The Power of a Personal Story – Part 2

By Craig Maupin at www.cfidsreport.com

In 1982, Minnesota Twins rookie Jim Eisenreich stood in left field trying to block out the taunts of the Fenway Park faithful, “Shake, shake, shake,” they spitefully jeered from the stands. The taunts were eerily similar to the cruel words that Eisenreich had heard many times before-- from classmates, teachers and even coaches. But this time, it was different. This time, the taunts raining down on him from Fenway Park’s storied outfield were in full view of the public eye. A camera briefly caught the outfielder fighting back tears and eventually struggling to return to the dugout at mid-inning.

That spring evening at Fenway, Jim Eisenreich couldn’t have known that his struggles where going to be transformed into a beacon of hope for many who had long suffered with a misunderstood illness. In the years to come, his story would change the views of many in both the public and medical communities toward Tourettes Syndrome.

Jim Eisenreich always knew he was different. At the age of six, he developed tics and jerks and couldn’t stop blinking his eyes. As a youngster growing up in Minnesota, children teased him, teachers demanded that he stop his uncontrolled movements, and even his junior high coach ridiculed him. He didn’t think of what he had as an illness. According to the outside world, he was just a little crazy. He spent a lot of time alone and with his family trying to shut out the misunderstandings of the world around him.

Everyone understands the language of baseball

There was one thing at which Jim was adept, and that was baseball. He was always first to be chosen for neighborhood pickup games. After excelling at the sport in high school and college and then being drafted by the Twins, he quickly ascended to the major leagues in the early 1980’s. Early in his rookie season, Eisenreich had to come off the field three nights in a row due to uncontrolled muscular contractions. The fans, like so many in his life, were unforgiving. In 1984, no longer able to continue playing baseball, Eisenreich had to walk away from the game he loved. Many in the media speculated that his early departure was simply a green rookie cracking under pressure. Magazine articles blared insensitive titles such as ”When Anxiety Come to Bat”, conveying a message that perhaps Jim’s problems lay primarily with his psychological makeup.

. It was at this time that he applied his efforts to a search to find out the source of his physical problems. He went to hospitals. He went to doctors and experts. He was told it was all in his head, and it was psychological, but he was confident that wasn’t the problem. He was prescribed hypnosis and sent to a psychiatrist. Finally, after being told many things and prescribed many treatments that were ineffective, a doctor gave him the then controversial diagnosis of Tourettes Syndrome.

In 1986, after receiving medication that helped him control the symptoms of Tourettes Syndrome, Jim was finally decided to attempt a return to baseball. After getting his swing back in the minors, he had an outstanding year with the Kansas City Royals in 1989, receiving the Royals Player of the Year Award the same year while hitting .293 and stealing 27 bases.

Going Public

In the coming years, Jim traveled the country with his various teams. Newspapers, television, and magazines told his story, and the coverage of his struggles with Tourettes began to personalize a long misunderstood disease. His story began changing minds about Tourette’s Syndrome, one skeptical heart at a time. Later, he would start the Jim Eisenreich Foundation, a foundation he formed in an effort to help children struggling with Tourettes.

Jim Eisenreich’s story is a perfect example of how a personal struggle with a controversial illness can help to tear down an stigma. When people saw Jim Eisenreich, they saw someone just like themselves. It became hard to see a crazy person when they saw Jim Eisenreich. He was credible, well liked, and the personal story of his battles with Tourettes did a lot to turn public skepticism into informed understanding.

Similarly, many with CFIDS are dealing with strong stigma and public skepticism attached to their illness. Everyday, many must deal with family members, friends, and associates who question the validity of CFS . Many people are skeptical that a simple activity such as going to see a movie could place someone in bed for days or weeks. Often, just as it had happened to Jim Eisenreich, when they can’t understand, they chalk it up to misperceptions, poor behavior patterns, or malingering.

I still remember the seeing the incident in Fenway park played out on my local news. The emotive picture of him tearfully coming in from the outfield is etched indelibly on my mind. Today, when I hear about Tourette's syndrome, that memory, that personal story resurfaces.

It is easy to get the feeling that it wasn't just fans who didn't understand Jim Eisenreich. The problem was far deeper, and it was perpetuated by many of those who should have been there to help those with Tourettes. It is easy to come to the conclusion much of what was happening in the stands that night was being fed by many doctors and psychiatrists that had dismissed Tourettes as a simplistic behavioral condition. Jim Eisenreich's perhaps reluctantly public struggle put a credible face on a controversial illness, and it put the widespread dogma that the illness was a simple behavioral issue on the defensive. Through his story, Tourettes wasn't just someone else's illness. It could have been any of us.

Jim’s story illustrates how powerful personal accounts could be in breaking the public misperceptions of CFIDS. For each story of CFIDS that is read or viewed by the public, hundreds of people can see a real person, paying a real price, for a authenticly disabling disease. In changing the stigma attached to many suffering from CFIDS, there can be no more potent weapon than a credible, personal story. In the case of Tourettes, that personal struggle in the outfield in Fenway park in 1982 allowed me, and many others, to know the personal cost of Tourettes!

Next week – Ryan White – The Media Savvy Defeat of Apathy toward AIDS in Middle America