Story originally printed in the La Crosse Tribune or online at www.lacrossetribune.com
Published - Tuesday, April 17, 2007
Karl's story - a health-care journey
 Onalaska Luther senior Caroline Schwedler, 18, won the "When an Apple a Day isn't Enough" essay contest by writing about her brother Karl, 16, and the challenges he faces dealing with tourette syndrome and obsessive compulsive disorder. PETER THOMSON photo |
"I hate hospitals. They are so cold. I think it is the cleanliness which makes them so. The white walls and cold metal doors with the glass windows only add to this atmosphere. I hate hospitals, but for more than temperature. I hate them because they have what I need, but I can’t get it."
This is how Caroline Schwedler of La Crosse began an essay about her 16-year-old brother, Karl, who has Tourette syndrome and obsessive compulsive disorder. Caroline, an 18-year-old Onalaska Luther High School senior, decided to write in the first person from her brother’s point of view.
Caroline was one of three Wisconsin award winners in a national essay contest sponsored by the Campaign for Children’s Health Care, an initiative led by a diverse group of national organizations to raise public awareness about the plight of the more than 9 million children who have no health-care coverage.
Titled “When an Apple a Day Isn’t Enough,” the contest asked young entrants to give thought — and then give voice — to all the reasons they believe that ready access to health care can affect their lives and the lives of those around them. More than 4,500 children and young adults ages 9 through 18 entered the contest.
Caroline was one of two to receive an honorable mention award in Wisconsin.
She said her essay was a “cry for mental health parity” in Wisconsin. Caroline said the state does not require health insurance companies to provide coverage for adequate treatment of mental health conditions like they must for physical conditions.
Caroline said there are limitations on insurance coverage experienced first-hand by her family. She said her family has had to refinance their home to pay for her brother’s medical care.
So many illnesses are given a bad rap by limited contact or experience. Assumptions are often made by generalization. I have Tourette Syndrome and I have people ask me if it’s “the swearing disease” or “that shaky thing.” It takes all of my patience to explain what it is, and still I don’t think people get it.
I also have Obsessive Compulsive Disorder. People always view obsessions in such a casual way. When people say, “I’m so obsessed with this,” or “Why are you so obsessive about that?” it bugs me. Obsessions are not goals; they are real and tricky demons and something I can only dream of getting rid of.
I always hear about “miracle cures” and friends hear about them too. They ask me why I’m not trying them. I usually reply with something funny to drag conversation from the subject, but inside, the truth is bubbling in fury.
I can’t be cured because I can’t afford it. My family has very little money because I don’t have health insurance.
I’ve put up with these disorders for three years with no end in sight. My diagnosis came in a mild November. I was admitted to a hospital in our city, which cost nearly $1,000 a day. I stayed for nine days. When the diagnosis came and I was discharged, I thought everything would get better and it would all go away, including the cost and the bills. I couldn’t have been more wrong.
Once free of the dreaded hospital, I needed daily medication. My medications combined costs around $1,000 a month; one costs $800 all by itself. Because my illness is under the “mental illness” category, my state does not provide as much health care as it would for an organ other than my brain.
“I feel differently than other kids because of what my family has gone through,” Caroline said. “I had to grow up faster. The worst thing some kids face is losing a basketball game, but I’ve had to face losing a brother.”
I watch the strain in my parents’ faces get heavier and deeper as each month passes and each month’s bills come and drain their savings. My bills not only affect my parents, but also my brother and sister.
I know that if I didn’t have Tourette or obsessions, they would have a much easier life. I can’t imagine what they have given up because we needed money to pay off medical bills, my bills, my fault. I sometimes wonder if they hate me. The guilt weighs so heavily that sometimes I think it would be better if I was just gone. That triggers obsessions which try to convince me that all this is my fault, which in a sense it is.
Caroline plans to attend the University of Wisconsin-Eau Claire in the fall and major in communication disorders.
Karl is a sophomore at Onalaska Luther and has not been hospitalized for more than two years.
Terry Rindfleisch can be reached at (608) 791-8227 or trindfleisch@lacrossetribune.com.
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