One Woman's Battle and the Family That Won
The City Magazine
When do you know that you're truly fortunate? Lee Stein and wife June are pretty sure they are, not only because they own a massive Rancho Santa Fe estate but because they have each other as well. Of course, several years ago they thought the same thing. Young, in love and phenomenally successful in their chosen careers, they considered themselves quite fortunate.
Then they got the news that June was stricken with a crippling, debilitating disease and the Stein's world was severely shaken.
It seems so far away when you sit in the Stein's capacious living room, but it had a tremendous impact on their lives and personal philosophy. Now ten years later, they looked back on their experience with City Magazine. Their tale would make a great teary-eyed movie if only it didn't end so happily...
Before they got the news, Lee and June Stein had good reason to believe they had everything. June, a native of Brooklyn, N.Y., and Philadelphia-born Lee had met each other during their junior year at Syracuse University where they were both majoring in accounting. Their friendship, mutual interests and mutual success at Syracuse blossomed into a love affair, and after their graduation and Lee's first year of law school at Villanova, the two were married.
Their initial careers at big-eight accounting firms on the east coast were followed by a move west where June, at only twenty-four years of age, had been hired as Tax Director for the $500 million PIE interstate trucking company. And from their San Francisco home, Lee commuted to Beverly Hills where he had founded a business management company catering to the stars. Although Lee now admits that the couple's stressful jobs "left little room for quality of relationship, quality of marriage," the couple was sure that they had it all. While Lee was floating venture capital deals, serving as owners' representative on the board of an airline and commuting between San Francisco and LA, June, in addition to her duties at PIE, was President of the taxation committee of the American Trucking Association. "There we were," Lee recalls "focused on career, career, career but confident we were overcoming the hurdles of commuting couples."
While they were confident that they could surmount the obstacles presented by their hectic schedules and inter-city relationship they could not have imagined what obstacle was about to be thrown in front of them. It came in the form of lower back pain, the sort of thing everyone gets from time to time. But for June it was decidedly more serious. And it only got worse. "It got to the point," June recalls "where I couldn't walk. I couldn't sleep at night because the very act of turning over would wake me." The sharp pains that woke her at night and inhibited her mobility continued to plague June, and finally relegated her to a wheelchair.
She and Lee began to consult orthopedic doctors, but to no avail. Bone scans and cat scans followed. No cancer was discovered but the pain and mystery persisted and the anxiety increased. A rheumatoiogist was finally consulted and the bad news was delivered: June had Ankylosing Spondylitis, a progressive disease of the joints of the spine. Usually afflicting men only, the disease, which results in the fusion of the small joints of the spine and the calcification of the spinal ligaments, threatened to freeze every spinal joint - from the head to the pelvis - in young June's body. Despite the gravity of the doctor's diagnosis, the couple actually felt some relief.
"Up until then," Lee remembers "no one had come up with an answer. We just weren't sure what life had in store for her. We hadn't even been sure that it wasn't just psychosomatic," But now that they knew what was wrong, the two set about tackling it like it was a particularly vexatious tax problem. "I started going to medical libraries and taking out every article I could find on the disease, "June says. "I wanted to understand the process and find out how serious it might get." She quickly learned that the fusion in her spine would cause her to assume whatever position she customarily found herself in, and that once the fusion had taken place, the results were irreversible. Forced to stoop by the intense pain, June realized to her horror that she might very well "freeze-up" in that position.
Doctors furthermore advised Lee and June that if they wanted children they would have to do it soon - before June's disease deteriorated to the point where child bearing would be impossible. Faced with the prognosis of increasing pain, frozen curvature of her spine and decreasing possibilities of child-bearing, June reacted bravely.
"Once I knew what it was, I believed that there just had to be something I could do to change the course of it," she says. "I just decided to direct my energies on that." But brought-up like husband Lee, in a traditional atmosphere - a world whose doctors were telling her to accept the inevitability of progressive debilitation - June cast about trying to find medical alternatives. In her search she dabbled in what she admits were "kooky California" health alternatives - gold therapy and the like. But she finally settled on yoga which, because it emphasized posture correction and muscle and ligament stretching, seemed a perfectly logical choice.
But it wasn't an easy one. "I believed that if I could keep my joints pulled and stretched, and do so harder than the ankylosing spondylitis was fusing them, maybe I wouldn't get any worse," she says. "But after every yoga class I felt worse than before. Although intuitively it felt right." So ignoring the physical pain, June stuck to the yoga regimen. Her intuition was correct,and it turned out that June's yoga-induced pain was good - working to pull apart the tissue that had become fused. She continued with the yoga for four years (supplementing it with structural integration treatment from friend Mark Caffall) and although the X-rays didn't immediately detect it, the process of the disease was being reversed.
Since in most cases of ankylosing spondylitis the disease may become arrested but never reversed, June Stein's turnaround was almost miraculous. In a letter from her doctor, Rodney Bluestone, written after a 1984 check-up, June read: "You have been left with no disability whatsoever and I would regard you to have an absolutely normal prognosis in terms of health care needs for the rest of your life..." According to the Steins, June's bout with ankylosing spondylitis, while touch-and-go for some time, came to represent not so much an obstacle for them as an incentive to reassess their priorities. "We decided that we couldn't be a two-city couple," Lee says. "So we relocated to Beverly Hills and June came in to practice with me."
Their client list grew, with the Stein's representing such big names as Matthew Broderick, Men at Work, Journey, Gene Hackman and Rod Stewart. "After June's diagnosis life got complicated and it forced us to reprioritize," Lee reveals. "The first thing that mattered was health, the second thing was family and the third priority was business. We wanted to find a balance." So after serious consideration the two ended up selling their business and moved to San Diego, stopping briefly in Katmandu to study meditation from a Tibetan Lama. Lee argues that some of the lessons he learned on the mountain tops of Tibet - and the sick room of his wife - form the basis of the couple's personal philosophy.
"Now, the important things in our lives are commitment, balance and quality of energy," he says. And it shows. The Stein's home in Rancho Santa Fe is a quiet, almost meditative place, where the incense-filled peaceful stillness is broken only occasionally by the harsh ring of a telephone. Lee straightens the part in son Skyler's hair and says of the phone, "I'll call back later." It's a change for both adult Steins who used to scramble routinely to quiet ringing phones. June continues to practice her yoga, even getting Lee, Serena and Skyler involved, and the young woman who was told she would gradually lose the ability to bend can amaze even jaded circus-goers with her amazing limberness and flexibility.
Future plans for the couple include starting an organic garden on their tree-covered property in an effort to extend their seriousness about personal health and well-being outward into the world. "There has to be an awareness about the environment we live in," says Lee. "You read about the toxic problems in the world and all the pollution ... We want to take responsibility. We're fortunate enough to be able to grow our own produce and we're doing it to be more aware of the quality of things that go into our own bodies." What June and Lee Stein learned from the trauma of her diagnosis and her thrilling conquest of the disease is that responsibility - to yourself, your family, your life and your world - is paramount.
Both Lee and June Stein now try to live that philosophy everyday. And though Lee remains committed to the business world and considers its challenges and opportunities a priority, he and June are fully involved in a number of charitable and public service/awareness groups. Their involvement with the American Cancer Society - an organization they first became part of as a result of the death of a close friend from the disease - is just one example of that and several days before we visited, the Stein's hosted a benefit for the organization at their home. And June's advice for men and women who find themselves in situations similar to her own underlines the centrality of that philosophy of responsibility to the Stein's way of seeing things. "People have to take responsibility for their own health. A lot of people live by, go by and generally believe everything that doctors tell them. But it's your body," she says "take care of it."
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