“Life is beautiful:” Seizing Today with love, support and adventure
In his lifetime, Jamie has climbed the Swiss Alps, bungee jumped, skydived, white water rafted and cave climbed. He has gone on a balloon ride in Estonia, taken a cruise to the Caribbean, done a rainforest canopy tour in St. Lucia and proposed to his best friend. Since his ALS diagnosis in 2016, he has travelled to 13 countries. Jamie has ticked a lot off his bucket list throughout his life, and he is not letting an ALS diagnosis stop him. He has plans to go to Malta and swim with sharks and hopes to see the day when his grandchildren are born.
Jamie’s adventures are just one example of how he chooses to live his life and his attitude towards ALS. Rather than sitting at home, Jamie is working on doing the things he loves while he still can.
“I have a full understanding of where this disease will progress to, but I will not waste a minute feeling sorry for myself,” says Jamie. “I still do everything that is important to me. I have to do things differently now, that’s all.”
Before his ALS diagnosis, Jamie worked as a facility supervisor and volunteered with Scouts Canada for 15 years. The disease has forced him to quit his job and sell his home, but he has never stopped volunteering with Scouts Canada.
“Continuing to volunteer gives me a sense of normalcy and allows me to feel like I am leading a normal life,” he asserts. “It keeps my mind busy and gives me a sense of self-worth and pride knowing I can still make a difference. It’s good for my spirit.”
Jamie believes that his is a love story of family support. When he received his diagnosis, the love that surrounded him became clearer. For example, their adult children moved home as a support system for daily tasks. Jamie says that the “love, help and understanding” of his family and friends is what has allowed him to do many of the things he has done.
In addition, Jamie proposed to his girlfriend, Deb, and she said yes. Now they are making the final plans to share their love for each other and their families as their wedding day quickly approaches on June 17th. The colour scheme of their wedding will be purple and white, a nod to the colours of both ALS and World Scouting – very appropriate for them. Deb and Jamie also travelled to Hawaii this past March on a pre-honeymoon where they took a helicopter ride and saw live volcanoes and lava splashing into the ocean.
Jamie has said that he is always surprised by how normal he feels until he tries to move or talk. The mobility challenges have been eased by a Handi-Van, renovations to make the bathroom more accessible, lifts and a wheelchair, but the loss of speech has been Jaime’s biggest frustration. For an adventurous man such as Jamie, having to ask for help and watching people do the things he would normally do himself has been very difficult.
Today, Jamie focuses his thoughts on what he can do to live life to the fullest, ensuring that he never wastes a day. His catchphrase, “life is beautiful,” is a daily reminder of his optimistic attitude. Reflecting back on his memories and blessings, Jamie reminisces: “I have lived a life that many can’t even dream of, and if I go tomorrow, I will be happy with the résumé of my life.”
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.