Five

Five years ago today, my life was split in two. My life B.C. (Before Crisis) and A.D. (After Diagnosis)

Five years ago I was told I was going to die. Pretty horribly. My prognosis wasn’t great. ALS typically kills you in 3 to 5 years. I had a feeling I had a few years – my progression was pretty slow. Six months after exhibiting any symptoms, I was still on my feet with no assistance, no degradation in my hands, breathing was excellent, swallowing and speech still perfect.

Only ten percent of people with ALS live longer than 10 years. I optimistically vowed to be among them. (….as if I have any control.)

It’s five years later, and I’m still doing pretty well, all things considered. I may make ten years yet, though I don’t think so, honestly. I’m definitely showing signs of wear. I can no longer stand, let alone walk, without assistance. When I try REAL hard, I can still sliiiiightly move the big toe of my left foot sometimes. My hands are near useless garbage meat noodles,
my posture like a T.Rex . I can curl my fingers in but not flex them out, the only digits I still have some control over is my thumbs. I type with the knuckles of my index fingers. Bladder control is completely a thing of the past. My breathing is getting shitty, but it’s nothing I need assistance with, yet.

This last month, I’ve started to exhibit bulbar symptoms. Mannnnnnnnnnnnnn it’s hard to admit that. I’ve been biting my tongue in my sleep, but luckily I already had a night guard so it’s not a problem. No choking or drooling or slurring yet, but my tongue sometimes gets a little tired if I’m eating something really chewy or hard.

It’s not the end of me, but I’m starting to think I can see it from here.

Not sure I’ve got another five years, but I’m going to try like hell. I’m pretty confident I won’t make it to fifty years old. (..This disease sucks, man, don’t get it.)

BUT.

BUT!!!

I have outlived the average. Some folks don’t even get one year. I’ve gotten FIVE. So far. It’s been such a rare privilege to make friends with my own death, to know what’s coming and have a chance to plan for it. My employer had amazing benefits and was completely understanding. My friends, my circle, they have my back in ways I never would have dared to expect. I was already death positive and prepared to think about my own demise in very real ways. I am doing SO WELL, all things considered. I was positioned to handle this with some grace and lots of support.

This sucks, but it could have been so. much. worse.

Tonight, instead of mourning my life that won’t be, I can celebrate the life I’ve had so far. Old school – I’m throwing a freaking pizza party to mark beating the typical prognosis. It’s going to be great to be with my planets, to eat and have some laughs and be grateful for five years of life so far. A very full life containing an amazing cast, fantastic sets, a very interesting plot. I will have hopefully been a source of light for someone, a sliver of kindness, maybe a laugh or two. I have cool tattoos and cute cats and enough stickers to have my own boutique. I am eating delicious things with the best people.

When people ask how I’m doing, I tell them “so far, so good”.

And I really, truly mean it. My life, she don’t suck, you know?

Here’s to another five years. Let’s see where this road leads.

2 thoughts on “Five

  1. The disease sucks, but not your life.
    I hope you’ll be posting for many years to come about perspectives on joy amidst the chaos.
    You always give me hope that my own brain can choose the good.

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