Like most couples, Denis and Tom had dreams for their future together. They met 25 years ago in Philadelphia, and when Denis accepted a new position in Toronto, Tom quit his job and moved to a foreign city to be with him. Tom found a job in his field, became a Canadian in 2000 and the couple got married in 2004. Happily in love, they thought that as long as they were together, everything would be alright.
Everything changed in 2013, when Denis first started experiencing symptoms at the age of 51. After seeking medical attention for some answers, it was confirmed in 2015 that Denis had ALS. The diagnosis came as a shock, and the couple struggled with depression for months afterwards.
“We were super emotional, always on the edge, bursting into tears at the drop of a hat,” says Denis. “We were grieving for our life that would never be the same again; the future that we had so carefully planned, getting to retirement, moving to our little house in Florida, travelling more…that was all stolen from us.”
The depression began taking over their lives. Happy moments were overpowered by negative thoughts and fear of what was to come. Eventually, Denis decided that enough was enough.
“ALS may have control over my body,” he told his husband. “But we MUST stay in control of our minds and thoughts. It’s up to us to make the decision to live a happy life.”
That is exactly what they did. Denis and Tom made the conscious decision to embrace positivity and cultivate gratitude. Rather than lamenting the things he was struggling to do, Denis celebrated the things he could do. From that moment on, life got better.
From a caregiver’s perspective, Tom emphasizes the struggle he continues to face on a daily basis, despite his and Denis’ commitment to living in the moment: “[Denis] recently told me that a good day for him is when he forgets that he has ALS. For me, it never goes away,” says Tom. “It’s at the forefront of my mind every waking hour of the day. There’s no escaping it. No vacation from it. I find myself watching him all the time, to see how he’s walking, using his hands, talking…”
The couple persevere every day with the promise of hope: “ALS has robbed us of so much,” says Tom. “We refuse to let it rob us of everything. So we will continue to live our lives with as much happiness and joy as we can every single day. We know that as long as we’re together, everything will be alright.”
“Little by little, we learned the meaning of living in the moment,” adds Denis. “The present time is all that we really have. The future is totally uncertain. And this is true for everyone.”
This August, energized by the fundraising success of the Ice Bucket Challenge that became a social media phenomenon in 2014 and their own fundraising efforts last year, Denis and Tom will be doing the Ice Bucket Challenge and are encouraging others to do the same. “It’s our duty to keep the momentum going,” says Tom. “Like Pat Quinn said, ‘Every August until a cure. Because we have to.”
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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.