Anne-Marie Marcil
Tell us about yourself, your health journey, and your diagnosis.
I’m a mother of two girls, ages seven and 10. I was diagnosed with ALS in April 2021 at the age of 46. My first symptoms appeared in September 2020. Following many tests, including MRIs and ultrasounds, I was referred to a neurologist who diagnosed me with ALS. The news was devastating for both my family and me. In time, I’ve learned to accept the cards I’ve been dealt. It hasn’t been an easy road, but I’m determined to be strong for my children and give them the best of me for as long as possible. For the most part, I continue to have a glass-half-full attitude because there’s no other way to look at it. I refuse to live in fear of what will happen to me. As a nurse once told me early on, I will never be as well as I am today, so today is what I have to be grateful for.
What has brought you hope during your journey with ALS?
The amount of research that’s being done to find a treatment for ALS is very encouraging. Even though I may not be able to see a treatment or cure in my lifetime, I do find some comfort in knowing that one day, hopefully in the not-too-distant future, this horrible disease will no longer be fatal. I also find hope in the legacy I will leave my children. I hope they will be stronger people for going through this and remember to be strong and fight when facing life’s challenges… never back down. Someday I hope that they will be proud of their mother for fighting as much as she could and for as long as she could and continually, despite the prognosis, finding the good in every situation. I also found hope in books about others who have had to fight this fight. I once read, “this disease can take away my body, but it cannot take away my spirit.” Since then, these are the words that I have lived by.
What advice would you give Canadians recently diagnosed with ALS or a loved one recently diagnosed?
I would tell them to take it one day at a time do not think too far ahead. I know it’s a cliche but live in the moment. Surround yourself with people who love you and care for you. Build a strong support system because that’s what will get you through the hard times. Do what you’ve always wanted to do early in your diagnosis because everything gets harder in time. Don’t sit and think about it too much. Reading a book, watching a movie, doing a puzzle, playing games, and occupying my mind has helped me stay positive. Your time is precious; make it count, and make the best of it.
Can you tell us more about the ALS Society of Canada? How did you get involved with the organization?
I met with my community leader from ALS Canada fairly early on in my diagnostic. They’ve provided me with much-needed equipment such as walkers, wheelchairs, ramps, lifts, and a recliner chair. I participated in the organization of the Walk to End ALS this past June and worked closely with my community leader to offer some insight from a client’s perspective. They also offer support groups you can choose to join, which in my case, led to connecting with another ALS client, which was extremely helpful.
Do you have any additional thoughts that you’d like to share?
The one word I would use to describe this disease is “frustrating.” Not being able to do the most basic task, all of which you were able to do independently for the greater part of your life, creates a feeling of helplessness that cannot fully be understood unless you have lived it. In this situation, a little empathy goes a long way. The rest is just icing on the cake! Being surrounded by family and friends is my medicine, and I do not take that for granted. If you look at it that way, I’m the luckiest unlucky woman!
