Warren Johnson's doctors keep telling him he's dying. They've been telling him that for 10 years. Degenerative, progressive, incurable is how they characterized the rare connective-tissue disease that afflicts him. But Johnson has other ideas.
Johnson, 59, professor of health education and physical education at the University of Maryland, always seems to have other ideas. An innovator in the sex education field, he also has delved into subjects as varied as sports psychology and hypnosis. He has written countless scholarly articles, published numerous books and has been honored often by his colleagues in academia.
So it comes as no real surprise that Johnson has his own ideas about facing chronic illness. His main idea -- which is the guiding philosophy of his life -- is that "life should be fun or it's not worth living."
"Into every life a little s--- must fall," says Johnson. The key to enjoying yourself is learning not to "catastrophize" these problems, he adds.
When it comes to health, he says, the major responsibility should be shifted from doctors and placed "squarely on ourselves."
Dr. Bruce Zinsmeister, a cardiologist who is one of a trio of physicians who treated Johnson during a recent hospitalization, said, "There's no question that his attitude has been important [to] his survival. It's the people who actively participate in their own rehabilitation, and don't just depend on the medicine they receive, who improve."
Zinsmeister said Johnson's self-treatment "might have prolonged his existence. Whether it did in fact, I can't tell you." The physician added, however, that had Johnson not been "such an aggressive, positive fellow, he might have succumbed" to an infection or other complication of his illness.
Johnson, faced 10 years ago with a diagnosis of diffuse scleroderma, one of the worst diseases known to modern medicine, looked at his life and saw three choices. He could "collapse helplessly" into the arms of his doctors, or he could use his knowledge of the human body to try to make the best of a very bad situation.
Suicide was the third option, one that Johnson now thinks was "an almost inevitable consideration."
"I happen to be of the belief that suicide is one of our basic rights," he says.
The scleroderma, which means hard skin, had transformed an athletic, middle-aged man -- a former Marine fighter pilot and AAU wrestling champ who still ran and swam and coached wrestling -- into a weak, debilitated person. "I was physiologically in my 80s," Johnson says.
Complicated later by several related conditions including skin cancer, the disease turned him into a living mummy. His skin became hard and wax-like, he lost weight and height, his hair fell out and his back began to hunch over. His esophagus was also damaged. With joints that were extremely painful and skin that was sore to the touch, even simple tasks like shaving, dressing and brushing his teeth became impossible.
Johnson weighed his options, ruled out suicide and chose life -- but life on his terms.
Despite the pain and his doctors' gloomy predictions, Johnson thought he might still be able to squeeze some fun out of his life. He had a loving family, his wife Julie, son Doug, now 33, and daughter Tracy, now 12. He also had his work, including running the clinic for developmentally disabled children, which he established at the university in 1957.
He and Julie devised their own treatment. She massaged his skin frequently with oil for more than a year, and this finally gave him enough flexibility to begin performing active exercises he designed for himself, to stretch the connective tissues. He would literally tear himself apart for three to five hours each day, knowing the disease would constrict the tissues again by the next morning. Slowly, however, he began to regain flexibility and coordination.
The experts were dumbfounded when Johnson's own remedies worked better than those they recommended.
For instance, when the disease threatened to shut Johnson's mouth permanently, dentists warned him that his teeth would have to be removed because they would soon rot from lack of brushing and chewing, and dental work would be impossible.
Instead, Johnson devised a method of stretching his mouth with a stack of tongue depressors. Today he can eat, speak and drink -- three of life's "fun" activities he felt were worth trying to save.
Long before he became ill, Johnson had discovered what he calls the "growthful, health-promoting qualities of fun." It has always been the "underlying force" in his Saturday morning clinic, where children with problems ranging from mental retardation to dwarfism to emotional disorders work with college student volunteers on a one-on-one basis.The sessions evoke a madhouse, with children jumping on trampolines, hiding under parachutes and riding bikes down hallways. But it is a well-planned and successful method of helping them improve their physical skills and gain self-confidence.
"Everyone would like to enjoy being sick, but fear and panic make that very difficult," Johnson said. If people could learn to think differently about illness, he says, they would be a lot happier.
