Honestly, a lot of what I get to read for my work is pretty dreary stuff. Disabled people who want to kill themselves, family members who want to kill incapacitated “loved ones,” and elderly guys getting a pass from the legal system when they kill their ill wives are just some of the fun things that come through my news feed in the course of a month or particularly bad week.
Once in awhile, I’m pleasantly surprised – astonished really – at a breath of fresh air in what often seems like a steady tide of “better dead” than disabled propaganda coming at me through various media.
Last week, The Guardian published one of those blasts of fresh air.
Below are a few excerpts from “Should I take my own life?” by Guardian writer Charlotte Raven:
In 2006, 18 months after the birth of my baby, I tested positive for Huntington’s disease. The nurse who delivered the news hugged me consolingly and left me with my husband and a mug of sweet tea to cry. In the days that followed, I began to realise why so few of the people at risk of inheriting this incurable neurodegenerative disorder chose to find out.
This incuriosity had seemed to me irresponsible. Having discovered the previous year that my father had the disease, I had been offered a test that would tell me for certain if I, too, had inherited the gene. In the months of debate I’d had with my husband about whether to take the test, I’d always been on the side of enlightenment. I calculated that the trauma of finding out would be offset by the satisfaction of being able to make informed decisions about my life.
I thought taking the test would be like finding out the weather before you go on holiday. If the outlook was gloomy, at least I’d know what to pack. In reality, it was more like finding out there was a bomb on the plane when you were already airborne. I felt impotent and envious of the uninformed majority. I wished I didn’t know.
Thoughts of suicide offer relief, at first:
My first suicidal thought was a kind of epiphany – like Batman figuring out his escape from the Joker’s death trap. It seemed very “me” to choose death over self-delusion. Ah ha, I thought. For the first time since the diagnosis, I slept through the night.
I was shocked to read the figures for HD-related suicide. One in four people with the illness tries to kill themself. I was surprised it wasn’t more. Rationally, you would have thought that everyone with the condition would realise the futility of continuing. Yet three-quarters of sufferers carried on. Why? Had they been duped by family members into believing they were not as far gone as they felt? Or were they falling for some misplaced belief in the sanctity of life? Their decision to cast the destruction of their identity and descent into madness as a challenge rather than a disaster seemed irrational, yet weirdly threatening.
Raven is familiar with the euthanasia/assisted suicide movement, listing their rationales for helping people like herself (or the one she will become) kill themselves. Eventually she analyzes them to the point of dissection, which paints a less than pretty picture of the arguments.
While Raven’s thoughts centered on suicide, her husband was of a different mind. Mulling on that barrier and the fact that her own father’s late-onset condition is the only experience she’s had with the disease, she goes on a journey:
Apart from my dad, I’d never seen anyone with HD. His affected relatives were all kept under wraps. I became fascinated by Wexler’s report of a community of HD sufferers in Venezuela where, through an accident of history, HD has become endemic. Her account of the inhabitants of the fishing villages on the shores of Lake Maracaibo was shocking and compelling, and eventually I decided to go there myself. En route to Barranquitas, I worried my curiosity might prove ill-advised. An article in Business Week said the town was “like something out of the Twilight Zone“.
What she found in the community around Lake Maracaibo affected her profoundly. It also changed the way she envisions her own future.
It’s a long article about a long journey – both literally and figuratively.
Please go read the entire article – now. –Stephen Drake
My college roommate left Oswego State,upstate NYS, at the end of our first year, in the mid1950s, to go back home to be with her father, who’d just been diagnosed with Huntington’s disease, on Long Island. He was a lab researcher. I’ve always paid attention to stories about Huntington’s, including the people in the village near Lake Maracaibo, Venezuela as covered in a science tv show some years ago. There’s historical as well as sociological aspects to this, also.
I recently heard an interview with Woody Guthrie’s daughter, mainly about his music that she’d found that had never been recorded. She was also talking about his life and his having Huntington’s disease. It was sad and shocking that in the 1950s or 1960s, it was not known what “to do” with him medically, so he was put into a psychiatric hospital in Brooklyn, where he lived all week and the family (wife, kids) brought him home for the weekend. He was unable to fork or spoon food well in his last period and his daughter mentioned that’s why he was so thin. I was shocked that the hospital didn’t provide him with someone to help him eat, on top of sadness that there were no supports for the family to have him live at home. Not ancient history. The mental hospital was a Dickensian scene.
Therein lies the key, yes? Society’s attitudes (including stupidity and fear)resulting in neglect of people with severely disabling illness, various disabilities.