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.
After our fun weekend together in Portland at the Brian Grant Foundation gala, Hadley and I texted nearly every week throughout the fall of 2011. At times, when she talked about her painting commissions and plans for her nonprofit, Summit for Parkinson’s, her high energy and spirits seemed almost like euphoria, raising a small red flag inside me.
Then, in December she called and said soberly, “I met this pharmacologist at a Christmas party and he said to me, ‘You don’t have Parkinson’s.’”
I contemplated what this meant, if anything.
“Can you believe he said that?” she pressed.
I was struck by her agitation; for the first time, her extraordinary equanimity in the face of our disease seemed to falter. But why? I wondered. She’d been diagnosed by a Parkinson’s specialist. Why should she concern herself with the unsolicited opinion of some know-it-all who’d only just met her?
The longer we lingered on this interaction she’d had, the more the little red flag waved.
Diagnosing PD can be tricky, especially in the absence of a tremor or in the early stage of the disease, when other hallmark symptoms, like my asymmetrical gait, are not obvious. A hundred years ago, the only way to make a positive diagnosis was with a post-mortem autopsy, and there’s still no blood or imaging test to confirm its presence. While there are exciting new diagnostic tools on the not-too-distant horizon, for now, the diagnosis of Parkinson’s relies on a clinician’s keen eye, considerable experience and careful listening. As I discovered, there are psychosocial hurdles to clear in the diagnostic process, including bias or dismissiveness on the part of a doctor, or denial and inadequate communication on the part of a patient.
Parkinson’s is an incurable, degenerative disease of the nervous system that mainly causes symptoms of reduced motor function such as slow and imprecise movement, muscular rigidity, stiffness and tremor. The disease is caused by the death of brain cells that produce dopamine, a chemical neurotransmitter responsible for sending messages to the substantia nigra, an area of the brain that controls movement and coordination. To a lesser extent, other regions of the brain, like the olfactory bulb and brain stem, can also experience a loss of dopamine-producing neurons, affecting non-motor functions such as sleep, vision and sense of smell. As PD progresses, the amount of dopamine available to the brain continues to decrease, making ordinary actions like walking, combing hair, buttoning a shirt and even speaking more and more difficult. Scientists believe Parkinson’s develops over many years; however, symptoms don’t appear until a patient has lost about 80% of her dopamine-producing neurons.
An estimated seven million people worldwide have Parkinson’s disease, more than a million of them in the U.S. Everyone’s Parkinson’s is different. Some will experience only motor disturbances, while others will have every possible symptom. Tremor is the symptom most associated with PD, but a quarter of people with the disease don’t have one. Most people will at some time experience bradykinesia (slowness of movement), balance problems, muscular rigidity, and facial “masking” that makes us appear less animated. In addition, about 75% of Parkinson’s patients will deal with some dysfunction of the autonomic nervous system that controls “automatic” body processes such as heart rate, blood pressure, salivation, swallowing, digestion and sexual arousal. Visual disturbances are common, as is mild cognitive impairment, and 50%-80% of patients will eventually develop dementia.
Medications and interventions can treat symptoms but there is no known therapy that can stop disease progression, the rate of which varies from person to person. PD can make life extremely challenging. But it isn’t considered a fatal illness unless it creates other complications; people with Parkinson’s typically have the same average life expectancy as people without the disease. In this way, the general neurologist who first suspected I might have PD was right: it’s certainly not the worst thing.
As Hadley and I became closer, I learned that getting her diagnosis had been even more of a trial than it had been for me. She seemed to somehow share the blame for this, referring to herself as a “complicated case.” Curiosity piqued, I wanted to know more about her past. She began sharing pieces of her history and I was drawn in by its richness and complexity. Later, when I decided to write this story, I asked her to put hers down on paper.
How do we choose to tell the story of our life? I chose to tell a version of mine in a novel, a fictionalized account that allowed me to pick and choose which truths to reveal. The story Hadley wrote down first — the one that slid easily off her fingertips — was the one that tracked her movements on the planet, her accomplishments, the things that caught her eye and imagination during the years until she gave birth to her daughter, Sarah.
