An Alert, Well-Hydrated Artist in No Acute Distress
The story of two artists with incurable neurological disease sharing fear, frustration and friendship as they push to complete the most rewarding work of their careers.
A few days after my Parkinson’s diagnosis in 2009, I scanned my shelves for a book to take on a family road trip to Los Angeles and randomly plucked one a friend had passed on to me a several years earlier. By eerie coincidence, I chose Sue Miller’s novel, The Distinguished Guest, about a writer, Lily Maynard, who has written a best-selling memoir in her 70s. Halfway to LA, I learned Lily had Parkinson’s disease. In the book, a journalist who’s interviewing the late-blooming writer for a magazine piece, is struggling with how to frame her story:
What happens to the writer when the writer is done?…those who have taken heart by her appearance on the literary scene at age seventy-two, from the fine work she’s done in her memoir and her fiction since then may also take a kind of courage from her example at this juncture in her career, when that chapter seems to be closing. Lily Maynard has Parkinson’s disease, and its slow progress seems finally to have brought an end to her life as a writer. But not an end to her life. Because Lily Maynard’s story is nothing if not the account of a woman triumphing repeatedly over defeat, and it’s with that same indomitable force and energy she has confronted this painful fact.
Indomitable: A word that appears often in narratives about people working hard to rise above adversity. When I read this passage in Miller’s novel that day in 2009, I felt a resonant pulse of courage. But then I braced myself. As a writer, Miller is a masterful manufacturer of psychological complexity and I suspected that “indomitable” and “triumphing” would be demonstrated by her heroine, Lily, but not in the expected ways.
Wherever there’s illness, there’s talk about optimism, keeping a positive attitude and my personal favorite: “Your illness is a gift.” The first time I heard this line, I recoiled. It sounded a lot like a religion being thrust on sick people. A gift, I thought, is either something you’re born with — like an ear for music or an eye for artistic composition — or something someone gives you, usually tied up with a ribbon. Illness is not a talent, so if it’s the other kind of gift, there must be a giver, right? But who would give someone the gift of illness and why?
I’m being annoyingly literal to make the point that this particular pronouncement, often trotted out as enlightenment, is for many people irrelevant and not always benign. It’s true that illness, like accidents and other traumatic experiences, can sometimes jolt us awake from a slumber of denial, improve our perspective, clarify priorities and open us up to others. Even losing everything in a fire or financial crisis can stimulate healthy renewal. But here’s the thing: a calamity is only beneficial if you can recover enough to live without enormous burdens. Illness can teach us valuable lessons and redirect us in good ways if we have the physical wherewithal and resources to make lemonade from the lemon. But many, if not most, sick people don’t have the strength or tools they need even to squeeze the lemon. For those who are housebound, poor or alone, illness is a curse and for the rest of us to talk about disease as a gift can be insensitive to their suffering. Despite all the good people and meaningful activity Parkinson’s has put me in touch with, I can’t imagine telling my husband and kids it’s a gift. To do so would dismiss the pain and worry my condition will increasingly cause them.
What people must mean when they say their illness is a gift is that it has in some way changed them or their lives for the better. Perhaps before their illness they worked too hard at a job they didn’t like and came home every day cranky and self-absorbed; when ill health made them quit, they discovered a new appreciation for their partner and children, or a new avocation. Maybe they were always in a hurry and now, in their slower, less capable bodies, they’ve become more attuned to the beauty in the world and are smelling those roses, literally and figuratively. Some, through their suffering, might have gained access to a more compassionate part of themselves that makes them more giving.
Because Parkinson’s can progress slowly and people often live with it for decades, it has given many in our Facebook group the opportunity to adopt new, compelling missions: fundraising for research, creating resources for patients, becoming PD advocates. They are determined and dedicated and have remarkable role models, among them Michael J. Fox. In his book, Always Looking Up, Fox writes, “For everything (Parkinson’s) has taken, something with greater value has been given — sometimes just a marker that points me in a new direction that I might not otherwise have traveled.” Because Fox is delightful, articulate and hard-working, and still going strong more than twenty years into his diagnosis, his optimism provides us with life-affirming sustenance. “What will we do if Michael loses hope?” I’ve asked my friends with PD. In his case, his Parkinson’s is a gift — to all of us with the disease. In his enormously generous outreach to the PD community, unmatched support of research, and ability to motivate others, he is a superhero.
