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Summer 2003 

Readers’ Forum
Correspondence with the Chronicle editor
By Craig Maupin

It is spring of 2003, and Moorestown, N.J. , school superintendent Paul Kadri’s phone is buzzing. Coming across loud and clear are the voices of parents who believe their children did not receive a fair shake in their quest to be valedictorian at Moorestown High School . As the pressure mounted, Kadri would soon come to a decision: senior Blair Hornstine (Blair Hornstine Home Page), whose GPA was the highest in the class, had an easier road to valedictorian than her classmates. Kadri decided that Hornstine, who took some of her classes at home due to a disability that appears to be CFIDS, should share the honor with others whom he felt had traveled a tougher road.

The Harvard-bound Hornstine had other ideas. She made a decision of her own, one that brought the wrath of the small, upper-class community crashing down on her.

She wouldn’t share the title. She would sue the school to have her title reinstated — and sue for discrimination as well.  

In the weeks that followed, the normally tranquil Moorestown erupted. News-paper columns decried Hornstine’s action. Locals blasted her for selfishness. Harvard students and alumni circulated a petition to have her admission denied for fears that she would ethically compromise their school. Eggs were thrown at Hornstine’s house, obscenities spray-painted on the walls. Charges of plagiarism against Hornstine appeared in the local paper.

Perhaps the polite thing for Hornstine to do would have been to share her title. But while Hornstine may not have come across as charitable, pursuant speculation about the underlying cause(s) of the public indignation toward Hornstine was the true catalyst behind the story’s national appeal.  

An Oft-Unseen Perspective
Nothing about the furor surprised me. Unlike many of the folks in Moorestown and Harvard, I know CFIDS well. My career, education and personal goals have been indefinitely put on hold because of it.

It also didn’t surprise me that the CFIDS community failed to come to Blair’s defense. Many of us, myself included, cannot attend school in any form due to the physical limitations imposed on them. Stir into those particulars a lawsuit that was widely perceived as selfish, and this controversy understandably becomes something many with CFIDS would just as soon avoid.  

I think back to my own experiences with CFIDS. I remember the day I first got the “flu.” Like any successful, athletic teenager, I didn’t take it seriously. But within three months tests confirmed my stomach was unable to digest food. I lost 30 pounds. My grades slipped. One spring day of my senior year, I called my mother with tears in my eyes and said, “I cannot go on.”

I remember my father encouraging me; he said my dreams for my life would materialize. They never have. I remember a teacher informing me that if I did not show up in her class I would be flunked, despite a schedule that had been worked out with the assistance of my doctor, parents and school administrators. I remember the sadness I felt when I learned my illness’ name would be changed from chronic Epstein-Barr to the benignly broad term chronic fatigue syndrome.

While those who suffer from other chronic illnesses often receive an outpouring of community and family support, those with CFIDS sometimes receive an outpouring of scrutiny and disbelief. With a trivializing name headlining the illness, many form their impressions quickly — and even the most skillful media consultant could do little to shift them.  

A letter to the editor in the Moorestown paper asks: “How can Hornstine even consider herself part of the class when she doesn’t have to take physical education or deal with the everyday rigors of high school because of her chronic fatigue syndrome?”

A proud Harvard Law student adds: “Disability? We probably ALL have chronic fatigue back in good old Cambridge, MA . Welcome to the life of every over-stressed and under-slept student on campus.”

That’s a small taste of what makes life with CFIDS different. Many at Harvard and in Moorestown came to the conclusion that my illness is somehow the “easier road” or opportunistic pretense. These statements reveal that CFIDS isn’t only a physical nightmare. It is so much more.

A voice of reason
An opinion issued by U.S District Court Judge Freda L. Wilson was perhaps the only piece of analysis to rise above the fray. She delivered the most concise and sane commentary on the episode yet: “…I want to make clear that the evidence in this case has shown that Ms. Hornstine earned her distinction as the top student in her class in spite of, not because of, her disability.

“[The school, parents and community]…adopted the assumption that somehow the plaintiff’s disability and accommodations have given her an academic advantage over other students. They have lost sight of the fact that plaintiff, unlike her peers, suffers from a debilitating medical condition.”

What if we had removed CFIDS from whole episode in Moorestown and replaced it with a racial profile, a religious belief or another chronic illness? Would the furor, the controversy and the scrutiny have been replaced with compassion, understanding and benefit of the doubt? I can only wonder. 

While a town and university community is embroiled in a perceived defense of the universal ideals of charity, I can only feel sadness. I cannot imagine much progress coming against the illness that struck me down until public attitudes toward CFIDS change. Perhaps a proposed name change will help. But maybe it will take a look below the surface of a name, to the devastating illness that lies underneath. Above all of the cries for sharing, caring and fairness, this is the only point I took from the debacle in Moorestown . 

Blair Hornstine’s case is a microcosm of a larger problem. Beyond a girl’s unwillingness to share her academic honor, and a town’s zeal to adjust the rules, is an unseen perspective. Most people missed the point in Moorestown . But for those of us with CFIDS , it’s simply a new twist on an old story: The continued lack of public respect for an illness that has cost us all so dearly. 

Craig Maupin can be reached by e-mail at editor@cfidsreport.com.