Nevertheless, the article resonated, and I felt grateful for yet another role model—a sicky-smarty who has managed to navigate illness, even to let it change her, without letting it define her.
My favorite quotes:
“In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way you can’t be. ‘Pain is always new to the sufferer, but loses its originality for those around him,’ the nineteenth-century French writer Alphonse Daudet observes…. ‘Everyone will get used to it except me.’”
“What I had wasn’t just an illness now; it was an identity,
a membership in a particularly demanding sect. I had joined the First Assembly
of the Diffusely Unwell. The Church of Fatigue, Itching, and Random Neuralgia.
Temple Beth Ill.”
|Not that I've ever coded anything, but you get the idea.|
“You can’t muscle your way through the enervation and malaise of autoimmunity—if you could, I would have.** The real coming to terms with autoimmune disease is recognizing that you are sick, that the sickness will come and go, and that it is often not the kind of sick you can conquer. But, once you’re feeling O.K.-ish, trying to be the Best Patient in the World can become an isolating preoccupation, even another form of debility…. In order to become well, I would have to temper my own fanatical pursuit of wellness. On the model of D.W. Winnicott’s good-enough mother, the trick was to be the good-enough patient.”
She goes on to write about eating a slice of (gluten-free) cheese pizza, even though cheese is on the list of things that aggravate her condition. I have my own reasons for avoiding cheese, but I had some (homemade, veggie-laden, whole-wheat-crusted) cheese pizza the other day. With any luck, I’m in this lifestyle for the long haul, which by definition means it can’t be perfect, just good enough.
*Knockonwood—because the alternative to years of checkups and estrogen-blocking meds is an acute disease that could kill me.
**Again, not really my situation. But I’ve come to realize that many of my struggles in life could be summed up as misdiagnosing basic human experiences—exhaustion, sadness, denial—as failures of willpower. “We call that a mistaken belief in your own omnipotence,” AK said the other day, re: a guy in our yoga class who was coming dangerously close to quoting The Secret. Belief that you and others can power through shit is hugely egotistical. You are a piece of stardust in a very big universe, my friend.