By Mark Stubis
(Originally published in HealthNewsDigest 12/25/10)
We can’t quite remember how it first started.
Maybe it was the momentary sense of weakness that swept over him after releasing the jack during his weekly tournament of English lawn bowling, a gentleman’s game dating back 900 years and still played by a small contingent of aging enthusiasts in Central Park. Or the slight wobble in his legs while getting down a big yellow mixing bowl so my mother could make a cake for his 80th birthday. Or the almost imperceptible flutter of the heart that once helped him traverse icy mountain passes and pull people from bombed-out buildings during World War II.
All we really knew was that my father, whose mastery of fine motor movement had made him one of the most creative and successful graphic artists of the 20th Century, was having trouble controlling his muscles.
Talivaldis Stubis worked on hundreds of the best-known and most-loved Broadway and movie poster campaigns of all time, including “Funny Girl,” “Rhinoceros,” “The Most Happy Fella,” “Anyone Can Whistle,” “Night of the Iguana,” “A Clockwork Orange,” “Deliverance,” “The Sting,” “The Exorcist,” “Airplane!” “Reds,” “Star Trek,” and “Raiders of the Lost Ark.” His talents also ran to fine arts, photography, and literature. One of the dozens of popular children’s books he illustrated, “A Pocketful of Seasons,” was named one of the New York Times’ “100 Best Books of the Year.”
Even after he retired (something artists never really manage to do), he kept working, turning out clever Christmas cards, breathtakingly apt political cartoons, and lovely, magical, whimsical paintings of his grandchildren. He lived comfortably in a big house with his wife, author and dancer Patricia Thomas Stubis, reading history, playing word games, and enjoying life. It seemed he had perfected not just his art, but the art of living.
But silently, at some unseen level, his own body had become imperfect. After 80 years of near-flawless operation, a tiny error in the protein-making apparatus of his cells began flooding his muscles with useless bits and pieces of biological junk – a process akin to throwing sand into the engine of finely machined sports car. And with similar results.
At first we thought his episodes might just be the symptoms of age, although many members of our family, strong stock from the cold northern lands of Latvia, lived to 100 or more. But as the weeks and months went by he got progressively weaker, thinner, and ever more frail.
My father was disappearing before our eyes.
It took doctors almost two years to figure out what was wrong. At first, they thought it was the “rare but serious side effect” you hear about in ads for cholesterol-lowering drugs. They thought it might be polymyocitis, an inflammatory myopathy. They thought it might be his heart, his kidneys, or his liver, and went down every checklist imaginable. Finally, after many, many tests, a specialist at Sloan-Kettering came up with the correct diagnosis: AL amyloidosis.
Amyloidosis is one of those rare conditions that most people have never heard of, so unusual that the only place you encounter it is on the odd episode of “House, M.D.” Fewer than 3,000 people in the United States get it each year. And though the overall numbers are low the disease seems to favor the famous and accomplished. Just a few of the people affected by amyloidosis are former Pennsylvania Governor Robert Casey, Pulitzer Prize winner Ed Guthman, author Robert Jordan, and Australian Prime Minister David Lange.
Amyloidosis is a group of diseases in which one or more organ systems in the body accumulate deposits of abnormal proteins. There are three major types of amyloidosis: primary amyloidosis, a plasma cell disorder that originates in the bone marrow; secondary amyloidosis, which is caused by a chronic infection or inflammatory disease such as rheumatoid arthritis, familial Mediterranean fever, osteomyelitis, or granulomatous ileitis; and familial amyloidosis, a rare hereditary form of the disease.
Amyloidosis is especially dangerous because it is so often misdiagnosed or overlooked, leading to critical delays in treatment. By the time my father sought help from Dr. Raymond Comenzo, an amyloidosis specialist now working at Tufts Medical Center in Boston, the condition was already advanced.
“Early and correct diagnosis is an important aspect of effective therapy,” says Dr. Comenzo. “Fortunately for patients with all types of amyloidosis, treatments are improving and patients can live longer if diagnosed promptly.”
To cheat death, scientists are delving more and more into the unseen world of our cells – to the molecular, even atomic, levels. One promising drug, bortezomib, is a type of medicine called a proteasome inhibitor, which can stop or slow some of the cellular processes that in a disease state have run amok. Similar advances are being made in cancer research. Scientists at the Salk Institute for Biological Studies and the Institute for Advanced Study recently found that the tumor suppressor p53, long thought of as the “Guardian of the Genome,” may do more than thwart cancer-causing mutations. It may also prevent established cancer cells from sliding toward a more aggressive, stem-like state.
These kinds of discoveries are exciting and give hope to patients suffering from many different ailments. In some ways, today’s doctors and researchers are working the way artists have worked from time immemorial: drawing on an inner, often unseen world, using intuition, skill and special tools to create a more perfect, balanced, and beautiful outcome. As in art, medical breakthroughs seem to be coming about as much a result of what we can see as what we can imagine.
Perhaps a life of art and the healing arts of life are not as far apart as they might appear. I know my father would be thrilled by the idea.
Mark Stubis is a national healthcare, nonprofit, and media executive with more than 20 years of experience working with leading medical and education charities, Fortune 500 companies, and global news organizations. An award-winning creator of public-issue awareness and prevention campaigns, Stubis’ work has been carried by more than 100,000 newspapers, TV and radio stations, and websites in 100 countries around the world. In his free time, the Juilliard-trained musician plays the piano and chess at his castle in the New York City area. You can contact him at firstname.lastname@example.org .