Full text of cellist Bob Cafaro’s talk: “The Psychology of Beating an Incurable Illness” at TEDxCharlottesville conference.
Listen to the MP3 audio here:
TRANSCRIPT:
In December of 1998, after just having turned 40 years old, I started experiencing a strange numbness in my right leg, and I didn’t think much of it.
Until about a week later, I was at a rehearsal, and I stepped off the riser onto the stage, and my right leg collapsed from under me.
At this point, I saw two doctors, and they both thought it’s probably just a pinched nerve. Nothing to worry about. Good.
Two months later, I started to lose peripheral vision in my left eye, which was now a worrisome situation. And I saw my very first neurologist, and he examined me and said, “You have MS,” and I didn’t want to hear this.
My only knowledge of multiple sclerosis was the great British cellist Jacqueline du Pré, who was forced to stop playing at the age of 26 and later died from complications of the disease at 42.
So you could imagine, a professional cellist being told I have this debilitating disease.
Denial was a river in Egypt. I was not willing to accept this. And then four months later, I started losing peripheral vision in my right eye, which was really scary because my left eye had never recovered completely.
In about one week after that, I came down with what I thought was a stomach bug, but it didn’t go away. It turned out to be a prolonged period of something like motion sickness. I wound up vomiting. Couldn’t keep food or water down for a week, and I wound up in the hospital for severe dehydration.
I was released from the hospital four days later, and I was unable to move my hands.
I could no longer play the cello. I could hardly walk. I was incontinent.
My entire body felt like I was receiving electrical current. I was hearing helicopters all the time, and I saw my neuro-ophthalmologist, whom I had been seeing for the previous six months. And he gave me a basic vision test.
And I was unable to see even the largest letters on the chart, and he proceeded then with the visual field test where you’re given a clicker and you click every time you see a light flash in the periphery.
I sat there completely frozen. Not one click; I couldn’t see a thing. He changed to the other eye. I sat there; once again, no clicking.
He stopped the test, and he said the words I’ll never forget: “I’ll write you a note for permanent disability.”
Whoa. This was just insane. I don’t know what happened at this point, but something went through me, and I told him “You can take that note and you can use it as a suppository,” because I’m going back to work in six weeks when the orchestra season starts.
I said, “I’m going back to work in six weeks when the orchestra season starts.”
And he said, “How are you going to do that?”
He didn’t believe it was possible, but I did.
[read more]
So what do I do? I have this — I’m completely taken out, my central nervous system is up in smoke. I can’t do anything.
There’s a story of a tractor trailer that gets stuck under an overpass. Structural engineers are brought to the scene. How do they raise the overpass? Dig grooves into the pavement under the wheels?
A six-year-old boy comes along on his bicycle and says, “Hey Mister! Why don’t you just let the air out of the tires?”
So, we were all six years old once, but we lose that over time and with education. So I said to that six-year-old boy inside me, “I need your help. You’ve got to show me how to let the air out of the tires of this disease.”
So, together, we started looking for obvious things that were overlooked by the experts, and the first thing I found was the “water cure.” I started drinking half my body weight in ounces of water a day. I noticed my first signs of improvement.
I looked at other things. I looked at MS rates around the world and noticed that your very poorest nations have rates of MS that are about one-third of your wealthy, affluent, industrialized nations.
I looked at Japan, having been there, with its environmental and overcrowding issues — very low rates of MS. I saw the Okinawa Centenarian study: over 900 people that were looked at over the age of 100 and in perfect health.
So I began to believe that our wealthy, lavish lifestyle has some link with higher rates of multiple sclerosis.
I also looked at something called “the placebo effect.” And this is where the six-year-old boy helped. If you look at clinical trials, where you get people who inexplicably improve in the placebo group, it’s written off as an anomaly by the experts.
The six-year-old boy said, “Something is happening here.”
So I started learning the placebo effect by meditating two 30-minute sessions a day that the MS was going into remission and leaving my body completely.
One of the other things – I used experiences all through my life, and I was once on a backpacking trip, not far from here in Shenandoah National Park.
And after three days in the woods, I came out at a visitor’s center, and I saw a big sign with a beautiful picture of a deer, and it said, “Do not feed the deer. When you feed a deer human food, such as chips and candy, you reduce its lifespan by 30%.”
So, I’m thinking, I’m going to be as healthy as this deer, so I basically adopted the deer’s diet. A deer drinks water, eats vegetation, probably some insects – I passed on that one but …
Another thing I started to do was I looked at people who accomplished the impossible. How do they do this? Your most basic example is in 1954, the first person to run a mile in under four minutes was Roger Bannister.
Prior to that, people said, “It’s impossible! Human body can never do it.” He does it. It’s now an achievable goal.
The baseball pitcher Nolan Ryan, who threw his 7th no-hitter at the age of 44, and in that game, throwing the ball 96 miles per hour. He staved off the aging process of the human body for 25 years.
So I’ve adopted his lifestyle: every morning I begin with yoga, stretching, weight lifting, you name it, cycling. I live a very disciplined lifestyle.
In 2013, I had the privilege of meeting someone who accomplished the impossible, and that was Nando Parrado, who survived the famous plane crash in 1972 in the Andes mountains.
And when the plane crashed in the winter, high up in the mountains, Nando was thrown from row nine into the bulkhead. His skull was fractured in four places. He was given up for dead and placed in the cold with the bodies.
Three days later, he awoke from a coma, and 72 days after the crash, Nando showed up in the foothills and got help. This man has gone 37.5 miles through one of the most difficult mountain ranges in the world in the winter.
He had never seen snow, he had no survival training, no gloves, no boots, no equipment and no food. His only source of food was the people who had perished in the crash.
Mountain climbing teams that reconstructed his route said what this man did was not possible.
So I met him, and I said to him, “I always wanted to meet you and thank you because you were one of my guides when I was finished. I’m not supposed to be here.”
And he said, “I’m not supposed to be here either.”
And when this giant gave me a hug, something went through me. I felt like for the first time that I had cured myself of this incurable disease.
And I went back to my neurologist, whom I hadn’t seen for 11 years, and he did a complete series of MRIs again on my brain and spinal cord.
In 1999, my brain had over 50 active lesions, and my spinal cord had one that was 3.5 centimeters in length.
And I worked so hard at my recovery, and true to my word, I went back to work in six weeks when the orchestra season started. Wasn’t easy, but I kept going, never missed work. I missed five weeks of work that year when I was hospitalized.
So in 2013, I had a complete series of MRIs done. When my neurologist looked at the results, he said to me, “You did the impossible.” Because there were no more lesions and no traces of the disease anymore, whatsoever.
So, I was so taken out in 1999, but I worked hard, and everything came back. I got the use of my legs back, I got the use of my eyesight back, I now make it to the bathroom when I need to go.
I don’t hear helicopters anymore, and I don’t feel like I’m receiving electrical current anymore, but the most important thing, I’ve gotten the use of my hands back.
