Carole Desforges has an infectious smile. With heartfelt enthusiasm and an indomitable positive outlook, she set the stage as she described her life transitions. She asked me if I remember Guy Smiley, a Sesame Street Muppet on TV? “I sure do,” I replied. “Yes, the show is called ‘Here is Your Life!’” said Carole. “Guy Smiley says, ‘Hey Carole, this is your life… now deal with it!’. And Carole is dealing with it, namely the life changes that come with age and the accelerated changes that come with Multiple Sclerosis (MS).
MS is a progressive neurological disease. You don’t know when the disease will flare up or what functions will be affected. So, you have to be tough and optimistic. “The French have a saying: ne sois pas défaitiste. Don’t be a defeatist!” Carole told me. It’s all about thinking differently and making choices to adapt to your situation creatively. It’s also about taking chances. As a retired high school drama and language teacher, she has always found a creative way to make a safe space to encourage her students to stretch and take chances. In this setting, her students have discovered new sides of themselves.
Carole is now creating that safe space for herself, to step up and into as she adapts. “Sure, I have ups and downs, but in the end, I face them and move on”. To live with a disability, you must be débrouillard, ‘resourceful’, Carole said. For exercise and accessing the outdoors, Carole uses an adaptive bike for her early morning rides and SideStix to walk extended distances. She uses other tools in the kitchen for mobility and to prepare delicious food for family and friends.
It boils down to one’s perspective on life and keeping a sense of humour, muses Carole. “I have a favorite cousin from childhood, and we loved being outside and having fun.” Carole and her cousin would climb the hill near their summer cottage every chance they got. “At the top of the mountain, we would sing the song, “I’m On Top of the World”, by The Carpenters.” At that altitude and with their attitude, they felt invincible. “I can still get that feeling,” said Carole.
Tell us about how you came to own your SideStix.
I was diagnosed with MS in 2008, so it’s been 11 years. I got my SideStix about 3 years ago. I’m quite impulsive, and I wanted the SideStix, but I guess I was still in denial about needing them. I bought the SideStix and tried them, but I was kind of insecure about using them, especially socially or being out there. I returned them, and then maybe 4 months later, I called and said, “I think I’m ready, send them back!”
I don’t know how many MS users have SideStix, but this is something I’ve come to appreciate: I’d much rather be called ‘handicapped’ than ‘sick’. ‘Sick’ is a drag, ‘sick’ is not fun. With ‘handicapped’, you just go on your way and say ‘I’m not sad, I’m not mad. I have mobility issues, and this is just part of me that’s helping me get around”.
What’s your definition of ‘defy convention’?
That’s easy: it’s just doing something differently, thinking outside the box. I’ve always been like that, even before being diagnosed with MS. I’ve always liked creating. I don’t like when people impose something on me, like what I should do and how I should do it. I like inventing stuff.
What are your passions?
I’m now retired from teaching. I retired 2 years early because, of course, it was tough working with MS and fatigue from getting around. I mostly taught drama, visual arts, and French. I have three kids, who I’m crazy about! If you asked me to define myself, I’d say I’m a mother, I’m a teacher, and then I’m me!
What excites me most is moving: workouts at Studio Vie Active, physiotherapy at the Neurogym in Hull, or being in nature. I love going into nature and cycling. When I have enough energy in the morning, usually around 5 or 6 o’clock in the morning, I just go and do 2 or 3 rounds around the block, or in the woods, either on the trail or bike path in Gatineau Park. And that’s just made my day! I’m so enthused in the morning; it’s my favourite time. I like cycling, and cooking, and having friends and family over for meals. I really love gatherings.
What’s your favourite thing about SideStix?
They make me feel secure. It’s a very secure design. When I go do something important, like my adult French tutoring at the career center in Aylmer, Québec, and I know I have to feel like I’m on top of things, I like using my SideStix because I feel more secure. When I take the car, I think it’s quite a bit easier to have my SideStix, instead of bringing complicated, heavy mobility aids. I still drive, but sometimes I’m unbalanced; with MS, you know, it’s a neurological problem, and when I get nervous, my legs don’t like to listen to what my brain is telling them to do. With SideStix, I feel solid. Sometimes, I hang my grocery bags on them!
How do you move forward after mobility loss?
I think it’s important to grieve. Once, my students lost a classmate, and I told them to just do what they usually do. If you love playing soccer, go out and play soccer with your friends. If you like going into nature, go out into nature. If you like eating popcorn in front of the TV, do that right now. Do what you usually do that’s comforting, and grieve. For me, all the grieving I’ve had to do is for my health or things going by too quickly. When that happens, I just listen to my instincts and do what I would normally do, which is go into nature, go cycling, see my friends or family, have a coffee, or have wine! (singing) These are a few of my favourite things!
Do you have a message for other crutch users?
Don’t put everybody’s sadness or perceptions of you on your own shoulders. I feel like I’m getting past being sad about certain things I can’t do anymore. Sometimes it’s just small stuff, like “how come I can’t do this?” or “ouch, I hurt myself” or whatever, but then I get over it, and get back on my SideStix and feel secure. That’s when I feel better.
The most stress comes from not wanting to put this on my kids. I saw my favourite aunt and cousin yesterday, and I saw how it affected them to see me in a different way. That’s what I have to try and put aside. I say, “Carole, that’s not your problem, that’s their problem”. I don’t have to put all that on my shoulders.
In French we say “ne sois pas défaitiste”. Don’t be a defeatist! Don’t be the guy pitying yourself. It’s okay to be sad about something sometimes, but, like Simon Henson says, “get on with it”! It’s true! The more we deny something, the more you’re shut off. It’s not a good thing. Everything has to flow in and flow out, so I believe we’ve just got to get through emotions about loss, so we can live. We can live it intensely, and be depressed about it, but then it makes less space for positive light, you know?
This is your life, so just get over it, and move on. That’s it!