Fox is also merely human, a man whose life and body have been radically altered by a disease. We, his fans and flock of Parkies, may never witness him in his private moments of discouragement and defeat. Our feel-good culture has an unspoken rule: a revered public figure must put his best face forward and consistently offer hope and optimism.
Americans especially have viewed positive thinking and optimism as tools to attract everything from good health, love and happiness, to fortune. In 2002, psychologist Martin Seligman spawned the “positive psychology” movement with his book, and Authentic Happiness: Using the New Positive Psychology to realize Your Potential for Lasting Fulfillment, which followed on the heels of Learned Optimism: How to Change Your Mind and Your Life. The hyperbolic titles themselves, while empowering for some, are enough to make others wilt with anxiety that their happiness is not authentic enough and that they have only their wrong-headed thinking to blame for it.
For decades, we read in the news that a positive attitude might ensure better health and if we were sick, a better outcome. Cancer patients were especially inundated by advice to think positively. The theory was that since stress is known to tax the immune system, shifting from a mode of worrying or feeling hopeless about one’s illness to accepting it would, along with healthful changes to diet and other habits, help the body’s immune system fight the cancer. Seems like sound science — a patient who’s positive enough to be proactive about taking good care of himself could have a better outcome. But here’s where the proposal is less reasonable: cancer patients were often coached that a positive attitude might shrink their tumors. So, gravely ill patients, already concerned about the impact of their illness on family and friends, were made to feel that if they let their fear, grief or anger surfaceeven in the privacy of thier own minds—they could hasten their own demise. (Barbara Erenreich has written a thoughtful book on this subject.) Moreover, if they did adhere diligently to their positive meditations and their tumors grew instead of shrinking, they felt they’d failed in some way.
When positive thinking is imposed on someone who’s struggling, it can isolate that person, leaving him alone with his deepest fears and pain. Sometimes we so badly want a good outcome for someone that we carelessly put a positive spin on his or her situation. At the supermarket, an acquaintance and I discussed someone we knew who for three years had been sick with metastatic cancer. The cancer, which would kill her eight months later, had moved from her breasts to her hip to her leg, to her spine. It was devastating to think about, especially because she had two children still at home. I expressed my sadness. “But she looks fantastic!” this woman responded brightly. I was shocked by her attempt to brush aside the gravity of the situation. Unable to let it go I said, “But she’s going to die.” I remember feeling as if I’d uttered something horribly improper — obscene, even — and I don’t recall where the conversation went after that. I’m pretty sure I killed it with my “negative thinking.”
Why do optimism and hoping for something that might be unrealistic comfort some people and make others feel more vulnerable? Is acknowledging vulnerability “negative thinking”? It turns out our brains are hardwired to focus on our vulnerability and bad experiences. Negative experiences seize our attention more quickly and stick with us much longer, an adaptation that helped to ensure early man’s survival. When our safety is threatened, the primal machinery of our brain is activated, stimulating the production of chemicals that help us to react. Because these adverse events were often a matter of life and death for our earliest ancestors, it was imperative that they remember them so they wouldn’t happen again. So, negative experiences were and still are quickly filed in the brain’s deep storage.
Curiously, there is no equivalent transfer of positive experiences into the brain’s deep storage, so we remember them less readily. Mindfulness practitioners have tackled the question of how to make our positive experiences more dominant and enduring, suggesting that we first deliberately create positive experiences or take in the good around us, enrich those experiences through duration or intensity, and then focus on absorbing them into the body. In other words, we need to “marinate” ourselves in the positive. Not a turning away from our grief and fear, then, but a focused effort to balance them with feelings of comfort, safety, and happiness.