Hadley was born in Missoula, Montana in 1976. Her mother, Jana, taught seventh and eighth grade English; her father, Fred, was a professor at the University of Montana. Hadley was born with pulmonary stenosis, an obstruction to the flow of blood from the right ventricle of the heart to the pulmonary artery. Congenital cardiac abnormalities are not rare, and Jana and Fred were told that eventually, Hadley’s defect would require surgical intervention. By the time she was four, Hadley’s color was often bluish and Jana began driving her to a cardiologist in Salt Lake City. At one appointment, Hadley’s resting heart rate measured 200 beats per minute — the highest number on the monitor — and the cardiologist recommended immediate surgery.
On May 18, 1980, the day Hadley’s family left Missoula to drive to Salt Lake City for her open heart surgery, Mount St. Helens erupted, the deadliest and most destructive volcanic event in the history of the U.S.. Because the air was filled with ash, Hadley had to wear a mask all the way to Utah. Her heart surgery was a success, and she recovered well. When she could be active again, Jana and Fred took her on a yearlong adventure to live in Bratislava, Slovakia. Hadley remembers walking along the Danube River to a preschool where no one spoke English, having pneumonia a few months later and “suddenly” becoming fluent in Slovak.
Hadley’s parents’ marriage was faltering during the year in Bratislava. In retrospect, she’s sure she sensed their struggle and developed a way to act out her distress: stealing. She began squirreling away her schoolmates’ belongings in her backpack. At the end of a year, when her family moved back to their house in Missoula, she continued this habit, telling her parents that she’d found whatever it was — a gold locket, a pair of mittens — in the street on the way home. She also developed a talent for fibbing whenever she found herself in situations she didn’t want her parents to know about. She was always confident that she could come up with a creative story to escape punishment.
When Hadley was nine, Jana announced that she and Hadley would be moving to New York City, where Jana would finish her master’s degree in English as a second language. Hadley’s father would stay behind in Missoula. For the first several months in New York, Hadley was miserable; she often felt like an outsider since many of her schoolmates hadn’t even heard of Montana. To soothe her loneliness, she focused on the opportunities she had in New York that she hadn’t had in Missoula. She and Jana frequently visited the city’s museums, sparking Hadley’s love of the visual arts. She took her time in front of paintings, studying light and shadow, marveling at how brushstrokes and color could make elements like buttons and cloth folds appear fully three-dimensional.
At Christmastime when Hadley’s father came to New York, it was clear to Hadley that things weren’t right between her parents. A few months later, Jana confirmed that she and Fred were splitting up. Hadley was upset, but by the next morning, she’d resolved that all three of them would be happier if her parents weren’t together. She continued to thrive in New York. Her world expanded with the exposure to art and music; she felt she grew and matured more than any other year of her childhood. When she and her mother returned to Missoula, lying and taking things from her friends became a thing of the past.
The summer Hadley turned thirteen, Jana accepted a two-year teaching position at Kumamoto University in Japan. Hadley was nervous about leaving Missoula again but gave herself a pep talk: “Hadley, you need to go into this as a blank slate. You need to be flexible and do whatever you can to learn about this new culture and blend in.”
In a matter of days after arriving in Japan, Hadley was attending a public school where she was the only American student. She didn’t speak a word of Japanese and to make matters worse, halfway through her first day, she realized she was wearing her uniform’s skirt backwards — mortifying for a thirteen-year-old. Her first few months in Japan were much like other times she’d had to adjust to a foreign place, but now that she was a teenager, the separation from her Missoula friends felt unbearable.
By her second year in Japan, Hadley had become fluent in Japanese and had picked up all the mannerisms of a Japanese girl. She played the flute in the Kumamoto Youth symphony and studied piano. Though she was occasionally homesick, for the most part, she was happy and savored her independence. Meanwhile, Jana fell in love with Charlie, a fellow Missoulan who was doing an exchange professorship in Japan, and they were married in a garden later that year.
