Below the surface

When someone hears about ALS, the first thought is often about the loss of physical function; for example, the progressive inability to walk, talk, eat, swallow, and eventually, breathe. Losing these functions one by one can be profoundly difficult on a person and can contribute to an additional set of emotional challenges below the surface of physical limitations – something that is not always discussed openly.

This is something David Storey has considered frequently since his father, Raymond Storey, passed away from ALS. Raymond lived with ALS for just over two years, never complaining or letting his family know how difficult the disease was for him. It wasn’t until his passing, when David was visiting his parents’ home, that he learned just how emotionally challenging it was for his father.

Throughout his short journey with ALS, Raymond struggled the most with his speech and his ability to swallow and eat. Since he was unable to communicate verbally, Raymond was given a pad of paper and some pens to express himself. Not long after his death in October 2017, David found the pad of paper, which had become a personal account of his father’s emotional state throughout his ALS journey.

“He was in little physical pain but suffered through immense emotional pain,” David said as he reflected on his father’s journal entries. “He knew what was happening and how my mother was struggling. Although he never complained, his diary gave him away.”

Loneliness, boredom and the frustration of not being able to eat or drink were just some of the struggles he documented. David remembers his father as a proud man who never wanted to burden his family — because of this, Raymond handled his ALS diagnosis with strength and determination on the outside, but was facing an emotional struggle internally.

“He did everything he could to appear unaffected,” David remembers. “He kept everything to himself because he didn’t want to burden people. Because he never complained, we had no idea how he was feeling emotionally.”

Of all the things he learned throughout his father’s time with the disease, David wants people to remember that emotional pain is just as challenging as physical pain.

“Reading this diary astounded me. It illustrated again how he was absolutely aware of his condition and the impact on his family and friends. The staff at the hospital were great, but he desperately wanted to go home. He longed for his family. Full nights of sleep were very rare and he was sad and frustrated. I wish I had known sooner how he was feeling.”

Today, David remembers his father as a family man who loved to be active and play golf. To honour his memory, David, his brother and many of his father’s golf friends created the Raymond Storey Golf Tournament to raise funds for ALS Canada. This year, they are expecting between 50-60 people to attend the tournament in Raymond’s name, something David knows would make Raymond smile.

“For me, this is dad’s legacy,” says David. “Sharing his story so that other people can learn from our experience is a way to ensure something good comes out of all of this. If I can help someone else living with this disease, it will all be worth it.”

If you or someone you love is struggling to cope with the emotional challenges of ALS, we may be able to help. ALS Canada’s team of Regional Managers assists people and families in Ontario living with ALS in navigating their journey. They offer home visits to discuss individual and family needs, provide information and education, and assist with connection to other healthcare providers and community supports. They also run support groups for people living with ALS as well as caregivers. Learn more. Outside of Ontario, partner ALS Societies in each province may offer similar support.

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