EDMONTON – As a former government spokesperson, John Tuckwell talked for a living. Now he communicates through a computer; painstakingly typing each word with one stiff finger, so the iPad can voice his messages to the world.
The 53-year-old has been living with ALS for nearly four years. The progressive neurological disease stole his voice first, and his ability to swallow. Tuckwell hasn’t tasted food or drink in more than two years. He chokes so often, he needs a cough assist and suction machine up to 30 times a day.
Tuckwell is one of the first Canadians to be granted a medically assisted death. When he is ready, a doctor will administer medication that will end his life.
“Relieved,” he typed when asked how he felt when the judge ruled that he qualified for the legal exemption last month.
Tuckwell said he also feels “lucky” to have had three good years on his feet since his diagnosis. Since his form of ALS attacks from the top down, his legs were still able to take him travelling around the world; Tibet, Nepal, Thailand, Trinidad and Tobago. He continued to cycle, run, climb and dive. He laughed while describing how he broke two ribs skiing in Lake Louise.
Tuckwell credits Edmonton’s ALS clinics and the ALS Society of Alberta with making it all possible.
“Everything I said I want to do, their eyebrows head for their hairlines,” Tuckwell typed. “And then they figure out how to help me do it.”
The Society lent him equipment to make everything from communicating to breathing easier. That helped keep his energy up.
The journey maybe hasn’t been as bad as he expected.
In a statement for the court, he wrote: “When I was diagnosed with ALS in October 2012, I was scared, alone, depressed and incredibly angry. Every test to rule out other possible causes of my symptoms pitched me further down that dark slope. I did consider suicide.”
“But I still had to walk my dog, still met up with friends and went to work. Then it occurred to me that I was still enjoying all that. And I was still laughing, which I love to do.”
“So I decided to live well while I was still alive.”
WATCH: Edmonton man with ALS does Ice Bucket Challenge
But now ALS is affecting his arms, legs and his breathing. Soon it will take the use of his hands, making communication even more difficult.
Tuckwell watched his grandmother die from cancer, in agony. He had planned to end his own life the legal way, by stopping any feeding or breathing support. Then the constitution changed.
“The Supreme Court’s Carter decision allows for a more dignified and peaceful end than starving or choking to death.”
Tuckwell was named to Alberta’s Provincial Steering Committee on Medical Assistance in Dying. His sister, Cathy Tuckwell, is proud of how he has advocated for others.
She has watched her younger brother struggle to breathe, and understands his decision.
“Just that ongoing sense of, ‘There’s something there that’s gonna hurt me, it’s gonna choke me,'” Cathy said. “That is not a way to live.”
In 2013, Tuckwell had to put his dog, Bruno, down. When he chooses, he will leave this world like Bruno did; peacefully, surrounded by people who love him.
“We need to offer human beings the kind of merciful death we all offer our pets.”
You can read John Tuckwell’s full statement from May 6, 2016 here:
“When I was diagnosed with ALS in October 2012, I was scared, alone, depressed and incredibly angry. Every test to rule out other possible causes of my symptoms pitched me further down that dark slope. I did consider suicide.
But I still had to walk my dog, still met up with friends and went to work. Then it occurred to me that I was still enjoying all that. And I was still laughing, which I love to do. So I decided to live well while I was still alive. I had the support of an incredible, multidisciplinary team of health professionals who worked with me to make it possible for me to keep traveling, hiking, backcountry and downhill skiing, cycling, diving and working as long as I possibly could. I also had the support of the ALS Society of Alberta, lending me a long list of equipment to help, as various parts of my body let me down.
Someone told me that ALS is not a bad way to die, but it’s a s****y way to live. Most people diagnosed with ALS lose the use of their legs within two years. I was lucky to get three pretty good years in, on my feet.
I lost my voice and my ability to swallow. I haven’t tasted food or drink in over two years, and I loved food. I choke on my own saliva and mucous, so I can’t be too far away from my cough assist and suction machines. I use those machines anywhere from eight to 30 times a day to clear my airway. I can’t dress myself. I carefully plan my day around bathroom breaks, because I can’t get into my own pants.
Now, my limbs are very much affected and deteriorating quickly. I depend on my hands to communicate, and once I lose that ability, I will have very little quality of life left.
I told the ALS Clinic team from the beginning that I was willing to try any intervention that could keep me doing the things I love to do. But when I could no longer do those things, or when the interventions made up the bulk of my day, I would pull the plug. At the time, I meant that I would withdraw from feeding and care (giving up my non-invasive breathing support and medication). The team would then provide meds to keep me comfortable and let me die naturally.
The Supreme Court’s Carter decision allows for a more dignified and peaceful end than starving or choking to death. Today’s decision has laid that worry to rest for me.
After the Sue Rodriguez case, and watching my grandmother die in agony with liver and pancreatic cancer, I have believed we need to offer human beings the kind of merciful death we all offer our pets. After the Carter decision, I began focusing my efforts on ensuring the government of the day would enact merciful legislation. I was named to Alberta’s Provincial Steering Committee on Medical Assistance in Dying as a Patient and Family Representative, and that work continues.
I am glad to have some meaningful work to do. But when I lose the use of my hands and my means of communication, I will be grateful that I have the exemption. I am grateful every day for the support of family and friends, my health and home care teams and the ALS Society of Alberta.”
Watch below: Earlier this week, Su-Ling Goh spoke to an Edmonton man with ALS who says he is relieved to have been granted a medically-assisted death. In part two of her series, Su-Ling looks at why some people say a terminal illness doesn’t have to mean the end of living.
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