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.