By LYNN ATKINSON-BOUTETTE
Monday, July 9, 2018
I have had multiple sclerosis for more than half of my 65 years. But even though I've had ample time to get used to this maddening disease, I have come to realize that I will never be finished with adjusting to or accepting my multiple sclerosis. One does not, after all, finish adjusting to life. MS is a just a fact of my life, like my graying hair and my turned-up nose.
When I was younger and people asked me if I ever felt unfairly treated by life, I always said 'no' because in my mind I wasn't disabled - I just walked with a cane, that's all. I hadn't the time or the inclination to let a disease define or limit my life.
Besides, I hated to admit it, but I had always felt superior to anyone with a disability; they stood out. I had spent my life trying to fit in.
It wasn't until years later in an art-therapy class, when I drew myself in a wheelchair, that the shock of my MS overwhelmed me. Overnight, it seemed, I had become disabled. All my pent-up grief, all the doubts and insecurities about myself, came flooding in. Again, I heard the callous words I had successfully blocked out for years - the words of the neurologist who informed me at the age of 24 - "You will probably spend the rest of your life in a wheelchair."
Again, I heard the words of prospective boyfriends, "You can't die from MS, can you?" Over the next 40 years, I went from one cane, to two canes, to a walker, then a scooter, a wheelchair I threw in and out of my car and, finally, a hands-free, head-operated power chair. However, it was only after the slow relinquishment of my career as a journalist, when my hand function slowed and lying under the lunch table for an afternoon nap became too onerous, that I discovered MS was the narrative of my life, not the context or meaning: Call it denial, if you will. There were other, more important issues that I had to deal with. I used to think that life began only when the essentials of living were taken care of. Then I could go on to other, more interesting activities. But there was always a slight edge in my concentration that told me I was not fully engaged. Part of me asked: Is there something else I could be doing that would be more satisfying?
I would, for example, be planning a trip while my support worker dressed me. She is somebody I see every day, yet I wonder why we have not developed the kind of relationship that I would like.
Although planning a vacation may be more interesting than what's going on at the moment, my relationship with her lasts a lot longer and could be more rewarding. How to balance the anticipated rewards of the future, real or imagined, with the mundane details of life? It's not easy when you also suffer from FMS - or what my mother calls Fear of Missing Something - an intense curiosity about life and the world. MS and FMS are a daunting combination. I had to find creative ways to realize my goals: to travel, to find a life mate and to learn how to deal with midlife challenges exacerbated by a chronic progressive disease. My resourcefulness and ingenuity came to the fore. Today, I can say that my quality of life is as good as or better than it was when I was able-bodied.
My passion for travel developed only after it became difficult. Isn't it always the way? After my first wheelchair trip to England in 1990, I realized that there wasn't much access information out there (before the internet was popular) so I began writing and publishing a newsletter for disabled travellers. I also wrote travel stories and spoke to groups about innovative ways to travel with a wheelchair. For Egypt, Jordan, Peru and the Galapagos for example, where rough terrain and wheelchairs don't mix, I borrowed a rickshaw/wheelbarrow device (developed by innovator and former Vancouver mayor Sam Sullivan) that came apart and fit into a bag I had especially made.
Finding a partner posed different problems.
How was I to find a man who looked beyond my disability to the woman underneath? Advertise! So I put an ad in the companion section of my local paper and met a lot of frogs, as they say, before I eventually found my husband. He has shown me that although my dependence on others has made me more vulnerable, which I am loath to accept, that it is okay. For the more than 20 years we have been together, he has helped me to realize many of my dreams.
Some years ago, we moved from Vancouver to Toronto, an older and therefore less accessible city. Since we knew no one, it meant spending more time alone while my husband was at his new job. I had less personal help, and I couldn't enter or exit my apartment or building on my own as there were no automatic door openers. My world grew smaller.
One day I hadn't prepared ahead, and when my helper left, I had nothing to do. I stared out of the apartment window and felt hopeless. But as the songs of the chickadees at my bird feeder echoed those of Mozart's on the radio, I suddenly felt better. Had I made something creative out of the moment - chosen to do something with my frustration? In other words, did I have complete control over my well-being?
Fulfilment, I realized, had more to do with my relationship with myself, rather than with the outside world of distraction. Since I cannot express myself now in physical ways, midlife has brought me a new appreciation of solitude. Unlike the dread of earlier years when being alone meant being lonely, I've realized that nothing can take the place of creative activity that I do on my own.
This new self-awareness has allowed me to come closer to my feelings, which in turn has enriched the creative process. I now use voice-dictation software and this has opened up a whole new world: I have started to write poetry and have had some poems published. I have begun to call myself a writer. Can I learn the lesson MS is trying to teach me? I hope so. I have a new appreciation for the strength in vulnerability, and I'm still trying to figure out how vulnerability and guilt (for having MS, go figure) challenge my writing. But ultimately, aren't the necessary elements of creativity simply self-respect, self-discovery and maybe a small contribution to society?
Like a weed growing in concrete that splits its bonds, I hold my soul in tenderness - a hayseed floating.
Lynn Atkinson-Boutette lives in Toronto.
ILLUSTRATION BY SANDI FALCONER