Sunday, 4 January 2015

What do I need?

My brother just asked me if I need anything, before he goes to bed. The list goes on unending.


I need to be able to sleep comfortably, without waking up a dozen or more times in pain, for the first time in almost a year.

I need to be able to open and close my hands again, like I used to.

I need to be able to function like a real human being without taking four dozen pills every day.

I need to be able to go ONE day without having to rely on narcotics to hold back the incessant pains of my worthless body.

I need to be able to stand up on my own two feet again, instead of being trapped and crippled on nerve-deadened legs that somehow still feel pain even if they don't move.

I need to not have to kill myself trying to rebuild muscle around dead nerves, trying to regain some control of my extremities.

I need a doctor who can actually give me answers better than: "You have a zero to one hundred percent chance of a full recovery. Why not try taking a drug derived from known teratogen Thalidomide? It might possibly maybe help you and it is slightly less than fifteen thousand dollars per month."

I need an oncologist who can tell me if the cancer is gone or if this starts all over again in one, two, five years' time.

I need the strength to face one more day in this fucking husk I am trapped in.

or I need the strength to put an end to my misery in spite of my friends and loved ones.

I am so fucking sick of having to live as a cripple. It has been eleven months since I started losing myself. Of those eleven months, seven have been spent in various hospitals. First my hands curled into themselves as the nerves died, myelin sheathing ripped away by my own misguided immune system, reducing me to hammering away at this keyboard like baby's first typewriter. Then my legs: the last time I stood on my own two feet was March 3rd, when my legs finally gave out and I started my long, long fall.

Hands and feet were followed soon after by happiness, freedom, independence, joy, dignity, self-respect, privacy, hope (killed by my many physicians, bit by bit as they revealed their ignorance and inability) and life as a human being instead of a potted plant.

Friends and family urge me on, help me, support me. Not a moment passes that I don't hate myself for being so helpless.

I promised myself when I was young, when I first heard about Alzheimer's, that I would take my life before I lost myself this way. That loss of my mind has been my secret, midnight terror since I was a child.

This... is almost as bad. Forced dependency, near-total helplessness, loss not of mental but of physical faculties... and always the unanswered question, because the doctors have no answers. There are no answers to give because none of them have seen a case like mine. POEMS syndrome is, apparently, vanishingly uncommon and supposedly unheard of in someone so young. The nerve damage is peripheral... who knows, I might get it all back... or some. Or none at all. Or the myeloma could wake back up and drop me even further down, all the way to living as a vegetable on a respirator, pissing and shitting myself until someone is kind enough to put me out of my misery. No one knows, and faithless as I am, all I am left with is my reason, and my misery.

My misery.

My misery is boundless. Unending. Agonizing, every day. I cannot do the simplest of tasks, for all that I have clawed back some control with my toil, sweat and ten million aches and twinges and pains. Look ma, ONE of my hands almost works. Kinda, sorta, a bit. Except that there is no strength in it even if I have partial range of motion. And if I hadn't broken both knees along with my ankles three months ago, they could bend a little, on command. These are the little victories I am supposed to fuel myself with.

My misery haunts me, and try as I might I can only distract myself so long before something drives it home. Having to piss in a bottle because I can't walk to the bathroom. Trying for twenty minutes (and failing) to tie my hair back with an elastic. Downing narcotics just to be able to fall asleep every night.

This stopped being life a long time ago. This is just existence. A prison sentence, and the cell is my own body. Except a convict tends to know their sentence. Am I facing life imprisonment, or parole in six months? Or maybe dumped into solitary instead? It's a mystery to all.

I haven't looked in a mirror in at least six months. I hate what I see there. I never loved myself, but I have truly come to loathe this thing I have become.

I was asking to die in April, when they were running me through every test under the sun. I was planning to die in June, when they told me congratulations, you're marginally functional and we're bored of staring at a problem we can't fix, and dumped me out of rehab onto a family entirely unready to deal with my affliction.

I was wanting to die, just not alone, in July when every single individual or organization who had promised me help failed me within two weeks of moving in with my retired parents.

I was begging to die on the shower tile, tears in my eyes from my shattered joints, screaming for a bullet.

I was still begging to die five days later when they finally found painkillers that sort of worked. And two weeks later when they cut them and I woke up from my drugged stupor. Those two weeks of blankness and vague memories are the very best time I have had since February. The closest thing to an escape I have found since my flirtation with alcoholism years ago.

And I am looking ahead, to the one year anniversary of this hell, and thinking about my promise to my doctors, family and myself that I would push and fight and work for one year. One year, I would live like this and fight to get back on my feet. But if I wasn't 100% in a year, I was done.

A year has been enough to know I hate living like a cripple. A year was long enough to say my goodbyes to everyone who mattered.

2014 has been the worst year of my life. A nightmare I can't wake from. A year of knowing just how much happier I would be if I just died in my sleep instead of facing another day of slogging towards... what? Some fraction of normalcy? Some vainglorious hope of a total recovery?

I hate this life. It isn't worth it. If there is a god, then I humbly submit that mankind's task is Titanomachy: we grow to be equal with our creator so we might kill the tyrannical monster who has so afflicted the universe, and then set ourselves to the reordering of things in a more reasonable manner.

What do I need, Tom?

To set my mind and my family free of all this useless dead weight weighing us down.

Because of all the things in the world, there are only two I look forward to anymore: learning to walk again, so I can get away from everyone forever because I never want to rely on anyone for anything ever again...

And as quick and painless a death as I can manage with crippled hands and zero aid, because I am coming more and more to crave the only peace and comfort my imagination can devise.

I died March 3rd, 2014. The frustrating thing is that no one else seems to have noticed. Fooled by the semblance of life in this still-warm corpse I'm haunting.

I need my family to let me go, because I am so very very exhausted with this meat-puppetry.

I need to stop hurting, and the only way I have left is to die.

...

So no, I didn't get what I really wanted for capitalismas this year. Why do you ask?

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