Home / Updates / August 30 2002 / Large Professor - Searching for David

The Large Professor
Searching for David

By Phil Caravaggio
First published at www.johnberardi.com, Aug 30 2002.

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This month, Phil steps in and shares some of the valuable lessons he learned when backed against the wall of terminal illness. What's that got to do with you? Perhaps nothing at all. Perhaps everything.

It all began in the fall of 2000. I was taking a break to surf around the net, with the goal of finding a hotel room in Whistler for New Year's Eve. As I clicked from site to site, I noticed that something wasn't right, and it wasn't just the outrageous prices those west coast opportunists were asking.

I recall that my right arm began to feel strange, to feel weak. The medial head of my right triceps began to twitch mildly. At the time, it was merely strange, an annoyance at most. Having suffered numerous cuts, bruises, tears, and sprains as an athlete, it was out of the question to focus on a tiny twitch. I prided myself on my ability to block out the trivial, unimportant nuisances, to focus on those things of greater import, like the reservation of my Jacuzzi suite in the Coast Mountains of British Columbia.

However, the next day I felt the same feeling. Same twitching, same weakness. That's curious, I thought to myself. Two days in a row. It became more difficult for me to change my focus, since the twitching never faded. The same thing happened on the third day, and it would continue to happen everyday thereafter, for a long time.

With each passing day, I became more concerned. It certainly seemed like it was getting worse. Whenever I paid attention to the twitching, it seemed to increase in magnitude and severity, and when it increased in magnitude and severity, I felt I had no choice but to pay more attention to it. I became engaged in a vicious cycle, which was accompanied by a growing sense of frustration and confusion. The situation became a sort of negative sum game - it could do nothing but get worse.

After two weeks had passed, I went to visit my family doctor. After examining me, he concluded that I had been infected by a virus. "Don't worry," he said. "It's been going around lately." Immediately, I latched on to the idea. He must be right, I thought. He is a doctor, and doctors know these things. Besides, I had been feeling a little ill. As I began to leave the office, he motioned me to hold up for a moment. "See me again in two weeks if the symptoms don't go away," he said, in a tone of voice that can only be described as ominous. Suddenly I didn't feel so confident that it was a virus.

As you might expect, the two-week wait-and-see period also passed, and the symptoms did not go away. In fact, things had gotten worse. The twitching in my triceps was clearly visible, whereas before I had only felt it. As the two-week mark approached, and as the problem continued unabated, I began to feel anxious and apprehensive.

I let another week go by, and then another, before returning to my doctor. I had begun to feel that not knowing might be better than knowing, but the not knowing was a good part of the problem. When I finally did return, he cut straight to the chase. "I think you should see a neurologist. Something is not right here." What was once anxiety and apprehension would soon become hopelessness and depression. The look of pity on the doctor's face was unmistakable.

My appointment with the neurologist was booked, and I was not looking forward to it. It was an hour of my life I would not soon forget.

Every chair in the waiting room was taken. I expected to feel sorry for the neuromuscular patients that filled the room, but as I looked closely at them, I realized something that made me very afraid. I realized that they were looking closely at me. I realized that they were feeling sorry for me.

In the office, a whole new ordeal awaited. The neurologist seemed kind enough at first, and distinctly less so as the hour of needle electromyography testing drew on. I could handle being prodded with the needle, but when combined with the neurologist's incessant commentary ("Hmmm . . . not good, not good at all."), it was almost more than I could take. To top it all off, the good doctor segued right into the platitudes. "Well we got a lot done today, so keep your chin up."

"Frankly, doctor, I'm in no mood to be placated. I'd like two questions answered. One, what's going on, and two, where do we go from here?"

"Well son, I don't want to speculate," he disclaimed, just before speculating wildly.

"It could be any number of things," he said. He then rhymed off some serious neuromuscular diseases. "But to me it looks like Lou Gehrig's Disease, Amyotrophic Lateral Sclerosis. ALS, for short."

He had confirmed my greatest fear, and that was all it took. I was diagnosed with a terminal illness at the ripe young age of twenty. If you are not familiar with ALS, let me give you the Reader's Digest version -- It's a nightmare. Some of the highlights include muscle wasting, paralysis, and eventually death as you become unable even to breathe. What followed was the darkest period of my life.

