As the paraplegic, vegetative Elvis impersonator in Lee Hall’s dark comedy Cooking With Elvis, Ben Byer spends most of the play confined to a wheelchair. But what would be a prop for most actors has unique resonance for Byer. The role, now featured in an encore production by Sang Froid Theatre Company at the Athenaeum, has become entwined in many ways with the degenerative illness that has transformed his life in the last few years.
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Following his diagnosis, Byer and his family scoured the Internet and every other resource they could find for information about ALS, a terminal neurological disease whose treatment hasn’t seen any real progress since Gehrig died of it in 1941. (Riluzole, the only drug currently approved by the FDA for treating ALS, costs about $900 a month, can cause liver damage, and typically extends a patient’s life expectancy by only two or three months.) On an ALS chat board they unearthed what they think is a promising alternative medicine: Bu-Nao-Gao, a mix of more than a dozen herbs, including angelica root, polygonum, and ligusticum. Byer began using it in March of last year. He continues to be monitored by his neurologist, Dr. Teepu Siddique of Northwestern University hospital.
Bu-Nao-Gao was developed by Dr. Xia Yong Chao, a Chinese neurologist whose clinical studies with the herbal cocktail yielded significant results in 20 out of 23 patients he treated from 1989 to ’92. (Xia’s applied for a patent through the World Intellectual Property Organization. Siddique says no protocols on Bu-Nao-Gao have been conducted in the U.S., and that they’re not likely to be.) Dr. Xia’s daughter, MengQi Xia, a neurologist with a practice in Boston, puts the packages of dried herbs together and sends them to Byer’s father, Stephen, in Wisconsin. He distributes them to Ben and several other ALS patients who have started on the regimen as news of it has spread by word of mouth. Rebeccah Byer, Ben’s sister and housemate (he and his wife have separated), boils them down to what she describes as a “stew,” which Ben drinks at room temperature twice a day.
One of his concessions to the disease is that he alone among the cast wears a mike, which helps him project from the Athenaeum’s main stage. He’s also revised his numbers some. “I was a little bit upset after the first couple of rehearsals this time, because I found I wasn’t able to do the routines that I had choreographed from last year,” he says. “So I had to figure out new ways of doing it. One of the things that happens with ALS is that as the body is slowly degenerating, the mind agrees with it. So your mind is like, ‘Well, my hands don’t work. And my tongue doesn’t work right.’ But as an actor, I’ve trained myself for years to make my mind get out of my way and just let my body do whatever it wants.”
Art accompanying story in printed newspaper (not available in this archive): photo/A. Jackson.
