It’s Just One of Those MS ‘Snow Days’
“Rage, rage against the dying of the light,” Dylan Thomas wrote in his famous poem about us humans fighting, against all odds, the inevitable moment of death.
Oh, yes, I went there. I’m starting with the dark and seeing if I can pull it back with a swath of lightheartedness. Probably not, but hopefully, I’ve got your attention now.
My fight is with aggressive MS. I’m driving on through, no matter what it throws at me. Sheer will and all that.
That’s always been my way. I’m not obstinate, just dogged. I was never interested in climbing mountains or walking across the South Pole, just striving away in the arts. We all pick our windmills — except, aggressive MS picked me!
I started writing this column on Tuesday and felt reasonably invigorated. The previous day, I had given up. During my routine shower, I slumped into that severe fugue state of fatigue that MS likes to induce. Oh, the joys of having to use an anal catheter every day — hence the shower.
Actually, it is a joy. There’s no more straining on a commode for hours, especially since I can no longer climb onto it by myself. Now I can spend the day with that jolly old ring of confidence!
So, I acquiesced to being put to bed for a couple of hours. The hours stretched to dinnertime, which I did get up for. Then, guess what? Time to prepare for bed. It was back to my wet room for a wee and a brush of them thar teeth. It takes quite a while, as I have little room to play with while I’m in my powered chair. I don’t dare go in there properly, as the last time I did, I ripped my shower apart.
There’s plenty of room on my dual commode and shower chair, however. Yes, it’s a tad ironic to take my own toilette next to the actual toilet, which of course I can no longer aspire to clambering onto. Thankfully, it’s just a truly bog-standard bog.
I’d ruminated on a special disabled toilet that adapted those wonderful Japanese ones that treat your derrière like a posh car wash, circa 5,000 pounds ($6,800), which I only would’ve been able to use for about six months.
I knew I had aggressive MS. My neurologist had been putting the phrase in his letters to me for years. But my normal pessimism seems to have been replaced by optimism. Maybe it’s the way we humans keep going. Even now, researching the research about MS professionally for this website as a moderator for the MS News Today Forums in the past few years didn’t allow the gravity of aggressive MS to sink in.
Sorry, I promised at least a sprinkling of humor, and I have failed.
Even during my stay in bed I chose to watch the harrowing film “Destroyer.” Then, to cheer myself up, I started on the third series of Netflix’s excellent comedy “Miracle Workers.” The miracle, however, didn’t cut through my ennui.
Still, today the sun is shining, and Frank Sinatra’s jazz-inflected croon is purring through my speakers.
I’m glad I accepted my MS “snow day.”
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About the Author
Cynthia MacFarlane
Thank you John , for your uplifting thoughts.During this past year especially , your columns have brought much encouragement.
Caroline Borduin
I have SPMS too and often it it’s just awful and I have my own snow days. I hope it's some comfort to you that your column is helpful to me. You write of what my future very likely holds and knowing that is a comfort. Thank you taking the time and trouble to share your experiences.