The only muscles Jeff can fully control are behind his eyes. He lives with ALS, but that hasn’t stopped him from staying fully engaged in life and finding purpose in helping others. That’s the way he’s always been, says his wife, Darlene, who has known him since high school. Nowadays, everything takes extra time, but as Darlene attests, “Jeff has always been a patient man.” The way he describes it, “I think by not fighting with myself, it has helped me fight the disease.”

With the help of eye gaze technology Jeff communicates with the world, manages his family’s banking and investments online, coordinates his care attendants’ schedules, fundraises for ALS Canada “to help others in less fortunate circumstances,” and works on a book he is writing about his experience — all in a typical day. He usually stops work at 5pm to focus on family activities with his wife, Darlene, or his two living sons, Ben and Nathaniel. If the weight of living with ALS was not enough, Jeff and Darlene lost their eldest son, Zachary, along with his long-time partner, Kaya, in a kayaking accident last year.

When Darlene talks about confronting the grief of losing their son, she says she will never be okay with it, but she and Jeff know how important it is to support each other and to be there for Ben and Nathaniel. Nothing they had experienced until that loss had prepared them. In fact, Darlene says they never grieved the losses they experienced as Jeff’s condition worsened. Their approach with ALS was, and still is, to take it day by day, and not to look too far forward into the future. Not to focus on what they had given up – Jeff’s career as a family physician which he loved, Darlene’s home-based business, the freedom to travel and lead a normal life.

“Having time to adjust each step of the way helped me,” says Darlene. “If I had been asked 10 years ago, I couldn’t have seen myself able to provide the care I have needed to provide for Jeff, but focusing on what was most important was easy for me. Sometimes you get strength where you never thought it possible. Everything is a choice.” She is quick to add that she and Jeff would never judge anyone else for how they cope or which decisions they make along the way. They both insist that everyone’s story is unique, that everyone has to find a personal way through this journey, and despite the hardships they have endured together, they are thankful for not having some of the tremendous financial burdens faced by so many families living with ALS. That is one of the reasons the couple has been so actively engaged in raising money and advocating for ALS Canada over the years. They are thankful, too, for the deep love they share as a couple, as a family, and among their community of friends, and they wonder how they would manage if they did not share this gift.

There have also been days when Jeff has struggled with feelings of guilt about burdening his family. Darlene has been his full-time caregiver for the past 10 years with help from the boys (who have been hands-on in helping their dad), CCAC nurses, and with part-time assistance from professional support staff hired through the province’s direct funding program.

Worrying about the sacrifices placed on family caregivers is one of the many difficult challenges people face when ALS takes away their mobility. For Jeff, receiving and accepting unconditional love from his family, and contributing to both their emotional and financial well-being gives him a reason to greet most days with gratitude, and always with his innate sense of compassion and kindness. It hasn’t always been this clear to him, but today, he says, “I now know that I am so much more than my physical abilities. I can still be a caring, thoughtful and loving husband, father, son, brother and friend. I can still carry on my purpose in life as long as I can communicate, even if this is with an eye gaze communication device.”

The communication device is not perfect, but it is Jeff’s means of connecting with the world. Luckily, he has always been quick at adapting to new technologies. His wife says the occupational therapists who work with him have never seen anyone so proficient with the device. He can even program it himself to expand the vocabulary he can access on the screen so that he can improve his communication. It’s just one example of Jeff’s extraordinary ability to adapt.

When his condition rapidly deteriorated in the second year after diagnosis, Jeff was only 42 years old, with three boys at home just about to enter their teenage years. He was still practising as a family physician, so he was knowledgeable about medical interventions and some of the difficult decisions families face as a result of critical illness. For Jeff, deciding to accept a feeding tube, BiPAP machine, and a ventilator was not all that difficult. For Darlene, the feeding tube meant it was easier to sustain Jeff nutritionally, and measures to help him breathe, despite the discomfort, would help to prolong his life.

Jeff embraces the world around him. He would have preferred to have a life without loss but has for the most part accepted ALS into his life. He is less concerned about himself, and more focused on helping others. His insight seems to come from a place of peace. “I find light from helping my family and friends, as they do when helping me,” he says. “I am not afraid to die whenever that will be, but I believe I still have purpose even in my immobile body.”

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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