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Home / Thoughts / Sean's Thoughts / BIID, Une Mort Lente Et Tortueuse

BIID, Une Mort Lente Et Tortueuse

Written by Sean on Thursday, February 19, 2009

I am dying a slow and painful death. I have BIID. It does not have to be a life sentence with ongoing anguish and depression. But it is. Because there is no help to be had. Personne n’aide. Those who could help, won’t. Those who would help, can’t. How fucked is that?

Je me meurs. Je m’éffrite petit à petit. Each day that goes by sees another part of me chipped away. Soon, my body alone will remain, alive, bereft of spirit. But it seems that does not matter. Mon corps est la seule chose qu’ils veulent préserver. Who cares if my psyche evaporates, as long as my body remains intact, because, don’t you know, it would be unethical to harm that body.

And in the name of ethics, they’ll let me hurt. In the name of ethics, they’ll let YOU hurt. In the name of ethics, they’ll refuse to genetically modify embryos… Oh, wait, no, ethical research committees have approved *that* (and I’ll talk about that when I have more energy).

I need help. À l’aide. AYUTO! I NEED HELP. I am asking. I am begging. I am pleading. Help me, before it is too late. Help me, please.

But what’s to be done? Psychotherapy hasn’t helped. Pharmacotherapy hasn’t helped. The only thing left to try is paralysis. Surely, all these ethical committees would agree that paraplegia is better than death? Ou peut-être pas. Maybe they do think that I should be dead. Or maybe they think that the ongoing turmoil I experience is not so bad. They haven’t experienced it. If they had, they would not think that.

I want help. So often I’ve been told "you’re sick, go seek help", mostly by angry people with disabilities, or people in the public. Ok, I’m game. Tell me where to go to get help? Concrete and immediate help. Not a vague hope that maybe sometime in the future…

It’s interesting to think that there may be surgeon who might agree to do amputations for BIID. But these same surgeons would be opposed to providing spinal cord transections. It’s been about ten years since a couple elective surgeries were performed. Say surgery for amputee BIID becomes acceptable in another decade. Then it might take another few years for people to consider spinal cord transection as a possibility. They might get over their prejudice of the negative impact of paralysis on one’s life. Then a few more years again before they start experimenting, and yet another ten years before it becomes acceptable. And this is a best case scenario. I’m looking at nearly 30 years here. I’ll be well in my old age by then. Too late for me.

Mes amis et amies me disent de tenir le coup. "Hang on" they say. Mais pourquoi? Why the fuck should I continue to hang on, to witness my own slow and tortuous death, when there is no real logical hope for me anyway? At which point does tenacity become ludicrous? At which point does one become pathetic, hoping against hope that they might finally find a peace they’ve never known, knowing full well that the only thing that would help is refused to them?

And one of the most frustrating aspects of it all is that there’s no one I can go yell at. I can’t picket a surgeon’s door. I can’t write letters to the editor. I can’t blackmail a hospital. I can’t bang my head against the Board of Directors of a hospital. I feel I have done all I could to be heard by the right people. I fear I have not been heard by the right people. J’en ai bien peur. J’en suis bien triste. Tristesse lasse. Désespoir violent.

Je suis vide, une carcasse inutile. I have become an empty shell of my own self.

Where shall I go? What shall I do?

Tags: BIID, Doctor, Ethics, Hospital, Paralysis, Paraplegia, Spinal Cord Transection, Surgery

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