An Alert, Well-Hydrated Artist in No Acute Distress
Episode Twenty-Two: Losing Ground, Gaining Altitude
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 the weeks following her July 2013 MSA diagnosis, Hadley hustled to meet the design proposal submission deadline for the Montana Women’s Mural competition. The mural, which would hang permanently on the third floor wall flanking the Montana State Capitol building’s grand staircase, would be a dream commission for any artist. The work was to commemorate the 100th anniversary of women’s suffrage in Montana by depicting women’s contributions as community builders throughout the state’s history. Noting that of the forty existing art pieces in the Capitol building’s permanent collection, only seven included an image of a woman, two women legislators had initiated the Senate bill to establish the commissioning of the mural. The project’s guidelines stipulated that the work not depict any one, recognizable woman but rather, represent Montana’s anonymous “unsung heroines” in their diverse roles on ranches, in their tribes, government, businesses and as founders of schools, theaters, libraries, and hospitals.
As a strong community contributor, feminist, and the mother of a daughter, Hadley was deeply inspired by the project’s objectives; ideas and images for a narrative about women’s roles in Montana’s history came to her fast and furiously. But the day before she planned to drive her design proposal from Missoula to Helena, the mural project’s administrator called Hadley and the other finalist to tell them that budget constraints had forced them to put the project indefinitely on hold. Hadley had mixed feelings about this development. On the one hand, she’d put almost everything else aside to complete a design she was excited about; on the other, she was exhausted and had been worrying about how she would execute the mural if she was given the commission. Maybe it would be a blessing in disguise if the project was canceled.
But losing the mural commission and its substantial fee would mean a bigger financial burden for Hadley and John in the coming year. Ever resourceful, Hadley researched best-selling author Stephen King’s Haven Foundation and decided to apply for a grant. King started the Haven Foundation after being struck by a car while walking along the road in 1999. When it took ten months to heal enough to be productive again, he realized how extremely vulnerable a freelance artist’s livelihood can be. The Haven Foundation grants funds to artists who have suffered career-threatening disabilities from illness or injury, or have lost their workplaces to natural disasters or other catastrophes. Hadley’s prognosis and increasing disability, as well as her enormous medical bills from the past few years would make her a strong candidate for a grant.
Again and again, I was amazed by Hadley’s resourcefulness and perseverance. Anyone else confronting her physical, financial and professional challenges might have been deterred, even if temporarily. But Hadley had found her way to a place of equanimity. How she described this shift at the time says as much about the excruciating difficulty of her medical ordeal as it does about her capacity for acceptance, compassion and joy:
COME BE WITH ME
I am entering a very peaceful place. There has been so much noise and distraction through this medical process, most of it with a lot of negativity attached, and as I further accept my diagnosis I am slowly leaving behind chunks and pieces of the past year/years. My body feels so light and free. I feel like I have almost let go of all of the weight I have been hauling along with me. All the noise was pulling me further from myself, isolating me. With the release of it I feel centered in a way I have never experienced. I feel open. I feel so calm. I feel happy.
I am not afraid of the road ahead. The road feels quiet and calm. It feels simple. It is inviting and comforting. It is bringing me closer to people I love and allowing me to be with them. I feel like the wall I started building when I was young is starting to come down and what I see on the other side is beautiful. I am not only seeing what is on the other side, but for the first time I am bringing it down for others to come be with me.
Somehow this centering and acceptance is bringing me to a new place that I have never been before. I have always wanted to be here, but I didn’t know how to get there. I knew this existed, but somehow I was so removed I felt like I would never be able to get close enough to touch it. It is amazing. I finally see myself and everything in my life is so clear. It is as if I have been hovering someplace outside of myself, and my shell has been maneuvering through life. I’m suddenly struck by the feeling of being back in my body and feeling what it is to live again.
My passion is coming into focus. I have been public through the arts, but my true passion lies with my people. I feel very content because I know I am connected to the people I love and that the connection lives and breathes beyond my physical presence. I will always be present in some way; I don’t see my time as ever ending. As I move forward, I hope to bring people closer to me. It is hard for me to feel their sadness, and I want to bring them with me to this place of peace. I want to be with them, support them, to love them. I want them to come be with me.
Would I be able to go with Hadley “to this place of peace”? I wondered. On many days, it seemed impossible not to become preoccupied with the painful inevitability, as I aged, of losing people in my life. Just months before Hadley’s MSA diagnosis, one of my closet friends was diagnosed with metastatic cancer. Like Hadley, Sylvia was a very informed patient, dogged in her medical research. She’d survived breast cancer ten years earlier, but now, four major hospitals were unable to agree on what kind of cancer she had, making a treatment plan unclear. Throughout the summer, Sylvia endured rounds of chemotherapy with remarkable good humor, sending me photos of her new hair from the wig shop and planning outings for her weeks off from the poison. Every time I saw her laugh, I wanted to cry: How much longer would I get to see her blue eyes dancing as she delivered her incisive analysis of the news? One day she told me, “I always thought I’d be around to take care of you when your Parkinson’s got bad.” Her telescoping punched me in the gut.
