October 20, 2023

“I’m searching for a phrase that will release everything that’s pent up in me.” – Henry Miller

I’m so resentful of this life. I don’t even think to call this a life would be fair. I just don’t think humans were built for this kind of suffering. I wasn’t. And yet, it’s all that I do. Despite the pills I choke down, besides the invasive treatments I put my body through, despite any kind of medical intervention I can afford or physically withstand, no relief ever comes. I just suffer. And it’s insurmountable.

There are moments where my body is so weak, so fatigued, so drained, that I can’t even sit up to eat when I’m hungry. So I have to wait. I have to wait until I feel strong enough to prop myself up before I can eat. And how do you explain that to someone? You can’t. If you do, you’ll be met with blank stares or disbelief or some kind of reaction that makes you not feel comfortable sharing anything further. Words fail to describe this kind of fatigue, this muscle weakness, this physical torture.

It’s devastating to lose your life, your livelihood, your sense of the world. I’m so unfamiliar with things that a part of everyone else’s daily life. I can’t remember the last time I was in a grocery store. I don’t remember the last time I put on mascara or wore high heels. I don’t remember the last party I attended, or whose it was. The last time I drove myself somewhere. The last time I cooked a meal and used the stove. All I know is that it wasn’t supposed to be this way. Living shouldn’t wreak havoc on someone’s body. I shouldn’t be punished for hours or days on end because I wanted to FaceTime my friends to see their faces or because I needed to go to a doctor’s appointment. I don’t even have enough stamina to write out everything that I want to. I can’t get out everything that I need to. So it just lives inside me.

No one will ever take your illness as seriously as it actually is because it isn’t happening to them. And sometimes, unfortunately, I think this leads to people being careless and cruel with what they say. Careless especially. That’s the word that drums on repeat in my head after most conversations about my illnesses. People will try to minimize what you’re going through and they will say the most dismissive, unsympathetic, hurtful things to you. So there are times when I want to grab them by the shoulders and ask, “don’t you understand what’s happened to me? Wouldn’t this ruin you too?”

My body has become so breakable, so fragile, so unrecognizable. My life has been shattered by my illnesses. And my heart has been broken for all the times I’ve been misunderstood or disregarded or invalidated because of it.