Norman MacIsaac says he’s the “luckiest of the unlucky.” His legs, arms and hands are failing him, his voice is weak, and his speech is slow and laboured, but he refuses to let ALS stifle his positivity. Norm has been on “voice rest” all day, so when we reach him by phone at his home in Montreal, he is rested and ready to talk about how he chooses to live with his disease.

Norm was diagnosed with ALS in December 2014 at the age of 51. He says ALS has given him more clarity about what’s important in life. “I focus on appreciating what I have – parts of my body that still function, equipment that improves my quality of life such as a motorized wheelchair or special utensils that help me eat by myself.”

In addition to a keen sense of humour, Norm has a “secret weapon” that helps him reframe the challenges he faces. A long career working in marginalized communities throughout Asia, Africa, and Latin America has helped him re-evaluate his own misfortune.

One poignant memory Norm shares is the story of two young women he met in India just weeks before their untimely death. Both were victims of child trafficking. Both were placed in isolation because they had contracted tuberculosis. Given that they had contracted AIDS, they were unable to fight their disease. Norm was reminded of their story when he was precluded from participating in an ALS clinical trial due to latent tuberculosis he had acquired abroad. He was frustrated and disappointed, but he was able to appreciate having access to antibiotics to cure his tuberculosis. He also felt blessed to have the continued support of his wife, Christine, and his three kids.

Norm recently published a book about his experience with ALS. He hopes to provide comfort and inspiration to others. “Sometimes, I’ve felt like I’m the only person with ALS who dares to say I love my life,” he says, “but I’ve seen in the Facebook group I created, Focusing on the Positive: Living with ALS/MND, that there are countless people with ALS who want exactly what I want. We are boosting each other. Sharing our stories makes us stronger as a community and more resilient so we can live life to the fullest.”

Despite his positive outlook, Norm openly acknowledges the dark side of ALS. He wants to dispel the myth that being positive means shying away from talking about the physical struggles, the grief, and the psychological toll of his disease. “If we don’t address the negative, we create more underlying stresses that adversely affect our physical and mental wellbeing,” explains Norm. “It builds up like a pressure cooker. We each have to find our own safety valve to release that stress. At the same time, we need to understand and make sense of our new reality and we have to do it without falling in the trap of self-pity and casting ourselves as victims.”

Allowing himself to be vulnerable in the face of fear and shame and sadness was something new. Norm has a condition related to his ALS called pseudobulbar affect (PBA) that causes awkward bursts of laughter and crying. He jokes about being “crying impaired” before having ALS, and appreciates the cathartic effect of being able to release his emotions.

Norman MacIsaac at Parliament Hill in 2018

Norm has dealt with negative feelings head-on by reaching into his “toolbox of life experiences,” both positive and negative.  For example, recognizing and undoing the habit of avoiding conflict—stemming from his childhood reaction to domestic violence—was one tool that helped him confront his fears after his ALS diagnosis.

Norm MacIsaac sees the best in the worst without dismissing or minimizing the devastating effects of ALS. He brings light into the world with his grace and humanity by continuing to find moments of joy amidst the constant struggle of adapting to his symptoms. That quality is something worth sharing!

To learn more about Norman MacIsaac’s story, order your copy of The Best of the Worst News: Tales of Inspiration from Around the World and My Life with ALS. To join his movement to experience life with ALS to the max, follow his Facebook page Focusing on the Positive: Living with ALS/MND.

You can meet Norm in person at his upcoming book launches:

  • 6 pm on Tuesday, March 3, 2020 in Ottawa at Chapters Rideau, 47 Rideau Street
  • 7 pm on Thursday, March 5, 2020 in Toronto at Type Books, 2887 Dundas Street West
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