Learning to balance challenges and blessings after an ALS diagnosis
When someone receives an ALS diagnosis, the first thought is often about the impending loss of function; for example, the progressive inability to walk, talk, eat and swallow. But the reality of this unforgiving disease can also result in emotional challenges, too. This is something Barry Law knows all too well.
When Barry was diagnosed with ALS in 2015, his initial reaction was of that of shock. In his words, the confirmation of something he had been concerned about for months was followed by a “state of trauma.”
“I spent so much time thinking about those three little letters,” he says. “You have plans for how your life will turn out and for the things you want to achieve, and then in an instant, everything changes. I was devastated.”
Of all the challenges he has had to face since his diagnosis, – giving up his career and his love for mountain biking, for example –
the greatest challenge has been emotional.
“It’s difficult to accept the disease and avoid taking it personally,” he says. “But I’m beginning to step away and look at the big picture.”
Over the past two years, Barry has learned to focus on the things ALS has given him, rather than what it has taken away. For example, living with the disease has helped him to develop new skills. For him, creativity, journaling and imagination have all become “vital coping skills.”
One of the biggest outlets he has found in coping with a terminal illness is the creation of a personal blog. Through this platform, Barry has been able to communicate with others who share similar experiences, raise awareness for those who don’t know about the disease, and channel his own creativity.
“My hope is that my blog will help others and have an impact on people’s lives,” he says. “When you receive an ALS diagnosis, I think the most important thing is to connect with others who also have the disease.”
While it can be difficult to accept the progression of the disease and the well-intentioned help from others, Barry feels that it is important to stay one step ahead of it and take care of yourself emotionally. For him, that means having a purpose and knowing that his experience will mean something for others living with ALS in the future.
“My biggest wish this holiday season is for a cure,” he says thoughtfully. “Until we find it, all I can hope for is some good conversation, a few laughs, and meaningful connections. Between the research taking place and the bonds I have developed as a result of this disease, I have hope.”
To date, Barry has received a power wheelchair and a recliner from ALS Canada’s equipment program, a program which helps people living with ALS maintain their independence.
“It’s hard to believe a couple of months ago, I could walk. Now, I rely on my wheelchair to get from my living room to the kitchen. I can’t even imagine how much it would cost to buy this equipment. That’s why ALS Canada’s equipment program is so essential.”
Giving Tuesday
Giving Tuesday is a global movement dedicated to giving back and thinking of others. Today, we hope you will donate to support the people like Barry who are living with ALS in Ontario and need your help to grant their holiday wishes.
From the research breakthroughs that could help to end ALS, to the wheelchairs and other supports that will make holiday visits easier, your donation to ALS Canada will truly make a difference. Please consider making your Giving Tuesday contribution today – together, we can work towards a future without ALS.