairment is not something to rush headlong into. Once BIID research has progressed enough to where it is recognized and better understood to the point they start doing treatment I think they should do some sort of counseling and psychiatric work they do with people wishing to change their gender. It’s for the same reason, it is a major change so people need to be sure that is what they want and it is for the right reasons. It isn’t moving the goal at all, it is just ensuring people aren’t aiming for the wrong one or for the wrong reasons.
I just hope the hoops they make people jump through aren’t made insurmountable.
As someone whose body image is that of a DAK, I can say that I agree that the idea of a real world test to be problematic. I’m not entirely sure there is a real life test for me for the same reason I don’t pretend: My body image is not that of a person bound to a wheelchair. While I see a wheelchair as a backup in the same way as contact lens wearers have glasses just in case, I have always imagined if/when I am able to get rid of my legs I would be able to use prostheses. How does one simulate prosthetic legs when one has a set of real legs?
Make what you will of my directionless ramblings of nonsense.
Using prosthetic legs as a DAK doesn’t seem very realistic to me. Only few extraordinarily sportive guys manage all day. Most people use a wheelchair most of the time and prosthetic legs for some hours per day only. Depends very much on the stumps, not only length but also how your skin reacts, things you can’t foresee.
And when you get older…
Maybe an approach could be to wear leg braces?
My desire is also to become a double above knee amputee. I see myself using a wheelchair, a skateboard, prosthetic legs, stubbies and everything when useful and when I feel like it. Changing between them. Sometimes using nothing, just my butt and arms.
Well, who knows what reality looks like…?
I agree with Phil that most DAKs wouldn’t use prosthesis all day all. The high tech ones are very expensive and I can imagine for most they are unattainable.
As for DAKs pretending, it is rather complicated. One can’t get the proper feeling and experience. Using a wheelchair mitigates the pain some but brings more questions. Personally after almost a year of using a wheelchair, my experience (my body image is that of a DAK, not a paraplegic) is that wheeling helps me tremendously but also I feel free to walk. When in a chair, I move my legs freely into a comfortable position. People get an impression that I have MS.
At home I don’t use a chair. There is no mental benefit there in it and I can imagine because was I a DAK, I wouldn’t use it at home either. So on some level, one can experience the physical limitations, on the other, without a surgery, the real experience will never be there.
Yeah. I do see a problem with that just as you have. I do realize prosthetic wearability depends on many factors such as stump shape, level of fitness and other health issues as well as the quality of the prostheses themselves. Regardless that’s what my body image is. I can’t explain it, and I certainly didn’t choose it. I’ll admit that it seriously freaks me out some days. What I do know is that I am the kind of person who likes to stand, and even works in a field where standing is mandatory (which sounds somewhat masochistic when you consider my the fact that I have knee problems). It’s all very conflicting.
I think I could live with being in a chair, but it would probably drive me mad if I didn’t at least have a set of legs available as an option, and, without truly knowing, I would imagine I would try real hard to spend as much time as I could outside the chair in much the same way I do physical activities despite knowing I will have screaming joint pain afterwards. It could just be a delusion I am painting for myself. I just coming to terms with the fact that I have these feelings, and I still find them disturbing and I have to admit after reading how desperate some people have gotten to find relief after many years scares me, but so does actually seeking relief, both in the life changing aspects of surgery, but also in the societal aspects, how crazy would I be seen as, would they instantly throw me in an institution. A loss of mobility pales in comparison to the sheer terror the thought of being locked up evokes. Maybe its because I am still young, but all of the paths ahead seem fraught with danger.
. . . and there I go off rambling again.
@ Bryce: You are not rambling, you are venting and sharing and that’s good, very good.
Personally I hate standing (pain wise) so even if I became DAK, I would still prefer a chair. But we are all different. Your knee pain would be gone by then so you might really love standing even more.
Anyway, all your feelings are valid. There is nothing logical about BIID so there isn’t much need to try to reconcile logic and our feelings.
Unfortunately your fear of future, even being locked up, are valid as well. I had a husband telling me that I need to be locked up. Sean would say one should seek a psychiatric help even just to have a medical professional evaluate you and say that you are sane/no danger to the society/not a psycho. That you are a high functioning individual with BIID.
This may not be relevant, but on the way in to work today I saw a RAK/LBK double amputee standing at a light rail station. She was clearly very comfortable with her prostheses, both in terms of using them and not trying to hide them. She was choosing to stand even though there was seating available, and she wasn’t using a crutch. She looked like she was in her late teens and I had the impression that a wheelchair would not suit her image.
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1 On 4 January, 2010, Phil said:
I think L. has already given a very good answer to the question of a “real life test” in his posting in Dan’s “fighting-it” group:
http://health.groups.yahoo.com/group/fighting-it/message/10203. Basically he says that the real life test doesn’t have to be 100 % like the desired form or function of the body, but resemble the disability as realistic as possible.
There is not only impairment; disability is not only be produced by society. For example, I spent the days over New Year in the mountains. The mountains are not designed by society. There are no streets and steps, but there is nature, there are rocks and snow and steep mountains, and without legs I would have had really big problems to get up there to the cottage where we spent most of the time (in fact, I think I wouldn’t have made it there at all). I have to admit to myself that legs are really a perfect instrument to get over natural barriers, not only over artificial ones.
I would see “real life test” as ONE “barrier” before surgery. Cost, availability etc. are other aspects which might form other barriers.
A “real life test” is a barrier which makes sense in my eyes.
COST: That everybody who suffers badly from BIID should be helped to get surgery is a wish which I have (not only for myself), no: it is more, it should be a general rule in humane societies that everybody gets the treatment for their diseases as long as society as a whole can afford it. (And society can afford a lot, just look what cars are parking and driving out there.)
AVAILABILITY is another problem. It requires that BIID be acknowledged at all and that a consensus can be found that it deserves a good treatment based on both the will of the sufferer and the ethics of doctors and surgeons and the knowledge of BIID research.
In my private opinion your real life tests are sufficient. But nobody asks me…