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.
Hadley takes off her glasses and sets them on the varnished burl table. Her brown eyes are huge and searching, brimming with tears. For the first time it hits me that at thirty-seven, she’s only eleven years older than my daughter and I flood with a maternal urge to reach for her hand and tell her everything’s going to be okay. But this is probably a lie and the truth is the reason she’s here.
Rochester, Minnesota, four o’clock, late November 2012. It’s eighteen degrees outside and already dark; we’re in a pub full of people who haven’t warmed up enough to shed their down jackets. Hadley’s drinking her favorite, a mojito, and I am too, in a gesture of solidarity. The mojitos are midwestern-generous and lack fresh mint but taste of someplace warm and vacation-like, not here. We’re determined to make this night as fun as possible — after drinks, we’ll see a movie and then have dinner — since Hadley has just finished her sixth grueling day at the Mayo Clinic. Before Hadley asked me her question, I was wondering whether, after the super-sized mojito, I’d be able to find the Galaxy 14 Theater in my rental car. But now, all my attention is on how to answer her.
“No,” I say, feeling my way. It has never occurred to me that the myriad symptoms Hadley was experiencing, many of which I shared, could be anything but a serious neurological disease. “I don’t think it’s all in your head. But if it were, I’d be relieved, because it would mean that you have something treatable, that you’re not going to die.”
This observation sounds leaden with hopefulness even to me, and seems to sink Hadley into a slump behind the table. She’s pale, her long, auburn hair limp and without the shine I remember. But I know she’s not one to give up or give in. She pulls a Kleenex from her cloth purse, blows her nose, puts her glasses on and peers at me. “So you do think there’s some possibility that all this could be psychological?”
“No, no,” I say, doing a quick mental review of some of her symptoms, like orthostatic hypotension — abnormally fluctuating blood pressure — and urinary difficulties that a mind couldn’t possibly cook up. At least I didn’t think it could. “Your physical illness is real; the question is just what’s causing it. I mean…this is the Mayo Clinic and they can’t leave any stone unturned. Right?” I ask, hoping I’m not saying anything she hasn’t thought of herself.
When Hadley tilts her face down and sips from her tall mojito, I know I’ve said exactly the wrong thing. I’ve flown across the cold continent to be helpful and I’ve managed to mess up in the first twenty-four hours.
Hadley wants the truth about her medical condition, yes. But even more than this she wants people to believe her illness is real.
In 2010, two years before spending time with Hadley at the Mayo Clinic, my neurologist Dr. Bright, a movement disorders specialist (MDS), connected me with a Facebook group established for people with Young Onset Parkinson’s Disease. Diagnosed with Parkinson’s (PD) in 2009 at fifty-four, I believed YOPD described me, since I’d never known of anyone with PD who was as young as I was. Soon, I would learn that about one percent of people over sixty are affected by Parkinson’s and the 4% of people with Parkinson’s who are diagnosed before the age of fifty are designated as having YOPD. I guess Dr. Bright thought I was close enough, and thankfully, no one in the group has ever challenged me on this point.
When I joined the YOPD Facebook group, there were seventeen members and I was the oldest. I was dismayed to discover there were others as young as twenty-six as well as those who were in their forties who’d had PD since their twenties. My heart ached, reading their posts about jobs, raising children and taking care of aging parents, or facing their disease alone. I couldn’t imagine dealing with a shaky body or a stumbling walk — or worse — while shuttling between the office and kids’ sports practices and music lessons. Not only is it physically strenuous to meet these demands, but also, “putting on a good face” for your kids and work colleagues is an enormous challenge when you’re sick. Many in the group have realistic concerns about frightening their children who are too young to understand the nature of their disease, or being fired from their jobs. Imagining all they had to deal with, I suddenly felt very lucky to have made it to my mid-fifties before being diagnosed, lucky that my youngest child had just left for college, my parents had died without knowing I was sick, and that I had the luxury of working at home.