At the end of two years when Hadley, Jana and Charlie moved back to Missoula, Hadley found she had to adjust to yet another culture, this time her own. She was a shy ninth grader who’d learned at her Japanese school that submissiveness was respectful. Gradually, though, as she moved through high school, she became more confident and social. She poured herself into music, joining the school band and orchestra. Her senior year she decided to trade some of her musical activities for art classes, which she loved.
When it came time to apply to college, there was no question in Hadley’s mind that after all the moving around she’d done, she would attend the University of Montana in Missoula. There, she shed all remains of her shy self and took full advantage of all college had to offer. An accomplished pianist, she had always believed she would become a musician, but her burgeoning interest in visual art compelled her to switch her major from music to fine arts.
As she worked through her art degree, Hadley found she struggled with how to use color and did everything she could to avoid painting, settling on a concentration in sculpture. The summer after her freshman year, she traveled to visit Charlie, who was spending time in Japan. The trip inspired her to live there again. She was especially excited about the possibility of continuing her art studies in Japan, where she knew she would receive excellent instruction in technique and form. The next year, the University of Montana awarded her a scholarship to study sculpture at Kumamoto University for her junior year.
At the University, Hadley sculpted clay figures and busts that she cast in plaster. The plaster forms would then be cast in epoxy resin, a material that could be painted to look like any material — wood, marble or bronze. Looking back, Hadley shakes her head at the hours she spent working without a mask, breathing the resin’s toxic fumes. It’s hard for her not to wonder whether this known toxin is at the root of her neurological disease.
Hadley spent much of the year she was in Japan traveling, revisiting Nagasaki and Hiroshima, which had haunted her since being there with classmates as a teen. Jana and Charlie were spending the year in the Czech Republic and Hadley visited them, traveling to Plezn and Prague as well as to Terezin, where she was moved by an exhibit of drawings and poems created by children in the concentration camps during the war. She resolved that her senior art thesis project for the University of Montana would be about honoring the children around the world who unjustly and tragically had become victims of war and other violent conflict. When Hadley talks about her Children’s Peace Crane Project she glows with excitement and pride.
The summer before she left for Japan, Hadley met John Ferguson, a law student at the University of Montana. They stayed in touch, he visited her in Japan, and they fell in love. John finished law school and spent another year at the University to complete a master’s degree in environmental studies while Hadley finished her senior year there. In 1999, after graduation, they moved to Portland, Oregon, John’s hometown.
In Portland, Hadley applied for a job at McMenamin’s, a company that owns hotels, breweries, pubs and theaters in Oregon. The company employed a team of artists who were painting its buildings with scenes depicting the histories of the areas where they were located. Hadley, who considered herself a sculptor, not a painter, was delighted when she was hired. At McMenamin’s she learned how to paint and discovered she was very good at it.
In 2001, a little over a year after Hadley had started working for McMenamin’s, she and John moved back to Missoula, where they were married. Hadley built her business as a freelance artist and in 2005, received a commission to paint seven murals illustrating the history of Missoula on the exterior wall of a prominent downtown building. She was thrilled with the opportunity to create a work of significance for the city she grew up in. After that project, her commissions increased and she enjoyed a consistent flow of work and income.
In 2006, Hadley and John’s daughter, Sarah, was born, marking a turning point in Hadley’s life. She wrote:
Having Sarah brought perspective. My focus was no longer on John and my needs, dreams and plans. She meant more than all the other things in our life and I would do anything make sure she had all the love and support we could give her. In the past, I might have been able to smile or ignore things that made me upset or uncomfortable, but once I had Sarah, I was no longer passive. She needed me to be strong. She made me a better person.
Hadley’s change in perspective that came with Sarah’s birth resonated with my own experience. For those who faced circumstances that made us guarded and hypervigilant as children, becoming a parent offers a chance to love fearlessly, with an open heart. In her last sentences, Hadley also revealed that she welcomed a new imperative to be strong, to stand up for herself in ways she hadn’t in the past. I was struck by the potency of this sentiment, since it seemed to me she’d been remarkably resilient and independent as a young girl. I wondered: were there other forces in her life that had contributed to her feeling weak, passive and like “a complicated case”?
It turned out Hadley had another, more difficult, story to recount — one lying between the lines of the one she’d written down.