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As I was slipping out of my wheelchair one day, gracefully you know, I shouted: “Back off universe, not today! I will not call the paramedics today.” I rejected every self-help book I’d purchased over the years that told me to accept my fate and gave the universe the finger. I was tired, I was done, but I mustered the strength to pull myself back on the chair, and I reflected.
My sister and my mother say I have great resolve like my father. They say I never give up and so therefore I’m a “never giver-upper,” goofy but true. But when I look in the mirror, I see how multiple sclerosis has aged me. But still, at 55, I believe there is hope.
For 10 years or so I’ve been chasing a cure. I keep trying because I figure if I could walk once, I will walk again. I will train my body to remember how to walk and if no one believes in me, I will believe in me. That is why I rail against the universe, I’m going rogue.
I don’t know if all this self-help crap is working, but I keep doing it. I hate it when I tell people “my body is healing, my body is getting stronger,” and they look at me with a forlorn expression. They buy into the notion that there is no cure for MS because that’s what the doctors say. Why can’t they just play along?
A lyric from the song Hands, by Jewel, has always resonated with me: “I won’t be made useless/ I won’t be idled with despair/ I will gather myself around my faith/ for light does the darkness most fear.” Despair is the operative word: it’s so big, so daunting, so dangerous. If we give in to our despair, we are ruined.
Once I was scrambling to a doctor’s appointment on one of the hottest day of the year. A hydraulic lift moves my scooter into the back of my vehicle, but it was difficult to manoeuvre and I was buckling under the heat in the parking lot. A woman came to help me with the lift. I thanked her and said, “I’m sorry, I’m having a bit of a day.” She told me she knew how I felt, and put her hand to her chest. She had her breast removed a week ago.
As my mother says, “It’s not so bad, it couldn’t be worse.”
I have had people pick me up off the floor, pick me up off the road, zip up my jacket and pull up my pants. I have gone to the door with my pants around my knees and had to sign for a parcel. So am I meant to learn something from this?
I do not want to own this disease. It is horrible and debilitating and it makes you feel humiliated all the time. I guess I’ve learned how to feel humbled and how to accept a lot of help. I’ve also learned I have to be resilient. You don’t learn to bounce back unless you’ve been given a real challenge. You don’t know how strong you are unless you’re dangling from a rope and need to drag yourself back up. I want to design a T-shirt with a little wheelchair teetering on a cliff and underneath the image: “This is my Everest.”
Sometimes, people can float through life, playing it safe, staying between the lines. That could be a great way to live and die but that doesn’t happen to everyone. Sometimes, life brings extreme challenges that we didn’t ask for. That’s why I read self-help books and toss and turn at three in the morning and say, “Why me, what did I do to deserve this?”
So, lately, I’ve been listening to one of my self-help gurus, Eckhart Tolle. He says “surrender to the present moment.” I immediately think that might be my tattoo. I start looking at my wrist and forearm to see where it might fit. “Surrender” is one of my favourite words and almost impossible to understand. It actually might be the ticket to end my suffering, to end my affliction, to stop the voices in my head.
And therein lies the problem. I have to stop chasing a potential cure, I have to surrender to what is. I hate it when the universe is right. Thank you universe and I’m sorry for flipping you the bird earlier.
So why have I changed my tune so rapidly, why am I thanking the universe now? Without this affliction, I wouldn’t know about resilience, I wouldn’t know about the kindness of strangers.
Once, I fell off my scooter at the end of my driveway and landed mostly on the road. I saw a car coming toward me and was able to lift my body partly off the ground and stretch out my hand to wave. The car stopped and, without hesitation, a mother and her grown son came toward me. He lifted me off the ground and onto my scooter, just like he was my brother or son, he lifted me. This is what we all need to do, we need to lift each other up.
This is why I’m here, this is my lot in life, the universe is teaching me valuable lessons, and I surrender. At least, until I get jazzed for my next miracle cure.
Sheri Astorino lives in Barrie, Ont.