Jay Lake (jaylake) wrote,
Jay Lake
jaylake

[cancer] How to be sick, how to die

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, by Toni Bernhard

Yesterday on the plane home from New Mexico, I read a book Lisa Costello had given me called How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, by Toni BernhardPowells | BN ]. It was an interesting read, raising a number of points which resonated with me, and few which fell flat for me. Being a Buddhist, Bernhard isn't even remotely prescriptivist in her observations, which I appreciated a great deal.

This morning, Lisa and I were talking about the book. Once again, I am struck at how cancer (at least in my case) falls ambiguously between the usual working definitions of chronic and acute disease. Bernhard writes from the point of view of someone with Chronic Fatigue Syndrome, which for her is persistent and pernicious with unrelenting symptoms. For me, cancer has certainly been persistent and pernicious, but I can count on the fingers of one hand the number of days in the past five years in which the disease has expressed noticeable symptoms.

My treatments, on the other hand... Over thirty days of hospitalization. Five major surgeries. Five minor surgeries. Over 1,600 hours of chemotherapy. Close to two cumulative years spent coping with extreme chemotherapy side effects. Almost four calendar years continuously coping with relatively minor chemotherapy side effects.

Yet I just spent a week at a writing retreat in New Mexico at 10,000 feet of altitude, and arrived home at almost midnight from a long travel day. Something Bernhard could never have done. Something most sick people could not do. Admittedly, my mobility was reduced by the Vectibix sores on my feet, and my medication-induced sun sensitivity kept me indoors — I paid some prices — but I was still able to derive considerable enjoyment from the experience.

I come back once again to the question of whether I have been a sick man who is sometimes healthy, or a healthy man who is sometimes sick?

At this point, given my terminal prognosis, the question is entirely moot. I started Regorafenib this morning. That means that yesterday was probably the healthiest day in my remaining life experience. I am embarking on the downhill slide into death. But still I wonder. For me, cancer has largely been an invisible disability, unless you catch me on a very bad day or see me with my shirt off to wonder about the surgery scars and skin disruptions. Yet it has overtaken my soul, metastasized into my entire life and social network and circle of love and friendship. I have shouted its discontents across the rooftops of the virtual world.

That I have a voice to shout with is itself a sort of secular miracle.

Right now, my reaction to Bernhard's book How to Be Sick is to want to write a counterpoint on how to be sick with a disease that wanders back and forth across the false dualism of chronic and acute, that is both invisible and as noticeable as a bonfire in a library. Her experience and mine have a great deal in common. At the same time, deathly illness is a road we all walk alone, no matter how great our escort.

More to the point, I suppose I am writing a book on how to die, one blog post at a time.

Tags: books, cancer, family, friends, health, new mexico, personal, radiantlisa, reviews, travel, writing
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