Please don't call me "Doctor," I haven't delivered a baby in years!

Web Posted on: December 12, 1997

This speech is dedicated to Lisa Soucy, who one day, out of an act of kindness, stopped her car by the side of a road to pick up a cute little kitten. At that precise moment, the driver of another car pinned her leg against the guardrail. Lisa is a beautiful girl whom I love very much; however, she'll never walk without a limp again. This incident occurred at 6:45p.m. on Thursday, October 15, 1992 when she was only 22. Lisa has a boyfriend now. He's British and he looks beyond her disability and sees only her beauty.

Let me begin by telling you about myself. I was diagnosed with ALS three years ago. I was running four miles a day, playing tennis on Sunday mornings, racquetball on Wednesday evenings, and was bench- pressing 255 pounds. I played ice hockey for 25 years: high school, college and semi-pro. We received $25 per game.

I used to speak six languages: English and Italian, Swahili and French, German and Polish. But now I've lost the ability to speak. I can still understand, read and type in all six. However, I've lost the ability to write. Don't try to talk to me in any language except English, because this DECtalk I have here speaks only English; however, we now sell DECtalk in French, German and Spanish and have prototypes in Dutch and Japanese.

I have a Master's and Ph.D. from Cornell University in General and Theoretical Linguistics. I'll be 52 next month. I know I look 35. In actuality, I was born the day the Russians took Berlin.

During my travels, I've seen famine in Africa and death on such a massive scale that this audience has no idea what it was like. Each one of those children I saw die, had the potential to become a doctor, lawyer or engineer. I'm not that naive to assume that all those children would have aspired to such heights but some of them would have!

I've also seen death and destruction in Poland. I was in Warsaw when the tanks rolled in at midnight on December 13th 1981. I saw people being shot down in the streets.

For all you ladies in the audience who think I'm a hunk, sorry to disappoint you but I'm happily married. Some people leave their spouses under similar circumstances but not my wife. She's stuck with me through the good times and the bad times. And unfortunately this is the nadir in my life at present.

I stated, during my speech at Fenway Park in July of 1994, that being seriously ill allows one to grow both emotionally as well as spiritually. History is filled with people who are dealt a poor hand in life who've succeeded in overcoming the impediments and obstacles. The first famous Siamese twins, Chang and Ang, joined at the spine, were married to 2 women who were not joined, and had a total of 22 children by their wives. Whenever they had sex, whoever was the odd man out, learned to meditate. Marco Polo wrote his book, Description of the World, (subsequently called "The Millions"), only because he was thrown into prison in Genoa at the age of 44, with a writer called Rusticchello.

Science is a strange business. When we landed on the moon in 1969, the world of Islam believed it to be a sacred act, treated the astronauts as holy men, and considered the moon rocks as holy relics. The island of Bali, on the other hand, lodged a protest at the United Nations against the U S for desecrating a sacred place. Still, others believed that the event was staged and that the U S made the moon landing in a Hollywood studio.

Medical science is an even stranger business. Sir Arthur Conan Doyle based the character of Sherlock Holmes on a physician named Joseph Bell, whose supposed powers of deduction, allowed him to pronounce diagnoses as a result of a cursory glance at his patient, and prior to his physical examination. Fortunately, my physicians give me physical exams and only then, make their diagnosis. Medical science, by admission of its own practitioners, is pushed along and praised by its own Zeitgeist. In 50 years time, when many of us will no longer be around, (so it's safe for me to speculate about this), people will look at the late 20th Century and be horrified at medical science. I, myself, as a scientist, suffer from the same dilemma. But it's not our fault because every age has to face the very same quandary. We have, as our perimeters, the limits of the body of knowledge which is available to us.

All of us assume risks in life. These risks are called living. Should we have an occasional glass of wine with dinner? Some reports claim it reduces the risk of heart disease; still others claim it contributes to a higher incidence of breast cancer. Should we take an aspirin to reduce the risk of heart disease, or take a chance on getting bleeding ulcers? The chance of death from ingesting a toothpick is higher than the chance of death from exposure to asbestos. Every single day 110 Americans die from traffic accidents, (excluding those who are permanently crippled or maimed).

