Shanaaz's story

Shanaaz Gokool

If God is ready to take me, I am ready to go.

These were the heartbreaking words my father whispered to me late one spring evening more than 25 years ago.

My father had a third heart attack in 1987 and a week later he suffered a debilitating stroke that left more than half his body paralyzed, temporary speech loss, with significant memory loss and confusion.

Prior to the stroke, he was a pillar of social justice, as a teacher who taught children with learning disabilities and then later as a civil servant with the Government of Canada. He volunteered countless hours to promote development and education programs in the Caribbean and the Global South, and was a certified umpire with the Cricket Association of Canada. He was the reason I became a human rights activist. He taught me about his philosophy of truth to action: when we see injustice in our world, our morality must guide us to action. We had many lively discussions and debates — often well into the wee hours on a weekend morning — on everything from race relations in Nova Scotia to Middle East politics.

After the stroke, our family witnessed the unrelenting decay of the quality of my father’s life. He fought hard to recover, but after a few short months it became evident that this was not going to happen. It was impossible to turn back the clock.

This was at a time when doctors and health authorities would make healthcare decisions without proper family consultation. My dear father was shuffled around from various institutions and at one time ended up, at age 46, in a senior’s home. He sat in a wheelchair, on the wheelchair-inaccessible third floor, in the middle of the summer. It was hard to watch and feel so helpless.

One evening my father’s best friend came to my workplace and told me that they had moved my father and that I had to come now. In the latest facility where he was taken, my father was so overcome at times with grief  over the daily indignities of not being able to toilet or bathe himself, not being allowed to go outside without supervision, knowing he would never walk again, that he said he would rather die than live this way. He was angry to be sure, but hardly a threat to anyone else or himself. That day, without notice or consultation, they moved my father to what was known at that time as the Nova Scotia Hospital — the province’s largest mental health hospital. The hospital, which was over 130 years old, was well known by previous names: the Provincial Hospital for the Insane, Mount Hope Lunatic Asylum, Nova Scotia Hospital for the Insane. 

My father knew exactly where he was and he was devastated to find himself there. When I walked into the triage room, my mother, younger sister and older brother were gathered around him. He was pleading with them to not force him to stay. He was begging, looking so distraught at their sad faces. When he saw me enter, he exclaimed: “Finally, Shanaaz is here! I know you won’t make me stay here.” I will never forget the crushed look on his face when he realized that even his activist daughter could not help him. And though the staff at that hospital were hardworking and kind, my father remained clear-eyed about where he was and why he didn’t belong there. A few months later, early one cold November morning, he died, alone, in that hospital.

This is what indignity at death does. It makes us all complicit in the guilt and suffering of our most dearest.

My father's passing did not immediately make me an advocate for choice at end of life. The concept of assisted dying wasn't on our family's radar. Sue Rodriguez would launch a national debate four years after my father died. I was 20 years old, and though I was an activist, I didn't know how to find meaning in his death. I did not have an "Aha" moment.

However, I continued to find meaning in his life. His internal compass on human rights became my North Star when I transitioned 10 years ago from the private sector to the not-for-profit sector. Working with Amnesty International, The Association in Defence of the Wrongly Convicted, Leadnow.ca and taking on volunteer leadership positions have combined my passion for human rights with solid campaigning skills.

It wasn't until I learned about Dying With Dignity Canada a couple of years ago, combined with the recent passing of another dear family member, that it hit me. Finally, I truly understood the indignity and suffering that my father endured so many years earlier. I don't know with absolute certainty that if my father were still alive, he would support assisted dying. I do know that he supported the right to choose on so many other issues; it would be difficult to imagine he would feel differently about this one. Regardless, it was my father's story that brought me to the doors of DWDC. I know he would be pleased that I have found meaning in his death, even though it happened so many years ago.

I continue to be guided by my father's  wisdom that injustice must be met with action. I look forward to the day in the near future when all Canadians will have meaningful access to their fundamental human right to an assisted death.