Comments on: What Do They Suggest We Do With BIID?

By: Phil

Phil — Wed, 27 May 2009 23:57:16 +0000

@ Luca:

this is a suggestion I have made to myself very often.

One answer is:
It doesn’t work. I have tried thousands of times, it didn’t ever really work. I can’t really learn to live with this body.

And the cause is the very nature of BIID. Of course, I am living with it for many years now – but this is not a proof that I will be able to do so in the future. It uses up so much of my energy to live on two floors at the same time, trying to concentrate on “real life”, while the ends of my stumps burn in my thighs and remind me constantly of where my body should end.

And Sean is right: Surgery is comparably simple (compared to other kinds of treatment for other problems), I know of many cases where it solved the problem.

So I would like to change the question – leaving out only two words, and asking it to you:
“Why learn to live with being able bodied? Yes, it’s difficult and you might never be truly happy with it.”

Why should I never be truly happy? Just because somebody else thinks my body should have two complete legs?

Why?

By: Sean

Sean — Wed, 27 May 2009 01:19:44 +0000

@Luca thank you for your suggestion. The problem here is that most people with disabilities don’t have the *possibility* of a fix dangling in front of their noses. While it is unlikely I’ll become a para, the mechanism to make it happen are relatively simple. There *is* a cure for us, not for them. And that dangling carrot makes it next to impossible to just “move on”. I’ve spoken about that elsewhere on the site, I will see if I can find the posts again.

By: luca

luca — Wed, 27 May 2009 01:06:05 +0000

Why not just learn to live with being able bodied? Yes, it’s difficult and you might never be truly happy with it. But most people with disabilities have to learn to live with that. They may never fully get over the wish to walk again, but most come to terms with it.

By: inVivo

inVivo — Mon, 25 May 2009 08:16:01 +0000

this person is a fringe, I would not take him serious at all: ” radical environmentalism, and the dangers of animal rights/liberation. My views expressed here, as in my books and other writings, reflect my understanding that the philosophy of human exceptionalism “.
Veah, right, wait till global warming catches your butt!
There a links to catholic sites and pope books, these are people I will not even shake my hand with. Harry Potter is evil, and so are amputations, etc by choice.
Read this for a chance:
http://journal.ilovephilosophy.com/Article/The-Ethics-of-Removing-a-Healthy-Limb/31

By: Wheelguy

Wheelguy — Mon, 25 May 2009 07:25:59 +0000

I find it rather interesting that the \”professionals\” wont offer such things as spinal transection or amputations as a \”treatment option\” for our BIID. I, for one, would be much happier if my legs \”just quit – for ever\” I have an interesting question though… If we were given that option … say a spinal transection … would we then have all the options (I live in the United States) such as welfare and Social Security Disability benefits? (I think we should have that as an option now as it is debitating enough to have to deal with BIID and live it out as a \”wannabe\” or \”pretender\”. Better yet – lets just rally together to get BIID listed as an actual disability. As a side note, It seems that as I get older the BIID seems to get stronger. Does that seem the same with others here too?

By: James

James — Mon, 25 May 2009 05:40:58 +0000

I am becoming more and more convinced that the real frustration for us with para/quad BIID is the lack of choice. If a safe surgery or other type of option for spinal transection was available some would take it but others would choose not to but their BIID would come under control because there was an option. At the moment the huge frustration comes from the fact that there is no viable option like the Amp BIID sufferers have.

By: Sean

Sean — Mon, 25 May 2009 03:01:08 +0000

@Suzanne, yes, it would seem that we should be happy to be alive and content with out lot. Live in hell ’till we die. Sorry, I just don’t have it in me to be a martyr…

By: Suzanne

Suzanne — Mon, 25 May 2009 02:45:57 +0000

So were suppossed to just sit on the bones of our buts and do nothing?
Nobody seems to really and truly want to help in a physical sense.
i know that dosn’t really help any one much but thats just how i see it at the momant.

