Fuelled by Spite: A Comfort in the Shadows

I hate hope and inspiration. It just doesn't work for me. It's not some "fear to hope" or "fear to be inspired" because I'll fail or be disappointed or any of the old cliches. It's a temperament thing. I've always been a little ornery and seemingly predisposed to gravitate to the darkness rather than the light.

I like extreme music and extreme art. I'm drawn to the grotesque and find beauty in things many of my peers find ugly. It's not that I can't enjoy the daisies, but I'm just as drawn to the maggots. I have about a million theories as to why this is the case, but, like everything, it probably boils down to one of the fundamental tenets of human nature: we're shaped by our lived experiences and our genetic predispositions - nature and nurture, etc.

The road to balance

I had a bit of a rough go pre-MS. Sure, life could always be worse. Eating glass is arguably worse than eating rocks, but they both still suck. Someone I loved dearly died in front of me when I was young; unresolved grief led me down a path of addiction. Desperation made me stay in abusive situations much longer than I should have, and it was a long road to recovery. Slowly, with a lot of help, support, and accountability, I reached a level of stability I had never had.

The shift

When MS came into my life in my late 20s, I could hardly believe it, yet, I was expecting something like it. Things had been too stable for too long, and I was starting to get antsy by the comfort of it all. I just didn't know what it was going to be. When it happened, I was reeling. What do I do? I'm a different person now. A better person. Surely I need to reach for the positives, hang onto them for dear life, and do everything and anything in my power to stave off the darkness that was unhinging its jaw to consume me. Same darkness, different disguise. But everyone was telling me that this darkness was different than all of the other darknesses. If I succumbed to it, I would get sick faster. This was a darkness with serious physical repercussions. I could make it bearable with positivity.

I wrote about it with positive spins. I leaned into, "It could always be worse," and "I can no longer do some of the things that make me happy, but it's okay; I'm trucking along." I did yoga and meditated, and people commended me on never giving up. I was a liar, at least about the latter. Though I could be eating glass, I was not okay with eating rocks. I couldn't have given up because I hadn't even begun to be honest with anyone, least of all myself.

Returning to my roots

I've spent the last year returning to my angsty, spiteful roots. But I've been learning how to channel all that unbridled rage into spite that propels me forward, regardless of what MS chooses to take from me. When I lost the ability to play instruments, I thought my life was over. Spite pushed me through. When drop-foot affected my gait and forced me to use a walker and sometimes wheelchair, spite got me out of bed when all I wanted to do was sleep it all away.

It was like a homecoming. A return to myself. Gone are the little sticky notes with words like, "Hang in there, baby" and "You got this." Here to stay are the angry songs and poems no one will read, the catharsis of sitting in a dark room with the saddest music I can find, and the ever-burning power of spite propelling me through my most desperate times. That is what's comfortable for me. Sitting in the darkness, sometimes quietly, other times cacophonously, but always defiantly.

Maybe there aren't many others on here like me, but I write this in case there's even one person who might find solidarity in my words.

There are lots of ways to be okay with an MS life.

Thanks for reading.

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