Living Beyond the Diagnosis

Enough is enough.

You ever feel like there’s a demon living inside you, ticking off parts of your body like it’s going through a grocery list? I do. It’s called Multiple System Atrophy. MSA—this relentless, fucking ruthless demon that leaves nothing untouched. It doesn’t care who you are, how strong you’ve been, how much you’ve fought. It’s undefeated… So far.

I’m not asking why anymore. I’ve asked that enough. Why does this disease get to come in and destroy, unchecked? Why do people like me, like us, get chosen for this punishment? Science, with all its marvels, still can’t solve the puzzle. No cure. No promise of one. It’s maddening, like they’re searching for a ghost in the dark. But I’m not going to sit here and wait for a cure while this demon feasts on my legs, while it checks off my muscles like another victory for itself.

I felt it yesterday. That sickening, quiet moment when you’re still, lying in bed, and all you can feel is the demon chewing away at you. My calves. My hamstrings. That pulsating decay. It’s like a twisted countdown that I can’t stop. But I have to stop it. Or at least slow it down. I’m not about to sit here and let this bastard take my legs without a fight.

I’ve already watched it conquer parts of me I didn’t think it could touch. The autonomic system? Check. Bladder? Check. Bowels? Check. What’s next, huh? The muscles in my legs? Oh, it wants them bad, but I can’t let it have them. I won’t let it have them. It’ll have to fight me for every inch. Even if it’s inevitable. Even if it’s stronger than me. It’s about defiance, about never letting it win without feeling every ounce of resistance I have left.

What the hell can I use against something like this? What weapons do I have in this war? Is it exercise? Will pushing my body harder make any difference? Therapy? I can try to retrain what little control I have left. Acupuncture? Maybe it’ll slow the demon down, poke holes in its confidence. I don’t know the answers, but I’m not going to stop searching. I can’t. I’ve got to find something to load my gun with, something to fire back with, because lying down is not an option.

Every day is another battle. Another struggle just to maintain what I have left. I’m not stupid. I know MSA’s record. It’s never lost. But that doesn’t mean I’m going down quietly. Every morning I get up, every time I push through the pain, through the relentless assault on my muscles, I’m telling that demon, “You don’t get to win today.”

MSA is brutal because it takes everything that makes you feel like yourself, piece by piece, inch by inch. But that’s where it’s wrong. It can’t touch what’s inside, the fire, the defiance. It can take my legs, my muscles, my breath even, but it will never take me. That part’s untouchable. It’s what gets me up every day. It’s what keeps me fighting. Even if it feels hopeless.

So yeah, maybe science doesn’t have the answers. Maybe the cure is out of reach for now. But I’ve got something stronger than answers. I’ve got rage. I’ve got defiance. And every time I feel that demon creeping up on my legs, every time it thinks it’s about to take one more part of me, I’m going to remind it—I’m still standing.

For now. And that’s what counts.

This disease might think it’s unbeatable, but it’s gonna know, I’m not giving up!

~Coach~