Sharing a Piece of His Mind
Survivor Eric Barr rolls onstage in his wheelchair and raises his good right arm above his head and proclaims, "I’m alive! I’m alive!" There is huge applause. He pauses, then adds, "It’s so good to see you all here, in the theater, rather than at my funeral!"
Indeed, Eric’s presence anywhere — much less on a stage in front of 500 people — is miraculous by any measure. Only one year before, in April 2013, he had been fighting for his life in a hospital, and not given much of a chance of winning that battle.
Unbeknownst to him or his doctors, the staph infection that put him in the hospital had entered his body in April 2012 during his first open-heart surgery to replace his aortic valve and remove an aortic aneurysm. Everything seemed to go fine, and he and wife Karen Genet returned to their ranch in Mountain Center, California, and went back to their lives — she as a jewelry designer and he as a professor of acting and directing and chairman of the theatre department at University of California-Riverside.
A self-described gym rat and practitioner of aikido, he also kept horses and rode regularly in the San Jacinto Mountains adjacent to the ranch. In other words, at 61, he was in good shape. And he loved his work as a teacher. "I had been teaching 37 years when I retired last year," he said. "I had been chairman of the department for 30 years."
But the looming infection did not pay any heed to this, it just grew silently. In February and March 2013, he began to notice some fatigue and there were a couple of instances of passing out. He went for blood tests.
Eric and hi wife Karen Genet in 2006
"When the doctor called with the results, he said, ‘Get him to the hospital immediately,’" Karen said. "When we walked into emergency, his cardiologist was there and said, ‘This is extremely serious.’"
Eric recalls him saying, "You’re in a fight for your life."
Although he went into the ER under his own power, he would not leave that way. "He went downhill fast," Karen said. The doctor advised her to get Eric’s two brothers to California immediately.
There was a strawberry-size abscess in his heart, and it had destroyed the electrical system. The infection had eaten the sutures holding the replacement aortic valve. Then the heart threw a clot, and Eric had a left-hemisphere stroke and lost his speech. That night more clots broke off and went to his liver and kidneys. The hospital was not equipped for what Eric required, so a fixed-wing air ambulance was needed to take him to Stanford Medical Center. It was Friday afternoon, and there was no one at the insurance company to authorize the flight. Finally they found an air ambulance in Nevada that would take him without pre-authorization.
At Stanford, the infectious disease team wanted him to have two more days of "nuclear-strength antibiotics," Karen said. "The cardiac team wanted to operate immediately. The neurosurgeons were concerned that the blood thinners required for the surgery would result in hemorrhagic strokes." There had already been a second stroke in the right hemisphere.
A day after arriving at Stanford, he had a third stroke. "They showed me the CT scan" Karen said. "They pointed out the little strokes, which were like little white dots, but now the whole right side of his brain was white. That’s when it became apparent that he was really in trouble."
If a CT scan the next morning were clear of microbleeds, they would go ahead with the heart surgery — but there was a bleed. They waited another 24 hours, still administering the extremely strong antibiotics. The second CT scan showed that it hadn’t continued to bleed, so he was rushed to surgery, with neurosurgeons standing by, in case his brain started to bleed during the surgery.
The surgeons warned Karen that it might be a 20-hour surgery, especially if there were problems. "The surgeon said, ‘If we run into complications, we’re going to come out and ask you what you want us to do,’" Karen recalled. "After eight hours the chief surgeon walked into the waiting room; I thought Eric was dead! He walked up to me with a big smile and said, ‘It went better than we ever could have expected. His heart is really strong and he’s going to be okay.’"
Because of the damage to the electrical system, three pacemakers had been implanted, as well as replacing the aortic valve and removing the abscess and resulting infection. He was on the super-strength antibiotics for a total of nine weeks. He still has one of the pacemakers, and he continues on daily preventive antibiotic treatment to this day.
