We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient advocate from Syracuse, New York.
“There’s no cure or additional treatment as all viable options are exhausted. This is your new normal.”
My gastroenterologist was stating the obvious, yet I stared at him with incredulity. I’d had my second pancreatectomy a year prior, and it failed to control my critical and idiopathic hypoglycemia and pain. I was now receiving my nutrition via IV since repeated surgeries had reduced my ability to digest and absorb food, creating erratic swings in blood sugar necessitating constant monitoring. I was stunned that this was how things would be from now on.
I cried after that appointment as images of my life prior to getting sick flashed before my eyes. Until three years earlier, I had been working as a registered dietitian and diabetic educator, I cared for two busy teens, and I lived a life rife with joyful spontaneity. After a few week of impenetrable sadness I raged at God for condemning me to this life of constant pain and uncertainty. Why me? How could I be so sick when I lived such a healthy and active lifestyle? I knew I needed help to cope with this transition. Chronic illness was a dark and unfamiliar place. At 50, my life as I knew it was over.
I had always been a bibliophile, and I used audio books when I was too ill to read. Music was inspiring and while I had countless songs on my iPod it didn’t fill my days. My counselor gently encouraged me to try something new, so I decided to visit my local art store and see if there was anything of interest. I’d taken classes over the years but didn't consider myself an artist, so I walked through the door with trepidation. But I was immediately welcomed by a knowledgeable artist who took me in hand. We walked down the aisles and she spoke with ardent enthusiasm about the different mediums available to me. When I saw the rainbow of acrylic paints I made my decision: I was going to paint.
Immediately following my purchase, I had buyer’s remorse. What did I know about painting? I had been encouraged to pursue excellence, and this was akin to jumping off the proverbial cliff. It took two weeks before I prepared my first canvas and put brush to paper. And what transpired next surprised me.
When I was painting, time was suspended. I allowed my hand to traverse the canvas as it become more than a picture to be framed but an outlet for feelings I had buried. I hung the canvasses on my wall to serve as a reminder that I was perfectly imperfect. The initial paintings were comprised of bold brush strokes, heavily textured and dark tints. I had no preconceived notion of what the painting should look like and allowed my heart to show me the way. Grief and despair were evident as I poured my deepest emotions onto canvas.
As time passed, I noticed my palette had become far lighter and exuded shades of pinks, purple, gold and blues representing a lightness of being. I became hopeful and wondered if there were others using art as a means to cope. I learned that the answer is a resounding yes. Art therapy is defined as “a medium that encourages people to express and understand emotions through artistic expression.” It has been shown to reduce stress, alleviate pain and serve as a conduit to self-discovery and emotional growth. Traditional art therapy involves visual media such as painting and sculpting and is growing in scope to include music, film dance and writing.
As I embrace painting and journaling now, there is hope. Life is full of unexpected events including illness; we can’t understand the whys. There are still days where the tears roll unabashedly down my cheeks as I am overcome with sorrow. But I have something to look forward to and feel I’m making a difference. In the words of Henry Ward Beeher, “Every artist dips his brush into his own soul, and paints his nature into the pictures.”
Pamela Schepis retired after 25 years of working as a registered dietitian and diabetic educator. An advocate for the mind-body connection, she is writing about her experiences in hopes of helping others find joy and hope when chronically ill. She continues to paint, and as a former musician, has begun playing the piano. Her children and husband of 27 years are her greatest passion.
Photo by Derek Gavey