The Personal Is Political—Yet Again
The poet, author, and feminist activist takes on a new challenge in this essay, adapted from her commentary on WMC Live With Robin Morgan.
In April of 2010, I was diagnosed as having Parkinson’s Disease.
Now, before everyone gets dramatic or lugubrious, let’s fling some facts into the mistaken assumptions mix. Parkinson’s Disease—let’s say PD—is not life threatening. It has a long trajectory of progression—12, 15, 20 years. People who have early onset, in their thirties, say, have a far more challenging span ahead than those of us who are diagnosed in our sixties. You do the math. I’ll be pretty tuckered out by 90 anyway. There’s plenty of time ahead for writing, politics, laughter, love. Meanwhile, I’m fine and my quality of life feels mostly normal. More about all that later.
A few words about what the disease is—though just a few, since there are excellent FAQs and in-depth explanations on the Parkinson’s Disease Foundation (PDF) and other reliable PD organization websites. Basically, the brain, for various reasons we do not yet understand, stops producing dopamine. There are genetic inheritable factors, but not always, and there are environmental factors, but not always—such as exposure to pesticides or industrial manganese output, to which women are more susceptible than men. Dopamine is the chemical neurotransmitter responsible for many functions: movement, balance, mood, digestion, dexterity, and in some people vocal projection, sense of smell, color perception, cognitive impairment, and more. It’s called a “boutique disease” since everyone has, in effect, her or his unique version of PD, and some clinicians now term it Parkinson’s diseases, since the symptoms and progress can vary so. There is as yet no cure or preventive measure for PD, but there are many—more every day—medications and treatment techniques that address the symptoms and slow the progression of the disease, which is a degenerative one. (I’m seriously un-fond of that adjective, which sounds suspiciously like degenerate, thus like a fundamentalist moralistic denunciation of my state.)
Now, back to the story.
The diagnosis wasn’t a shock; my mother had had PD, and for a year and a half, since noticing the first tiny tremor, I’d been pretty sure that this was Parkinson’s, not any of the other things I was tested for by a neurologist convinced I didn’t have PD. I now know that the average time of misdiagnosis for PD is 3 to 5 years, since the disease can camouflage itself as other maladies—so I was lucky to slog through a mere year and a half. You need a neurologist whose sub specialty is movement disorders, and there are only about 200 such specialists in the United States. I now have a superb one.
By the way, don’t you think it’s fitting that after life as an activist, I have a “movement disorder”? Isn’t the English language a delight?
It was actually a relief to know what I was dealing with. I should say “we” were dealing with. My friend and son, Blake Morgan, was with me when the diagnosis landed—and has been as vital and life-affirming a part of this process as the air I breathe and poems I write.
I took my time to digest the information, knowing it would seep like water through sand, slowly. I began to write about it—what I now call “The Grey Matter” poems, which will be in my next book of poetry—writing being my way of understanding what it is I’m living through. I broke into a positive mindset once I realized I needn’t relate to Parkinson’s the way my mother had—first with years of denial and refusal of medication, then decline and self pity. I have the benefit of support she’d never had—in terms of medical advances, my art and other meaningful work I love, and a sense of global political community. I haven’t lived my life the way she did, so I could have my PD my way. Which felt liberating.
The medication kicked in and the tremors stopped, balance went back to normal, and my bold handwriting returned from being a tiny scrawl. Most importantly, I had a four hour exam of my cognitive functioning—and I aced it. Game on.
For several months I kept my story to myself and Blake. In this culture, when you’ve been a public person your privacy is considered collective property—yes, even in the women’s movement. And though I knew I would eventually publish what I was writing on the subject, for the time being I wisely gave myself privacy. Then I began to tell a very few very close friends. I was worried they would henceforth see “sick person” when they looked at me and forget that I’m still just me. But they saw me. By now, three years in from the diagnosis, my friends and most of my acquaintances know—but this is my "coming out" to a broader audience. I’m glad I can do it from within the embrace of the WMC family, dedicated to telling the story of women’s realities not yet covered anywhere else. And there’s a helluva story here—nor do I mean just mine.
Think of my reaction on learning that the presence of women (and of men of color) in research tests and clinical trials in general had not greatly improved since the 1986 NIH policy that was supposed to correct all that. The subjects in virtually all research programs had previously been male, it being thought that women were basically small men, differentiated only by reproductive organs. The heart attack research was particularly scandalous, since based on all-male research subjects, the medical establishment assumed women rarely had heart disease. (For one thing, women having heart attacks present with different symptoms from men, yet men were considered the generic.) Because the women’s health movement protested long and loud, women were finally factored into the research—so today the Centers for Disease Control and Prevention (CDC) report that the No. 1 cause of death for U.S. women is heart disease. Check out The Foundation for Gender Specific Medicine and the Society for Women’s Health Research. (By the way, gender specific research and treatment is in men’s self interest, too.)
