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.
Journalist and documentary filmmaker Dave Iverson, who has Parkinson’s, has described Parkinson’s Disease as a disease of subtraction. It takes things away from you one by one — your arm swing, your walk, your balance, your smile, your voice. Because of this unstoppable subtraction, he’s said, you need to keep adding things into your life.
By the time the effusive literary agent reached me on the phone that Mother’s Day, I knew very well what I needed to add into my life: the publication of Dream House. I would never have said this out loud before publication began to seem possible; the stakes were too high.
Now, as she waited for me to respond to her offer of representation, I drew a deep but silent breath. “Yes, okay.” I told her.
“Terrific! I can already picture the cover for it! What do you think — one of those quintessential New England porches? Could you get some headshots taken? And we’ll need a synopsis of the novel. Lila will contact you to work on manuscript revisions. My business manager will send you a contract. Please get that signed as soon as possible. I’ll be in touch in about two weeks, when I’ve finished reading. Oh — one more thing. How old are you, dear?”
“Fifty-six,” I said. After an awkward little silence, I added, “I know. Not a typical age for a debut.”
“Well that’s okay,” she said. I felt the first twinge of regret and thought: wait until she finds out about the Parkinson’s.
When I hung up, I was almost afraid to open the door of my daughter’s room. After years of crafting my book in the safety of my house-cocoon, I felt like both of us — my book and I — were stepping out onto the freeway.
The agent’s contract arrived three days later, thirteen pages of the most byzantine language I’d ever read. The lawyer I showed it to was astonished by its overreach and negotiated for two weeks with the agent’s business manager. Lila, from the literary agency, and I had several delightful and productive editing conversations. Everything seemed to be on track; still, while my lips formed utterances of excitement when family and friends congratulated me, inside, I restrained myself from celebrating.
“If it’s too good to be true it probably isn’t,” the adage goes. Two weeks later, right on schedule, I received my manuscript from the agent with the comments she’d made during her flight home. Reading through the notes, I knew immediately that she regretted having taken me on. Her notes had a lilt of disappointment — “I’m afraid…Honestly, this is just…” — as if she felt I’d made a promise to her in the first 100 pages and had broken it in the remaining 220. Among other things, she’d hoped it was a book about sisters. It wasn’t. Within a few days, I learned the magnitude of the problem: she’d disagreed (“very rare,” she noted) with Lila to the degree that she couldn’t let Lila work with me to “fix all the problems.” She recommended I hire an independent editor. “And then, Catherine dear, I truly hope you will let us see it again.”
I could spend a paragraph breaking out all the special little horrors contained in the agent’s kiss off, but I’ll focus on its basic capriciousness: we had a contract! Did a contract that had attempted to claim the rights to all of my creative work — whether a book or a building — for fifty years after my death, exempt her from any responsibility to me? A couple of months later, I would ask to be released from our contract. Because even if I could revise the manuscript to her satisfaction, which was a long shot, since she wouldn’t comment on what she wanted from the book, I realized I’d lost all respect for her. She’d behaved sleazily by making a pre-emptive strike on my book, grabbing it before the other agents had a chance to finish reading it.
Now, I had to come to terms with the fact that my book, which had “screamed film,” had failed in some major way. It had attempted its first flight from the nest only to splat below the tree.
Parkinson’s swooped in, its ominous black shadow — and not the beacon of my book — describing my future.
Having a degenerative disease lends a melodramatic quality to life’s twists and turns that might otherwise feel par for the course. I was aware that my feelings of failure were out of proportion and premature, based on one unfortunate encounter. But I heard the loud ticking of the clock. Parkinson’s was building a kind of cage around me, pulling my limbs closer to my body as my movements shrank, reducing the space I was taking up. One of the exercise routines prescribed to Parkinson’s patients involves repetitively and emphatically thrusting our limbs outward to remind our body how to reclaim that space. Writing and having my work read was another way for me to keep expanding, stretching myself out into the world.
Now, sitting in Dr. Bright’s office, the agent mishegas still fresh, I thought my Mirapex-induced insomnia might just finish me off. Dr. Bright was glad the Mirapex didn’t seem to be causing obsessive behavior, but he wasn’t thrilled with my pharmaceutical experiments for sleep. Maybe he thought it ironic that the last time I’d seen him, I’d been taking two drugs for insomnia and since then, I’d flirted with eight more — everything from benzodiazepines to tricyclics to anti-seizure and anti-psychotic medications, all of which can, but didn’t, help with sleep — yet, I was afraid of switching from a dopamine agonist to levodopa because of the risk of developing the side effect of dyskinesia down the road.
“Not everyone develops dyskinesia from levodopa,” Dr. Bright told me. “Does it make sense to sacrifice the quality of your life now in hopes that it will guarantee you a better quality of life much later? Your life is now. Look at you. You’re completely exhausted.”
Dr. Bright was right. I needed to sleep now. I stopped the Mirapex and started the levodopa. In three days, I was sleeping as I had been before my diagnosis and levodopa was so much more effective than the Mirapex for my symptoms that I felt years younger. Not a moment too soon. I needed all the help I could get to salvage my confidence and get back on track with writing.
