My favorite doctor (beyond the one who is my friend and isn’t MY doctor) once told me I’m one of his favorite patients because despite feeling like a walking pile of explosive crap, I’m kind and have a great attitude. Clearly, he doesn’t read my blog. He was actually speaking to my Mom, who was at the appointment with me and not directly TO me, but it still made me blush. It’s also possible he was sucking up to my Mom but let’s just pretend he wasn’t.
This person he’s talking about isn’t me. He, as well as all of my other doctors, know the version of me that will smile, laugh, and joke around even when I have a dozen catheters and tubes poking out of my body or am going through a painful procedure. The one who seems to be unphased by all that is happening to her.
The truth is this: I hide behind humor and sarcasm. I’m not happy. I’m not coping. I’m miserable. I don’t allow these feelings to show because it makes others uncomfortable. I can’t do that. Sure, if you read this blog, you likely have a closer approximation of who I really am than all but the closest of my friends do, but that doesn’t mean I don’t use the same front here occasionally in order to make what I write easier to digest. If I don’t think I can pull it off, then I’m inclined not to write at all. How do I make a joke about a staph infection and going into respiratory failure or needing an organ transplant?
For example, a recent password protected post. I don’t suppose talk of suicide is easy for most to digest, so I left it as it is and haven’t shared it with a single person. It’s a battle between my will to live, which appears to be much stronger than I was aware of, and my need for relief. It’s difficult to not go to that place while dealing with what I have been over the past several months and years. Or maybe this would be easier for someone else. I have no idea.
This isn’t strength. I think anyone would do the same thing in my position, weak or not. When you’re faced with a choice of THIS or DEATH, I think you’ll find a reason to put up with a hellish amount of bullshit if it means you’ll wake up tomorrow. Whether it’s because you love life, love the idea of not dying, or because you love the people in your life, there’s a reason for you to stick around.
Every day it gets more difficult to find a reason. I wake up every morning for labs and wonder if today is the day I take my life into my own hands and drag myself out the door. Am I making the right decisions? What’s going to happen when I lose health insurance next year if I’m required to take several different immunosuppressants to keep my body from attacking my new parts? I won’t be able to afford the drugs. I won’t be able to afford follow-up care, let alone seeing the minimum of four specialists to surveil and treat my various conditions. Is a one-year extension of my life worth it knowing what I have to look forward to when I get home? Will I be able to travel, or will I be sick as fuck until I die? It’s the uncertainty that gets to me.
Not being able to predict the future and feeling completely out of control. If I knew for a fact that all of the pain I’m going through now is worth it, in the long run, I wouldn’t give it a second thought. The realistic part of me knows that I may live longer if all goes well, but I’ll still be sick.
I’m not okay. To say otherwise is a lie.