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At its heart, MS is a thieving son of a bitch, a stone cold felon that pilfers from its victims with complete contempt and utter disregard. It takes both great and small, a kleptomaniac that steals everything from vital functionality to the simplest of pleasures. I'd never advocate for cruel and unusual punishment, but MS deserves to have its hands chopped off.
This past Wednesday night I got very little sleep, due to insomnia, an old friend from way back before Multiple Sclerosis muscled its way into my life. I maybe slept for two and half hours. Then the alarm went off, and I slowly pulled myself together and made ready to go to two doctors’ appointments. That might sound simple enough, but as anybody with advanced MS can tell you, even when fully rested, the effort of getting out of bed, dressed, and ready to venture out into the world can be exhausting enough to have you diving right back into bed. Nevertheless, I did some basic grooming, struggled into some clothes, and motored the wheelchair out onto the streets of the city. Happily, the weather outside was absolutely glorious.
First up was my primary care guy, a quick visit just to update him on all of info and insights that the NIH has gleaned from my trips down to Bethesda. My PCP is a truly decent human being, who's been a genuine ally throughout this whole MS ordeal, and I try my best to keep him apprised of all new developments. Then it was off to the pain doctor, just a few blocks away, to simply get a new prescription of pain meds that I take, ironically, to sleep. I had to wait a while to see the doctor, who was busy performing some kind of a procedure on a patient who I could hear screaming in the next room, but I got my prescriptions and was soon on my way.
Once outside, despite being exhausted, I decided to head down to the Hudson River, just because it was so incredibly nice out. I was out and about anyway, might as well take advantage of the day. Figured I could take some photos, and smoke a good cigar.
Yes, I do like the occasional stogie. I'm fully aware that cigars are vile and disgusting things, not to mention bad for you. But life would be unbearably dull devoid of all things that are vile and disgusting and bad for you, and MS prevents me from partaking in most of my old vile and disgusting pleasures. If you scratch just a little bit beneath my well studied Zen detachment and artistic pretensions, you'll find the makings of a cigar chomping, liquor swilling, poker playing good-for-nothing. I can't help it, I come by it naturally. It's genetic. My grandfather was a gangster (really).
So I headed down to the Hudson, along which the city has built a beautiful riverwalk/bike path/park, and found myself a nice little spot to light up and take in the view across the river. And that's just what I did, listening to some Afro Cuban All Stars tunes to complete my little feast for the senses. All was well, the cigar was as sweet as the music, and despite being tired, I staked out my own little claim on peace.
After savoring the smoke to its natural end, I set about taking some pictures. Soon, though, I was pounced on by a growing wave of nausea and an anvil crashing headache. I tried to ignore it, and then to fight through it, but the photos I was trying to take all sucked, and I was feeling worse by the second. MS was exacting its revenge. How dare I assert myself and claim some peace and pleasure. The beast would remind me just who was firmly at the controls. I started home, my internal monologue a stream of profanity whose target just couldn't give even the slightest damn.
Once back in my cage, I crawled from my chair to the bed and pretty much stayed there for the next 18 hours, trying to drown my miseries in the grip of sleep. MS dug deep into its bag of tricks, and hit me with all guns blazing, dishing out its full retinue of spasticity, spasms, weakness, and overall wretchedness. At last I slept, and after finally getting some rest, I got up and stared at the TV a bit, and then went back to bed. That one cigar wound up costing me the better part of two full days. I could hear my MS cackling maniacally, gaining strength from my weakness.
Damned disease, physical criminal, robber of all that's good. I'm generally slow to anger, but if MS took physical form in front of me, I'd use my good arm and leg to kick it straight in the nuts and claw its eyes out.
At least the disease served to remind me that anger is an energy, yet another vile and disgusting thing that's bad for you in large doses, but which every now and then, in the right spot, can do you world of good...