An Alert, Well-Hydrated Artist in No Acute Distress is the story of my friendship with Hadley Ferguson, whom I met soon after we were both diagnosed with Parkinson’s disease. Despite our age difference of twenty-one years and a thousand-mile separation, Hadley and I have shared fun, fear and frustration navigating our neurological disease while working to complete our most fulfilling creative work.
January 26th, 2017
After describing the inspirations for the novel, I would read a couple of passages and feel my anxiety drop away. Speaking the words I’d written, I re-experienced the passion I’d felt when I started the book years ago. It was powerful to feel I was engaging my listeners’ emotions and imagination, not by selling plot or drama but simply through my choice and arrangement of words. Finally, I was out of my room, playing my music. People were listening.
December 15th, 2016
A lot of pomp and circumstance — it was a government affair, after all — but knowing the monumental effort that had gone into the murals, to me, no ceremony would’ve seemed too grand.
December 1st, 2016
My brain feels tired. I have such a hard time thinking, seeing the big picture, staying on task and focusing. Incredibly, the paintings don’t show this. The images are looking strong. But the big clue that I’m struggling is that the amount of canvas that’s covered is still minimal.
November 16th, 2016
Now that her medical mission was complete, Hadley was eager to stop being a fulltime patient and get back to being an artist. Even if she’d wanted to take time to reflect on her new health status, her mural commissions made that impossible. She’d moved directly from a marathon to get a diagnosis to a marathon to create the Montana Women’s Mural.
November 2nd, 2016
For those of us with children, one of the hardest aspects of having Parkinson’s is contemplating how it will change our relationships with them. We want to be the strong, reliable person they count on for comfort and advice, building family bonds, moving them into their college dorms, celebrating the events of their lives. The last thing we want when we bring a child into the world is to imagine we will be a burden on them before they’re even grown.
October 19th, 2016
A little after eight o’clock, I take my levodopa, which will kick in 45 minutes later. I sign a couple of petitions and post an opinion or two. I allow the planet’s woes to trouble me enough to diminish my personal plight, but not so much that they sink me. Gradually, the isolation I felt upon waking recedes and I feel I belong to the world. I have not yet left my bed, but I am participating, therefore I am. And, now, flush with dopamine, I can move comfortably, so I can also do.
October 3rd, 2016
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.
September 18th, 2016
In the mornings, Hadley scaled a stepladder at the Loyola Sacred Heart School to work on finishing the twelve-foot-tall murals there; in the afternoons, she’d work on laying out the designs on the three, five-foot-tall Forestry murals for the University. Her pattern was to work intensely when she had the energy and then crash for a day or two. “I need to keep going while I can because I feel like I’m at the bottom of a huge mountain and if I stop, I’ll never be able to get going again,” she told me.
September 6th, 2016
When people ask what scares me most about Parkinson’s disease I tell them: the possibility of cognitive decline. I can hardly bring myself to say the word "dementia."
August 21st, 2016
We were awash in freedom. Freedom to run wild through our neighborhoods or ride alone on a public bus, to row a boat without a lifejacket, to bike without a helmet, to wrestle and sprawl, unbelted, in the back of the cigarette smoke-choked family station wagon. Freedom to eat Twinkies, Velveeta, Fruit Loops, a smorgasbord of canned and frozen foods miraculously preserved by new chemicals. And that yummy school paste! Blissfully unaware of pollution, we were allowed to wade into anything liquid, bake ourselves jerky-brown on the beach and chase the DDT truck as it spread its cool fog through our fields.
August 1st, 2016
With a bit more eye contact or a couple of key questions, Dr. Truitt might have been able to communicate an understanding of Hadley as a complex individual saddled with a deadly disease, rather than an engine to be monitored as it sputtered and failed. Empathy doesn’t take more time to convey than indifference.
July 19th, 2016
It’s brain surgery. I have two little kids. I worry about the risk of cognitive decline caused by the surgery. I mean, isn’t there anything we can try that’s less invasive?
July 4th, 2016
Lucy sprang from the driver’s seat all tan and tank top, Lycra and platform sandals, big hoop earrings and a hip, don’t-mess-with-me short haircut. She lurched to the trunk and yanked out their suitcases with enough force to propel them across the street. If I didn’t know Lucy, didn’t know Parkinson’s could strike the young and had just seen her on the street, I might have suspected she was on crack.
June 20th, 2016
Practitioners of mindfulness know the rewards of feeling grateful and present in the moment, but what if all of us, even without facing terminal illness, could attain this gratitude for life, could seize on it right now as if at any moment, the bodies that provide us the power of sentience could be broken?
