Multiple Sclerosis is a curious disease, just as Cerebral Palsy is a mysterious disability. Even after so many years of living with them, they always like to keep me guessing…mostly because I’m no longer sure which one does what.
It used to be, before I was struck with MS, that I knew when I was in pain or having difficulty walking, that it was my Cerebral Palsy. Now I’m not so sure, though there are symptoms of the disease that are easily identifiable.
Last week, I went out for a walk. I stepped onto a curb and, just like that, my left leg gave out right from under me. I remembered to just let my body fall, to just fall into the motion of it, rather than try and stop myself from falling; I’ve done great harm to my back that way. I had to learn how to fall again instead of trying to keep myself upright, which is the natural tendency.
Even though it happened very quickly, it was like I was falling in slow motion. As I fell, I aimed for something softer than the pavement. I ended up aiming for a garden that was in front of someone’s house. I landed hard with my left arm out and it took all of my weight. I lay there for a moment, making sure that I was all right. Nothing seemed to be hurt aside from my pride.
Then I tried to get up. I had wrenched my shoulder and hurt my arm. My back was on fire and my legs had reacted as they always do and become stone pillars. Everything had spasmed and I was made of stone. I hobbled more than walked home.
As I said, before the MS I would have put that fall down to my CP. However, my CP was always more polite. It would warn me with intense spasms or tremours that moved through my body before something happened. It always sounded off an alarm before something would happen. Now, I’m walking one moment and down the next. I have to assume it’s the MS. Whereas CP is more polite, my MS can be ruthless.
I’ve often referred to my Cerebral Palsy as Cybil Paulsen and my Multiple Sclerosis as Max Shadow. I’ve often wondered if they are having a conversation within me. I picture it going something like this:
“Oh, I say old chap, how are you?” I assume that Cybil would talk in a British accent.
“I’m awesome! Look what I’m going to make him do!” This is Max Shadow who for some reason sounds like Jack Nicholson in my head.
“I say old chap, that is not the least bit polite. You have to warn him!” Cybil is always so considerate.
“I do what I want, old man. That’s how I role.” Max Shadow can be a bit of a badass.
Something else happened. Last night I had serious trouble speaking.
I was trying to tell my husband what day Ami McKay was on for the Writers Festival. We were going through our schedules and I wanted to make sure that he had her talk in his calendar. She’s on tour for her new memoir, Daughter of Family G, and I was thrilled to get tickets. I tried to say the words Ami McKay and couldn’t. I tried several times and finally said that “The author I love is on the 27th of October.” My mouth was like stone, much as my legs are, unable to shape the words I wanted.
I’ve had difficulty speaking before too, but it’s been with increasing regularity that my tongue and lips don’t want to match up with the words my mouth wants to utter. I know that this is the MS and all I have to do is wait it out. With Relapse and Remitting, my symptoms change on a dime, doing one thing one day and another tomorrow.
I’ve come to realize that life is an adventure. Like every great adventure, things are different every day. It’s also easier to travel with friends, so thankfully I have Cybil and Max along for the ride.
It took me a long time to accept the presence that both of them have in my life. I just have to make sure that my presence, the element of me, outshines both of them.