Some of his doctors felt he was too sick for acute rehab, but the surgeon insisted. After two weeks in Stanford, he went to acute stroke rehab for nine weeks. There, his years of working out and doing martial arts had a beneficial effect. "It gave me the strength to work through my recovery," Eric said. "There were two professional athletes there at the same time. We’d go to rehab together, and working out was competition. That made rehab a little more palatable."
In rehab, Eric regained bowel and bladder control and worked on cognitive function in speech therapy because his speech had spontaneously returned before he left the hospital. His whole left side was still extremely compromised. Then he went to inpatient rehab closer to home for six more weeks, and he still does outpatient rehab five days a week.
Rehab is where Eric first got the idea of doing a show. The title — A Piece of My Mind — came first, "and then I began to envision a show," Eric said. "I just kept thinking about it constantly, and I told my brothers, Karen and the doctors I was going to do a show. I don’t think anyone believed I could or that I would do it."
When he got back home, it was clear he had to leave the university, and he decided to do the show for his students because they’d never seen him perform. "I wanted to do something special for my retirement. Then my colleagues told me that they had booked the theater for me and suddenly, all this talk had a deadline."
"His colleagues were very supportive," Karen said. "They told Eric, ‘All you have to do is come on stage and wave and show people you’re alive and everyone will be thrilled.’" As it turned out, so many people made reservations that a larger theatre was booked.
An inveterate performer, Eric was not going to let an audience go to waste. In January, he began to develop his script — with one-finger typing, at first, "but the challenge was to remember an idea from the beginning of a sentence to the end of a sentence, one letter at a time." He used dictation software and then enlisted Karen and others to type as he spoke. His brothers had taken notes every day he was in the hospital, and these filled in many of the blanks in his memory.
In four months, Eric wrote, rehearsed and performed a one-hour, one-man show. He dismisses the idea that that is amazing. "This is what I’ve been doing all my life so it wasn’t like someone just getting up on stage for the first time," he said. "And when you get on stage, you don’t feel sick. The energy from the audience gives you all sorts of energy to perform. So on stage, I feel completely healthy. I feel more like myself than anywhere else."
As short-term memory is still a problem, Eric comes on stage with a script, but he only refers to it occasionally. "As an actor, it disturbs me a little," he said. "I’d like to be off book, but I feel safer having the script up there with me."
The first time he did the show was one year after the stroke. "The fact that I could pull the show off put me in a new place," he said. "And the kind of support I got from the audience, students, colleagues and friends made me think that maybe there was a future for me. After the stroke, I thought my life was over, that the person I knew was gone and my future was gone. Indeed that is the truth — that person with that future is gone, but I now think I have a future taking my show around and performing it."
UC Riverside has invited him to come back and teach, but he can’t drive because of his left neglect and he simply still doesn’t have the energy teaching requires. "Right now his main job is rehab," Karen said. "That’s a full-time job."In the year since that first show, Eric has performed A Piece of My Mind several times in Los Angeles. This October, he will be doing the show as a fundraiser for the Pacific Stroke Association in Palo Alto, and other performances are planned throughout the state. "I’d like to take the show on the stroke circuit, and if there isn’t such a thing, I’d like to develop one. My biggest dream is to go on the road with Kirk Douglas!"
"It’s like I’m working, I go to therapy almost every day," he said. "I long for the weekends, when I get some time just to sit down and write a story or work on a script because I’ve got ideas for new things. But right now, my new career is just getting better."
Eric’s advice for other survivors is to work hard.
"I meet people in therapy who say, ‘I don’t want to do these exercises.’ But therapy is not optional. You have to do it. I met a fellow in rehab who was 12 years post-stroke when his left arm finally came un-stuck from his chest and his hand at last opened from a tight fist; he was still going to rehab. I asked him, ‘How in the world do you keep going to therapy?’ He said, ‘I do it for other people. I do it for my family.’ And I believe that’s true, we get better for other people.
"Don’t let the stroke define the rest of your life. You have to keep working. Despite the fatigue and despite the failures, you have to keep working."
See Eric share some of his story, courtesy of 89.3 KPCC / Southern California Public Radio
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