This past week, the New York Times published an essay titled “Living Intimately with Thoughts of Death,” written by Susan Gubar, who’s been diagnosed with cancer. Her opening sentence reads, “Since my cancer diagnosis, I have lived intimately with thoughts of death.” But there’s an even better line further down in the article, when she quotes Sophie Sabbage, who wrote “The Cancer Whisperer.” Sabbage says that dying should be “the first thing to come to terms with when you’re diagnosed…not the last….We cannot control what happens to us, but we can control how we perceive what happens and how we choose to respond.”
Gubar’s article includes a link to a questionnaire (“The Death Attitude Profile”), which you can download and fill out yourself. It was created by psychologists, and it allows you to identify your own death anxieties, as well as your thoughts of what happens after you die, the possibility that you or a loved one will suffer a lot – and more upbeat stuff, such as feeling good about having lead a terrific life, and getting rid of end-of-life physical pain.
Gubar mentions that both she and her husband filled out – separately, of course – this questionnaire, and she was surprised at what it revealed in terms of differences between her and her husband’s attitudes about her potential demise. She writes, “The prospect of my own death arouses more fright in me than his does in him, but he is more convinced than I that death is a grim experience.”
As Gubar points out, people who are diagnosed with a possibly deadly disease (and I include Parkinson’s in this) lead a kind of double life. On the one hand, you still have the pleasures that life can afford: visiting with grandchildren; seeing a great movie; walking on the beach at sunset; downing a crisp, dry pinot grigio with your dinner of lobster ravioli in a butter-sage sauce.
On the other hand, you can’t help but be aware that at least some people (including people with Parkinson’s) face a grueling, end-of-life process. I recall writing about this in an earlier blog post:
Recently the New York Times published an editorial promoting physician-assisted suicide, in which it highlighted the case of John Rehm, husband of radio host Diane Rehm. “Severely crippled by Parkinson’s disease,” the Times notes, “his only option for ending the suffering was to stop eating and drinking.” His wife writes in a subsequent letter that “after suffering two bouts of pneumonia, brought on by John’s loss of muscular ability to swallow correctly, his doctor determined that John had six months or less to live and prescribed hospice care.” His agonizing death from self-imposed starvation was, Diane Rehm says, “an example of a courageous man who saw his disability as continuing to lead him to further degradation and loss of dignity. He chose to die on his own terms, without further loss of his basic abilities to function as a full human being.”
That sounds horrific and, while I’m thankful for Diane Rehm’s comments, I prefer not to think about it too much. It’s scary, but it may not be what happens to me, so why let it intimidate me right now in the present? Even though I started experiencing Parkinson’s symptoms about ten years ago, I’m still functioning somewhat normally (I work at a great job, I swim competitively, I write poetry…). When I do a Google search to find new academic articles to write about, I see possible links with titles like “The Five Stages of Parkinson’s Disease”…and I don’t click on them, because (1) I don’t want to know what the final stages are since I may not experience them; (2) for the time being I’d rather keep my head in the sand; and (3) I’d rather read an article such as the next one I have in my lineup: “Review on the neuroprotective effects of environmental enrichment in models of Parkinson’s disease,” published last year by Clinical Pharmacology and Translational Medicine.
However, I will admit that at night when I’m in bed trying to fall asleep, I sometimes go off on wild mental tangents about what might happen to me in the future and how I might die. But once I fall asleep and then wake up the next morning, I’m drowsy but chipper and looking forward to what the day will bring.
And usually, the day brings a lot of enrichening experiences.
