Diagnosed with ALS, a Painter Strips Away Layers to Find New Art (and a new Artist) Hidden Beneath

We met for dinner at Pier 77 on Cape Porpoise Harbor, during the summer of 2012. Just down the road, the Kennebunkport Festival was in full swing; we were taking a few quiet moments from the events and general hoopla to have a conversation about art.  My companions included art lovers from Maine Magazine and Art Collector Maine, as well as artists Jon Imber and Jill Hoy.

Rarely having lifted a paintbrush myself, I was admittedly out of my element. I felt especially intimidated by Jon Imber. Described by some as an abstract impressionist, his paintings often sold for five figures, and his intellectual observations, gathered from 27 years as an art professor at Harvard, MFA graduate studies with artist Philip Guston at Boston University, and an undergraduate degree from Cornell, went beyond anything I could easily comprehend.

Not long after our June dinner, I learned that Imber had been diagnosed with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease.

Unfortunately, this disease was something I, as a physician, could comprehend. ALS is a progressive disease of the nervous system that causes problems with muscle control and function—including the muscles responsible for talking and, ultimately, breathing.  Considered a rare disease by national standards, it is nonetheless thought to impact 30,000 Americans at any given time.

One of these Americans had been my obstetrics and gynecology preceptor at Maine Medical Center, Dr. Bruce Churchill. Bruce taught me how to deliver babies . He himself had delivered more than 6,000 babies in his 30 years of medical practice. Bruce and I spent many late night (and early morning) hours sitting with laboring women and trying our best not to intervene in the birth process, unless absolutely necessary.

Diagnosed with ALS in 2007, 57-year-old Bruce Churchill died in 2012—not long after I met Jon Imber and Jill Hoy for the first time.

Bruce was a teacher until the end. His wife, Cindy, recalls how Bruce was always trying to help people understand his disease. “When nurses came in, he would explain every detail. Even when he was very sick, he wanted to be involved. He went to Mass General while he was doing a clinical trial, and he would come back to Maine and explain to the neurologists what his doctors were doing.”

Now it is February of 2014.  Kevin Thomas and I are visiting with Jon Imber and Jill Hoy again, seeing Imber for the first time since his diagnosis.  In 63-year-old Jon Imber, we find the same intense desire to teach that I had once known in Bruce Churchill.

Imber and Hoy, who summer in Stonington, live in a Somerville, Massachusetts artists’ co-op during the winter. Their building has its own printmaking area in the basement. Hoy shows us a storage room where finished paintings, hers on canvas, and Imber’s on TKTK, are stacked against the walls. Upstairs in their combined studio/living area, it seems that every square inch of space explodes with color and motion. Paintings give way to art history books, and nestle against trailing plants. Penciled notations on the back of the bathroom door document their son’s growth from a small boy to the height he has now reached as a college sophomore. The family hound dog, Ella, paces the floor.

Jon Imber  is seated at the kitchen table, sipping a glass of tomato juice through a straw. Imber no longer has use of his arms or legs, so the juice is held to Imber’s lips by their family friend (and fellow artist), 26-year-old Chris Hassig. Hoy has told us that Imber’s ability to eat has been greatly diminished. He is scheduled to have a gastrostomy tube inserted the following Monday, so that he can get his nourishment delivered directly to his stomach.

Imber’s speech is slow and deliberate. Protective of Imber’s energy, Chris suggests that he can answer more basic questions. Questions like “How are you? How is your son?” And, “What is going on medically?” are ones that Chris and Hoy answer repeatedly for outsiders, so that Imber will not have to.

With some maneuvering, we transition our visit to the space in which Imber and Hoy spend much of their time. Two beds, one of them a modified hospital bed, occupy the center of the room that doubles as their studio. A set of stairs leads to another small alcove, where Hoy’s vibrant landscapes cover the walls. Chris maneuvers Imber’s wheelchair into place and we admire the countless portraits that make up his most recent body of work.

Imber, who was still able to paint with his right hand when he was first diagnosed with ALS, soon became unable to do so. He then taught himself to paint with his left hand. When the muscles in both arms began to fail in 2013, he began painting with a brush attached to one of the fingers of his left hand. When he paints, his assistant helps him to stand and holds him by the waist from behind, as Imber maneuvers the weight of his body to create brushstrokes. He has also experimented with painting using a brush attached to a metal brace on his forehead.

Typically, Hoy and another painter join Imber in his painting sessions.

Painting together enables Hoy to continue her own creative process, which might otherwise get lost in the shuffle. “Painting for me is tapping into the deep channel of the world,” explains Hoy. “For Jon it is about the combat; the fight.”