In five years, our YOPD Facebook group has grown to 370 members. The community is a tremendous resource for information and support and provides a place where my physical and experiential anomalies are considered “normal.” Since Parkinson’s patients daily experience a cornucopia of symptoms that continue to change, but only meet with our PD neurologists two or three times a year, having a support group to spontaneously consult about symptoms and medications is a lifeline. No question large or small is dismissed by the group: “Who can tell me about applying for disability?” “Does anyone else feel like they’re more uncomfortable than they used to be in hot weather?” We discuss and debate the latest research as well as helpful therapies, all in impressive, sometimes gory detail. We complain, get outraged, share our joys, and cheerlead. In the middle of the night when one of us loses our courage, someone is always online to commiserate and help.
Hadley was a member of the YOPD group when I joined. She was thirty-three, a painter, married with a three-year-old and living in Montana. As an artist-turned-architect-turned-writer, I was immediately drawn in by a photograph she’d posted of herself, sitting atop a high scaffold in front of huge, complicated mural she was painting inside a school, just one of a few large mural commissions she’d been given. The photo told the story of a talented artist with a remarkably big life who so far wasn’t letting a serious diagnosis get in her way. But I also saw in that image a young woman dwarfed by the immensity of her work and of the struggle she had ahead of her, reconciling her ambition and motherhood with her Parkinson’s.
At the time, Hadley’s Facebook posts conveyed a surplus of optimism and enthusiasm, punctuated with smiling emoticons and exclamation points. When someone in the group shared good news, she was one of the first to exclaim, “So exciting!” She was sympathetic and compassionate, regularly posting encouraging words. Months after I joined the YOPD group, another member would tell me, “The first time I met Hadley in person, she was like, ‘Hi! I’m Hadley and I have Parkinson’s!’ She was so cheerful I thought she was nuts!” By this time, I knew Hadley was anything but, because soon after meeting on Facebook, she’d called me, launching our phone relationship. We broke the ice by comparing notes on the YOPD membership: who was funny, who was scaring us with their reports of bad falls, hallucinations, or medication side effects; who seemed nice, naughty or narcissistic. We discovered we were both recreational analyzers, fascinated by human behavior. Hadley’s insightfulness made it hard for me to believe she was only thirty-three; for the fist time, I understood what the term “old soul” means. (Later, I would learn about her past and understand more about why she seemed wise beyond her years). I admired her authenticity and positive but realistic outlook, and quickly recognized that in her career as an artist, business owner and organizer, she was unusually capable — one of those whose left and right brains both operate at full throttle.
We had inspired chats about Hadley’s painting and my writing; I remember one especially fun conversation about a painting in which she was incorporating her deceased relative’s ashes — at their request — into the pigment. At the time I was driving and became so distracted by the notion of painting with someone’s cremains I nearly missed a turn. “I imagine my aunt in the painting on the wall, looking out at my life, watching,” Hadley mused, sparking a conversation in which we plotted her imagining into what could be a fantastic short story.
And, of course, Hadley and I compared notes on our experiences with Parkinson’s. Still early into our diagnoses, we were annoyed, but not yet impaired by our symptoms. When we talked to each other, the fear of what loomed ahead with our illness lightened — as if together, we became two pillars that could more easily hold the future aloft. We laughed a lot. An outsider listening to our calls might have been mystified by our jauntiness that became outright silly at times, but it could be explained by something important that we shared: before our diagnoses, both of us had been searching for years for what was ailing us, and having read up on all the more deadly diseases that could have been causing our symptoms, we were both giddy with relief when told we had Parkinson’s.
Parkinson’s: an incurable, progressive, neurological disease, but a disease that one lives with for many years. It’s a testament to the human spirit how quickly we can sometimes adjust our outlook by regarding our particular struggle in relative terms.
In July 2011, six months after meeting Hadley online, she and I had a chance to meet in person. She and her husband John were traveling to Portland, Oregon to a fundraising event organized by the Brian Grant Foundation and I decided to go with my husband, Lewis. Hadley travels to Portland often, as John’s family is there as well as a gallery that represents her work. Within weeks of her diagnosis, she had befriended Brian Grant, a retired NBA basketball star who also has YOPD, so that she could contribute to the work of his foundation.