By: Julian

Julian — Sun, 24 May 2009 22:32:27 +0000

Hi Sean.
I’ve been reading for a while but haven’t posted yet.
I’m not BIID, but I do fall sort of in that direction.

The thing I thought when reading this post was mainly, “It’s not just BIID.” There are numerous other conditions – both physical and psychological – that have minimal treatments. Should people with chronic pain be allowed optional spinal transections to remove their pain? The response would surely be, “I’m sorry you’re in pain but you currently are better off than you would be if we did it.”
The same sort of thing applies to other problems.

That doesn’t, of course, make your point any less valid.
It is possible – and I do hate to admit this – that there is no answer to BIID. In the same way that there is no answer to other conditions.

With any problem, people on the outside like to believe you can take a pill and get better, be it depression, arthritis or BIID. People in the know, realise this isn’t the case. But the people in the know don’t pull the strings – because the people in the know are seen as ‘desperate’ and in the cases of psychological problems, “not in their right minds.”

I also wanted to respond to the “if you know they won’t help why see the shrinks” comment, but Sean has answered that very nicely.

By: Sean

Sean — Sun, 24 May 2009 21:42:21 +0000

@ahab, as for going to either Dr. First or Dr. Ryan or another top specialist to see who they recommend, yes, I’ve tried that. While they’ve been very helpful, more than should be expected, really, they weren’t able to recommend anyone I could see. I’ve even asked them about doing videocall sessions with them directly, but that’s isn’t a viable option either.

By: Sean

Sean — Sun, 24 May 2009 21:40:44 +0000

@ahab, there are three major reasons I keep going to shrinks. The first one is that if I do *nothing*, I will drown. I must keep moving, somehow. The second is that I hope that my struggle will educate the mental health profession in some way, so the person that comes behind me gets a chance at a bit more help. The third reason is that by showing willingness to try non-surgical solutions over and over again, and showing it doesn’t work, if surgery becomes available, they’ll have less ground to deny me on the basis that I haven’t done everything I could to avoid it.

By: Cath

Cath — Sun, 24 May 2009 20:51:18 +0000

I think the problem is that with no clear professional group that we can approach for treatment, in the absense pf any surgeons who are willing to risk their jobs for us, mental health teams are the only alternative we have as a focus to keep the issue alive, except in the sensationalist media.
So I can see why it seems necessary.

By: Seth

Seth — Sun, 24 May 2009 20:45:23 +0000

Personally, I think he does it in hopes that one day it will click in their minds “Hey, what we are doing isn’t helping him at all. Maybe this thing is real, and we should give him what he wants.”

Again, that is just my personal opinion on why he does.

By: ahab

ahab — Sun, 24 May 2009 17:58:45 +0000

What I do not understand, Sean, is why you try again and again to get help from shrinks, though you exactly know they are reluctant and unable to offer any help? Invest your energy in getting what you need. You only hurt yourselve when you go to folks you exactky know they only will hurt you, why do you this? They do not help BIID sufferers, period. They don’t accept our identity, period. You can’t expect help from them, but you still go to them, that does not make sense to me. Have you asked Prof. First, whether he knows therapists who are *really* understanding? If you really want to seek for a therapist you might ask a 3rd person like Prof. First to help you with finding one, instead of doing this all alone. What do you think?

By: Seth

Seth — Sun, 24 May 2009 17:56:40 +0000

Pardon my language, but &#$@ him!

By: Chloe

Chloe — Sun, 24 May 2009 14:41:53 +0000

One of Wesley Smith’s arguments seems to be that if we have managed to live with it this long, then we can just keep on going. I’m not aware of any scientific evidence that BIID tends to become more intense with age. However, it does seem to be that way for me, and for a number of others on this website. What I did ten years ago to get by is no longer effective. The argument that just because we have lived to our current age means that we can carry on like this for another ten years, is spurious.

Wesley Smith says he owes us empathy. But no, empathy is something which requires the imagination to put oneself in the other person’s position to feel some measure of what they are feeling. Anybody who truly has empathy for people with BIID could not possibly deny us what we need.