Denise, diagnosed with MS in 2010
When I had to quit work because of my multiple sclerosis, my world got infinitely smaller. I felt isolated. My husband and I live about 25 kilometres outside of the city, and there are no transportation services available here for people like me.
My husband is a truck driver and works nights, which means he sleeps for the majority of the day and often can’t take me out. I couldn’t imagine what I would do if I couldn’t drive. So much of my independence, freedom, and happiness come from being able to go into the city to my MS support groups, shop, and visit my oldest daughter and beautiful grandchildren. With sports season just starting, I’m looking forward to seeing a tonne of baseball games with my granddaughter, and lacrosse games with my grandson. I wouldn’t be able to do any of this if I couldn’t drive, and it’s one of the things that would be devastating to give up.
I drive our white Silverado pickup truck to get from point A to point B, and sometimes people ask me, “Isn’t it hard to get into that big thing?” To be honest, it’s actually a lot easier for me to get up into the truck than lower myself into a car. It also has big running boards, so it’s easier for me to keep my balance when I’m getting in.
I’ve been trying to do things closer to home when I can. I’ve met so many people in my community – so if ever I’m walking and someone sees me, they’ll pick me up! Most days I use a cane to keep myself stable because of the weakness and pain I have in my legs, which I can’t control. I’ve fallen a couple times and would hate to do it in public. I’m so grateful that I’m still able to drive, though – it gives me a sense of liberty, and I hope it wont be taken away from me if my MS progresses.
It’s all about adjusting
My daughter was able to drive me to my most recent MRI, which allowed me to calm my nerves on the way. Driving myself there is doable, but it would’ve been a lot harder on me. When I know I’ll have to walk long distances or I’m going to be out of the house for a long time, I’ll use my wheelchair. For me, a wheelchair actually means that I’ve opened myself up to experiences, and adaptations allow me to keep doing the things I love. I’ve learned to work with my reality and anticipate adjustments along the way.
Each year, my family and I attend our annual community celebration, which is held on a local field. There’s always lots going on, including a baseball tournament, parade, and fun stuff for the kids. But even in my wheelchair it’s tough to navigate the grounds, and there are a lot of spaces that aren’t accessible that I wish were.
It would be easier for me to say, “Nah, I’m not doing that” and stay at home, but who wants to do that? I don’t, that’s for sure.
I’ve really taken advantage of all the physical and occupational therapy that I’ve received at the MS clinic. If I was unable to drive to the clinic, I wouldn’t have learned the importance of taking breaks throughout the day so I don’t get too tired, and that it’s ok that I can’t get the house cleaned the way I used to. Sometimes I wish there were more things that I could do to help others with MS – but I feel limited a bit with that now. If I’m not feeling the best, I will stay close to home, which has made me realize that I like my home, my puppies, reading a good book. I have the privilege of being able to stay home when I need to, and leave my trusty Chevy in the garage for a day when I’m feeling better.
Working was a large part of my identity. When I could no longer work, I left my full-time position as a manager of a loan administration centre. It was difficult at the beginning, going from working every day to not having anything to fill my day with. It took some adjustment to find out who I was without my job as an anchor to show me what I was capable of. Having the freedom to be able to drive where I need to go has helped me regain my identity. Finding opportunities outside of my normal 9-to-5 routine was overwhelming at first, but being able to drive really broadened my options and I’m so thankful.
For me, driving a car is where I gain most of my independence. And I’m sure that’s the case for others living with MS as well. This weekend, you can play a small part in ensuring people living with MS are a full part of their communities. When you visit a Mr. Lube location from May 6-8 to get an oil change, a $2 donation will go toward ending MS in Canada on behalf of Mr. Lube. You will also be allowing people like me to keep my independence by enabling ongoing research to find a cure. Thanks so much for being a part of the journey!
Awesome article Denise. You left out the part where you give so much of yourself and are very selfless! You’re the best. And our vehicle needs an oil change so might have to take you up on the offer.
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