Brian’s gala was the first Parkinson’s event I’d attended and I was excited and nervous to meet several other women from our YOPD Facebook group. Though we are as different as any four random women can be, I felt an instant connection with them as I stole curious glances at how their bodies moved. Alyssa, I noticed, had a gait disturbance that looked like my own but unlike me, she was very stiff. Soania, who was forty at the time and has had PD since she was 26, held her tremoring hand with the other and rocked gently in her high heels. The swaying — not itself a symptom of PD, but rather, a side effect of PD medication — was integrated with her disarming, willowy beauty and mellifluous voice, giving her the appearance of a graceful dancer. Hadley’s Parkinson’s was invisible, especially since like me, she has no tremor.
Our first night at the elegant Nines Hotel, where it seemed everyone was either a basketball player, an ex-basketball player, or someone with Parkinson’s, we four “Parkies” stood in the crowded elevator like shrubs in a redwood grove and rode to the top of building to spend a delightfully warm evening in the rooftop bar. At the table, we were a squirmy bunch, legs shifting, hands trembling. I felt an affection for these women that I knew was tied to the enormous relief of being with vibrant, high-functioning people who shared my…weird…disease. I might have expected the occasion to be sobering, but instead it felt celebratory and on the verge of recklessness; I found myself wanting us to get drunk and go dancing somewhere. Alas, none of us drank too much, a good thing. In any case, we looked drunk enough when the check came and we dove into our wallets, fumbling as we plucked out cards and bills — a task that is particularly difficult for people with PD. We laughed because although we were all carefully groomed, our wallets were, uniformly, a mess.
Throughout the weekend, Hadley’s energy astonished me. Radiant and svelte in her floor-length black dress, she worked the Brian Grant Foundation gala crowd like a pro. I could see that her genuine and gentle, down-to-earth manner made her an especially magnetic networker for the cause of PD. She stayed at the party long after Lewis and I returned to the hotel. In the morning, she left early for the golf course with her easel and paints; as part of Brian’s fundraiser, she’d committed to making a painting of the golf tournament, which would be auctioned off that evening.
Meeting Hadley and many others with Parkinson’s in person at the Brian Grant Foundation’s gala was both exhilarating and confusing. I’ve never belonged to a community, other than the schools I attended; I don’t go to church, and have never been a member of a club. I most enjoy seeing my friends one-on-one, rather than in groups. But being with the women from the YOPD group in Portland gave me a heady sense of “belonging.” At a time when I’d assumed my life had grown nearly as big as it would, something powerful had suddenly been made available to me because of my Parkinson’s. I felt a new part of myself open, like a second pair of arms that could embrace more of the world: new friends with whom I shared something vital and intimate, a new personal challenge and a new interest to focus on — neuroscience — fascinating, and especially so when you have a neurological disease.
And, there was the cause. This for me was the confusing part of the Portland weekend. Hadley, Soania and Alyssa, women with a lot on their plates, were putting an enormous amount of time and energy into the PD cause, sitting on advisory committees, running marathons to raise funds, serving as spokespeople. When Hadley returned to Missoula from the gala event, she hit the ground running, throwing herself into the nonprofit she’d founded almost immediately after her diagnosis, Summit for Parkinson’s. Realizing there were few, if any resources in Montana for people with Parkinson’s, she’d started Summit to offer programs for Parkinson’s patients, their caregivers, friends and family that will provide tools and resources to help them live their lives to the fullest. Despite her many commitments as a mother, wife and artist, Hadley skillfully and enthusiastically piloted this new and important venture. She joined the many other activists in our YOPD group who regularly host fundraising events or become PD community organizers. They deeply inspired me to join in the activism. Yet, because I had only recently arrived at a quieter phase of life in which my empty nest afforded time to focus on my creative work, I felt fiercely protective of my hours of introversion, aka, my writing.
There was this novel, Dream House. The novel I’d been rewriting for too many years to admit seemed on the cusp of being published, would be published after one last push on the manuscript. After all, I had just landed a top literary agent.
Well, sort of…