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.
Every summer, my family drives to the northernmost part of California to a cabin on a pristine, spring-fed river known for its icy temperature and trout. I am no fisherman, but the ranch’s seclusion and bucolic setting offer a sublime respite from city life. In July 2012, several weeks after Hadley’s appointment with my Dr. Bright, my husband, Lewis, and I took some friends with us to the cabin, where we reveled in heart-stopping dips in the river, canoe rides, baby back ribs, and margaritas.
One morning I found myself thinking about Hadley because I knew she’d just met with her MDS, Dr. Youngman. I walked down the riverbank to a spot where there was cell phone service and called her.
On the phone, Hadley was somber as she recounted her appointment with Dr. Youngman. The news of Dr. Bright’s denial of an MSA diagnosis had seemed to revive Dr. Youngman’s concern about MSA. Hadley had brought him the report of the 2008 tilt table test she’d undergone because she’d discovered in her MSA research that her test results correlated with the signs of MSA. The tilt table test, done to diagnose the cause of her fainting, had revealed that she had extreme orthostatic hypotension, or a sudden drop in heart rate and blood pressure when changing positions. Orthostatic hypotension, when it’s severe and frequent, can indicate a dysfunction of the autonomic nervous system that controls heart rate and other “automatic” functions like breathing, digestion and body temperature, most of which are eventually affected by MSA. Dr. Youngman found the tilt table results to be significant. Given Hadley’s other symptoms, including urinary retention, balance issues and her reported minimal response to levodopa, he concluded that it was not premature to be worried about MSA. He told Hadley to return to see him in the fall for more tests and talked with her and John about preparing to make the best of the time Hadley had left — typically, five to ten years after diagnosis. “I will of course always be here to help,” Dr. Youngman assured her.
Hadley reported all this with her usual calm. “At least we know now,” she said.
I understood how important it was for her to stop searching, and I empathized with her relief. Unlike her, though, perhaps because I wasn’t the one who’d been given this drastic diagnosis, I could allow the news to hit me head on, and it was a monster. Over the next couple of days, Hadley’s new diagnosis also rekindled my frustration with Dr. Bright’s easy denial of MSA. How would I address my feelings with him? I wondered. If I did, would I jeopardize our comfortable relationship? I hated the thought; it had taken some time to find an MDS I liked.
On a sultry evening at the ranch, I was well into a margarita when I decided to walk down the river to check my email. The moment I saw that I had service, my phone rang. It was Dr. Bright. I took a deep breath and answered. It was Friday, past the end of his workweek, but he was in search of a last minute replacement for someone who’d dropped out of a study he was working on. He explained the study and I told him yes, I would help them out by getting a brain MRI the next week. I took in very little of what he said about the study — he could have told me they were looking for brain Martians — because I was preoccupied with deciding whether I had had too much margarita or not enough to talk to him about Hadley. Then, the dam burst — there was too much I wanted to say.
Fortunately, the tequila and the view of the river from where I was standing made feeling angry impossible. After telling Dr. Bright about Hadley’s latest diagnosis, I asked him my main question: how could he have ruled out MSA simply based on its rarity and her age? When it seemed he was about to respond, I lost cell service. There was plenty of time to feel regretful I’d brought the whole thing up and now I had to decide whether to call him back. I did. When he answered, he acknowledged my concern, but remained firm that Hadley had idiopathic, or “garden-variety” Parkinson’s. When I pressed him on her symptoms that could point to MSA he said, “We don’t circle the wagons unless we know for sure because doing so can perpetuate a patient’s irrational fear.”
Our connection was in and out, so we had to say goodbye. I walked back to the cabin thinking about Dr. Bright’s “wagons.” And who was this “we” he spoke of? I pictured Hadley, sitting in the dirt, her legs bound together, wagons circling her: they’d been arriving for months and she could see them all too clearly, dust rising behind their wheels. Now, apparently, so could Dr. Youngman. It wasn’t just the poor phone connection that made me feel Dr. Bright wasn’t hearing me; his words had sounded confident but generic and, in the case of Hadley, possibly irrelevant. Instead of talking about Hadley, the person — flesh and blood, it seemed as if we’d been having a philosophical debate and that he was letting me know I didn’t understand the rules of engagement. Or, if I did understand them, that I had somehow broken them.
As summer moved along, Hadley the patient was struggling. But Hadley the artist was is in big demand. Burgerville, a chain of thirty-nine restaurants all over the Pacific Northwest that serves fresh, local and sustainable food in environmentally conscious facilities, had hired her to paint a mural inside their newest restaurant under construction outside of Portland. For ten days, she worked nearly twelve hours a day covering a wall with a scene from local history; she was exhausted the entire time, often stretching out on the tile floor to take short naps. Burgerville was very happy with the finished mural. Hadley had enjoyed her working relationship with the company and was excited to discuss possible future projects with them.