Hadley’s and Sylvia’s courage was an important reality check when my mood slumped because my agent hadn’t been able to sell Dream House to more than thirty publishers. A couple of them explained they could only take books that would be “big” and one of them lamented that publishing was at its “lowest point in my long career.” The rejections were generous, at least, and it seemed that in some cases, I was in the right place at the wrong time.
Armsden does a marvelous job of (blah-blah-blah)…I was really impressed by (blah-blah-blah)…But as much as I admire the book, I confess I’m not sure I see the best way to really break this one out. It seems that this otherwise wonderful business becomes harder and harder, the market being what it is. So, with admiration, I should pass.
When July was gone without a publisher in sight, I decided it would be unhealthy to remain in waiting mode. I opened the file for the other novel I’d been sporadically writing for five years. Working around commitments to family and friends, a house full of dust and contractors who were six months into our remodel, and my symptoms, I made myself sit at my laptop and type words that would push my story along. For two weeks, everything I wrote was slow and sticky, as if my fingers were connected to a donut, not to my brain. The donut was dense, full of fat and static.
Finally, I realized: My real life was out-shouting the voice of my fiction. Every time I spoke with Hadley, I felt an urgency to listen and rehash details, to wonder aloud with her, to dissect the characters and dialogue in her life that stood out so vividly. I recognized this urgency as the thrust that often launches a new writing project.
The troubled teens in my novel could wait! It was Hadley’s story I wanted to tell.
Hadley was very excited about the idea. She thought her experience would resonate with others trying to get diagnoses and raise awareness about neurological diseases. Braiding together our two stories was a way for me to be with her and to process my experience with Parkinson’s. I’d witnessed the empowerment fellow Parkies gained from throwing themselves into PD advocacy, education and fundraising, and I had a feeling that through writing, I too could put Parkinson’s on a leash, instead of the other way around.
That October, while I was acutely aware of how hard Hadley and Sylvia were working to make the most of each sick day, honoring their bodies’ limitations and struggling to remain equanimous in the face of terminal illness, my husband, Lewis, flaunted his disregard for his mortality by taking his hands off his bicycle handlebars going downhill at 30 miles per hour. After hitting a bump in the road, he flew off his bike, breaking three ribs, his collarbone and mangling his left hand so gruesomely it took three hours of surgery and subsequent skin grafts to return it to 85% functionality.
I would like to say that the first emotion I felt — after fear and then profound relief that Lewis was alive without head injury or internal bleeding — was compassion. But it was anger. At that moment in my life, just being human seemed harrowing enough; I had no patience for dangerous sport. “What were you thinking, taking your hands off the handlebars?” I asked him a few days after the accident. “You have a big life, a family and twenty-five employees who depend on you.” Lewis confessed he frequently rode for short stretches with no hands and had a “speed problem;” since he was a boy, he’s loved going fast. This latter fact I knew from being his passenger in our car, not to mention the four vintage motorcycles in our garage that he occasionally raced. What alarmed me was what he said next: “Even though I know cyclists have accidents all the time, I have never once imagined it happening to me. It’s like I lack an inner warning system that would tell me I’m being too risky.” It was a revelation for both of us and I was grateful for his insight and honesty, albeit arrived at the hard way.
Human bodies are miraculously designed, but we are not cars that come with different safety ratings. Yet, even though we are all constructed of flesh and bone, vulnerable to the same injuries and illnesses, and even though we all will die, each of us has our own special relationship with mortality. Illness or accident will bring most people face-to-face with the specter of death; some survivors, like Stephen King, will make the consequences of human vulnerability a cause. Among the unaffected, however, are those who curiously lack an inner sense of what threatens their survival, or might block such threats from their consciousness, as if the mere thought of them might be a harbinger of death.
For sure, there is an exhilarating freedom in living life as if immortal. But confronting one’s mortality can bring about a different kind of unburdening, one that comes with a heightened appreciation for life. In 2015, upon learning he had terminal cancer, the renowned neurologist and author Oliver Sacks wrote:
Over the last few days, I have been able to see my life… with a deepening sense of the connection of all its parts…my predominant feeling is one of gratitude. I have loved and been loved; I have been given much and I have given something in return; I have read and traveled and thought and written…Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.
Dr. Sacks wrote his essay just a few weeks after being diagnosed, and six months before his death. Hadley’s piece, Come Be With Me, describes a very similar shift in life view even though she still had years to live. 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?
The passion, vigor and altitude in Sacks’ and Hadley’s words prove that we can find thrill right where we are; even riding carefully, hands firmly on the handlebars, we can let go, we can soar.