Terminally-ill man happy with assisted-dying bill, but happier he won't be relying on it

John Tuckwell won a court order to access doctor-assisted dying before bill passed; won’t have to go through the same process as others relying on federal legislation

'I feel relieved that I have the exemption, given the uncertainty around the issue'

John Tuckwell, who suffers from ALS, offers a unique view of what Bill C-14 will mean for Canadians 1:29

John Tuckwell would wake up in the morning, take his dog for a run and then go to work. After, he would often visit with friends before taking off on a bike ride.

That was four years ago.

"Now, I manage my symptoms all day," Tuckwell's iPad says in a robot-like voice.

His eyes reflect a resigned sadness as he laboriously raises his left arm from his shoulder so that his left thumb can hover over the touch screen.

He enters letters slowly, forming words explaining that he was tired and needed his breathing machine.

Tuckwell was 50 years old in 2012 when he was diagnosed with a form of the terminal neurological disease amyotrophic lateral sclerosis, or ALS, called bulbar lumbus.

ALS is the same disease that Winnipegger Sue Rodriguez struggled with when she began advocating the decriminalization of doctor-assisted dying in the early 1990s. 

Bulbar lumbus paralyzes from the top down, so Tuckwell — who spent his career managing communications for the Alberta government — first lost the ability to speak and swallow, which meant he was unable to eat, or to taste.

But he found the silver lining.

'I think that ALS focuses one's life'

"I was lucky that my ALS began in my throat. Though the loss of my voice made work difficult, I was still able to do stuff that I loved to do," Tuckwell said through the text-to-voice program.

"Every case is unique. I think that ALS focuses one's life. It makes the important stuff all the more important."

In 2013, he travelled to Tibet with his father, who was then 83 years old.

Tuckwell motioned to a photo book on the coffee table in his sunny living room. The pages show him posing variably with his father, a beautiful temple, a monk, a group of children.

John Tuckwell visited Tibet with his father in 2013 before his symptoms grew worse. (CBC)

"My legs started going shortly after Christmas and now I can barely walk," the voice said, with Tuckwell nodding for emphasis.

Since then, Tuckwell said his condition has been deteriorating more rapidly.

Once an avid skier, he now struggles to bend and unbend his legs, stumbling forward slightly when he rises from sitting. Outside of his home, he uses a wheelchair.

'Diagnosis made it more urgent for me'

"I have believed for a long time that we need to offer people the choice of medically-assisted death when they are contemplating end-of-life care," Tuckwell said. "My diagnosis made it more urgent for me."

Early last year, the Supreme Court of Canada struck down the ban on doctor-assisted death as it pertains to mentally competent, but terminally ill people with unbearable symptoms.

The federal government was given one year to come up with legislation to reflect that.

Tuckwell was worried that the legislation wouldn't pass, at least not in time for him.

He took his case to Alberta's Court of the Queen's Bench, winning a decision on May 6.

When he can no longer communicate Tuckwell will seek out a doctor to administer him a drug that will end his life.

"I feel relieved that I have the exemption, given the uncertainty around the issue," he said.

Even though the federal government passed the legislation, he won't have to go through the same channels as others trying to seek access to doctor-assisted dying, which is restricted to people whose deaths must be "reasonably foreseeable."

Tuckwell was "disappointed that the federal government included the clause," even though he'd still qualify under it.  

A joint statement by the health and justice ministers said the legislation "strikes the right balance between personal autonomy for those seeking access to medically assisted dying and protecting the vulnerable."

Tuckwell acknowledged the issue of doctor-assisted dying has been controversial, that legalizing it is a big change and "for some, it's a scary change."

He could have sought the court order allowing him to seek a doctor's help to die without ever revealing his identity, like a Calgary woman did a few months before him.

But Tuckwell said he wanted to help people better understand some of the reasons for doctor-assisted dying.

"I think that when people are well informed," the iPad said with Tuckwell nodding along, his breathing heavy, "there's more comfort with any issue."