The story of my last decade is mostly the story of my wife Tara’s illness. In 2003, after a couple of months of mysterious symptoms, Tara was diagnosed with ovarian cancer and had a hysterectomy. The cancer was very early, stage 1C, and the surgeon told us that many doctors would not have recommended any follow-up treatment. He strongly advocated chemotherapy and talked us into it.
Halfway through her course of chemo, which lasted 4 months, Tara started having trouble writing (her profession for almost 50 years!) and with short-term memory. About that time the surgeon left his position at the hospital and Tara was sent to another hospital to complete her chemo, where she received no supervision and almost no attention. When she complained about the memory problems, she was told she probably had chemo-brain and it would eventually go away by itself.
It didn’t go away. After five years of attempted treatments and diagnoses, we finally wound up at Columbia-Presbyterian in New York, where a neurologist specializing in memory disorders sent her for some high-tech tests. When he showed us the results, they demonstrated extensive brain damage. He theorized it had been caused by an opportunistic infection suffered while the chemo was suppressing her immune system. There was no possible cure or treatment, he said.
She was still able to care for herself to some extent, and when my father was dying in February 2008 I was able to travel to Albuquerque for a few days. But her continuing difficulties forced me to close down my mail order business in October, 2008, and to sell the house I was using to run the business out of. I’ve only been able to do small amounts of part-time work since then. I still publish a few CDs (one DVD), sell some used CDs through Amazon, and do a little writing including my Woodstock Times column, now ongoing for more than 35 years.
During 2008, I learned of a treatment called neurofeedback which was offered by Dr. Steve Larsen in Tillson. I took Tara to him twice weekly for eight months, and she had a brief period of serious improvement. A neurologist she saw both before and after the treatments started said he had never seen such remarkable improvement in someone with her condition in so short a time. But by the end of the year the treatments had stopped working and we ended them.
We had another try with Larsen in 2010 combined with a woman he recommended named Barbara Dean Schacker, who has developed some effective treatments for stroke recovery. We tried them because strokes cause similar damage to what Tara had suffered. They had some beneficial effects too. We also went for some months to a speech pathologist for something called cognitive therapy. Both of these caused some short-term minor improvements, but they each stopped having any effect. By the beginning of 2012, in consultation with all the therapists involved, I decided to stop all treatments, all of which Tara had come to dislike, and simply focus on her comfort.
I had started writing poetry in 1999, as a result of a series of nightmares. I’m still not sure why they inspired me to write poems, a completely new activity for me unless you count the song lyrics I wrote in the ’80s. (I don’t.) But I had some success, and a lot of encouragement from Tara and from a wonderful local poet named J.J. Clarke, who took me under his wing because he’d enjoyed my radio programs.
I worked on poetry as a kind of mildly gifted amateur for several years, but then got more serious about that activity after I got to take two brief workshops at Omega Institute with Sharon Olds, one of my poetic idols. Olds was very encouraging and advised me to get into the local poetry community, which I have succeeded in doing. I’m now a regular at most of the local open mics and often a feature. I belong to a working group we call the Goat Hill Poets, which meets monthly to critique each others’ work. We’ve performed as a group several times. I’ve had some publications, planning to submit a lot more work, and I now have a daily work schedule which I keep up most of the time. In July, I will be taking a 12 day workshop with Billy Collins, who is probably aside from Olds the poet I would most like to work with. (Olds isn’t doing workshops any more, alas.)
Caring for Tara, who has now deteriorated to the point where she can’t remember my name or tell you hers, has probably been the most difficult task of my life, despite my having cared for my two dying children decades ago. It’s a lot more exhausting than it is ennobling. But there is at least some satisfaction in knowing that I am providing for this splendid woman the care she needs after more than two decades of the way she glorified my life. And I’m arranging for more time to myself so that I can write and do other satisfying things.