In Missoula, Hadley continued work on the murals for the Missoula Catholic Schools Heritage Project. And, she received thrilling news that she was one of three semi-finalists chosen from among fifty-five mural painters from across the country to submit a proposal for an eighty-square-foot mural inside the Montana State Capitol Building in Helena. All at once, she was awash in opportunities that are rare for artists. But how would she manage it all with her progressive medical condition? What would she tell her clients? They knew she had Parkinson’s; now, she struggled with whether to explain her new diagnosis, especially since her illness had been a mystery for so many years that she was reluctant to come right out and say “MSA.”
Her reluctance would prove to be well founded.
While Hadley painted, I was still buried deep in my novel, Dream House. It had been a year since I’d rescinded the contract with the agent who’d made the preemptive grab for it. The silver lining of my unpleasant experience with her was that I took her advice to get some help from an editor, rather than passing the manuscript on to the agent who’d initially wanted it. The editor she’d recommended turned out to be an excellent match for me and for Dream House; Jay enthusiastically admired the book, and was excited to collaborate.
When Jay and I started meeting, I had no idea how an editor worked. After so many years of relying on instinct and sporadic feedback from my writing groups, I had the urge to hand the manuscript to him and tell him, “Have your way with it and call me when you’re done!” Editing doesn’t generally work that way. Editors have a nose for what works and what doesn’t and they offer their insights to jumpstart the author’s own revision process. I was happy to discover that Jay and I agreed on what was most important about the book, what made it unique. He was skillful at nudging me to improve my work without interfering with my creative process or the novel’s sensibility. For a year, we’d been brainstorming about, among other things, how to sharpen and distribute plot points for optimal impact. We’d meet, I’d rewrite. It was exhilarating and it was exhausting. There were times when I lost faith, such as one long night in December 2011, when I emailed him:
I’ve been awake fretting and just have to ask: how likely do you think it is that I’m going to be able to sell this book? Sometimes I feel like it’s human and it’s just getting older and more tired and I don’t know if it’s the book or just me. I have these total lapses of confidence every now and then and can’t tell if they’re rooted in the real possibility that this book could languish or just typical first-time author jitters and impatience.
It’s just middle-of-the-night jitters, which I greatly admire. I think the book is very strong and will sell and find a responsive audience. You got your revisions done without getting bogged down or lost: you have a clear sense of what you want to do and can focus on it and do it well and relatively fast (a relative term).
What will happen next is that you will get completely sick and tired of the book, and that’s when you’ll know it’s done. And then, after a respite, you’ll forget that you ever had any doubts and you’ll get excited again.
So don’t freak out, don’t worry. Keep working, enjoy the holidays, and call me any time for a reality check/reassurance.
Jay was right. After a year of revising Dream House with him (on top of the years of rewriting before that), I sometimes became nauseated when I opened the document on my laptop. My bad mood made it difficult to discern whether I was creating new problems or making progress on the book. Finally, in July, after my trip to the ranch, I sent Jay my latest revisions.
I read the pages you sent and you nailed it! Congratulations! I loved what you did. It works, and it’s wonderful.
When I received this response, I exhaled a big “YESSS!” into my empty house. I’d been trying to build a novel on my own, combatting my considerable fear of failure with sheer determination, and Jay’s help felt like the best kind of nurture. I understand why editors are sometimes referred to as “book doctors,” though “book therapists” might be more accurate. Not only can they diagnose and help fix things; Jay fully understood my book’s emotionality, which is not so separate from my own. Being able to share everything with him about Dream House — from the psychology of its characters to its structure, to the middle-of-the-night anxiety it caused — was not only intellectually stimulating and productive, but it was also a tonic for my mental and physical health.
A book is not a being; an editor is not an MD. As much as I am tempted to, I wouldn’t dare to stretch these metaphors further. But there is this: an important part of what made working with Jay so effective was that we both understood that while he has doctored many, many books, Dream House was my book; therefore, my ideas and instincts about it were at least as important as his informed recommendations. We were both wrong at different times, and when we openly debated an editorial issue, something wonderful happened: it became perfectly clear to us what should be done.
The successful working relationship Jay and I maintained throughout the revision process for Dream House made me wish my doctor-patient relationship with Dr. Bright could enjoy the same sensitivity, respect, and openness. It seemed possible; I felt certain that Dr. Bright genuinely cared about me as a patient. But his approach to Hadley and our unfinished phone conversation at the ranch had left me disillusioned. In a couple of months, I would be face-to-face with him at my semi-annual checkup. Before then, I would have to figure out how to express to him what I was feeling. Otherwise, there would be three of us in the little exam room: Dr. Bright, the elephant, and me.