Rochester Review, University of Rochester, Rochester, New
As a full-time volunteer for the National Multiple Sclerosis Society, Shantz edits a newsletter providing a forum for 14,000 MS self-help groups across the country.
Then came the neurologist, the tests, and, quickly, the diagnosis. Shantz had multiple sclerosis (MS). There were no early signs of the impending disease. There was no MS in his family. So unfamiliar with the condition was Shantz, in fact, that he remembers having to look it up in a medical reference book.
The description was sobering. Physiologically, MS involves lesions on the brain -- patches of hardened tissue that ultimately impair vision, sensation, and the use of one's limbs. The disease, while varying in its particulars with every patient, comes in two basic varieties. One is called "relapsing-remitting" MS, a cyclical condition involving periods of acute symptoms followed by periods of remission. Shantz was diagnosed with the other kind, the so-called "chronic-progressive" type, which means that the condition would slowly, but steadily, worsen over the course of his life.
As it has. Shantz was diagnosed in 1979. Well advanced in a career as a New York City bond dealer, he didn't tell anyone at work for a couple of years because the symptoms were all but invisible. Walking, however, eventually became more difficult; he then used a cane for a few years. In 1987, he moved to a motorized scooter.
It was not long after this that Shantz had to retire. He was already living in the city during the work week because of the difficulty, if not outright danger, involved in commuting back and forth from his suburban New Jersey home. But the scooter soon rendered his job impossible. His building was not wheelchair accessible, and actual traveling with "a machine," as he calls it, was a logistical, physical, and emotional challenge.
The disorder's traumatic impact on Shantz's routine didn't end with putting the finish to his professional life. He would also find himself having to separate from his wife and family. "It's better for both sides, often, to separate," he says -- the interpersonal chemistry in a couple in which one spouse is healthy and the other ill with MS can be, as he puts it, like "dynamite." In other words, explosive.
"There's enough to put up with without having to feel guilty about what your illness may be doing to your spouse," he says. While he points to the separation from his family and from his old community as the hardest aspect of his condition, he is philosophical about why it had to happen, having to do with deep-felt, exceedingly "complicated feelings of responsibility and guilt."
As an outside observer looking over the facts of the last decade and a half of John Shantz's life, you might easily put on a solemn, sympathetic face and shake your head at the grim reality. But Shantz himself is anything but grim. Rather than be defeated by circumstances, he goes on, with enthusiasm. He lives his life; he copes.
"My first neurologist said to me, 'Just keep on doing what you've always been doing. And then when you can't, do something else. Don't worry about what you can't do -- just be creative, find ways around it.' "
This advice at least indirectly led to Shantz's second "career." Unable to work any longer in the securities field, he looked around for something else to do with his days. Volunteering full time at the New York City chapter of the National Multiple Sclerosis Society seemed a logical step.
One of his first assigned tasks was to survey the accessibility of New York City swimming pools to help the chapter prepare its summer exercise program. Shantz had more than a little trouble nailing down the information he needed. Which gave him an idea. Thousands of other New Yorkers probably needed the same information he had just gathered, never mind information on the accessibility of other sites such as shopping areas, theaters, and churches. Shantz took it upon himself to extend his survey to these places and ended up putting the information in a newsletter he began for the local chapter.
The publication was well received -- so well, in fact, that chapters in other cities began asking for copies of what became, as he calls it, "a catch-all bank of basic information" for people coping with MS in their daily lives. Soon, the National Multiple Sclerosis Society, also headquartered in New York, asked Shantz if he could start a newsletter aimed at providing a forum for the 1,400 MS self-help groups that exist around the country. (Each of the 100 chapters of the national society has anywhere from two to a couple of dozen self-help groups associated with it.) The newsletter, which he has been editing ever since, is called COPE.
Now, every day, Shantz himself is in a position to help other MS patients to cope. He talks to people all over the country and the world, sharing information, exchanging experiences, listening, empathizing.
|Networking around the world: On a 1995 visit to Russia, John Shantz '55 connects with students at the Moscow School for the Deaf.|
"There's an enormous amount of networking that goes on," he notes, and points with some amazement to a personal network of correspondents that includes people with MS who live in places like Israel, Germany, and Scotland. There are now 34 countries with national MS societies -- each, notes Shantz, with its "own special interests and concerns." He spent time in the fall of 1995 in Moscow, on a specially arranged tour during which he got an up-close look at how Russians with MS are treated and at the obstacles they face.
