Writing about Death

I face Death daily

One of the topics I'm covering in FibroShark Hungry is facing the prospect of death. This is a pretty uncomfortable subject for pretty much anyone, but it would, let's say unhelpful, to leave Death out of a book about self-advocacy for people with chronic illness.

One aspect of able-bodied privilege has been cleverly described as "the headache you don't know you don't have", but another, hushed-up aspect is that when you have a chronic illness chances are good that you're going to have to face that illness until you die.

Having a chronic illness means that, unless there's a cure that has zero side-effects and provides 100% remission of all symptoms for the rest of your life; you're never going to get better. If your illness or condition is degenerative, it will progressively get worse until you die. If your illness is terminal, it will most likely be the cause of your death.

I must include these facts in the book because facing Death is the only way to make it less scary. I think that's part of why the late Terry Pratchett included the anthropomorphic character of Death in virtually every book he wrote. Death is an inescapable part of life. And it's one of the scarier aspects of having a chronic illness.

Since I was a teen, I've moved thru my life with Death as an adviser. I read a quote from the Dalai Lama on how he meditates on Death 13 times a day. It was a morbid time in my life, so I thought it was really cool that the spiritual center of my rebellious years* was so thoughtful on the subject. It wasn't until over a decade later that I fully realized the meaning of His Holiness' contemplation of no-longer-living.

Death doesn't have an agenda. It just happens. Everyone dies. You will die. The people you love will die. The Earth will die. The Sun will die. Every cell that ever divided, ever atom that ever collided. Life is impermanent. The only thing any of us is guaranteed is our current exhalation.

That's some heavy shit for what is effectively a comic book.

But it's a giant part of being sick. And I'm grateful to have my illness slow me down to the point where I must face my own mortality because when I look Death in the skull, I can see what's really important in my life. Those things which are real, and permanent - & frightening.

And extremely difficult to articulate.



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*Yes. My form of rebellion was to dig so deeply into Buddhism that my first tattoo was a meditating Sidhartha Gautama Buddha.