When we can achieve such balance, positive thinking allows room for what is hard and true and makes it possible for us to cope with diffculties and work toward solutions. Optimism, on the other hand, can cause us to hang our hopes on the idea that things will always turn out okay. At its most extreme, this can invlove potentially harmful denial. While Hadley and I were trying to get a diagnosis, our doctors’ optimism cost us years of anxiety, time and money. They simply couldn’t, or wouldn’t believe that two seemingly vibrant people could be harboring a devastating disease. They explicitly made us feel we were preoccupied with negative thoughts and, in Hadley’s case, possibly making herself sick. As another example, years ago, a perennially sunny and vigorous childhood friend told me she felt certain she would never get cancer because “I’m such an optimist.” Fortunately, she was not so optimistic that she skipped her annual mammograms; twice in the next six years, she had not just one type of cancer, but two, which she ably survived. But she felt blind-sided by her diagnoses because as an optimist, she hadn’t prepared herself for the possibility that she would ever have cancer. For her, discovering that terrible diseases don’t prey only on worrywarts and the weak was a life-changing revelation.
The Parkinson’s community wrestles with the potential pitfalls of optimistic forecasting. Patients and researchers alike have been talking about “the cure” for a very long time although it still is not within reach. For me, keeping my hopes up for a cure would feel like trying to hold a heavy object in the air for a long time: Would I be strong enough to remain hopeful when advances were not made quickly enough to benefit me, and if not, would the object come crashing down on me before a cure is not found? I’m optimistic enough about future breakthroughs to be micro-monitoring Parkinson’s research and donating my body and money to the PD cause. But I’m more comfortable rejoicing in the encouraging gains being made in understanding the etiology of PD and in developing better treatments than hoping for a cure. What seems even most important though, is not to passively wait for the next big thing but to invest in learning all I can about how to optimally manage my disease and to remain focused on what I’m still able to enjoy and accomplish each day. This is realistic, productive, positive thinking.
For all of us with illness, the ability to think positively is as variable as the weather. I’ve heard that some support groups make members feel uncomfortable posting messages that express dark feelings about their disease or their medical care. I think often of the clueless crowing of the movement disorders specialist who diagnosed me: “We have no self-pitiers in the Parkinson’s Princesses!” I think our Parkinson’s Facebook group would agree that a positive attitude includes being honest about how we’re feeling without catastrophizing about our disease in a way that will make us and the people in our lives over-anxious. Sometimes a member will end their post with “Sorry to complain.” Usually, someone will quickly respond, “Complain away — we all need to sometimes!” In our group, we know that along with our high-pitched announcements about running marathons or climbing mountains, lower notes will be played, will be heard, and will bring out the best of what our PD community can offer: information, advice or comfort with an open mind and heart. And, there are the messages intended simply to raise our spirits. Our member Maria posts photographs she takes of the sun coming up over the lake where she lives. The images don’t vary much visually, but therein lies their power: they wordlessly remind me of my gratitude for the reliability of sunrises and the chance to live another day on our magnificent planet.
In The Distinguished Guest, when Lily Maynard realizes that she’s too diminished by Parkinson’s to want to carry on, she secretly schemes to die peacefully, and not in a nursing home, as others have planned for her. I carried the weight of her story around Los Angeles for several days as I strolled with my family through museums and along the beach in Santa Monica. I didn’t tell them what the book was about and how it had affected me because I knew they’d press me: “Why didn’t you stop reading the book when you realized she had Parkinson’s?” The answer would have been that I wasn’t afraid to confront my sadness about having PD. But I was afraid of my fear, and Lily’s story allowed me to live inside her for a week, to face that fear. She became a kind of secret mentor. In a season when all of us try especially hard to put our personal pain aside and raise toasts to all that is merry and bright, Lily helped me not only to imagine being a late-blooming author, but also to privately mourn the healthy old age I won’t have.
Lily was indomitable, but not in the way the journalist interviewing her had imagined. She triumphed because she was her own captain to the end. She knew when to pull out of a battle that had finally stolen from her even the joy of a sunrise; she knew when to choose peace. At the time, so recently diagnosed, I was unsettled by her meticulously planned, nonviolent suicide. But now, seven years later, her story — neither pessimistic nor optimistic but real and irrefutably positive — echoes in my mind, a gentle and compassionate whisper when the voices of “indomitable” become too shrill and demanding.