It is World MS Day! Where's my cake?
It has been ten glorious, rich, trying, fulfilling years since the neurologist called me and, channelling Arnie, told me my brain problem was not a toomah.
He went on to tell me it was probable MS. That I had an incurable and debilitating disease, and not just a disease, but a disease in my brain and spinal cord! A disease of likely progressive disability. Not a moment you treasure in life.
I wish I could go back and tell my thirty-year-old self to trust that it would work out okay-ish...at least for the next/past ten years. The night the neurologist told me I had MS was the single scariest moment of my life. Back then I was having panic attacks because of the numbness from toes to ribs. My walking was off. My speech was funny when I drank cold beverages. My swallowing felt laborious. The panic was causing vertigo. Vertigo was causing nausea. I was irritable and anxious. All in all, very dark times.
Back then I was struck by all the literature about blindness and paralysis. I read everything I could, and the outcomes looked bleak. The unknown was terrifying. Getting out of bed was hard. Getting myself to work and focusing on things that suddenly didn't matter to me was overwhelming. In my spare time, I was researching anti-inflammatory diets, the statistics behind MS mobility and paralysis, and the main MS CRAB medications. In typical fashion, I wanted to know everything. In retrospect, knowing everything was unhelpful. There is no typical outcome for MS. There is no one standard disease pathogenesis. MS manifests and progresses differently in every single person it affects.
Back then I didn't realize that what would come would be a whole lot of grey, both literally and figuratively. I have had optic neuritis every two years or so - often enough for me not to take my vision for granted. I think my left eye blur is finally fading again. The colour desaturation seems to be evening out, or I have adjusted to the annoyance it. I believe it's the former, though - things seem less blah in my left eye.
Today I feel well. I have my standard numbness - parts of me I will never feel again, but nothing out of the ordinary. Today I took the dog out for a little hike - neither of us loved the blistering sun, but we both loved being outdoors. Eleven years ago I wouldn't have thought much of the heat. It would have been an annoyance, but that's it. Today it made me circle back to the house for water, take a shadier route. MS requires planning.
I hate planning.
It is World MS Day. A day for awareness. Maybe to celebrate the things MS does not touch. Or maybe to even appreciate what MS has given us. I am grateful for every healthy day. MS brought me closer to a cousin I had not been in touch with for a while and whose quick wit I love. It has shown me a caring, fun-loving community of people who face the same things I face every day. It has made me stronger in ways I couldn't even begin to list - having to adjust to a new normal on the regular will do that. I'm not going to bs you into thinking that life with MS is fine and dandy - it's not. It blows. I have moments of resentment and profound sadness. But I can't help but notice a lot of other people out there who have it so much worse than I do. I have a home. I have a wife who approaches my life with MS in the most direct, selfless way you could imagine. I am happy. I am able.