I am not alone. Not even a little bit. I know this with every fiber of my being.
My husband is with me every moment of every day. Anyone who has experienced it knows that a partner’s unexpected serious illness is as difficult an experience as anyone can have, but I know without any doubt that he is with me for the long haul. I hate that he has to go through this, because none of us want people we love to experience hardship. I know in my logical mind that this is not my fault—I did nothing to get the genes that I have—but most of the time, I still feel like it is.
The mother of my heart flew all the way across the country (literally) to give me a hug, because she knew I needed one, and because she knew my mom would have wanted her to.
I have friends who (again, literally) saved my life. I have friends who will—at any moment and without any kind of warning—drop everything the second I pick up the phone or post something.
One of the most fucked-up things about illness, though, is that sometimes I feel completely alone. Isolated. Like the timer on my life has already run out and there’s nothing I can do about it.
Melodramatic? Yeah, sure it is. I know that too. But sometimes—usually late at night or early in the morning—I can’t help feeling this way. I feel like I have little control over my destiny. I wonder what I did to deserve this (I wonder that a lot). I know all any of us has is this day, this moment, but if we’re honest, we also count on tomorrow, next week, next month, next year…right?
I’m also terrified of the day when the United States government takes away my access to the doctors and nurses and medication and treatment I need to stay alive. I do realize this is also a somewhat illogical fear at this point, but I’d be lying if I said it wasn’t with me these days.
The drugs I’m taking are amazing (go, science!), and I’m grateful for them. They do have certain side effects, though. If I believe what I read online—and I’m inclined to—some people suffer with these side effects far more than I do. But they’re there, and they’re incredibly frustrating. I’m learning to live with them, though.
My point here is not to go all Debbie Downer on your day. I want to be clear that I’m ok. I’m throwing this out into the world because I hope that my writing it down and sharing it, I can let it go.
Because I am not alone.