|
April 1, 1999
Karen's Book Becomes a Beacon
by Kent Mollberg
All teachers dream about having a positive impact on a young person's life. Perhaps we became teachers because a teacher reached out and made a difference in our lives and created a special moment that we will always remember. If it were not for that teacher, we would not be who we are today. We would not see life through the eyes that we do.
Sometimes, though, our students become our teachers, and the best thing we can do is sit back and learn, digest everything they present us, and mentally record the time they are in our class. Such was my experience with Karen Welke, a small, quiet high school freshman. Karen taught me that incredible strength and courage can come in tiny packages. She was also a beacon of the light that showed me the incredible technological age we are now entering.
Karen was in my Artists and Authors class in the fall of 1992. In this class, I assigned students the task of writing, illustrating, and desktop publishing a book in just 18 weeks. At the end of the course, the students are given two beautiful hardbound books; the printing and binding costs are paid by a local foundation. One copy of each book is put on the shelves of the public library, and the second is sent home with each student.
Karen came in the first day, sat down, looked at me, and said in a soft and quiet voice, "I don't know what to write about."
I looked at her, pulled in my nerves, and said, "Karen, why don't you write about yourself."
"You really think people would want to read about me?"
"You have an incredible story to tell Karen. Why don't you just start putting your thoughts down on paper and see what comes out."
The next day Karen handed me the opening sentence of her book. It read: "From the minute I was born people knew I was different." I was hooked. I was no longer the teacher, I was about to become the student. What happened over the next three years provides as inspiring a story as I have ever heard in my teaching life.
An Incredible Story
Karen's book was titled Painful Road to Travel. It was an autobiography of her first 14 years. Karen was born with a congenital birth disorder known as Ellis-van Creveld Syndrome. She is very small.
At birth, it appeared as if every bone, muscle, and tendon in Karen's body was bent and twisted. She had six fingers on each hand. Surgery was the only way to correct these defects. At age 5, she traveled to a special hospital in Baltimore where surgeons removed the extra fingers. The next year she returned to the hospital where they began to straighten and strengthen her legs cutting them open from hip to ankle and rebuilding them from scratch. She was in rehabilitation in Baltimore for three long months. Her parents had to return to Minnesota and their jobs after the first month. This process of leg reconstruction repeated itself every summer until Karen showed up at the door of my classroom.
Only 1 in 45 million people suffers from Ellis-van Creveld Syndrome. That's only eight or nine victims in the entire United States. The disease is not only extremely rare, but also life-threatening. Karen has lived a life that we would not wish on our worst enemy. She has had countless surgeries. Fortunately, her life is slowly improving because of our nation's incredible medical technology. The story she wrote in the Artists and Authors course is not a self-pitying story, but a wonderful tale of hope and self-acceptance: "Here is who I am, and here is why I look the way I do."
Our First Experience with Karen's Book
The first time I read Karen's finished manuscript, my wife and I were driving from Detroit Lakes to Minneapolis for the weekend. This 200-mile drive takes four hours. Karen's manuscript was only 12 double-spaced pages. I began reading the story aloud to my wife just outside Detroit Lakes. Two hours later, when we reached Little Falls, I reached the final paragraph. My throat was dry and hoarse, and my eyes were tired from crying. I had read each paragraph aloud to my wife. "Can you believe this? Isn't this the most incredible story you have every heard?" Then I would read the paragraph again. Minutes passed quietly as we moved down the highway, both of us of deep in thought as we digested this horrific yet wonderful tale. Moments later, I moved on to the next paragraph, and the scene would repeat itself.
Karen finished her book 16 weeks later. It was published locally. Only four copies were originally made. One went home with Karen, one went to our local community library, and the final two went home with me and course co-teacher Mark Geihl. As far as we knew, Karen's story probably wouldn't ever be shared with anyone else.
Then in 1994, we received a grant that allowed us to create a Web page. We intended to create a page that would display student work from the Artists and Authors course. Mark and I spent time working on the page over the summer and were pleased with what we developed; among the many items on our Web page was Karen Welke's book. We never really thought that many Internet eyes would find their way to our page. Two more years slid by, and we did little work on our Web page and rarely visited it ourselves. Karen's book was only on four bookshelves and appeared lost in the vast wasteland of cyberspace.
Karen's Book Becomes a Beacon
Here is what makes Karen's story so incredible.
In the summer of 1996, I received an e-mail from a man in upstate New York named Joe Olesik. I had never met Joe before, but we soon became e-mail friends. His story still gives me goosebumps.
He and his wife were considering the adoption of a three-year-old boy, Igor, from an orphanage in Russia. They had never seen Igor but had been told that the boy had a crippling birth defect, but they knew little else. They were sent a videotape of Igor that showed a dark, desperate orphanage and a small, quiet, disfigured boy. He had six fingers on each hand. Joe and his wife took the video to New York University and showed it to a group of surgeons who specialized in treating genetic diseases. The surgeons watched the video and made conjectures as to what could be wrong with the youngster.
Only one, a woman, seemed to know. "I think he might have something called Ellis-van Creveld. The six fingers . . . lead me in that direction." None of the other surgeons had even heard of this defect, and the woman knew little more. Joe went home that night with little information, but at least he now had a name.
That night Joe sat at his computer, logged onto the Internet, opened a search engine, and typed in the name "Ellis-van Creveld." The Internet then had links to more than 200 million items. At the end of the search, though, only one thing appeared: a book titled Painful Road to Travel by a 14-year-old girl in Detroit Lakes, Minnesota.
Joe opened the book and read Karen's story. Immediately he knew that he had found the missing link. Igor was a victim of Ellis-van Creveld Syndrome. At the bottom of Karen's book was my e-mail address. He immediately sent an e-mail asking me to somehow make a connection between him, Igor, and Karen. They have since made that connection.
Igor now lives in upstate New York with a new name, Steven. He is having the same surgeries that Karen had when she was young. His summers are spent in Baltimore in the same hospital and with the same doctors. According to Joe, Steven will probably lead a long and productive life because of the medical help that he will receive in this country. It was help that Igor would never have found in a Russian orphanage.
Only one word can describe this story: incredible. This is the sort of impact that teachers can now dream about really happening. Better yet, this is the type of impact that young students can have on those around them.
E-mail: Kent Mollberg
|