Hoy admits, “Life is dense right now.” She reaches for Imber’s feet, which have become swollen and discolored, as a result of Imber sitting upright for too long. Settling them on a footstool, she massages his feet gently, to bring the circulation back. Her mane of silver hair falls across her face as she leans over him.

Imber tells us “I have found that I am changing continually, but as long as I have continued to paint, I have remained my own self.” His words come with great effort, and understanding them is not always easy. This is one of his greatest frustrations—and represents the evolution of one of his greatest fears. “I have no interest in silence,” he says. Although herself inclined to enjoy silence, calling it “deeply calming and centering,” Hoy agrees that for Imber, “It has been terrifying. Losing his voice has been his biggest blow of all.”

Yet it is through this continual loss that Imber seems to have found a renewed vigor. Scheduled for seven art exhibits in 2014, in settings as diverse as the Alpha Gallery on Newbury Street in Boston, the University of Maine, and the Center for Maine Contemporary Art in Rockport, Imber has also created more than 170 portraits of his friends and family members since his diagnosis.  Imber says about his recent work, “These are exciting paintings that have a place of their own. I make a point of making something really surprising every day: one blue eye, one black eye, one red ear. It doesn’t feel contrived.”

“I love when I am painting and having a dialogue with my favorite painters through history. As soon as I put down the color, I think of someone who has used it.  Sometimes I am remembering a piece of art and the orange from Ravenna from 600 AD. When I went to visit de Kooning, all the art history books were open in the studio.”

We listen closely to Imber’s words. Hoy sets an iPhone nearby, so that she can record his labored phrases. “I have loved all sorts of art and sometimes it gets in the way. Sometimes people get lost in the reverence of Marsden Hartley and Cézanne and Maine. That is dangerous with anything. I have been so lucky to have the best of both worlds. One by one the all influences are stripped away, and finally even you leave when you are painting.”

Imber continues, “Many painters want to be expressive and they have to force it. I know because I was one. Often they lean on alcohol and drugs, like Pollock and de Kooning.  My teacher, Philip Guston, tapped into his anxiety and his dark side. I’m trying to tap into my bright side. I have no option. Whatever I am tapping into, I want to get as deep as possible. It is a combination of energy and disturbance and humanity and joy.”

Julie Brown-Yau is a spiritual and depth psychology practitioner who helps people tap into the ‘unknown something’ Imber describes. Using a combination of techniques including guided imagery, Brown-Yau has been working with Imber and Hoy via Skype, from her practice in Laguna Beach, California. “We are a culture that has distanced ourselves so much from the body. The body has been cast off and the rational mind bowed down to. Nothing is bringing our awareness to the body, to how we feel, to what it’s like to experience things that are difficult in the body.” Brown-Yau’s work asks people to pay attention to their thoughts and emotions: to find a home again in their bodies

Individuals with ALS know what it is like to experience things that are difficult in the body, and to feel homeless even while being trapped in a functioning shell. Living with a disease that has no cure, disabling symptoms that are unpredictable in their progression, and a life expectancy of two to 20 years, provides the ultimate experiment in uncertainty.  Caring for these patients is enormously challenging for their families.

Hoy and Imber in their Somerville artists’ co-op

Jill Hoy is grateful for the large circle of friends and family who are participating in Imber’s care. “It takes a lot of work to keep one body alive,” she says. “Along with the deep sadness, it has been such a remarkable time.”  Fifty-nine-year-old Hoy, who first met Imber in 1992, describes their relationship as a “great and tumultuous love affair.” “Before I met Imber I had been in relationships with a few artists,” Hoy says. “I thought, ‘I will never do this again.’ Unless I had a strong ego, it was never going to happen. Jon has a strong ego. We are very different.” Over the course of years spent living, working and raising a child together, “We have created a good balance of feeding one another.”

Ron Hoffman, co-founder of Compassionate Care ALS, understands the importance of keeping relationships strong in the face of illness. He also understands the importance of simply being present. Says Hoffman, “Sitting with Jon is the epitome of the work. The first time we met, we just dropped into this place that is incredibly authentic. When we are sitting with someone, things drop away. We leave our baggage at the door.”

Sitting with others, especially those for whom we can offer no more than our presence, was a lesson taught to me by Dr. Bruce Churchill, as we waited for babies to emerge into the world.

Jon Imber muses on the fickleness of life, “I can’t believe what has happened. My mind is fine and I look down at my body and think, ‘Wow, what am I doing here?’ At times I feel like my old self. What a strange disease.”

To view Jill Hoy’s artwork, visit her page on Art Collector Maine.