Ernest’s story: I live in constant excruciating pain. But I don’t qualify for an assisted death.

Ernest, an Alberta man who has requested that his last name not be used, has fibromyalgia. The excruciating pain he suffers daily has, in his own words, turned him into a shadow of his former self. Despite his suffering, however, Ernest has been denied medical assistance in dying because he does not meet certain requirements under Canada’s assisted dying law. This is his story.

*Trigger warning: There are mentions of suicide in the following piece*

On June 17th, 2016, Bill C-14 — Canada’s assisted dying law — was passed. That night, I attempted to kill myself. Despite the fact that I suffer from debilitating pain, I knew that my request for medical assistance in dying (MAID) that I had submitted on June 7th would be denied. My death was not, and is not, “reasonably foreseeable,” as required under the legislation.

At that point, it had been more than a year after the Supreme Court’s Carter ruling in February 2015, which struck down the federal prohibition on assisted dying. I waited with hope during that time.

But all hope for a final end to my pain was shattered when my request for MAID was formally denied a week after the law was passed. (I have not tried making a second request since I know it would be denied again.)

I’ve been in constant, irremediable pain for more than a decade. It is intolerable. Pain permeates every aspect of the waking nightmare that is my “life,” and when I attempt to escape through sleep, it invades my dreams.

"All that is left is the pain"

While medications offer a modicum of relief, they dull my mind to the point of stupidity. I have tried more than 20 treatments, with few providing even a short reprieve, yet alone making any significant improvement. I have used every treatment suggested by more than a dozen doctors and three pain clinics, with the exception of electroshock therapy. Five of the doctors have told me outright that there are no more treatments left to try. There are now two options left to me: I can live for the remaining decades of my “life” in pain, or I can cease living. It is not a choice I would wish upon anyone.

The shell of who I once was lives on, but the essence of my old self, the one that did not know endless pain, died many years ago. All that is left is a remnant, a shadow of who I was. Gone are all hopes, ambitions and dreams, save one: to end the pain. It is not a question of wanting to die, rather, it is a matter of not being able to truly live. I have been forced to surrender so much of that which made life worth living. I was forced to quit a job I enjoyed when the pain grew too great to allow me to work. Once a voracious reader, I haven't been able to focus through the pain long enough to finish a book in more than a year. Travelling to visit family has become impossible to imagine — even a trip to the city that's an hour away can take days to recover from. I can no longer even drive myself, as my many medications cause impairment. I leave the house for a few hours a week at best. I'm trapped within my mind, and all that is left is the pain.

I am going to die. I have accepted it. While I could continue living for many, many years, I choose not to. The pain is too much. I've lived with it for more than a decade, and I simply can't take it anymore. I'm done. The only way to end the pain is to die. It will happen by my own hand. This will be because I do not qualify for an assisted death. The law states that my death must be “reasonably foreseeable” in order to do so. Despite the fact that this provision appears nowhere in the Carter ruling, the government decided that I shouldn't have the option of an assisted death, and that it doesn't matter that I am mentally competent and suffer from an irremediable medical condition. It's my life. It should be my choice.

Dying With Dignity Canada thanks Ernest for powerfully and candidly sharing his story. We thank him for shining a light on the flaws in our assisted dying legislation.

There are mental health crisis lines available across the country if you or someone you know is thinking about suicide. You can find one where you live by going through the links on this page.

You may also wish to get in touch with Nino Sekopet, who manages our organization's free-to-use Personal Support Program.


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