This past Sunday, on a blue-sky spring day, my husband joined more than 300 people whose lives or loved ones have been affected by scleroderma, on a three mile walk to raise awareness and funds for a cure. Sponsored by the New England chapter of the Scleroderma Foundation, this was one of hundreds of walks around the country that are organized each year in communities large and small, providing an important revenue stream for medical research grants.
There is, as yet, no known cure for scleroderma, and both the Scleroderma Foundation here in Massachusetts and the Scleroderma Research Foundation in California depend on armies of volunteers nationwide, through events like awareness walks, to help garner support for their fundraising efforts. Each foundation distributes about a million dollars annually for promising research—grants needed more than ever during this time of sequesters and congressional gridlock over federal spending.
Al is much better than I am at this kind of event. I’m always uncomfortable asking for donations. My forte is raising awareness through words. Al, however, is a great fundraiser. Last week he sent out an email to family and friends asking for sponsors, and by Sunday he had collected more than $200. A record number of participants joined the walk, and I was proud of him for being one of them.
While Al was striding for a cure Sunday afternoon, I was trekking through the crowded corridors of Penn Station, on my way to a two-day business meeting. We wrapped up early on Monday afternoon, giving me just enough time for my own private scleroderma pilgrimage. I set out into the crisp spring sunshine, pulling my rolling suitcase down Manhattan sidewalks, through subway stations, across 5th Avenue, along 53rd Street to the Museum of Modern Art, to finally see, in person, the works of Paul Klee.
A member of the German Expressionist Blaue Reiter Group a century ago, a distinguished faculty member of the Bauhaus school of art in the 1920’s, Klee created a lyrical mix of abstract forms and hieroglyphics, a “visual vocabulary” inspired by music, nature and poetry in his intricate drawings and paintings. Luminous, whimsical, haunting, his art is a journey into dreamscapes. He once described the act of drawing as “a line going for a walk.” But when the Nazis rose to power, they targeted Klee’s work as degenerate art, and in 1935, he was exiled from Germany to his native Switzerland.
Isolated from his intellectual circle of artists, who included his close friend Wassily Kandinsky, alone with only his wife for emotional support, stonewalled in his efforts to regain his Swiss citizenship, Klee became ill. A strange rash and long bout with pneumonia left him severely weakened. Other symptoms eventually surfaced. The skin on his face began to tighten. He developed difficulties swallowing and digesting. In a meticulously researched account, Paul Klee and His Illness, physician-author Hans Suter deconstructs Klee’s health struggles and concludes that the artist was suffering from diffuse systemic sclerosis.
Miraculously, Klee’s hands were not affected by the disease, and he was determined to continue drawing and painting. Despite fatigue, painfully tightened skin and ongoing problems with his digestion, lungs and heart, he created thousands of works in the five years he battled scleroderma and suffered through the treatments of the day—including, according to Suter, an infusion of olive oil and turpentine, believed to be a beneficial stimulant that would shock the immune system back to normalcy.
Nothing worked. Klee was focused and courageous in the face of his disease, but he also eventually came to understand and accept that he was dying. His later works are full of dark lines, wistful angels, pain and loneliness, infused with irony and deep, rich color. He died in 1940, at 50 years old, a few days before the local canton government finally took up his citizenship application.
Medical research has come a long way since Paul Klee’s battle with scleroderma. No one believes in olive oil and turpentine infusions anymore, thank goodness. But we still have many steps to walk before a cure is found. As I stood before Klee’s subtly complex paintings, marveling at his detail and textures and many-hued washes, I wondered what more beauty he might have created, had he had the benefit of today’s medicine. I hoped to be as courageous in my own art. And I thought how wonderful it would have been to have walked together.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.
