Full text of cellist Bob Cafaro’s talk: “The Psychology of Beating an Incurable Illness” at TEDxCharlottesville conference.
Listen to the MP3 audio here: The Psychology of Beating an Incurable Illness by Bob Cafaro
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.
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 …