A week before the annual WALK for ALS in his community, Susan Peacock’s husband, Jeff, spent a few hours on his computer composing a message to post on Facebook using eye gaze software. The technology allows him to communicate now that he can no longer speak, but, as Susan is quick to point out, it isn’t easy to write a sentence when you have to focus one letter at a time. Some words will auto-populate, but even so, the process is slow and arduous. When Susan read Jeff’s message, she was overtaken with emotion knowing what an effort he had made to rally some last-minute support for “Team Peacock” in this year’s WALK for ALS.

Jeff says he has gone from being “the most low-maintenance person in the world to the most high-maintenance.” Today, he requires 10 different pieces of equipment including a feeding tube and a BiPAP machine, as well as four personal support workers to attend to his daily needs. He and Susan acknowledge how difficult their lives have been since Jeff was diagnosed with ALS four years ago. For Susan, watching Jeff struggle to adapt to each new stage of the disease has been hard. Prior to his diagnosis, Jeff was always athletic. He enjoyed participating in many sports – including triathalons – which cultivated in him the determination and “mental toughness” that have helped him to get through some of the hardest days.

Jeff is also blessed with a wonderful sense of humour. Susan laughs when she recalls Jeff’s immediate reaction on a day when he was still using a walker to get around. He suddenly sneezed, causing him to lose his balance and fall down on the kitchen floor. Susan was upset and unsure in the moment about what to do and how to get him back up. She said, “Who are we going to call?” and Jeff quickly deflected the situation by making a joke. Quoting from the theme song from the popular 1984 comedy, he said, “Ghostbusters!”

In a written message he composed earlier this month using eye-gaze software, Jeff was clear about what gives his life meaning, despite the weight of living with ALS. The members of “Team Peacock” — Jeff, Susan, and their three children, Megen, 25, Kelsey, 23, and Ben, 17 – share a deep bond. Jeff feels a tremendous sense of gratitude for the love they show one another:

I am blessed to wake up each day to a wonderful wife who has kept me in front of this disease from the start and without whose love and support I would not be here. I am also blessed with three beautiful children who have had to deal with seeing their father deteriorate every day and have done nothing but make me proud, laugh and give me a reason to get up every day and carry on with a smile.

He is also thankful for the larger circle of care he receives from extended family, friends, medical professionals, personal support workers and ALS Canada, including Regional Manager Sarah McGuire, who has helped the Peacocks navigate many obstacles along the way, and who leads an ALS support group that Susan attends every month.

Watching her husband of 27 years face the many challenges of living with ALS, Susan finds solace in having the ALS support group as a safe place to share her experience and hear from others, whether it’s from the perspective of caregivers like herself or from people living with ALS. The group provides a space where she can cry if she needs to express her pain, but she also derives a strong feeling of purpose by helping others who are not as far along in the journey, sharing practical information and providing emotional comfort.

At the end of the day, Susan says she’s been able “to put a lot of things that we may have looked at as stressful or difficult in our day into perspective.” Through all of this, Jeff has continued to attend his son’s hockey and basketball games and participate in the WALK for ALS which has been a focal point for the family’s fundraising and advocacy efforts for the cause. By taking things day by day, she is able to focus on some of the positive and tender moments, like reading Jeff’s message last week affirming his ability to enjoy life, his faith, and his sense of being at peace with the world.

During the month of June for ALS Awareness Month, we will be sharing the stories of people living with and affected by ALS who have chosen to seize each day in whatever way they can. You can also share your own stories and reflections on Facebook, Twitter and Instagram and hashtag #SeizeTodayALS.

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