i take it all back

I was given a life sentence for no crime.

Diagnosed with autoimmune hepatitis, and 4 years late. Almost two weeks too late to be standing here telling you my story, opposed to a friend, sibling, or parent telling it for me; choking back the tears as the words scrape the sides of their throat trying to force them out through the tears willing themselves to seep down their cheeks.

No cure, no research and a constant fight against my own body. Im killing myself to stay alive. Every day I wake up, I am sick. Every day, good, bad, and anything within the range between, I am sick. On every birthday, my wedding day, the day my first child is born, the day every one of my children is born, every milestone I wish to accomplish and celebrate, I will be sick. I am often praised for my strength. But I wouldn’t be strong if I didn’t have to be. Simply put, it’s much easier to be strong when it’s your only choice. Stripped of the ability to be weak, shackled to the term strong unwillingly. So here, I stand, sick and strong within it.

Alongside being told I am strong, I am told that everything happens for a reason. I try so hard to resonate, and often I find myself with a blank page when listing reasons this could have happened. Karma for past actions, motivation for future change. I’m not sure if there is a definitive reason, so I decided to make my own. And this is it: I may have no choice but to be strong, but here I speak so maybe one day another girl who all she ever wishes for on her birthday is to be healthy, to be normal, doesn’t have to be.

I don’t want my story to be the story for every child or young adult diagnosed with this disease or any rare disease for that matter. I don’t want communities to watch their neighbor ache in a world of hopelessness. I want their story to be one with options, cures, and a future where their diagnosis isn’t a life sentence. A future with hope for a better life. A future where they aren’t unfixable, or a lost cause. I’ve been given multiple band aids, never a solution. I don’t want to be able to relate to other kids. I’m not normal, and my story shouldn’t be either.

I was taught to use my voice even if it shakes. I was taught to stand up for what I believe in even if my legs get tired taking me to these places. I was taught to speak for people who couldn’t speak for themselves. To shine light in the dark and pick up what is swept under the rug. I’ve looked my ending in the face, shook its hand and turned the other way. My life isn’t normal, but neither am I. I think that might just get me where most people don’t reach. So no matter how many times I’ve said it in the past, I take it back. I don’t want to be normal. I just want to be fixable.