This story was published July 5, 2004, in the Telegram & Gazette
For Jerry Lewis, it was no laughing matter.
The chronic back pain that bedeviled the legendary comedian for 37 years brought him to the brink of suicide. “I was that close,” Lewis said, holding his thumb and index finger less than half an inch apart for emphasis.
“I saw maybe 35 doctors over a period of time. I flew from the Pasteur Clinic in Paris to the Neurological Group in Japan. From Japan, I flew back to Stockholm, Sweden. I made a number of trips like that where they kept telling me the same thing – `You’re gonna have to learn to live with it.’ And every time they’d look at the X-rays, the CAT scans and the MRI’s – `You’re gonna have to learn to live with it.'”
Albeit that most people don’t have the means to search so far and wide for relief, Lewis has been far from alone in his sufferings and frustrations.
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The National Pain Foundation has estimated that more than 70 million Americans, or about one in four people in the United States, endure chronic pain – defined as pain that recurs or persists for more than six months.
“That’s a lot of people,” said Dr. Edgar L. Ross, director of the Pain Management Center at Brigham and Women’s Hospital in Boston. “It’s a very significant impact on productivity, quality of life, family, and in the public health in general.”
Seventy-plus million chronic pain sufferers also translates into 40 million doctor visits, 515 million lost workdays and $100 billion in medical expenses each year. Then there is the unmeasurable unhappiness of millions of families.
Three years ago Lewis did finally find relief from pain. He was implanted with a pain pacemaker made by the medical technology company Medtronic. The device sends mild electrical impulses to the spinal cord to block pain signals as they travel to the brain so that the patient feels a mild tingling sensation rather than pain.
The impact the treatment had was instant. In a trial to see if he would be a good candidate for the device, Dr. Joseph Schifini, a spine specialist, visited Lewis’ Las Vegas home and put a temporary stimulator on his back, and a temporary battery around his stomach.
“I got up off the bed pain-free,” Lewis said. He clicked his fingers. “Like that.” He clicked his fingers again. “Like that.” Then he clicked his fingers again. “Like that.”
Lewis was being interviewed last month at the Ritz-Carlton, Boston Common hotel in Boston where he was in town to spearhead a new education initiative titled “Tame the Pain” that seeks to connect chronic pain sufferers with pain specialists. The initiative has a toll-free telephone number, (866) 617-PAIN, and a Web site, www.tamethepain.com.
The subject is obviously serious, but the 78-year-old Lewis is also a natural showman – and so the deliberate points of emphasis which were demonstrated to a reporter and also some public relations people sitting in his hotel room. “It’s an absolute moment of being reborn,” he said of what had happened to him with Dr. Schifini’s visit (Lewis flew to a hospital in Houston four days after the trial to receive the implant). “Without Billy Graham.” There was laughter in the room.
But soon Lewis was showing a reporter a letter from someone who had already benefited from the “Tame the Pain” initiative by getting new treatments that the person did not know were available. The person said the treatments have been life transforming.
“I’m getting literally dozens of them,” Lewis said of the letters. “I’ve talked to people who didn’t know there was hope.”
Asked why he was heading the “Tame the Pain” initiative, Lewis said, “Because nobody was doing anything. We’ve got 75 million people in this country suffering from chronic pain and nobody’s doing anything. I got on my white charger and I figured, `Hey, I was saved. I can’t keep that to myself.’ ”
“Tame the Pain” is supported by a coalition of patient advocacy groups and sponsored by Medtronic. Lewis openly acknowledges that he is also being paid by Medtronic. “They said `You can’t volunteer – we’ll pay you.’ I said that’s great.'”
Despite the commercial tie-in, doctors interviewed felt that “Tame the Pain” will be greatly beneficial in raising awareness of a subject that often generates nothing but silence.
“I think it’s quite compelling,” Dr. Ross said of “Tame the Pain.”
“There’s always some concerns about industry support, but I think the role of a celebrity in solving some problems in health care in the U.S. is a well-established role. And he (Lewis) has this story that is very compelling and comes from his years of work, and that he was on the verge of suicide – and I think that was more than just a statement or exaggeration, I think he truly was.”
Dr. Wilfred L. Hynes, director, anesthesiologist/pain management specialist at the Pain Management Center of St. Vincent Hospital at Worcester Medical Center in Worcester, said the initiative “is something that at least brings it to the forefront. People are recognizing that chronic pain is a big issue and it does need to be adequately treated, so I think it is a good initiative from that sense. My only concern with the Jerry Lewis thing is that there has to be a balance in offering these invasive therapies … It has to be tempered. But certainly pain is a big issue. I think a lot of primary care doctors are very uncomfortable treating chronic pain, and education to help them is certainly quite valuable.”
Drs. Ross and Hynes agreed that many people suffer in silence.
“People don’t suggest it and doctors don’t ask about it,” Dr. Ross said. “And the time that we have with patients is more and more compressed.”
Lewis is not the only patient to be told to “Live with it.”
“`Live with it.’ That’s a very common way that chronic pain is managed,” Dr. Ross said. “`You buck up a little bit,’ or `live with it.”’
And pain sufferers may ultimately see the sympathy and support from the people they live with erode.
“That’s a very common message I get from my patients as well, Dr. Ross said. “The weeks go by. The months go by. The recognition and support of the family begins to change, and doctors in general and society in general – people just don’t understand it.”
Some patients end up treating themselves with alcohol or over-the-counter medicines that can be very counterproductive.
“Alcohol is an analgesic,” Dr. Ross said.
