Chris Silva’s mom Darlene was diagnosed with ALS on Mothers’ Day in 2016. She was 48 years old, a single parent, and devoted to her two sons. “It was all about me and my brother,” says Chris, who remembers his mother as “the most important person in my life. She was both parents to me.” Chris’s older brother was married and living away from home, so it was natural for Chris to assume the role of caregiver.
At the time, Chris was 25 years old. Darlene’s early symptoms at first looked like a simple case of laryngitis but it soon became apparent that something more serious was happening. Chris noticed his mom having trouble pronouncing words. She began losing dexterity in her hands so her doctor ordered a round of tests to determine the cause. “The day she found out she had ALS,” says Chris, “she was frozen with fear. I took her in my arms and we cried.”
Afterwards, things began to rapidly decline. Darlene lost her ability to swallow, walk, eat, or go to the bathroom. Chris describes how “horrible” it was to watch his mom lose all functioning, and what an emotional toll it took on him. The only way he could manage was to cut back on his work hours and eventually take compassionate care leave so he could look after her around the clock.
Looking back, Chris is grateful for the help he and his mom received from ALS Canada in the form of practical information and support from their Regional Manager, Joanna. He is also thankful for the equipment loaned by ALS Canada free of charge — including grab bars to help with mobility, a hospital bed to maintain comfort and a special lift to transfer Chris’s mom from her bed to the wheelchair. His mom also found solace in attending an ALS Canada support group even though she could no longer speak.
Becoming more involved with ALS Canada has been a way for Chris to give back. Last year he raised $5,500 for the organization. “I’m fighting and cheering for ALS research from the sidelines,” he says. “ALS is one of the most devastating diseases out there. It can affect anyone in any walk of life.”
While most cases of ALS occur in people who do not have a family history of the disease, Chris feels particularly vulnerable because he has lost his great-uncle and his grandmother to the disease in addition to his mother. While his family history means that Chris has a 50% chance of developing ALS himself, since his mother’s death he has tried to focus on looking after himself and appreciating the good things in his life.
“I don’t worry and complain about the small things. I’ve already gone through the worst I could imagine,” explains Chris. He continues to “feel her loss every day” but gains strength from his mother’s courage and her capacity for love. “She accepted her fate. She didn’t want me to become more upset. She was so selfless. She found strength.”
The mutual love and support Chris and his mother shared shines a welcome light on the power of human compassion and resilience under the most difficult of circumstances. It inspires all of us to keep working tirelessly towards a future without ALS.