I withdrew completely. Months of near-suicidal depression, interspersed with the occasional appointment or test to further reinforce what I had already accepted as true. The only event that I can remember clearly from that period was an ill-advised muscle biopsy that I was talked into by the good neurologist. After intimating that it would be a needle biopsy, he in fact ordered a piece of my right quadriceps to be removed. Only in the operating room was I informed that the procedure would be performed sans anesthesia, which would apparently ruin the results. Let's just say I "felt the burn" that day. I would later find out that this test was utterly useless in my case, and was ordered out of pure incompetence.

Life no longer mattered. I felt that my fate was sealed, and that I was just going through the motions. I was headed for a major disaster.

Until one day, something changed. In fact, everything changed.

I'm not sure what triggered it, but that day I came to a realization. I realized that I was not a victim or even a patient. In fact, I realized that I was not any of the labels that people had given me, nor was I any of the labels I had given myself. I was not the disease that the neurologist supposed I had. I was not merely a summation of symptoms and side effects. Beneath all the superficial nonsense that people perceived about me, beneath the labels and lament that had become me, beneath the flesh and blood that I was told was failing me, beneath all these things was an intangible spirit - my true self.

True self cannot be abused, attacked, hurt, or defeated. True self cannot be diminished by illness, injury, disease, or any other circumstance. It is indomitable and absolute. It is the unalterable source of strength that lies within each of us. It is the force that propels us forward when all else has been exhausted. It is the inner spirit, the sheer will that allows us to accomplish what we never thought possible. It lies with us always. All that remains is our willingness to seek it out, to awaken it from its dormancy.

In the days and months that followed this revelation, my life changed forever. I became aware of the love and support that surrounded me. I became aware of the family members and friends whose love and support had never dwindled, though I had either taken it for granted or, in some cases, had rejected it outright. I became aware that even in my darkest moments, these people saw more in me than I saw in myself. My mother in particular had never wavered in her belief that I could get well again. In fact, she knew that I was well all along. I had merely allowed others to convince me otherwise.

While I had been drifting aimlessly, my mother was hard at work. She had gone to great lengths to make an appointment for me with one of the country's top neurologists. My visits with him were nothing short of extraordinary. He reran the tests the first neurologist had done. He reviewed the results of the biopsy that had been performed. He ordered an MRI and ran some more tests on his own. After everything was complete, he called us into his office to give us the news.

"Mr. Caravaggio, despite what you may have been told, there is nothing wrong with you whatsoever."

He was right.

Of course, that meant the first neurologist was wrong. This thought had already crossed my mother's mind, and by the time it occurred to me, she was blazing down the street to exact her pound of flesh from the poor doc. My father was the only thing that stopped her from doing twenty-five to life for first-degree quackicide. He is to be commended for that, believe me. You are taking your life into your own hands when you try to stop a mother on a mission.

At the time, I had not even noticed the changes that had occurred. The twitching that was once pronounced and severe was now virtually non-existent. My health was rapidly returning to normal. In fact, almost every area of my life had improved. In many ways, I was better than I had ever been before. By no stretch of the imagination was it a picnic; I certainly had my fair share of challenges. However, with each of these challenges came personal and spiritual growth unlike any I had experienced before.

You may ask what the moral of this story is. In truth, I'm not sure. Perhaps it's to get a second opinion when you are diagnosed with a terminal illness.

Perhaps the moral is that you are more than the labels and descriptions that have been foisted upon you. There is a part of your being - the essential part, your true self - that cannot be described or depicted, despite my most valiant attempts to do just that. It cannot be constrained by a word, phrase, stereotype, image, or anything else. In the end, these things can only limit you if you choose to let them. Make that choice wisely.

There is a part of you that is never in poor health. At a certain level of your being, you are not ill, injured, or diseased. At that level, you are not merely a summary of the experiences you have had or the books you have read. You are not addicted to drugs, cigarettes, or alcohol. You are neither the insults nor the compliments, neither the criticism nor the praise. You are not fat or thin, intelligent or stupid, beautiful or ugly. You simply are, and that is infinitely more than any of these things. It is limitless.

I believe that life is but a search for that essence. Michelangelo was once asked how he sculpted his masterpiece, "David."

"I saw David through the stone," he explained, "and I simply chipped away everything that was not David."

As Michelangelo did with David, we must do with ourselves.