Let’s be frank – living your best life with multiple sclerosis has a lot to do with preparing and educating yourself as you go. Somewhere along the way, you learn to live with the harsh reality that you’re battling a disease with an uncertain outcome and you try to get as much information as possible on what to do, how to treat it and what to expect. But after this initial phase, another coping mechanism kicks in: repression. I think everyone living with MS learns to a certain degree that dealing with MS has a lot to do with NOT dealing with it. You can’t spend the rest of your life pondering what might or might not happen so you continue to live your life as normally as possible, and hope that it doesn’t throw you another curveball too soon. Sometimes this lasts, but other times when you’ve just wrapped yourself comfortably in a blanket of oblivion, life goes “Surprise!” and you are confronted unexpectedly with the exact aspect you’ve been trying so hard to forget: your possible future self.
Very recently I was involved in an event I was very passionate about. I’d been lucky with relapses for a while and I was enthusiastic and thrilled to be active. We were in the middle of arranging the seating when one of the younger members of our club approached us and said we needed room for a wheelchair. He explained that one of his mother’s friends was attending and that he suffered from MS. I blinked. There it was. The M-word combined with one of the things I probably feared most: a wheelchair. And without any warning I was stripped of my safety blanket and thrown back into the whirlwind of questions of what I might become. Dark thoughts crept back out from where they had been hiding: “Will this be me? Is this my future self?”
It’s hard not to fall into a spiral of desperation in moments like this, when what-ifs start obscuring any possible less scary outcome. I start to forget what my brilliant neurologist said when she told me about my diagnosis three years ago: “MS is different for everyone. Treatment is a lot better than it was 20 years ago and MS doesn’t inevitably have the worst possible outcome.” In times like these, I force myself to focus on that; I remind myself that research is still ongoing and that I might actually live to see a cure, and I remember the wonderful fact that I have people who love me and who understand me. After that, I realize that I have another anchor that helps me through dark moments like this: my late father.
My father was born in 1941 and passed away in 2001. Of the 60 years of his life he spent at least ten battling MS. As science hadn’t progressed to where it is now, it took forever for him to even receive the right diagnosis. The only treatment that he got at the time was for his acute flare-ups. There was no basic therapy so before his sudden death from lung cancer, he was in a pretty bad way. He could only walk with crutches, and it took him a long time just to get from the garage to the front door. He was in pain and had spasms. But despite all this, he never complained. He never wallowed in self-pity. He remained his warm, funny and optimistic self, the way that I’d always known him. I often look back at my last years with my dad in wonder and I ask myself, “How did he do it? Will I ever be this strong? Will I be able to live with such grace?” And then it occurs to me that what kept my dad going was simply one thing: determination. He was determined not to let MS get the better of him, he was determined to stay independent, and he was determined to never give up. In moments like this, I make a vow that I repeat to myself over and over again, until the demons flee back into the shadows where they belong: “I will keep on fighting. I will stay strong. I will take anything MS throws at me in stride. No matter what my future self looks like, I will be defiant. And I will make my dad proud.”
In loving memory of my father, Arnhelm1941-2001