Living with the limitations of a disability

This post, like others that will follow it, is a continuation of my Gambling On Life series.

"I could never live with that kind of pain."

"I don't know what I'd do if I couldn't do X."

"I would kill myself if I had to live with Y."

I have heard so many variations of these statements over the years that tend to just smile and nod anymore, taking it as a compliment rather than the person providing an alternative voice to the one in their head whispering "better you than me."

I'm going to open up the big book of spoonie secrets for you folks, however. Seriously, this is top-tier info I'm breaking opsec for here, so.. You know.. drop a buck or two in the tip jar.

You ready?

Here it is.

The big secret truth to living with chronic illness:

You fucking get used to it.

Ok, seriously though, let's expand on that a bit.. Shall we?

I've been considering writing this one for a while, and today seemed appropriate: I'm fighting some heavy-ass fucking (or heavy ass-fucking, since my back is also having issues) murder-pain this morning, and am having trouble focusing on code because I just want to let the vulgarity flow like shit flies out of Trump's mouth (Foxtrot Delta Tango).

Anyway, here's a slightly longer explanation for how folks like myself live with chronic pain and illness.

In my case, I was born kinda broken. Asthma, allergies and immune issues started off the party. These kept me from doing a lot of things to begin with, which means I have less to miss. Later on in my pre-teens arthritis manifested itself, as did what I now know is nerve pain, which continued to limit my activities.

Of course, things got worse, and I later had to give up things I loved.

I had to give up trombone & bass trombone - instruments I was fucking talented at - thanks to TMJ disorder. Lately I've even been unable to play guitar or piano; I try to pick up a guitar every couple of months just to keep up the muscle memory a bit, but I'm far from what I once was on the instruments.

Drawing, painting, some forms of gaming, and even walking are severely limited now in my repository of skills of possibly some fucking worth.

So, how do I cope with giving those things up? The things I love? The things that people consider a basic fucking requirement for survival?

One: I accept that shit changes, and I've learned to work around it. That's the real key: Finding joy-adjacent activities to what you were once able to do.

For music? I can still sequence shit in the studio, and can play little riffs here and there and cut them together as-needed. For art? I do illusrations digitally with things like the pen tool, explore new methods of creation (such as my latest creative coding project), and more. For walking? Well, that one kinda still sucks; I have my cane, but it's not exactly a joy to walk appreciable distances most days (especially today - fuck today).

I do get to brandish it at the kids, though, and can get away with smashing assholes toes in a pinch while feigning ignorance as I hobble down the sidewalk.

That's it, really. You get used to the limitations, and either find ways to work around them, or find new things to do that bring you an equal amount of joy where applicable.

Now, I do want to say one thing briefly about a massive fucking elephant on many of my fellow spoonies' chests:

Sometimes, when there is no other option available and your life becomes entirely consumed by pain with no end in sight, you may want to choose to return to the stardust.. And that's ok. I just hope those who consider it have taken the time to embrace a semi-colon, speak with professionals (and your fellow spoonies), and explore all other options first.

Pain is deeply personal, and ultimately, how you live is your choice. Just know that in the alphabet-soup for spoonies is a number of semi-colons you should check out before you take the period.

Also, big thanks to Ada Rook for creating some amazing music to distract me from the pain while I write. I hate that fucking mouse.