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An author of no particular popularity

Jay Lake
Date: 2013-05-27 08:46
Subject: [cancer] How to be sick, how to die
Security: Public
Tags:books, cancer, family, friends, health, new mexico, personal, radiantlisa, reviews, travel, writing
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.

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User: martianmooncrab
Date: 2013-05-27 17:58 (UTC)
Subject: (no subject)
I have been a sick man who is sometimes healthy, or a healthy man who is sometimes sick?

..dont try to category, fitting the cancer into neat boxes of definition isnt a good use of time. You and your illness are both unique. Better to have a framework than solid lines.
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User: melissajm
Date: 2013-05-27 20:11 (UTC)
Subject: (no subject)
"I suppose I am writing a book on how to die, one blog post at a time."

I think you're showing us how to live with grace and class. And courage.
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User: a_cubed
Date: 2013-05-28 03:12 (UTC)
Subject: (no subject)
You beat me to it. My thoughts were very similar. Jay is showing us how to live, not how to die. Dying is easy to do (though often painful to experience and painful to watch, but easy). Living with limited time, knowing that you have limited time, knowing that time is shorter than it was expected to be, is hard. But in the end we all have limited time, we don't know when the end will come, though most expect it to be further away than Jay's (and some will be wrong on that). The big difference is that Jay has knowledge of how it's likely to happen and a short timescale. But his lessons about how to live while dying have, like all the best writing, good ideas for all of us.
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Tamara Kaye Sellman
User: Tamara Kaye Sellman
Date: 2013-05-28 03:55 (UTC)
Subject: (no subject)
I totally agree, Melissa!
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User: msconduct
Date: 2013-05-28 01:47 (UTC)
Subject: (no subject)
the question of whether I have been a sick man who is sometimes healthy, or a healthy man who is sometimes sick?

I've recently been reading Oliver Burkeman's book The Antidote: Happiness for People Who Can't Stand Positive Thinking. As part of his treatise on how people tend to treat the future as more valuable and important than the present, he asks the question: how many problems do you have that are affecting you right now (as in this very moment)? And unless you are in physical pain, the answer is probably none. Everything else is in your worry or fear about things that may or will affect you in the future. Applying this moment to moment approach therefore would make you a healthy man who is sometimes sick.

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User: yourbob
Date: 2013-05-28 17:29 (UTC)
Subject: (no subject)
"Dying is easy. Comedy is hard."

You're making comedy look easy.</p>

As I have said before, I hope fervently you're arranging to have these posts edited into some book form. Even if it is done as an unedited ebook it could be extremely valuable for many who are living through or with it.

Really. If you can't, find someone willing. I think it would be an important gift.

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User: emmainfiniti
Date: 2013-05-30 01:49 (UTC)
Subject: (no subject)
Thank you for sharing your life in blogs.
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my journal
January 2014
2012 appearances