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.
An actor-director who has also worked as a carpenter, Byer first noticed weakness in his hands while using tools in the spring of 2002. When he began receiving notes from directors about slurred diction, he suspected something beyond the carpal tunnel syndrome he’d initially been diagnosed with. He walked into the first read-through of Cooking With Elvis that fall not long after a second opinion confirmed the worst: at 31, Byer had amyotrophic lateral sclerosis, or Lou Gehrig’s disease. He and his wife had adopted a two-and-a-half-year-old son, John, just four months before.
Byer went on with the show, which had a three-month run last winter. Dale Goulding, the director of Cooking With Elvis and a close friend, “encouraged me to do whatever was best for me at the time, but he also encouraged me not to back away from the part,” he says. The role requires Byer–who shares a birthday with Presley–to step out of the wheelchair for dreamlike sequences in which he delivers loopy soliloquies and lip-synchs “Suspicious Minds.”
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.
Byer’s been recording his life with the disease and the lives of the other patients using Bu-Nao-Gao in a documentary in progress entitled ALS: The Quest for a Cure. (He plans to visit China in March in order to interview Xia Yong Chao for the film.) A special performance of Cooking With Elvis this Sunday, January 25, will raise money to help him complete the work. The benefit features a “Lou and Elvis Happy Hour” at 3, followed by the play, then live jazz and clips from the film, a silent auction, and a baseball trivia contest.
Byer says working on the play and the documentary has been as important a part of his treatment as the herbs: “A year ago, I don’t think I had the strength to do all this. But if you see even the tiniest bit of improvement, that can be built upon. What I’ve seen with the people I’ve interviewed for the film is some evidence that this is working.”
Since starting treatment with Bu-Nao-Gao, Byer’s seen some improvement in his own condition–rare given the disease’s usually swift pattern of deterioration. (Most ALS patients die within five years of diagnosis, typically from respiratory failure as the muscles controlling the lungs cease to function.) He works out with a personal trainer at the gym three times a week. When he began weight training two months ago he was lifting 120 pounds with his legs. Now he’s up to 220. Though his arms are significantly weaker than his legs, he’s able to lift two-pound weights. When he started, simply curling his arms was a challenge.
Byer acknowledges that he has a few advantages over some of his fellow ALS sufferers: he’s young (most ALS patients are diagnosed after 40), he was in excellent health before the diagnosis, and the disease, despite the initial misdiagnosis, was caught early. He’s optimistic, though he’s well aware that Bu-Nao-Gao is not a cure.
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.”
Goulding, who’s back to direct, says, “I felt that what Ben needed to do with this, if he had the courage, was to allow people to see the disease, basically. That sounds like we’re putting him up there as a spectacle, but it really does tie in with the character. I never thought about replacing Ben. We’ve moved things around a bit, and he has help with the costume changes and putting on his makeup, but otherwise we’ve re-created the show as much as possible from last year. I’ve seen the deterioration in Ben over the year. But I’ve also seen the pace decline and stabilize.” Goulding did hedge his bets in both productions by casting an understudy, but Byer has never missed a performance.
“Bu-Nao-Gao is one step in a long process,” Byer says. “The real change in direction is not so much that people take herbs, but that people take charge of their destiny. Right now the mentality is, Well, you’re going to die soon, so go home and enjoy what time you have. You ask, ‘What should I eat?’ and they’ll say, ‘Eat whatever you want. Enjoy your meals.’ What they should be saying is ‘Eat meat. Eat protein. Prime rib. Steak. Even if you’re a vegetarian, eat that. Because that will give you a chance to fight it.’ So, no, don’t go home and enjoy what time you have left. Figure out what to do. And attack it. Bu-Nao-Gao is half of it. The other half is the person: how they respond to it, how they treat themselves emotionally and mentally. Because the most devastating thing for people with ALS is the thought that you’re going to get worse every day.”
Providing an outlet for ALS patients to talk about the illness has been beneficial, he says: “They want someone to bear witness to their pain, really. It’s a very painful disease. Not physically painful, but the emotional and psychological pain is incredible. Most people maybe confront mortality and the big issues of life on their deathbed. But for people with ALS, you’ve got the deathbed for five years. It’s part of why I’m making such an effort. Immediately after I got my diagnosis, a lot of people who knew me looked at me like a walking dead man. I’m like, ‘No, that’s not the way it works.’ I refuse to hide. I refuse to go home and just disappear.”
Art accompanying story in printed newspaper (not available in this archive): photo/A. Jackson.