I am dying. My death is completely preventable.
There are two pillars to my deterioration. The first is poverty and the lack of financial and care supports that a person on disability assistance experiences. The second is the abdication of care as I battle a 40-year war with a post-viral syndrome for which my provincial government refuses to pay for treatments.
My name is Madeline. Well, that’s the pseudonym that I’ve had to use as my medical team feels that the force of public pressure will kill me all on its own due to the current fragility of my health.
When I say that my death is avoidable, what I mean is that when I run through the last of my money next month, I will have to stop the oral and intravenous medications that I’ve been using to bolster my faltering health, because BC’s Medical Services Plan does not cover my life-saving treatments.
What I will face then is not being able to move, speak or eat as I lay trapped in bed experiencing horrific pain.
I have started the medical assistance in dying (MAID) process — now legal in Canada — not because I want to die, but because I will be faced with either the prospect of a slow, torturous death trapped in a poverty care home, separated from my community, my volunteering (my purpose), and my friends — or a quick death.
I’ve chosen the quick death — if you can call it a choice at all.
Post-viral syndrome has come more into the public eye of late with COVID-19 long-haulers, but it has existed as long as humans and viruses have existed. There is no name for the exhaustion and pain I experience as a result. Tired doesn’t begin to encompass it. The word agony has lost all meaning to me.
Poverty magnifies the disability.
The lack of money and supports afforded to people on provincial disability assistance is part of a larger societal bias that treats illness as moral failing. In BC, people on disability assistance receive around $1,000 per month less than a healthy person’s minimum wage at a 40-hour week; this means we have no chance of managing our illness.
From the minute I went on disability assistance, I was treated like a criminal. Over the decades, I have experienced compounding micro-aggressions. Attitudes like, “if you only tried harder, you would get better,” or “you must have done something wrong to deserve this.”
The deprivations on every front that people on disability assistance experience are a human rights atrocity, but it is also fiscally illogical. It is always catastrophically more expensive to allow a person to deteriorate. And if you look at the larger bureaucratic expense of micromanaging and refusing supports, money is not really the issue here.
Who are we as Canadians? Because if the way we treat disability supports is neither economically nor medically logical, then we are deliberately torturing and punishing people with disabilities on assistance for no other reason than we can — and deep down we somehow think they deserve it.
My real-life name means ‘strong rebel warrior in a sea of sorrow.’ Little did anyone know when I was named how true that would end up becoming.
My friends organized a GoFundMe campaign, but the last of the money will currently run out the first of December when I’ll be faced with, not just a $40,000 medical expense debt, but death itself. To be a heartbeat away from death induces a terror that pretty much has me crawling out of my skin again. While I’m incredibly grateful for the support, I shouldn’t have to beg for my life on the Internet.
With my friends, we have also created a podcast, I AM MADELINE, with the hopes that we could create an understanding of the situation so many people with disabilities in Canada endure. My experience is one of many.
Now, I’m asking for your help. I’m asking you to speak up. Write a letter, make a phone call, tweet something at whatever government is in play in your area.
If you, my fellow Canadian citizens, don’t insist on an improvement so that persons like myself can at least have a chance at an adequate quality of life, I don’t see how this can possibly change.
I hear about the introduction of new laws regarding accessibility for persons with disability, but the thing I need access to first and foremost is an adequate quality of life. And the thing I ultimately need access to, is the ability to remain alive.
Photo courtesy of iStock