“There are many instances which are self-destructive. It’s important to talk to doctors. But people will seek relief for their pain if health-care providers and physicians, in particular, don’t give them adequate answers. There are treatments beyond just medication management and `live with it,”’
Lewis has a vulnerability about him which comes as a little bit of a surprise since a reporter had been warned in advance of the interview about questions that were not likely to go down well (including, “So Jerry, what brings you to town?”) and requested to bring a tape recorder and not use a notepad and pen. Lewis also records the interview, a practice, according to one previous article, that he has conducted since 1950.
But if such requests and behavior echo previous comments over the years that Lewis can be “difficult,” he doesn’t show it on this occasion. His face was still a little puffy from the side effects of taking Prednisone for pulmonary fibrosis, but his appearance is considerably better than in previous photographs of him earlier in his treatment for the lung disease. Actually, at 78, the casually dressed Lewis looks pretty good. He’s friendly, but also wants to be appreciated. He’ll perform even for a small interview audience.
“I’m right near the end of the recovery period of the pulmonary fibrosis,” he said. “I’m sitting here with you where three months ago I’d have to be on oxygen. I’m not on it any more.”
He takes exaggerated deep breaths to indicate his contentment with the situation.
Lewis recalled that he had performed in Worcester in the early 1940s. “I think it was a vaudeville house. I don’t even know if it’s still there, but it was on what we called `The Hook’ … Worcester, Providence, Boston, Brockton.”
His father had been a vaudevillian. “He did everything I did, except he was perfect,” Lewis said. “I studied him pretty good. From the age of 3, he had me sitting in the front row of every performance he had. By the time I was 5, I was performing with him. So this is my 73rd year.”
Lewis did vaudeville, and soon teamed with Dean Martin where they had great success on radio, television, and in the movies. A controversial break-up ensued and Lewis had great success in movies as an actor and director. He also continued to perform live, and made several visits to Framingham in the 1960s and ’70s.
But, along the way, he developed serious back pain.
“It was taking pratfalls all the time. The very nature of my business – a day’s work meant landing on my back,” Lewis said.
He has also identified one particular pratfall in 1965 where he fell and chipped his spine.
Lewis continued to perform. “You don’t even know it (the pain) is there when you’re performing. The adrenaline comes over. The pain is disguised by the adrenaline.”
Then the next day?
“Ow … The next minute. The curtain would come in after a two-and-a-half-hour physical show – and I was all over the park, in the audience, in the band, back and forth, up and down – the curtain would come in and I couldn’t walk. Two stagehands would take me to my dressing room. It was incredible. People in the orchestra would look at us and not understand it. The adrenaline stops when you stop.”
On the one hand, Lewis was defiant. “I said, `Well I’m not going to learn to live with it because it’s wrong. There’s got to be somehow somewhere I can get some help. So I never gave up on it. I kept pursuing answers.”
On the other hand, there were times of despair, which Lewis candidly recalled.
“Starting with my wife and my daughter, they had it tough. Because when you’re in this kind of pain, you’re in a double cesspool of depression and who but the closest to you in your life are affected by it? I mean the pain was so severe there were times when my daughter came by and asked me something and I couldn’t even hear her. And what do you tell an 11-year-old child – `I’m sorry darling, I didn’t hear you’? She used to run to me from school and I would hold her up in my arms … and then that stopped.”
At one point, he was taking 13 Percodan a day, he said. “I was an addict.”
One day he called his friend and family physician Dr. Michael DeBakey “to say goodbye.”
Lewis couldn’t live with it any more.
“He said `Can you please put your suicide on hold just for a few minutes so that I can get Dr. Schifini to come to your house.”’
From the depths of despair, Lewis was about to find a cure.
“Oh my God. Oh my God. It was hard to believe. I thought something was wrong,” Lewis said. “You have a double whammy going, you have no pain and the shock that it’s not double-crossing you. It’s that wonderful double feeling.”
When he got home after the implant, Lewis said the first thing he did was ask his daughter to run to him like she had just got home from school. “And she did it.”
Most of the patients Dr. Hynes sees at the Pain Management Center at St. Vincent suffer from lower back or neck pain, he said. Five percent to 10 percent of the patients have cancer.
“Most patients who come in are referred by a primary care doctor. They are seen and evaluated – we go over their whole history, prior treatments, and develop a treatment plan,” he said.
The plan can include injections, psychological management, physical therapy referrals and medication.
Asked if he is optimistic about the future for pain sufferers, Dr. Hynes was affirmative. “There is a tremendous amount of research ongoing,” he said.
Similarly, Dr. Ross sees a brighter future for many.
“Absolutely. I’m very optimistic,” he said. “Jerry Lewis bringing attention to this problem is very, very important so that the regulatory barriers, the knowledge barriers that exist at this point in time will gradually be broken down. We have the knowledge now to treat most chronic pain effectively. And the intention from pharmaceutical companies and the government in particular to fund research trials is as strong as ever. There are a lot of positives here, despite the negatives.”
Lewis may be best known in recent years for efforts on behalf of the Muscular Dystrophy Association – especially the annual Labor Day weekend telethon. With “Tame the Pain,” he is adding to his causes.
“It’s such a good feeling that a human being is affected by something that you do. And that’s the way I treated everything I did in comedy, always. Which is great teaching I had from my dad,” Lewis said.
His recalled his father told him, “`You have a responsibility and what you’re doing goes a lot further than just that one performance. …’
“He was a good man. A good man. He believed that you’re not an island, and that there are other people here, and that you have to try and make their lives a little better by something you do.”
On a lighter note, Lewis was asked if he remembered how he had done when he performed at that Worcester vaudeville house in the early 1940s all those years ago.
Lewis smiled.
“I was great!”