During the plague, called the Black Death, in late 17th Century London, one-third of the entire population of London perished, some weeks, over 7000 people died. Plague pits had tens of thousands of bodies thrown into them, only to await another layer of corpses. To protect themselves, doctors wore leather gloves, a heavy overcoat, a hat and a beak like a bird which contained spices. People trying to escape plague-ridden London, traveled to towns previously unexposed to the Plague thereby spreading the disease. Over 60,000 cats and dogs, which were feeding on corpses, were exterminated. The children's song, "Ring around the rosy" refers to the blotches on the faces of plague victims. The phrase "and we all fall down", to the hundreds and thousands of people falling down on the streets, all references to the Black Death.

Even worse, 200 years previous to that, in "the calamitous Middle Ages", to cite the subtitle of the book "A Distant Mirror", fleas carried on the backs of rats on board ships, were conveyed from the Middle East, to Messina in Sicily. The plague spread from Sicily to the mainland of Italy to the rest of Europe. Doctors believed that fire would eradicate the germs. By the time the smoke cleared, one-third of the population of the continent of Europe, some 20 million individuals, had perished from this disease.

20 million Russians died as a result of the Second World War. 20 million people, and it's just a statistic. Me, I'm no different than any one of those 20 million Russians or the 20 million Europeans who expired during the plague years. The point I'm making is, those 20 million were 20 million individuals, with families and friends. The vast majority, as in any society, were good people.

Lou Gehrig died at 39; Christopher Columbus died at 55. In 1994, the 11th Duke of Northumberland, one of the richest and most eligible men in England, died at age 42. Marylin Monroe died at 36. Edward G. Robinson, G for Goldenberg, died at age 44. Peter Loury died at 59.

No matter how affluent or how destitute we may be, we're all human beings and part of "La Condition Humaine," that is we are born, we live and we die. There are no exceptions. For someone born in 1900, the mean longevity was 47 years. Granted, much of this was the result of a high infant mortality rate; nevertheless, it was in part due to the lack of knowledge within medical science. No one human being is immune to death. This truism reminds me of a verse of a poem I read as a freshman in college: "Sceptre and crown must tumble down, and in the dust be equal made, with the poor scythe and spade."

As I said, during the fund-raising speech I gave for the M DA in 1995, being seriously ill is like traveling to a foreign country, something which I've had a bit of experience in. There's the issue of different individuals, a different culture, a different language and new restrictions. And there's something called culture shock.

Early in 1993, a close friend, Gary Poock, whom more than a few people in this audience knew, was dying painfully from pancreatic cancer at age 51. His wife, Sarah Blackstone, said to me that being ill is like traveling to a foreign country. I internalized this well-meaning comment intellectually, but not emotionally. The full impact of this statement was yet to jolt me. It began shortly thereafter. At the time of my diagnosis, I recalled her statement and it gave me hope, since I had lived in many foreign countries. I knew in my heart that I had enough skill and knowledge to survive even in some of the most inhospitable and violent regions of the world. It made me confident that I could survive this new country.

I arrived in East Africa in late 1966 at the tender age of 21. It was my first time away from home. And having been city-born and city-bred, I was in for a bit of culture shock. I saw my first grass hut, my first elephant in the middle of the road. You learn very quickly to keep your distance as well as your patience. I once saw a bus filled with people attacked by an elephant because of an impatient bus driver. I was trained by the U.S. government in language and culture. But training and intellectual familiarity is one thing; reality and physical proximity is quite another.

In spite of the fact that I had been trained in East African culture, it was a cultural shock for me when I first got to Africa. Nights are pitch black and as silent as death. Only the occasional glow of village fires illuminate the eternal darkness. Serious illness is like that darkness, one is nearly helpless to influence or change it. The only defense is self-confidence, optimism and innovation. I arrived in my town by a grueling 14 hour train trip in the middle of the night. The train broke down in a town called Gilgil, about halfway to my destination. There was no one there to meet me; I was all alone.

The only light was the glow of the sodium lamps in the town several miles away. I walked down a pitch black path, the only sense of direction I had was the glow of the sodium lamps coming from the town. Being ill is like taking that long walk once again. You have to ignore the pitch blackness and focus on the warm orange glow of the sodium lights. You have to ignore the danger from wild animals and focus on your goal, to arrive safely and in one piece. If the hyenas are around, or even if you imagine that they're around, you're in big trouble.

