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Missing Person

Wednesday, April 8th, 2015 by

I haven’t been around much lately. I haven’t updated my Patreon in months. I haven’t posted much here either. I have a good reason for it.

It has been over three weeks since I have eaten solid food.

As part of my complex, multiorgan illness, I suffer from digestive tract paralysis. It’s an enigmatic, and for the most part, untreatable disease. It has rapidly progressed in the past six months, and I can no longer tolerate anything more substantive than clear liquids.

As a result, I am being fed through my veins until my gut has had enough rest. This process, known as total parenteral nutrition (TPN), is one which I find myself simultaneously terribly resentful of and immensely grateful for. This is not the first time I have been on TPN, nor will it, I imagine, be the last. (At least, I hope it will not be the last. The possibility of this lasting forever is too bleak for my mind to accept.)

I am adjusting to life on TPN. It dangerous, but it is not terrible. I have a bandage-wrapped IV line in my arm that never comes out and itches. I have a bag of nutrients and fluid to lug around for twelve hours a day. I have new and deadly risks to live with that require me to go to the emergency room at the slightest sign of them. These things are irritating, but immeasurably better than constant pain and nausea, than malnourishment and untrollable weight loss.

I am in mourning. I miss food. I miss being able to fully partake in the social activities that revolve around it without huge amounts of stress. I miss feeling properly human. The urge to eat is so primal, the lack of the ability to do so has plunged me into a pool of identity loss. I feel more artificial than animal.

Being chronically ill can be terribly isolating. I  feel as if I’m outside of my “real” life, looking in at what could be, what “should” be, unable to reach it, as it passes by, without me. And I grieve and give voice to my grief, and if anyone happens to hear, they usually don’t know what to say, so they don’t say anything. I know people care and don’t know how to express it, but their silence adds to the feelings of loneliness. I see them express more sympathy over the flu than ten days in the hospital. I know why. The flu is relatable. People have had the flu, and they know it sucks. But few people know the grief I’m experiencing, and they don’t know how to relate. And so they say nothing, and I feel alone.

And what of the boy? He is wonderful, as always. He is my light in the darkness, my breath of fresh air, and all the other clichés that spring to a love-drunk mind. He does what he can, and it is more than enough. He makes me chicken broth and fancy drinks. He helps me with. But part of me worries that he will miss the woman he could cook for, the woman he could go out to eat with, the woman whose body and mind weren’t so brittle and breakable. And that my lack of ability to lead a “real” life will outshadow his love for me. And part of me feels I will never deserve the sort of sweetness he gives me, and that he will realize it. I fear this terrible thing, this thing I have no control over, will kill his love for me. Bad enough that it should kill me.

3 Responses to “Missing Person”

  1. Fizz says:

    The metaphor is unfortunate in context, but the principle still stands: http://captainawkward.com/2012/02/13/190-the-sandwich-means-i-love-you-a-valentine/

  2. Ferns says:

    I think you are so right about people not knowing what to say. I often don’t know what to say. It’s unimaginable and in the face of it, as an outsider, an observer, it feels *flailing about for the right word* pathetic to say some useless words that actually don’t help anything. Platitudes, cliches, stupid shit.

    But I know for my own self when terrible things have happened, kind words from strangers helped, at least someone is listening, had heard me, reached out with sweetness, even if it didn’t, in any practical way, make a whit of difference.

    So throwing words at you: You are so strong in the face of your health issues, even if you don’t feel like it. It’s a thing, I promise. And I’m so glad you have peroxide and I hear your fears with him, but I know how happy you make him and love is love and he is lucky to have you. I wish so fervently that your health improves, that you get to enjoy him and dancing and gym and food and all of the things we take for granted.

    And when I don’t know what to say (which is often and always), I might just throw virtual hugs at you if that’s okay.



  3. Blackbox says:

    Sometimes I’m in a situation of wanting to support someone who is going through something that is way beyond what I’ve ever been through. Clearly, I can’t relate, and attempting to pretend to or offer advice is disingenuious. It’s difficult to remember, but I usually just try to ask questions and get them talking. Invariably, I’m surprised by their actual feelings. Obvious ways it should be hard that don’t bother them at all. Little niggling details you’d never expect that change everything.

    At the risk of getting trite, I wish more people knew that. I wish I had the opportunity to teach them and thus help the people close to them.

    Anyway, I cannot begin to relate, but I’m happy to read anything you post, just to listen. You’ve been in my RSS reader for years, I’m happy to hear from you.

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