“While I still can, I will cherish my time with my children”: Anne-Marie’s story

Anne-Marie Marcil considers herself the luckiest unlucky woman. Last year, in April, amid all the uncertainty of the pandemic, she was diagnosed with ALS at just 46 years of age. As a mother to two young daughters, aged seven and 10, this profoundly and unexpectedly changed her outlook on life.

“I do not dwell on the little things that used to keep me up at night,” she says. “Now it’s all about relationships and interactions with people I love and who love me.”

Shortly after receiving her diagnosis, Anne-Marie was connected to her ALS Canada Community Lead, who has helped her and her family get access to much needed equipment including walkers, wheelchairs, ramps, lifts, and a recliner chair. This equipment helped Anne-Marie maintain her dignity and mobility as the disease progressed, eventually taking away the use of her legs and her independence. “I transfer to my bed and into my recliner chair with a mechanical lift. I can never be alone and need help with pretty much all tasks,” Anne-Marie says. “Luckily I am surrounded by family and friends who take turns being my buddy for the day.”

Anne-Marie also started attending support groups that her Community Lead facilitates where she has met other people and their families living with ALS, providing her with solace in understanding that she and her family are not alone. “Unfortunately, the disease has progressed a lot more rapidly than we had anticipated. I know that my time is limited, which is why I insist on making the best of every day,” she says.

While she recognizes that a cure may not be found during her lifetime, Anne-Marie finds the amount of research being done on ALS encouraging. She finds some comfort in knowing that one day, hopefully in the not-too-distant future, the disease will no longer be fatal. She also hopes to leave a legacy of strength and resilience to her children as they go on this journey with her. You can help bring Anne-Marie’s legacy to life by making a gift in support of ALS Canada today.

“It is very important to me that my children are proud of me with the way I’m facing this disease,” Anne-Marie says. “They might not realize it now because they are still young but down the road, when they think of me, I hope they find strength in knowing that even as my body was failing me, I continued to see the glass half full and to give them the best of me for as long as I could.”

The holiday season has always been Anne-Marie’s favourite time of year and she wants to enjoy this time as much as she can. “This disease does not define me, and I refuse to let it crash my party!” Anne-Marie says. “I would tell families in similar situations to try and enjoy time spent with family and friends. We all know there are tough times ahead but perhaps this December, we can take somewhat of a break from the harsh realities of this disease, be together, and share in a little joy. We are here now; we can deal with tomorrow, tomorrow.”

“While I still can, I will cherish my time with my children,” Anne Marie says, “I will hug them, tell them I love them, and teach them not to give up in the face of adversity. I will continue to visit with friends and family as much as possible, as that is truly what keeps me alive. I will go outside and breathe fresh air. Eat my favorite meals and drink good wine! It’s that simple.”