The networking he speaks of -- both long distance and local, in the self-help group setting -- is so important, he says, because "there really isn't that much that the medical profession can do on a daily basis for people with MS."
Certainly, there are continual developments on the research front and an ever-increasing number of new therapies emerging that offer promise. Betaseron, for instance, introduced in 1993, has proven to be the first drug that can alter the underlying course of relapsing-remitting MS. Shantz is one of many people with the other kind of MS -- the chronic-progressive type -- who take Betaseron anyway. He believes it has a positive impact on his strain of the disease as well. "I feel it has been very effective in reducing the fatigue that is a major symptom of MS," he says.
And there are other treatments on the horizon. In 1996 alone, more than 18 controlled clinical trials of new therapies were under way, with more than 70 substances in various stages of testing around the world.
But because, still, there is nothing like a "cure" for MS, the greatest element in coping is an interpersonal one -- thus the popularity of MS self-help groups, which offer a focused forum for people to share, to vent, to find a community of sympathetic ears willing not only to help but just to listen to the frustrations that inevitably arise in the process of trying to cope. "There's a great therapy to simply talking about it, to hearing yourself saying these things aloud," notes Shantz.
He remembers feeling at first "very self-conscious" about having MS and trying to talk about it. What got him over that particular hump, he says, was his increasing need to explain his more and more apparent physical difficulties -- letting people know, as he says, "why I was walking like I had had too much to drink."
One of the most important concepts to keep in mind about coping, he says, is that each case, while falling generally into one of the two categories of the disease, is still, at its heart, a completely individual condition. "MS is a many-splendored thing," he says with a typical dose of forthright humor. "Everybody, really, has their own variety."
Which means that there's a good chance that whatever a person with MS has heard or been told about the disease will have "absolutely no relevance" to his or her individual situation.
Coping, however, begins as much without as within. "So much depends upon the environment in which you find yourself," says Shantz. You will discover that some friends are more supportive than others, some more helpful than others.
That said, the inside part is, in the long run, the most important. "Some people just sit around bitching," he says. He's seen it in self-help groups. He's heard it on the phone when people call the office. He is saddened by this approach, since he knows how much a positive attitude can contribute to a more enjoyable life.
"If you're going to sit around worrying about your symptoms, it's only going to get worse," he asserts. "You've got to figure out how to get on the other side of it. It's amazing how some people want to revel in their difficulties, maybe even use them as a means to get something from someone else."
Not that Shantz doesn't keenly understand where such an attitude can come from. The frustrations attendant on the condition can be both major and minor, and in any case are continual. "Almost every day you find there's something you're making do without, or something you can no longer do as well as you used to."
A person with MS, therefore is "constantly giving up things," he says. "First sports, then things that require some dexterity" -- Shantz now, for instance, can no longer play the piano -- "then maybe some of your family life, then, sometimes, giving up seeing your spouse on a regular basis.
"Somehow you have to find something that will replace all that," he says.
Shantz has found his replacement in his volunteer work at the National MS Society. He notes that many active, positive people with MS turn to volunteering in a variety of arenas -- such as someone he knows who ended up receiving one of the government's "1,000 points of light" awards for helping to train young people to be waiters and waitresses.
The big message Shantz delivers over and over is that despite how overwhelming things can seem, there's always a step you can take to help yourself, to move your life along, to cope. "There's help everywhere," he declares.
He himself feels lucky rather than unlucky in that he lived a fully capable life until his late 40s. There are people who are diagnosed at a much younger age than he was, people who are stricken at the outset of their adult lives just as they're starting careers and getting married. He was spared that fate and understands his relative fortune in that regard.
Shantz, actually, is so philosophical about his condition that he muses out loud whether, even if he were still completely healthy, he would be up to his old job. "I think the technology of the securities business is so quickly outpacing my abilities to understand or handle it that it's kind of terrific I have another channel to pursue -- one that's very interesting, challenging, and rewarding.
"You know, if you get the right disease," says Shantz, with his characteristic shot of forthright humor, "you can really make a career of it."
Jeremy Schlosberg writes about alumni for Rochester Review.
Copyright 1996, University of Rochester