Well, there I was, facing yet another front that needed attention for gender and racial/ethnic inclusion—one our lives depended on.So I attended an extraordinary three-day intensive training by the Parkinson’s Disease Foundation.This was PAIR, the Parkinson's Advocates in Research, a signature program of PDF. Through in-person trainings and an online course, it provides people with Parkinson’s and their care partners with the knowledge and skills needed to pair up with researchers to bring about better treatments faster. It’s now a national network of 200 PDF research advocates from 42 states who work to change how research is done. You can learn more about it and get involved in Parkinson’s research at www.pdf.org. Research needs volunteers without PD, too, for control groups.
There are other fine organizations working on PD education, treatment, research. No one has done more for research than dear Michael J. Fox and his foundation. But despite its acronym sounding like an email attachment, PDF appealed to me. It was empowering the people involved—those with PD and their care partners. We were/are not passive recipients of advice or treatment, but active, curious, informed participants, with a sense of agency and a voice. For someone who’s spent decades working with women coming to voice, you see why I‘ve become a friend of PDF. My thanks go especially to Karlin Schroeder, Kelly Bresnahan, and Melissa Barry. Whenever people find each other through advocacy, it’s like the feminist click. That click is electric. It shimmers with energy; it vibrates with possibility.
A few more consciousness raising facts, and a personal update.
- One million Americans have PD—a figure expected to double by 2040 as population ages.
- The estimated economic burden is 14.4 billion dollars a year in the United States alone.
- Men are one and a half times more likely to have Parkinson's than women. (Except how do we know that for sure, given the skewed research subject population?)
- Women are 10 percent less likely to see a neurologist, which could improve their care.
- Occupational exposure to certain chemicals (PCBs) is associated with greater risk for Parkinson’s in women, but not in men.
- Women exhibit more dyskinesias (involuntary movement) in later stages of the disease than men.
- Women report more anxiety and depression, issues somewhat neglected in research until recently.
- There are very few trials that analyze data separately for men and women.
- To understand and treat Parkinson’s, research requires volunteers. Women are traditionally under-represented in these research studies.
- PDF Research Advocates address this under-representation of women, and inequalities in research and care. PDF offers a toll-free HelpLine, free educational materials at (800) 457-6676 or visit www.pdf.org.
As for me, this is actually a good time in my life.
I am NOT saying Disney stuff like “Oh, this disease is the best thing that’s ever happened to me.“ It is so not the best thing that’s ever happened to me. But hey, the Sombrero Galaxy is serenely undisturbed. Some of PD is actually funny. Here’s a new way to brush your teeth: if you skip your meds and hold your toothbrush up to your face, you don’t need an electric one. You can also scramble eggs just by holding the bowl. Though you do have to be careful not to stab yourself in the eye with a mascara wand—such an embarrassing way to go blind. And if you get overtired, but try to stride down the street as usual, you’re going to weave a bit, which means passersby will think you’re drunk—and you won’t even have had any fun earning their disapproval.
Seriously, I realize there’s some heavy going, ahead, but as Hamlet noted, “Readiness is all.” And I feel ready for whatever comes. Besides, PD brought me the gift of urgency, a concrete reminder of our shared inevitable mortality. And I, being as much a lazy procrastinator as anybody, appreciate a deadline.
Meanwhile, I’m exercising like crazy—shown to be vital in slowing the disease’s progress. And the disease is moving slowly. The meds are so far working well, and I feel generally good. And busy!
Since the diagnosis, I’ve finished a new novel—and am working on my new book of poems. I’ve written quite a few essays/articles/blogs, some of which went flatteringly viral. I’ve worked with the Women’s Media Center as a board member, and embarked on a new career (or rather, returned to one I had at age 4) with our radio show, WMC Live with Robin Morgan. I’ve been delighted to be part of MAKERS—the Women who Make America—the documentary and the website. I’m still global editor for Ms. magazine, and I serve on the steering committee of the important new NGO, Donor Direct Action.
I’ve gardened—you should see my old English roses!—until my back is in spasm but my soul in bliss. I’ve cooked some great dinners for dear friends, and we’ve sat in the garden drinking wine and talking and laughing while fireflies darted through the splashes of my home-built waterfall.
I cherish the women friends I’ve had for decades, as they do me. I’ve made new ones, younger ones, too. I’ve grown even closer to and (slightly) more reliant on Blake, while celebrating his entering the fullness of a different manhood than this culture plans for males, and while getting to watch his talent mature and hear his art, his music, flourish.
So life is good. I’ll keep you posted. And—let’s do something about the under-represented majority in medical research??? And what about those PCBs???
Damn! Women’s work really IS never done!
April is Parkinson's Disease Awareness Month. Visit the PDF Website for information (in Spanish as well as English) on how to make a difference. To listen to the complete radio broadcast in which this commentary was aired, click on WMC Live with Robin Morgan, April 6, 2013.
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