An Alert, Well-Hydrated Artist in No Acute Distress
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.
In a December 2016 interview with journalist Bill Moyers, poet Jim Haba observed:
When the gravity of our current confusion somehow reminded me of Matisse’s remark that ‘black is also a color’ I began to see the necessity of squarely facing the darkness of our predicament. It seemed that only when we stop and give ourselves over to fully taking in this darkness can we begin to gauge its scope and scale. And then, paradoxically, we may discover within that very blackness the energy that will sustain our resistance, our struggle for clarity. Deeply inhabiting a work of art…strikes me as an important way to tune ourselves and to provide a life-preserving rhythm for the long struggle that lies ahead.
Haba was addressing the urgent crisis precipitated by the 2016 U.S. presidential election. But his words also eloquently speak to our relationships with illness and disease. While painting and writing, Hadley and I have had access to reservoirs of creative energy that has unexpectedly pooled in the darkness of our disease. Neither of us would say, “I was able to create this work despite…” Whether because of a keen awareness of our increasing frailty and the precious wonders found in life’s fleeting moments, or an internal drive generated by neurochemicals, we would say that our disease has helped fuel our work during the past five years. Too, both of us feel that deeply inhabiting our art, as Haba suggests, has been life-sustaining—a prescription for “the long struggle that lies ahead.”
Two years have passed since Hadley completed the Montana Women’s Mural, three and a half since she was diagnosed with multiple system atrophy. She knew she would never again work at the grueling pace required for the Montana Women’s Mural project. Every day, she suffered from profound fatigue and painful muscular spasms in all parts of her body. Her neurologist treated the cramping with oral baclofen, a muscle relaxant, but chronic use caused unpleasant side effects.
In the summer of 2015, Hadley learned of a medical intervention that would end up having a huge impact on her quality of life: intrathecal baclofen therapy. ITB is a surgically implanted delivery system for baclofen that’s brought great relief to some MSA patients. The device involves a pump — a round metallic disc about 1 inch thick and 3 inches in diameter — that’s implanted under the skin of the abdomen. A catheter connecting the pump to the spinal cord is also implanted under the skin to transport the medication directly to the spinal fluid. The pump is then programmed with a small computer that communicates with the pump via a wand placed over the skin. Because the baclofen has direct contact with the spinal cord and can be delivered continuously, it’s much more effective than when taken orally, and doesn’t have as many side effects.
“Yikes!” was my response when Hadley told me she was considering the surgery. “You know,” she said, “I guess I’ve just gotten to the point where the idea of having foreign objects in my body and a tube going into my spine doesn’t sound so bad. And accepting the help I need to feel better seems like a big moment of accepting my disease.”
Hadley was scheduled for surgery for September 10, but she was worried. She’d been planning to meet her mother, Jana, in Prague with Sarah on October 12. If she had the surgery, would she recover in time? But without the benefits of the surgery, she might not feel well enough to enjoy the trip. Considering her physical condition, “enjoying the trip” sounded to me like a long shot with or without the surgery. But I knew returning to the country of her ancestors with her mother and daughter could be a once-in-a-lifetime experience.
Intrepid as she is, Hadley decided to go for it and have the surgery. The several-hours procedure went well, but she endured a three-day spinal headache that was finally relieved by an epidural blood patch. She fainted several times during the first week of recovery in the hospital. This was not a major concern to her, a pro fainter, but she alarmed the nurses one day when she was out for so long she turned blue. The good news was that with the baclofen continuously circulating through her system, she noticed less muscle rigidity right away.
The hospital kept Hadley eighteen days — much longer than she’d expected. The many months of deferring health maintenance while working on her projects and had taken a toll, and her doctors wanted to be sure she left the hospital equipped and in better shape than when she came in. They prescribed a full schedule of physical therapy and helped her come to terms with her need for a wheelchair. Not easy, but she was pleased that her custom chair was designed to handle slopes and uneven ground and would have a “power booster” so she could hike on trails with her family.
While in the hospital, Hadley often expressed to me her appreciation for the people caring for her. It occurred to me that after working for so long to rise above her physical limitations, she’d finally given herself permission to put aside her responsibilities and receive the focused medical attention she badly needed.
Whenever we messaged each other, she was upbeat. One day, she texted me a photo of herself drinking from a big cup with a note that said: “I thought you should have a selfie of my alert, well-hydrated self in no acute distress.”