Meanwhile, Hadley was taking Mirapex but unlike me, she’d made friends with her wakeful life. Her career as an artist was thriving. Her paintings were represented by galleries in both Missoula and Portland, Oregon, and Missoula was wearing more and more of her work as she continued to take commissions for murals in public spaces. She’d completed murals for a pancake parlor, a sushi restaurant, a pub, a juice bar, a medical research office and the Fort Missoula Historical Museum, among others. Also finished was her largest work to date, the Heart of Missoula Murals, seven paintings of historic Missoula covering 2400 square feet of the Allegra Print and Imaging building’s exterior. The murals depict the development of Missoula’s railroad, the founding of the University of Montana and the city’s industrial beginnings in the early 1900’s.
Hadley’s paintings that hang in the two galleries in Portland and Missoula that represent her are mostly of Montana scenes: cityscapes, lakes, rivers, trails and hillsides that are nearly iconic to those who know and love the region. Her collectors are struck by how powerfully she captures the shapes, light and colors of the western landscape. Soon after being diagnosed with PD, Hadley, who’s right-handed, considered what it would mean for her as an artist to lose mobility in her arm and hand and experimented with making a painting using only her left hand. The image she painted was of John, Sarah and herself walking on a woodsy path flooded with warm light and brilliant fall color. Dudley Dana, who has represented Hadley’s work at the Dana Gallery in Missoula, said of the piece, “It’s absolutely incredible. Just sheer emotion.”
Hadley began work on her largest project to date, the Missoula Catholic School Heritage Project, for which she’d create four, eight-by-twelve-foot high panels to be “a visual representation of the story of pioneering Jesuit priests, innovative Sisters of Providence and dedicated families whose early vision and passion for justice helped shape the landscape of western Montana.” In April of 2011, the first two panels were unveiled to great excitement and Hadley began work on the third.
Founding Summit for Parkinson’s and planning the non-profit’s first fundraising event to serve the Parkinson’s community were exciting and deeply satisfying for Hadley. Through the organization, she’d made many new friends with and without Parkinson’s. Summit’s first three-day event in October 2011 was ambitious, including an all-day conference featuring a panel of neurologists and psychologists, workshops on creative movement and expression, as well as a fundraising art auction and gala. The event raised over $140, 000.
Hadley’s full life as a mother, wife, artist and organizer would have been a tremendous amount to juggle mentally and physically for anyone, let alone someone with a degenerative neurological disease. Yet, when I talked to her on the phone, she seemed on fire about all she was doing.
“The wacky thing is,” she told me laughing, “I seem to suddenly only need four or five hours of sleep at night and I’m not tired. I can get so much done! I finished three paintings last night!”
I’ll admit I was a little envious that Mirapex, while keeping me up at night, didn’t make me need less sleep. Hadley wasn’t alone in her happy noctivagance. In our Parkinson’s Facebook group, there was a gang who regularly posted back and forth at two, three and four in the morning. One of them, Karen Jaffe, a physician and mother of three daughters, was always up until the wee hours doing crossword puzzles, Soduko, or even spinning. Like Hadley, she was taking a dopamine agonist. She slept three or four hours every night and claimed that was enough. “It’s not that I can’t sleep if I go to bed,” she explained to me. “I just don’t want to sleep.” In the seven years since her diagnosis, Karen, who’s fifty-six, has been enormously busy running her medical practice, mothering and throwing herself headlong into the Parkinson’s cause. She and her husband Marc host a highly successful annual Parkinson’s fundraiser, “Shaking With Laughter,” which raises money for the Michael J Fox Foundation. Karen also serves on the MJFF’s patient council. Since retiring from her medical practice in 2013, she has co-founded a one-stop-shop Parkinson’s wellness center in Cleveland that will offer speaker forums on PD, exercise and movement programs designed specifically for Parkinson’s patients, and an in-house movement disorders specialist. I often joke that Karen, a master networker (and always awake and available in all time zones), knows everyone on the world Parkinson’s who’s who list.
Even just recounting all that Hadley and Karen have accomplished since their diagnosis leaves me breathless. When I first got to know them and a few others in our group, I was in awe of, and somewhat mystified by their boundless energy and drive. They’re not all Type A’s, born athletes or extroverts. But being diagnosed at a young age with a degenerative disease, if it doesn’t crush you, can light a fire under you to make the most of your life. Also, for those with YOPD, there’s the compelling race for a cure within our lifetimes. To that end, hosting galas, art auctions, tennis tournaments, Zumbathons and other events to raise money for PD research has become an annual, impassioned undertaking for many in our Facebook group.
There was something about Hadley’s and Karen’s energy that worried me, though. It had that careening quality associated with machinery built for speed and power — enormously satisfying but most likely damaging to the machine in the long run.
All of us Parkies were driving under a potent, sometimes seductive new influence, one we would be reliant on for life: dopamine.