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They Wish They Could Help Our BIID

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Written by Sean on Sunday, March 28, 2010

A friend of mine who knows of my struggle with BIID finished an email to me by saying "I can’t make it better. Wish I could." And I started thinking of all the people who’ve told me they wished they could help. And the majority of these people don’t, and won’t, help. Can they really not help? Really?

And I’m thinking my friend *could* make it better. In face, many people could. But they make a choice. At the moment, my "only" problem is a simple question of money, or lack thereof. I need about US$25,000. Someone really wanting to help, could. A few readers here have already (and I thank you deeply). A few other people I know are in difficult financial situations, and can’t help with money. Ok. That’s fine. But in the end, it *is* a question of chocie.

My friend *could* mortgage her house if she really wanted to. My mother *could* advance me a loan, but she won’t. My GP *could* slice my spinal cord in the right spot with a scalpel.

There is a question of belief, and a question of choice. There is the belief that becoming paraplegic would not make it better for me, on the part of everyone but those of us who have BIID. Whereas I believe it would make it better, based on the testimony of a couple dozens people who have undergone surgeries. That belief that surgery would not help me obviously influences the choices made, in a major way.

As for choice, many factors play in, obviously. What is more important to my GP? Helping me, or retaining his medical license? The choice is easy. But he *could* help me should he really wish. What is more important to my mother? Helping me, or staying a bit further afield from debt? She says that my well-being is more important to her than anything. I believe she believes it. But somewhere she’s made a choice, influenced by her own beliefs.

So the statement really is "I wish I could help *within my own limits*". That last bit is implied, I think. Or maybe it really is not even considered, it is an unconscious decision they make.

 

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13 Comments

1 On 28 March, 2010, howard said:

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i say with respect to your predicament,why wont you consider blackmarket options.a couple thou should do it

 

2 On 28 March, 2010, Phil said:

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This is becoming a very philosophical discussion. Which is good!

To what extent is belief a matter of choice? Do I choose my beliefs?

And do my beliefs not only limit my choices, but also shape my perception of where a choice is and of alternatives?

I with my BIID have often asked: “How can I want not to want what I want?”

How can somebody for whom paraplegia or the amputation of both legs is a horrible imagination WANT to see it as positive and thus change his/her attitude and in consequence give us real support to make it happen? (And why should they want to?)

And there is a less philosophical question: What am I doing for others who suffer? How much of my money, abilities, time, energy etc. do I give others who are even worse off than I?

Okay, the procedures that would help us are comparably simple. But it also is a comparably simple procedure to donate 50 Euros and save the lives of some children who otherwise are starving to death.

I need help. Others need help. Who is the one to decide who gets which help?

It is the free decision of the others. I can only ask them and beg them.

 

3 On 28 March, 2010, Phil said:

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@ Howard: There are not many “blackmarket” options, and we can’t afford them. (In fact, I have heard only of 1 option, and this is always endangered, and it is expensive, AND they wouldn’t do double amputations.)

How to find other surgeons?

 

4 On 28 March, 2010, howard said:

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double amputation,i thought you wanted to be a L2 paraplegic.i croe bar to the back hard enough should sever the spinal cord.anystetics and pain killers should be easy to find then stage a car accident

 

5 On 28 March, 2010, howard said:

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a blog from http://www.drbradshook.com claims to know low impact ways of sci.he 5 mile an hour impact not exacly sure what that is in kilo.maybe 8.5 kph

 

6 On 28 March, 2010, Sean said:

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Howard, Phil needs a DAK amputation. I need paraplegia. Everyone visiting here has different needs.

As for “a couple thousands” on the black market, that is a very naive view. To my knowledge, there is only one surgeon willing to do something to help at the moment. And costs are nearly US$25K. And as Phil points out, he’s still not willing to do a double leg amputation.

As for “crow bar to the back”, it’s not that simple. Studying the physiology of the spine and spinal cord, you’ll see how well protected the spine is. Blunt force trauma like that is likely to break the spineous processes, and maybe even the verterbrae. If you’re lucky, it’ll nudge the vertebrae out of alignment. You might even manage to do some minor, and temporary, damage to the cord. But it won’t cause permanent paralysis. Then of course you have to find the right person to hit you the right way with said crow bar. Not as easy as it sounds either.

That link to the doctor’s site, he’s talking about spinal injuries, principally of the neck, through whiplash. He’s not talking about paralysis, but injuries causing long time pain. Plus he strikes me as the kind of “doctor” who is doing a hard sale on chiropractice.

@Phil, yes, these things can get quite complex when you start considering them.

 

7 On 28 March, 2010, Sophie said:

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Howard, Phil requires both his legs to be amputated, Sean requires to be a paraplegic, you might have gotten the two of them mixed up.

Black market surgery is highly risky and a lot more expensive than you seem to think. Not only would Sean have to pay for the actual surgery, he’d need money for the flights, accommodation, and he would need to pay for a friend to come to keep an eye on him. Even then I doubt he would be able to trust the surgeon fully to only do what Sean has paid him for.

 

8 On 28 March, 2010, howard said:

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i did not confuse sean and phil. sean wrote the article i was adressing him i know phil commented but i thought article was seans.i only was talking to sean,i couldnt imagine a safe sterile way to amputate both legs anyway.i apologize for confusing you.i did not know phil wanted dak surgury.

 

9 On 29 March, 2010, Martin said:

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Honestly!!!

You even mention the idea of your friend mortgaging her home or your doctor losing his license.

How bloody selfish! I have known people who’ve gotten all kinds of money help from friends, community, and church when illnesses like cancer or epilepsy were involved. But nobody dared ask anyone to mortgage their house.

That’s ridiculous!!

Also the doctor’s constraint isn’t just about keeping his license. It’s that little thing known as the Hippocratic Oath.

And if your mother and your friends aren’t convinced your life would be better as a paraplegic than they have some very good reasons for that belief.

 

10 On 29 March, 2010, Sean said:

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@Martin, note that I am not asking said friend to mortgage her house, nor am I asking my doctor to risk their license.

As for the Hippocratic Oath, I suggest that it is in fact doing much more harm to sit by as a spectator, while transabled individuals suffer, than to provide a physical impairment. They would chop off a leg if it was cancerous, why not provide a physical impairment when a condition impairs your day-to-day activities to that level? I’ve written more about that on biid-info.org

As for people who don’t have BIID not being convinced, of course they have good reasons. Their reasons! Just as we have good reasons to believe an impairment would help.

 

11 On 28 April, 2010, Rhayven said:

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As far as it goes- Sean – I’ve been reading things on the site for a while now.

I suffer from BIID too. Specifically – DAK Para >.>

As for what Howard is suggesting – that is not exactly … Reliable. I’ve thought of many different ways to do it – the only problem is the shear fact of risk involved.

Even with “all certainty” there is still uncertainty. I’ve read of people making homemade spinal blocks – dropping engine blocks on their spines, etc. etc.

The only problem is – When you need a specific thing to happen – this is not a reliable option.

Spinal block – That could easily cause unwanted, higher paralysis. As well as with the engine block.

The simple thing is – There is no simple way =/

 

12 On 19 December, 2010, David K. said:

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With the issues of the Hippocratic oath.

I’m reminded of another, somewhat, famous statement:

If you are not with me, then you are against me.

Perhaps this could be rephrased to:

If you do not [effectively] help me, then you harm me.

Sadly, that statement seems to ring all so true.

 

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About Sean

Sean is transabled. His body image is that of an L2 paraplegic. He has been living pretty much 100% of his public life from a wheelchair for the last decade, but hasn't found peace of mind (and is unlikely to until he does become a para).