Ok, so here’s the dealio, yo. This has been a frenetic month. And year. And however fucking long it’s been since I’ve written anything here. I keep saying “I need to write” but I never “have the time”. When I’m out, I’m busy busy busy and when I’m home I’m sleeping sleeping sleeping or watching TV with my eyes closed. Never time, never time.
Well, fuck that! I’m writing this on the subway, on my way to an appointment, then a workshop, then a walk-in counselling clinic. I’m publishing it from the hospital wi-fi. It’s time to take back control over my life, no what matter what the fuck is going on in it. Things are not ever going to fully settle down. I have chronic, progressive, incurable diseases. That will never change.
Great Potato, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
So many of us with chronic illnesses live with crushing uncertainty. It feels like we’re shuffling from doctor to doctor trying to find answers that never come. And sometimes the answer is “there’s nothing more we can do” and that’s the most crushing answer of all. I know it’s not just me who lives this way. We’re fucking legion out there.
It’s time to take back the reins and be the drivers of our lives.
It’s time to live again.
I’ve been saving all my hospital bracelets for a year. Call it part hoarding tendency and part trophy. “I made it through the day. I survived.”
Sometimes it seems like there’s a parade of chimpanzees around every corner waiting to throw more shit at my head while I’m just trying to make it through the day.
I’m working on the hoarding. I used to see my stuff as showcasing my personality. Now I just see it as what somebody will have to throw away when I’m gone. I know that’s dark, but if there’s one thing I’ve learned this year it’s that nothing can last forever. No one expects their last Facebook post before dying to be some stupid buzzfeed quiz, but sometimes that’s exactly what happens. You don’t get to prepare.
I’ve taken morbid solace in believing I would die before everyone I know. I imagine being dead is easy; it’s only hard for those left behind. It was comforting to believe I would never be one of those left behind.
So I kept these bracelets as trophies. I wanted to make art with them. I said many years ago that what I wanted to do with my life was take all this pain and turn it into something beautiful. But life keeps getting in the way. It feels like I hardly catch my breath before running from those fucking chimpanzees again.
Life’s hard and shit happens, but we all manage to muddle through…even when every day rains hard decisions…even when each new day brings new pain. So far, I’ve been pretty damn good at surviving. I can take the physical pain. But the emotional pain…it just gets put on the shelf to be dealt with later and it only adds to the hoard.
So here’s a moment of silence for those lost and left behind. And here’s a year’s worth of reminders, finally going into the garbage where they belong.