I was fortunate. I had the ability to learn a language relatively quickly. Nevertheless, the minute I arrived in-country, I became aware that the language that was spoken on the streets of the cities and on the dirt paths of the villages, was a far cry from what I had learned in the classrooms of the U S. I had to learn a pidgin variety of the main language of the country. Similarly, when I was first diagnosed with A L S, I was thrown into a different speech community, a different dialect of English. I had to learn new words and a new way of speaking: fasciculation, fibrillation, intrathecal infusion, Rilusole, BDNF, CNTF, AM-GEN, Synergen, and so on. As with travel, the sooner you master another culture and language, the more easily you adapt. And if you believe in the maxim "Adapt or die," then you'll understand the importance of adaptation.

I recall my first bus trip in East Africa almost 30 years ago. I noticed that there was a driver, a conductor and a mechanic. You paid your fare and the conductor handed you a small purple ticket. On one side it said "Bus Ticket" and on the other it red: "This ticket is no guarantee you will reach your destination." Well, life is no different. This ticket is no guarantee you will reach your chosen destination. Or in the words of a piece of graffiti from Pompeii during the violent eruption of Mt. Vesuvius, someone had the courage and will to write on a rock:, "Nothing Lasts Forever." Albert Einstein once observed, "Every one of us appears involuntarily for a short stay, and wonders why."

In any case, you're here to stay. There is no going home, at least not in the near future. Perhaps never. This is not a vacation. You're living here now. It's adapt or die, or at least be very uncomfortable, both physically and emotionally. The quicker you adjust, the better it will be. You'll be more productive; you'll make new friends; you'll hear and see the real news, the next safari you never thought you'd get around to taking; the next mountain you wanted to climb; the new career you wanted to start.

I've seen and faced death, gained skills that enabled me to live in foreign countries and became involved in the development of a new technology. An adventurer and a pioneer. Whoever would have guessed that being true to myself would be of such benefit, not only to me, but to so many others.

I realize, in order to survive, that I need to continue to be a pioneer. Only now I'm a pioneer that leans on the helping hands of others. Always before this time in my life, I felt I had to be strong, to do everything alone. Now my life has had to expand to daily include, and be part of, many other hands so that I can still be productive. But what is the shame of that? Would Edmund Hilary have made it to the top of Mount Everest without the aide of his Sherpa guide? But I need pioneers around me, not afraid of traveling to "distant lands". Pioneers who are courageous, strong individuals.

Noah, the man who built the famous ark, has to have been a very courageous, unique personality. A man full of hope and faith. How else could he have withstood the laughing jeers of his neighbors and friends when he knew he had to build this gigantic ship in the middle of the driest land? But he had his family and his God.

Columbus, another intrepid soul, who traveled on another ship to a new, unknown world, had a nearly mutinous crew but the backing of a strong monarch. Neil Armstrong, setting foot on the moon after a glorious but risky journey, voiced his humble individuality with the quote, "one small step for man..." but immediately acknowledged that his work went far beyond himself with the remainder of the quote "...one giant leap for mankind;"

One has to be a brave, skilled individual if one is to be a pioneer, and one willing to lean on or take from the hands held out to him during his travels. I mentioned starving children earlier in my speech, who, through lack of food, would never develop into healthy, productive adults. I see medicine and technology now as symbolic food for handicapped bodies - giving disabled people a chance to grow, develop and contribute. I, all my life, was able to walk, talk, use my hands and so I developed my skills, used my mind, gave back to society. I can only now imagine the possible years of frustration, the starving of personalities, of minds, of souls that the severely disabled would have had thrust upon them if born into this world with so many physical obstacles.

It takes tremendous courage to live everyday when you are disabled. And tremendous hope. Hope that the next day will bring better answers, more solutions. There is an old Italian expression that I grew up with that my wife has never liked. It says, "he who lives hopefully dies desperately." Now that I must live hopefully I understand her dislike of the expression, and I prefer her paraphrase of another Italian saying that usually refers to wine. She says, "a day without hope is a day without sunshine."

My hope is strengthened by faith. Faith in God, my friends and colleagues and in people like you who will find solutions. So, I urge you, don't waste a moment of your life. One never knows when you will be called. The bible says, "To those who have, more will be given; from those who have not, what little they have will be taken away".

Use all your skills, all your body and mind and be glad that you can. Be brave, help others, feed the hungry, be strong individuals, take the next adventure and be pioneers. Thank you.