That is why, on the nights when his own illness kept him from sleeping, Johnson wrote a book and titled it, "So Desperate The Fight: A Creative Approach to Chronic Illness." Due to be published in the next few months, it describes Johnson's fight with scleroderma and his self-prescribed treatment. The book's overall message, wrote Johnson, is to show "how to make the best of a bad situation." He says in the book that it does no good to worry about illness because that "requires us to suffer over what might happen," when "reality can be bad enough. . . ."
Johnson's book makes a plea for people to learn more about how their bodies work so they can "deal with serious illness by taking upon [them]selves a large portion of the responsibilities for coping with it."
According to Johnson, an important area that doctors tend to ignore -- and one that offers a primary source of fun and pleasure -- is sex. Illness "can play hell with sexual identity or sexuality," he wrote, yet in his own case his doctors would not even mention the topic.
He felt so strongly about the subject that he wrote an article entitled "Sex and Sexuality in Serious Illness," which appeared in the British Journal of Sexual Medicine in June, 1978.
Johnson readily admits that his approach to life and to illness may be difficult for many persons to adopt. "I don't want to sound arrogant about the ease with which an individual can do this," he said. "If I hadn't had the support of Julie and Tracy and Doug, things would have been more difficult. But the fact remains that you have to use what's available."
"I learned over the years in a deep way that I wasn't going to live forever and that the task is not to do that, but to have some kind of quality of life in the time you have," he added.
"I've been in the health field many years and I'm well aware that one of the most dangerous things you can do is to get the notion that fate is supposed to take care of you. I am heir to what the other bearers of this flesh are heir to.
"I knew no one was picking on me, I just happened to be the unlucky one to get this goddamn disease."
Johnson's attitude was severely tested during the past year, when the scleroderma began attacking his internal organs. The disease's new phase reached a crisis in September when Johnson was hospitalized with kidney, heart and lung failure.
"The first doctor said, 'He's going to die and there's nothing you can do about it,'" recalled Julie Johnson. But once again, Johnson had other ideas.
Julie and Doug kept a 24-hour watch through Johnson's seven days under intensive care. He was hospitalized a total of 2 1/2 weeks.
Although Johnson said the hospital care was "generally excellent," his family did catch some mistakes. For example, there was the time a nurse almost handed him someone else's meal, containing salt, when he was on a salt-free diet. "That would have killed me right there," said Johnson.
But the "fundamental mistake," he said, "was that the first doctor had written me off." Johnson said the doctor did not treat him properly for the lung, kidney and heart problems because "the word scleroderma paralyzed his medical intelligence."
Determined to live and believing he had a fighting chance, Johnson demanded a new doctor. He got a team -- cardiologist Zinsmeister and Drs. Herbert Baraf, a rheumatologist, and Barry Hecht, a kidney specialist -- who treated "the obvious symptoms of their specialties." He improved and was released a month earlier than expected.
During his hospitalization, Johnson learned that an experimental drug called Captropril, used for lowering blood pressure, had also helped some scleroderma patients. He is now on the drug -- but doctors won't be able to evaluate its effects on his condition for a least a year, he said.
Writing in the foreword to Johnson's forthcoming book, William Bottomly, head of oral diagnosis at Georgetown University Hospital Dental Clinic, called Johnson a man "who was eager to know the truth about his situation . . . so that he could organize a comprehensive treatment plan for himself. . . . He was a patient who met reality therapy head on."
In the medical world, said Bottomly, who worked with Johnson for seven years in a research program on oral management of scleroderma, Johnson "encountered an admixture of attitudes which included avoidance of vital issues, a reluctance to admit ignorance of productive, therapeutic modalities and smug patient patronization. Seldom was he offered the opportunity to attack the effects of the disease but rather there was tacit encouragement to avoid pain-provoking actions, thereby catering to and promoting the crippling effects associated with collagen vascular impairments."
Before his last episode with scleroderma, Johnson was still teaching, writing and running his clinic. "It was the difference between sitting home and being miserable and perhaps being just as miserable doing things I've always enjoyed doing," he said.
But the last onslaught left him too weak to return to his work.
The prognosis is still not good, but Johnson's doctors say his condition is now "stable." His lung function is better and his heart is steady, but his kidney's are functioning at only 12 percent normal level, he is told.
Looking to the future, Johnson said he'd eventually like to resume teaching "with as light a load as possible."
In the meantime, he says, "I'll just take it day by day."