Diary of a Bad Year

I’m stealing the title of J.M. Coetzee’s book because I can’t actually steal the book, or come close to writing with the intensity, intelligence, and grace of which he is capable. And my subject matter is more literal: while it’s actually been 17 months, my bad year dates back to the beginning of Mark’s illness, when it became obvious that he was seriously sick. The diagnosis of nonresectable (meaning inoperable) pancreatic cancer came in August 2009, with a life expectancy of one to two years. He died on November 27, 2010.

I haven’t really kept a diary. I’ve written tangentially about the abysmal state of the medical industrial complex, much of it gleaned from experience in emergency rooms and hospitals and chemotherapy clinics, but I haven’t documented the day to day reality that was our lives. Or unreality, whichever it is. (In one of the last group e-mails I sent out to family and friends I said, “I find it’s increasingly difficult to write these updates. It’s almost as if Mark and I are in a separate reality—I use the term ‘reality’ in all its subjectivity, although as a pragmatist I have to assign some meaning to it.”) So the question is, how does one live with one’s mortality staring him in the face? I can’t answer that question, obviously, but I can try to describe how I lived with his staring me in the face.

Before I take that leap, however, let me make a list of all the other things that happened during this bad year. In October of 2009 my younger sister killed herself after years of suffering with fibromyalgia. In November Mark and his mother had a falling out and he decided he wanted to terminate any relationship with her and he did. In January of 2010 I was finally diagnosed with CREST syndrome, an autoimmune disease that affects connective tissue and causes a lot pain in my neck and hands. In May I had a recurrence of vertigo, which I’ve had intermittently for 30 years. While in the past it’s always been the positional type, where particles in the inner ear come lose and cause you to become dizzy when you move your head too quickly from side to side, this time the dizziness was constant, no matter what position my head was in, and it lasted most of the summer, in varying degrees of intensity. The ear, nose, and throat doc thinks I may have Méniere’s disease, which is caused by fluid in the ear, as well as positional vertigo. In September our dog Sammy, who is completely deaf, almost died when one of his benign fatty cysts got infected and spread venom throughout his system. But it broke and drained and he lived. In October, our cat Mavis, who slept with us every night and provided much love and comfort, didn’t come in one afternoon and disappeared forever. During the entire 17 months I watched our dog Django, who is 14, become increasingly crippled with arthritis, wondering, “Is she going to last through the summer?” and then, “Is she going to outlast Mark?” She also has a weak bladder and has to take estrogen to keep from peeing all over the house. I’m sure I’m missing some other events, but these are the salient ones.

Thinking about all this has kept me from thinking about Mark and how I want to go about telling our story. I know I don’t want it to be another cancer lament, using words like “battle” and “valiant fight” to describe what happened over his year and a half of living, filled with much sickness but also energy, connection, and good feeling. I know I want to protect his privacy, as I did in my group e-mails, which detailed the bare facts of his illness and the course it took. But I do want to talk about how I lost a partner of 34 years slowly, and incrementally, as he withdrew into a world no one else could share despite our physical closeness and frank conversations about his dying and my living.

This is the first posting of Diary of a Bad Year, which I will continue with over the next few months, interspersed with other postings more in the vain of what I’ve been doing since I started blogging in 2009.