Toni Bernhard's How to be Sick is probably the best 'living with chronic illness' book I've ever read.
The book begins with the crux of the issue. You get sick; you don't get better. Bernhard, who suffers from CFIDS with a side of POTS and neurally mediated hypotension is perfectly correct to suggest that our Western society focuses on getting well not living well while being ill. With a Buddhist philosophy it neither concerns itself with the question of the future ('How do I get back to work?') or the past ('Why did this happen?')
It reminded me of a conversation I had with a friend with CFIDS right before I left Chicago, being unable to take care of myself any longer. She said, "Don't let it define you."
I spent a long time trying to decide how much space to afford to the thing called "Ehlers-Danlos Syndrome" in the entity called 'me.' This caused (and causes) me a lot of angst because I don't want to give EDS a large plot of myself, but it has taken one. It has left me helpless to pursue my goal of teaching. It has put me at the mercies of people who only care about whether I have a job insomuch that they can judge me for not having one. In other words, because they lack the knowledge necessary to help me, all failures whether social or physical are my fault. This is why knowledgeable doctors, those rare angels, seem like the nicest people in the world.
I know that EDS isn't going to kill me; neither is it going to get much better. Periodically it will sit on my chest and I will have no choice but to wriggle and struggle and try to breathe...but I must not let it define me.
Though it clearly will (and has) changed me.
Here Toni Bernhard has an advantage. Buddhism teaches the mutable self, Christianity the immortal soul. Her way makes it easier to be sick. Well not easier, but it frees you from the burden of integrating "sick" because there is nothing to integrate sick into.
To a Buddhist, Ehlers-Danlos Syndrome is just something that happens to be acting on the collection of sinews, fluids, fibers, thoughts and feelings collectively known as 'Yvette.'Because the Buddhist 'self' is ever in flux, there is no need to worry about EDS ever defining me. There is no 'me' to be so precisely defined.
But I'm not Buddhist. If I had been raised an atheist, I would have been the disappointing kind who finds her way back into religion. I might have chosen Buddhism because it seemed like a challenge.
Not allowing a concrete 'I' to exist when you are a Black woman in a country like the United States is dangerous, because others will constantly try to define it for you. Not necessarily in words...not necessarily even in actions. But the very atmosphere of this country is somewhat poisonous because of its history and merely living here will expose you to it.
From a young age, I carved my 'I' out of solid steel. No, I am not like that. I am not ugly. I am not stupid. I am not a slut. I am not lazy.
For example, there's a certain shopping plaza on the far west side of Cleveland where I occasionally go because they have a nice restaurant, a Mac store, an Apple Store, an Urban Outfitters and other fun stuff. It is also in a neighborhood with very few blacks. No doubt some residents wanted it that way, so whenever I shop here I get all sorts of unfriendly stares. The stares are a combination of fear and hostility and disgust.
Yes, that frank, although only for the briefest moment.
I'm accustomed to it. Under that gaze I shop, stroll the rain-slicked boulevards. Under that gaze I drink wine, eat, laugh and joke with my friends and family. The gaze does not inform me. It does not deter me. It's merely something that falls on me, like rain. And because I have been in the gaze for so long, because I am so wet, I cannot get any wetter.
When my Ehlers-Danlos Syndrome made itself known to me, there were times I had to walk with a cane. And the presence of the cane brought a new gaze. A woman stared at me almost as if I were a child, a sickening mixture of pity and condescension and something else I couldn't quite place.
I didn't like it. I didn't like its infantilizing nature. The stare represented what I was going to have to integrate into the 'new' me. Though I don't want to and will sometimes not use my cane and just walk very, very slowly.
But sooner or later....
I admit that one way I deal with very bad pain is to divide my thoughts from my body, thinking, 'My body is in pain' instead of 'I am in pain.' Try it. Occasionally I will divide thoughts from my feelings to find errors in my thinking.
I tried Toni's experiment to live in the present, to stop regretting the past and dreading the future. I was almost in tears about whether or not to spring for the part time teaching job, when I looked up and took in the landscape.
What was true right now, Toni asked?
I thought, 'I am a woman standing on a deck, gazing over the fall foliage.' For a moment, the present was an untapped mine of beauty. The fall trees were beautiful, variegated yellows and oranges. The remaining green was just a blush.
It was warm but the breeze had just a hint of chill in it, like water with a single ice cube. The tall grass shivered in the wind. My neighbor's pentatonic wind chimes rang. The sky was open, endless blue.
I do it again now. I am a woman, typing at a desk that belonged to her father when he was sixteen. It has recently gotten two coats of bright white paint. Cotton curtains with lace embroidery hang over the windows. It is quiet except for the sound of my typing. No one is bothering me; I am not in pain. I am not hungry or thirsty. I am warm.
For the moment, nothing else is true.
But I can't give up 'me.' I can't keep dividing until I get down to nothing.
Nevertheless, you really should read Toni's book. She understands the middle ideas, neither catastrophizing or glossing over the reality of being ill.