A Life Lived To The Fullest

July 31, 1994|By FLETCHER DOYLE

It was a day we knew would come, sooner not later -- the day my little sister died. The whole family knew the odds of survival. Doctors level with all patients with cystic fibrosis, a hereditary disease that slashes at the lungs until they are too scarred to work. It is a death sentence present at birth. There is almost no chance at clemency. The reward for good behavior is a little more time.

Leslie Doyle Bowen had more time than most. She was first diagnosed at the U.S. Public Health Hospital in Baltimore at the age of 12 and she lived beyond her 32nd birthday. Life expectancy at the time of her diagnosis was 17.

The first comprehensive report of CF as a separate disease wasn't made until 1938, only 22 years be fore Leslie was born. Therefore, many doctors in the 1960s were unfamiliar with the particulars of the illness, and Leslie's childhood symptoms were so mild they might not have seen them had they known what to look for.

The symptom that tipped off the public health doctor was pneumonia, a chronic problem for CF sufferers. Our mother said that, at the time, she was relieved to be given a reason for Leslie's difficulties, ignorant of the disease's consequences. After all, her daughter didn't appear to be in danger.

However, there were many clues that she was. There were the hacking cough, the expanded rib cage on an otherwise skinny frame (a sign of chronic breathing difficulties), and the digestive problems (cystic fibrosis also hinders the work of the pancreas). Doctors couldn't piece together these puzzling symptoms, and prescribed only a change in diet to foods that didn't contain wheat. This change -- to bologna roll-ups (no bread) and rice cakes -- set her apart from the peanut butter-and-jelly crowd and brought ridicule in the school cafeteria.

Her toilet troubles, brought on by the digestive problems, were pointed out to her in the not-so-gentle way children have of elevating themselves in the schoolyard pecking order. The effect was to make her maddeningly defensive and too embarrassed to use a public restroom for the rest of her life.

Dr. Beryl Rosenstein, director of the Cystic Fibrosis Center at the Johns Hopkins Hospital, confirmed the diagnosis. But even when he spelled out the grim scenario she faced, there was no shattering of a preteen's belief in her own indestructibility. Leslie was going to beat this disease for which there is no cure, or at least live a full and normal life.

Doctors helped her in her pursuit, giving her pills to replace digestive enzymes her body would not produce. She took them by the handful with each meal, leaning her head back like a hungry baby robin and swallowing as many as a dozen at a time. These allowed her finally to take sandwiches in her lunch box. Potato chips were devoured by the bag, her need for salt providing a handy excuse for overindulging. (CF sufferers secrete two to five times more salt in their sweat than those not afflicted.)

Leslie gave herself a mandate to live, and cited it to waive off remonstrations that she should take care of herself. Rather than become melancholy over her outrageous fortune, she honed a sense of humor that would make her a delight to be around. She left no joke untold, no dance undanced, no curfew unmissed. That made her not atypical of other teens of the 1970s, except that others' indiscretions might not tear the pages off the back of a thin calendar.

She had been taught to perform chest therapy -- pounding on her chest and back to loosen the thick, sticky mucous that clogs the CF patient's lungs and hinders breathing -- but in those years she rarely felt badly enough to do it.

Leslie played her way through Towson High School, even spending two years on the badminton team -- proving our dad, a collegiate tennis player, passed something on to her besides the gene for CF. (He died of cancer in 1966, leaving our mother alone to raise two boys and two girls between the ages of 5 and 15.

This was before Leslie's illness was identified.) Her athletics were something others similarly afflicted could only dream about.

She once told me she didn't set any long-term goals because she didn't expect to live long enough to see them realized. The gravity of her situation was impressed upon her during nearly every visit to the Johns Hopkins Hospital, as the number of her peers decreased. But still she carried on like a person with a future.

She enrolled at Villa Julie College, a two-year school in Stevenson, studying to become a medical secretary. She also joined the disco craze, catching Saturday Night Fever several evenings a week.

"She was my most disobedient child," our mother says affectionately. "She was just a fun lover."

"She liked to party and used to tell us about it, show us pictures of her trips to the Caribbean," Dr. Rosenstein says. "Every experience was a wonder to her. She didn't let things keep her down. She wanted to do everything."

Baltimore Sun Articles
|
|
|
Please note the green-lined linked article text has been applied commercially without any involvement from our newsroom editors, reporters or any other editorial staff.