Tuesday, 22 May 2018

Heart on the Table - a True Story

“I don't want to have this illness,” I cried out to the doctor and social worker  who stood nearby.
“ I hope with all my heart that with the 10 percent chance that I have something else, that I will find out I have something else. Many patients with cfs wish they had cancer instead. That's how bad this illness is.”

The doctor got paged out, but the social worker sat listening still. I wish I'd picked up then that her attention was wavering, that she longed to escape the confines of this room where depression loomed so large, unable to be shaken out by the piercing fluorescent lights. I wish I'd known then, or I wouldn't have put my whole heart on the table. Instead I began to count out the reasons why I needed to not have cfs.

  1. There is still very little knowledge about cfs
  2. There is instead vast amounts of misinformation about cfs
  3. There is a lot of stigma about cfs, with most doctors falsely believing that it has a psychological component.
  4. There is no cure for cfs.
  5. There are still no approved evidence based treatments for cfs
  6. Worst case scenarios… I end up tube fed or on an oxygen mask for the rest of my life, or even die from complications of the disease
  7. The average life expectancy is only 48 years old.

There had been a darkness in my voice all the way through, a thread of despair. I was vulnerable, open, willing to be seen.

“Right,” she said, “ I'll give you my card.”

I had been vulnerable, open, willing to be seen. Now I was crushed, and crawled back into my shell. Rejection and humiliation hung over me like a thick goo.

I'd given her my story, and she'd turned away.
I'd put my heart on the table, and she'd crushed it with a thousand weights.

Monday, 21 May 2018

Beautiful Chrysalis

I am a beautiful chrysalis
You prod me from the outside
With your beautiful scientific instruments
Wanting to measure the darkness.
My great grandfather had a labatomy.
And I'll fight for my autonomy.
Sometimes I feel like there's a silver mirror
Held up inside my cocoon
Reflecting the darkness,
But with shattered pigments of light.

(C) Katie-Jayne Boardman 2018

Sunday, 20 May 2018

Why I'm so Against Euthanasia

A few months ago one of my last conversations took place with a friend with whom I soon after parted ways. Euthanasia was not a decider in the end of our friendship; there were far greater issues than that. But our heated disagreement over it certainly helped to open my eyes as to just how fundamental this issue was to me.
If it had been a mere philosophical discussion about the ethics of life, I wouldn’t have minded. But she was at the opposite side of 50 to me and insisted that I acknowledge her right to end her own life (with the aide of another). I’m not sure when people began to think that this was one of our fundamental rights as humans, but as far as I’m concerned, such a right does not exist.
She also claimed that those with terminal illness and chronic lifelong painful conditions should be given the option to die with dignity. I pointed out that for a few years life was not getting any better for me either and that I might have also thought myself entitled to this option. I have since found out that I have two lifelong health conditions which will significantly impact on my quality of life until I die. Without either of us knowing it at the time, she was also pointing to euthanasia as an option for me.
How do I feel about this? Well, I have no doubt that some people in the autistic community (to which I belong) would jump in glee to have their right to euthanasia recognized. From some of the morose message boards I’ve encountered online, this assumption is not far-fetched. But personally, I am infuriated. A life is a life. Each is worth as much as the next. Old, young, able, disabled, productive, unproductive, suffering, not suffering, and all the shades in between.
The recent trend towards euthanasia marks some clear attitudes in our culture right now. Firstly, ableism. If you are chronically or terminally ill then it’s likely you are disabled as well. Since our culture measures worth by productivity, then by being disabled you are also worthless, and therefore, yea why not introduce a bill that will allow you to dispose of yourself neatly and cleanly?
Secondly, is the turning away from suffering- not wanting to have it present. Not too different from our turning away from death. Somehow we’ve made our modern society so clean and pristine that to suffer seems unnatural, and abomination. Yet in all the centuries that have come before, people have lived day in day out with suffering. This ‘die with dignity’ seems a relatively recent phenomenon.
Many beautiful examples of dying in dignity without the use of euthanasia are found in accounts of the lives of Buddhist monks and Christian martyrs. And these are only some of the more extreme examples. I don’t believe that you have to be religious to embrace suffering as a fact of life, and to come to peace with it. In addition, when did the law come in that the only thing that constitutes life is up-beatness and positivity? Suffering is just as much a part of life as all of that, and so is death.
The road towards death, or even living with a chronic condition, are both states of being dependent to varying degrees. Yet I argue that this dependency is only so unpleasant because it’s not going to go away, or may even increase. Dependency at the beginning of life is a factor for everyone, and no one is up in arms about the loss of dignity to babies. We begin helpless and end helpless. Some get to be more independent than others in between. But dependence is more of a given than independence. I don’t see where dignity comes in. These are natural facts of life.
I would argue that to deprive someone of their natural death is actually stealing from life. Death, although I am deeply afraid of it myself, is one of our greatest opportunities to grow, discover the jewels in suffering and experience life. Depriving someone of their worth due to how unproductive or in pain they are is theft of the opportunity to live what is still always just a fulfilling and meaningful life as the next person.
There have been striking parallels drawn between the modern day bureaucratic system that promotes euthanasia, and the extreme bureaucracy of the Nazis which enabled non-thinking officers to simply acts as cogs in the system and send people to their deaths. Both hold an ideal of non-suffering, productive lives, and both provide the means to dispose of lives that do not meet that threshold. These ideals, however, are far from the truth of how lives actually turn out.
Lives are messy and complicated. And while some suffer more than others, everyone suffers at some point in time and needs to be dependent. Maybe the open expression of that should be the idea we are aiming for.