Another day, she surprised me with a photo in which she was painting in her hospital bed. She told me she had a show coming up in early October, just before she would leave for Prague. Of course she did! She was unstoppable!
Hadley, Sarah and Hadley’s new wheelchair went to Prague in October as planned. It took them 32 hours to get there, but the time together with Jana was delightful. The wheelchair made sightseeing infinitely more comfortable, efficient and safe. And, Hadley was thrilled with how well the steady infusion of baclofen relieved the pain and exhaustion caused by her rigidity.
When she returned to Missoula, Hadley told me she felt peaceful, that she’d had a wonderful life and had no regrets about things not accomplished. “I don’t need a bucket list,” she said. She was content being with her family and friends, painting, and making the most of each day. Sometimes, that meant sleeping a lot; other days she spent much of her time at meetings for the nonprofit she’d founded, Summit for Parkinson’s. Having given up driving because of a diminished ability to focus her visual attention, Hadley grew more concerned about what she perceived as an overall decline in mental functioning. She chose to undergo cognitive testing, which revealed significantly impaired executive function and spatial/visual skills, as well as audio memory. (I’m compelled to note I’ve never noticed these impairments; she always seems to be perfectly on her game.) Her neurologist prescribed Ritalin, a nervous system stimulant, and Aricept, a drug used to treat cognitive impairment related to Alzheimer’s, both of which have been helpful.
A few months later, in February 2016, Hadley had the opportunity to work through some hard feelings she’d been lugging around for more than three years. She received a message from Dr. Youngman, the movement disorders specialist who’d diagnosed her with PD in 2010 and two years later, had “fired” her when her diagnosis became unclear. He was going to be in Missoula and asked if she’d like to get together. Hadley gathered her courage and over coffee, shared with him how confused and abandoned he’d made her feel. Dr. Youngman listened and let her know that he understood and felt bad about what had happened. Hadley was grateful and relieved to be able to close that dark chapter of her medical saga.
As many times as she’s said, “I’m going to be careful about what I take on,” Hadley’s continued to charge ahead with remarkable initiative, energy, and productivity. That spring, she began a collaboration with the director of Missoula’s Silver Foundation, Carolyn Maier, on an art installation that combines photographs, stories and quotations to illuminate the journeys of people around the world living with Parkinson’s. The centerpiece of the exhibit, titled Forging Resilience, is a life-size metal tree foliated with thousands of handmade leaves, each inscribed with a message from someone touched by PD. The installation premiered at the Montana Museum of Art and Culture in November 2015.
In September 2016, Forging Resilience traveled to Portland, Oregon where it was exhibited at the World Parkinson Congress (WPC), a 3,000–5,000 person event held internationally every three years. Hadley and I arranged to meet in the WPC convention hall, and as I was waiting for her, I found myself remembering the first time we met in person in 2011, also in Portland at a Parkinson’s fundraiser. She’d struck me then not as a patient, but as a vibrant and enthusiastic ambassador for her new disease, Parkinson’s. Now, as I watched her rolling toward me in her wheelchair, stopping to greet the many friends she’s made over the past six years, I saw the same: a vibrant, enthusiastic ambassador, now for her more complicated disease, multiple system atrophy. It’s no wonder that she was recently asked to serve on the Board of the Multiple System Atrophy Coalition. I know their community, too, will benefit enormously from her creative and well-considered ideas, compassion, and infectious spirit.
A year before my novel, Dream House, was published, my agent asked what else I was working on and I sent him a detailed description of An Alert Well-Hydrated Artist in No Acute Distress. He responded that while the story sounded dramatic, most publishers generally wanted to avoid “tales of misery” or “triumphing over misery,” so I shouldn’t plan on mine getting published. I was confused by this, hard pressed to think of a book that didn’t involve some degree of misery. Except I wouldn’t call it “misery”; I’d call it “conflict,” or, more grandly, “the human condition,” without which a story is not really a story. But I heard him: He knew, even without reading it, that this project was not one he was interested in trying to sell.
