Open a Book. Choose a book and open it to a random page and point to a phrase. Use that phrase to get you writing today. Free write for 15-20 without stopping.
This is not a random page but one of my favorite books about living with illness. The Two Kinds of Decay by Sarah Manguso is a memoir of the autoimmune disease that tore through the author’s twenties, a decade of recurrent paralysis, collapsed veins, chest catheters, the deaths of friends and strangers, addiction, depression, and the trite metaphors that accompany prolonged illness.
Here is one of my favorite phrases from the chapter titled “Causation.” She writes,
Was the CIDP a physical manifestation of a spiritual illness?
Did the medication trigger the depression, or did the depression trigger the CIDP?
What about those yogis who can lie down on a bed of nails, then arise, streaming blood, then stop the flow of blood from each wound individually with the power of their minds? Isn’t frailty often a choice?
And if frailty is a choice, then isn’t autoimmune disease a semi-intentional suicide?
That statement stops me in my tracks every time I read it. As a woman with type 1 diabetes, I too have an autoimmune illness, and until I read this book, I’d never really considered the implications of an “autoimmune illness.” I know that our disease are very different, but like Manguso, I wondered what it meant that my own body was waging a war on itself?
When I was little and feeling sick, my dad used to tell me to think about polar bears. The polar bears were supposed to be healthy cells fighting off my sickness-my fever or strep throat or whatever it was at the time. It was the 70′s and my parents were hippies and this was his idea of a healing, positive visualization. But I didn’t like the idea of polar bears in my blood. It made me queasy. I just wanted to have someone give me medicine and make it all better.
I thought of the polar bears again when I was diagnosed with diabetes. I think it was more of a sarcastic teenage thought like, “Yeah, see dad, those polar bears didn’t do any good. Look what happened to me.” I wallowed in the ‘poor me’ phase for a long time. And I definitely didn’t believe that I had any sort of internal choice in the matter. I was stuck with diabetes and there was nothing I could do about it except feel sorry for myself and/or ignore it. Looking back now, I see that ignoring it was a sort of suicide. It wasn’t until I let my diabetes out of hiding that I felt like I had a choice about living well with diabetes.
26 years later, I chose how I manage diabetes. I did not choose to be diagnosed or to be “frail,” but I do choose to live my life well.