The grief I carry

I was 19 when my health declined. I was a child. I had no sense of what or who I wanted to be. I thought I had my whole life ahead of me. I thought I’d already experienced the worst thing I’d experience in my life, but my every day is now the absolute worst. My life was ripped out from under me before I had the chance to figure out my hopes and dreams. I lost my future before I even built it. I didn’t have the chance to build up my dreams and find my passions and have them be shattered. They were robbed from me before I got to even name them. I never got to “figure out who I want to be”… I was left to figured out how to survive in a body that makes my life absolutely miserable. I’m stuck forever grieving all the versions of me that I thought were possible, but will no longer see.

I’m alone in it. When people say they understand, they don’t. They don’t understand my life, my body, my symptoms, my experiences. It’s taken everything from me. Not everyone knows what it’s like to wake up feeling worse than you did the night before, only to have that feeling stack up upon you for years and years. My body aches with burning exhaustion. I’ve expended the last of my energy 3 years ago. But the only option I have left is to scrape by completely alone…

I have things I want to do and experience, but I either can’t, or my body punishes me so badly that I realize over and over again that it’s not worth it. Living life, and experiencing joy and happiness, is a punishment now. I get this glimpse of what life could look like- to laugh, to move, to live. And now I sit in the wreckage of it. Of course I’m grieving. Everything I once was is no more. It’s not fair joy has a price. I’m grieving my health, my identify, my passions, my capacity to care… because I’ve lost it all. I’m a shell of a person. I don’t recognize myself. I’ve been begging for help for years. I’ve been doing what I can, been dragging myself through pain and exhaustion, reaching out, trying new things, and ignoring the part of me that can imagine how reliving it would be to die. And what have I gotten? Worse. Not better. Not easier. Just more weight on my shoulders, more layers of loss, more proof that my life demands more than what I have the ability to give. It feels impossible to believe anything could change. And my brain is being honest for believing that. It’s trying to protect me from more false hope, more disappointment, and more of that crushing wait for relief that never comes. My brain is just looking for any exit from the pain at this point.

People tell me to be happy. They don’t see this part. They don’t carry this feeling, of what once was, and what will no longer be. I’m drowning, and hearing the words “maybe someday you’ll be on shore again” doesn’t help when I’m gasping for air right now. I grieve the hope I can no longer feel. It’s not the illness, it’s being alone in the illness. And it’s the endless mourning. Where’s the life I want? Why is this the life I was given? Why am I stuck in this cycle of acceptance and sorrow that never ends?

I’ve lost everything. And I have nothing. And I have no one. And I am nothing. And I am no one.