- From the Community
- March 14, 2023
Why Not Me?
I believe in the power of perspective. Reframing the narrative in my head may not cure MS, but it has helped me live my best life.
Living with three autoimmune diseases, this outlook has proven its value to me many times.
When I was diagnosed with relapsing-remitting MS in 2001, it was a scary time. As an adolescent I underwent many surgeries related to ulcerative colitis and have lived with an ileostomy* since I was 11 years old. I understood scary times. Also, I learned some useful coping skills at a young age.
The ostomy surgery saved my life and, even as a child, I was grateful that such a surgery existed. I didn’t think I had a “disability,” I thought I had been granted the ability to continue living a very full life.
Twenty-one years later, when I was diagnosed with MS, my biggest fear was losing mobility. Still in shock, I began researching traditional treatment options, as well as holistic approaches to help manage my immediate and possible long-term symptoms. I focused on all that I could still do. I started taking a prescribed treatment therapy. I cut gluten out of my diet. Always into fitness, I could no longer run without leg spasms, so I walked and swam. I lifted weights, did yoga, and stretched. Even after a bad relapse, I did 3 minutes of daily seated yoga as I slowly built my strength back up. I knew that doing a little bit, was better than doing nothing. Those little bits added up to a lot, as I thought of them as successes instead of limitations. Fortitude is built by many acts of resilience, big or small. We can be our own hero by knowing we did the best we could with what we had on any given day.
Writing things down helped remind me of my strengths. Around the time of my MS diagnosis, I took a writing course and my instructor told me that my story might help other people. Busy with a job, and life in general, I filed that idea, but began writing to process my feelings. I also saw a therapist, so my emotions weren’t hard to access. What began as a cathartic endeavor turned into a memoir.
Writing about my experiences and feelings, got them on paper and out of my head, where they could bounce around bruising my well-being. Saying things out loud, or acknowledging them on paper, let the air out of my fear, anxiety, and anger. I think of it like the slow hiss of a deflating balloon.
While chronicling my thoughts, I remembered many good times, and was reminded of why I feel lucky. Over the years, several people have asked me “Don’t you wonder, why me?” I don’t. My response is “Why not me?” Really, why anyone? Maybe I drew the short straw for autoimmune diseases, but I don’t think of it that way. My good outweighs the bad, and every day I try to remember a couple of things that I am grateful for. On more challenging days, I make sure to do this. Sometimes I am thankful for big things, like the love of my family, sometimes it is the fact that a dragonfly landed on my toe. Finding joy in small things is a gift. It’s a gift that keeps on giving, as gratitude also builds resilience. It is a great reminder that our mind is strong, and our outlook is a choice.
I called my memoir Why Not Me. Even the title relates to perspective; it’s not just how I feel about my health, but also about trying things that are daunting, or out of my comfort zone. Why can’t I try to write a book, horseback ride again, speak in a public forum?
By writing a memoir, I have laid my vulnerabilities bare. This is new for me with regards to my ostomy. For years, I was embarrassed, ashamed, and secretive about that part of my medical history. I learned the value of openness when I was diagnosed with MS. I immediately wanted to contribute to the MS community and this led me to a connectiveness that I lacked with my other disease. I felt less alone. This also built resilience. There is a strength that comes in being part of a team working toward a common goal. Participating in MS Canada events allows me to contribute to something I care about deeply, and not just for me, but for future generations of people with MS.
When I have been asked to talk to newly diagnosed people with MS, I listen first. I know how important it is to feel heard and to share your story; to feel understood. In my early days with MS, I found it beneficial to speak to people who were doing well with the disease; it helped me understand that although MS can throw some challenging curve balls, it can also be manageable. Recently I read a book by someone who has significant disabilities due to her MS; I was surprised by how helpful that was too. Her power of perspective was inspiring.
Life goes on; we make a choice on how we decide to live it, with MS.
Lindsay can be found on Facebook, Instagram, and her blog.
*The MS Society is not responsible for the contents of any “off site” Internet information referenced by or linked to the MS Society’s Internet site. The inclusion of any link does not imply endorsement by the MS Society of the site. Use of any such linked website is at the user’s own risk.
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