June 6, 2016
In today’s practice of evidence-based medicine, diagnoses are often made on the basis of statistics and data provided by advanced technologies. But when a patient’s symptoms don’t fit the usual pattern or tests are inconclusive, the reliance on algorithms and evidence will often constrain a doctor’s thinking, making the diagnostic process vulnerable to error.
May 25, 2016
Hadley told me that all the noise in her head from years of trying to get a diagnosis had been sucked out and she was experiencing a "huge silence."
April 13, 2016
During her diagnostic journey, Hadley had been scrutinized, analyzed, drugged, twisted, tilted, poked, punctured, injected, shocked, x-rayed, scanned, operated on. And still, doctors couldn’t seem to see her.
Arpril 20, 2016
There’s a stigma attached to any condition that is believed to have a psychogenic rather than organic cause. The disability it causes can be perceived as less legitimate and therefore less deserving of help or compassion.
Arpril 8, 2016
Fast food, fast souvenirs, fast art — in the mall, they’re all available for the 35,000 people who work at the Mayo Clinic and the thousands of patients who are killing time between heart-pounding visits to the medical specialists who’ll send them back to Riyadh or Rome, Marseille or Missoula with the most costly souvenir of all: a diagnosis that will change their lives.
March 21, 2016
In this day and age, a physician’s assumption that she always knows what is best—both physically and psychologically—for an adult patient is fundamentally flawed. When a doctor is reluctant to be forthcoming with her patient or is unreceptive to a patient’s wish to be participatory in his own health care, an inequality is established that compromises the potential for a collaborative, professional relationship.
March 6th, 2016
My body is a mystery that I’m sentenced to live in and my doctors, with their expertise, help me to solve that mystery. In the nature of a true mystery-solvers collaboration, I want them to share all the clues with me — scary or not, when they pop up on the horizon. You are the voice of my nervous system; I’d much rather get news from you than from Facebook or Dr. Google.
February 23rd, 2016
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.
February 2nd, 2016
From our first meeting in 2010, I trusted Dr. Bright almost blindly. Two and a half years later when I asked him to meet with Hadley, I felt certain he would see her illness clearly and wouldn’t dismiss her concerns the way her MDS, Dr. Youngman, had. I admit to having had fantasies that he would swoop in on the proverbial white horse and rescue her from a terrible fate.
January 18th, 2016
In all, I felt like I was getting worse. So was my doctor's bedside manner. She told me to shut up, once (with my husband in the room) and was openly dismissive when I asked about a handicapped placard. After a second request, she sighed and said, "No skin off my nose," then wrote the letter.
January 5th, 2016
Being connected with so many people with Parkinson’s can be frightening and painful, too. Occasionally, someone will post alarming news that will sock me in the gut if I’m having a particularly bad day: their husband is leaving them, they can no longer hold the job they love, they had a dangerous reaction to a medication.
December 22nd, 2015
I wanted to soothe Hadley's fear, but in her words, I heard nothing but reasonableness as she calmly synthesized what she was experiencing in her body with the medical information she’d uncovered. She’d done her homework; I could see no crack in her concern where I could wedge in an encouraging word.
December 9th, 2015
Studies of those who are treated with dopamine have found that it can often boost creativity and even artistic skill. In some cases, Parkinson’s patients have begun to excel at an entirely new creative pursuit.
November 25th, 2015
One of the exercise routines prescribed specifically to Parkinson’s patients involves repetitively and emphatically thrusting our limbs outward to remind the body how to reclaim that lost space. Writing was another way for me to keep expanding, stretching myself out into the world.
November 12th, 2015
I thought about Dr. Bright’s question. I knew that obsessive behavior was not an uncommon side effect of the drug. I told him that the Mirapex helped me walk normally. It also energized me mentally and I was enjoying productive work on my novel, Dream House, which I was revising for the third—or was it the fourth? Or fifth?—time.
October 30th, 2015
No amount of listening to “loving myself, healing myself” meditation tapes could persuade me to feel compassionate toward my body—it had stolen my life for no medically apparent reason.
October 22nd, 2015
Patients with complicated health histories get road-weary as they recount them over and over to doctors. And sadly, doctors a patient seeks help from are not immune to tuning out when the history begins to read like an epic war story.
October 15th, 2015
There are times we all defer to our doctors when it would serve us not to. We want to believe in them. And we want them to believe we believe in them, because we need them: they hold the keys that unlock the mysteries of our bodies.
October 8th, 2015
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—the one that slid easily off her fingertips—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.
October 1st, 2015
All the people I’d consulted about my symptoms had been so very optimistic! They seemed, actually, aggressively optimistic. I wanted very much to believe them, but I wasn’t feeling it. When you’re moving in ways that make your family and closest friends wince with barely-concealed terror, it’s not human to assume the best-case scenario.
September 22nd, 2015
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.