Law professor battles ALS

By Diane Hirth
DEMOCRAT

A law professor who has proven himself brilliant at defending the constitutional right of free speech soon will be deprived of his ability to speak.

Steven Gey already is unable to use his weakening muscles to button a shirt, lift a wet washcloth with his left hand or turn a key in a lock.



It's difficult for him to scribble the signature he's placed upon voluminous works on issues of church-state separation and free expression, including two textbooks and piles of legal briefs and articles he keeps in cardboard boxes on the shelves of his Florida State University office.

Two weeks ago, the professor got a death sentence: a diagnosis of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.

In all likelihood, it will paralyze Gey's body within a year and kill him within three years.

"I just keep working," said Gey, who's taught at FSU for 21 years and swears he will lecture and write as long as he can. "I don't know if anybody can figure out what it will be like to be a lump of clay."

Like any good lawyer, this 50-year-old seeks an appeal, though his muscle-wasting disease has neither a known cause nor a cure.

Gey hopes to be admitted to stem-cell clinical trials of a treatment that might arrest the disease, which is robbing him quickly of all voluntary muscle control.

He's irate about the intransigency of President Bush, who opposes full federal funding of embryonic stem-cell research that could unlock cures to many diseases, including ALS. Most research on this illness affecting about 30,000 Americans is being done overseas.

ALS holds within it the cruel irony that the intellect of the patient Ð his mind and his senses, such as sight Ð will survive as the body crumbles.

Alternating between hope and bitterness, the guy with a gentle face, glasses and a Groucho Marx mustache said, "I'm firmly convinced it will be cured within 10 to 15 years. The problem is I only have three years."

After many tests eliminated other potential diagnoses, "It wasn't finally a huge surprise," he said. "ALS would always be at the bottom of the list. As one of the doctors said, 'Once you go there, all you can say is, "Good luck and write a will.” ' ''

Bill Marshall of the University of North Carolina at Chapel Hill law school is one of the many who have reached out to an ailing colleague and friend.

"Law professors have more than their share of arrogance. Not Steve. He's one of the most down-to-earth people I know. Now we're seeing another side of him, which is incredible courage," said Marshall.

"I feel devastated. He's not just a good scholar. He's a great mentor to his students. He's been a real sort of Mr. Chips character."

Many former students have contacted Gey, and he's been touched by their concern. One of them, Jason Watson, has e-mailed law-school alumni to encourage them to contribute in Gey's name to the ALS association.

"In the area of federal constitutional law he's clearly one of the great scholars in this country," said former FSU President Sandy D'Alemberte, who in his days as law-school dean hired Gey. "I'm just so sad about this news."

Gey had a hand in many issues of the day. ABC News hired him to be a commentator during the 2000 presidential election debacle in Florida. He helped D'Alemberte in a U.S. Supreme Court case involving protesters blocking entry to a Melbourne abortion clinic, then worked with the other political side to block shutting down a pro-life Web site. He's assisted groups defending the teaching of evolution in public schools and is on the board of Americans United for Separation of Church and State.

He's aware that well-known theoretical physicist Stephen Hawking, author of "A Brief History of Time," has survived for a long time with ALS, but Hawking has the rarer genetic form of the disease. Gey is awaiting test results to see whether he has that form.

The professor who readily admits being a card-carrying ACLU member, who loves the freedom of thinking as a professor and defender of the Constitution, thinks now of a coming darkness: "It really is, at the end of the day, like getting buried alive.

"You can't really be hopeful. But the illusion of hope is the best I've got. I'm working on the assumption I'll live forever. If forever is three years, so be it."


Contact senior writer Diane Hirth at (850) 671-6546 or dhirth@tallahassee.com.
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