My agent’s rejection was not nearly enough to dissuade me from plunging ahead. The story had swept me into its current. Hadley’s journey and my exploration of the workings of the brain continued to expand with power and poignancy. Besides, I was hooked on what seemed like a decidedly healthy habit; other than sleeping, writing is the only activity that allows me to completely tune out my body’s chatter and the fear and sadness it can trigger. When you’re writing what you’re meant to be writing, expressing the ideas and emotions that feel most urgent, your mind is in heavenly flight from your body, except for the almost physical sensation of something tugging on your heart. It’s that tug that’s kept me writing, not any vision of a destination. Destinations can be reached by way of shortcuts and formulas, through unflagging determination or sheer endurance. Sometimes, goals can be met by abandoning something we care about to take up something someone else cares about. But when we focus too much on the questions: Where will my writing get me? For whom do I write? we risk losing the tug.
In the months before Dream House was published, the publicist who’d instructed me to make a website suggested I start a blog to attract readers to my book. If only writing were as easy as baiting a fishing line with a little fish to catch a bigger fish! What more could possibly find to write about? I wondered. I was 140 pages into An Alert Well-Hydrated, and between it and the novel, I’d written pretty much everything I had to say at the time.
The idea to publish An Alert, Well-Hydrated as a serial came to me quickly, as did my rationale for it. My agent thought it was unpublishable, and even though (or maybe because) his reasoning seemed flawed, it reminded me how much I didn’t want to embark on another agent search. I also asked myself whether a book was the best format for the story. How would it be marketed? Or, as they so coldly put it in the book business, “What shelf would we put it on in the store?” Thinking about having to groom my work to make it fit some category dragged on the momentum I’d been enjoying. As soon as I hit on the idea of publishing it myself, I felt liberated. I conveniently had a place for it; I had blogger status at the Huffington Post since they’d published an essay of mine. My son, Tobias, also introduced me to Medium, with its easy-on-the-eyes formatting. Between these two sites and Facebook, I had a potential audience who might be willing to read my story in ten-minute bites, but probably would be disinclined to pluck it whole from a bookshelf. Last but not least, I was happy that the “Blog” tab on my website would be able to deliver.
There might not be money, but there’s freedom in whizzing past those front gatekeepers, going directly to the back door. For one thing, by publishing online, I’ve been able to take liberties with the content; there was no authority telling me, “You can’t expect readers to follow a 2000 word digression about dopamine.” The rhythm of posting episodes every two weeks has allowed me to feel productive and I’ve enjoyed the instant gratification from online feedback.
I like to think that by writing, I’m helping to keep my atrophying brain limber. In the last couple of years, I’ve feared the synapses involved in initiating oral conversation are not what they were. While I can engage in a dialogue with the usual facility, if there’s a lull, I feel as if initiating a new topic is out of reach in the same way that my arms and legs, when I’m not medicated enough, have difficulty fully extending. I’ve wondered if Parkinson’s is already causing cognitive sluggishness, or worse, an actual paucity of thought. Could this just be natural aging? No doubt I’m overthinking it (anxiety is a PD symptom, too). Even if I’m lucky enough to remain in sound enough mind, though, there will likely come a day when the throat and mouth muscles needed to speak fluently will be uncooperative. My words might stumble and slur or become largely inaudible because of a softening voice. Besides dementia, this inexorable hobbling of oral communication could be PD’s biggest monster and makes my wordsmithing feel all the more essential. Because if we don’t have a means to express our thoughts, what’s left? Who are we, if not our thoughts?
The late Paul Kalanithi, who wrote about living with terminal cancer in his memoir, When Breath Becomes Air, studied literature and philosophy before becoming a neurosurgeon. He had a passionate interest in understanding what makes life meaningful, and literature, he felt, offered the richest account of the life of the mind and of human meaning. He took up neuroscience to explore how the brain enables this meaning through the circuitry that allows emotion and language. He wrote:
I had come to see language as an almost supernatural force, existing between people, bringing our brains, shielded in centimeter-thick skulls, into communion. A word meant something only between people, and life’s meaning, its virtue, had something to do with the depths of the relationships we form…
An Alert, Well-Hydrated Artist in No Acute Distress is the story I wanted to tell. You are a person who wanted to read it. Through the magic medium of words, our brains found each other. Even if I don’t know you, I have felt you there, been propelled by your anticipation, your following along. Perhaps I have read your stories, too, but regardless, we have inhabited this art together and discovered colors in the blackness.
In this way, is it not exquisite to be human?
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