Travel To a Distant Land

Dr. Anthony J. Vitale

Copyright © 1995 Anthony J. Vitale

Muscular Dystrophy Association
November 16, 1995

Nothing Lasts Forever
- Graffiti from Pompeii during the eruption of Vesuvius

Belief is a wise wager.
If you win, you win everything;
if you lose, you lose nothing.
- Pascal

You cannot teach a Man anything,
you can only help him find it within himself.
- Galileo

Only when you've been in the deepest valley
can you truly appreciate the magnificence
of the highest mountain.
- Richard Nixon (on the day he resigned from office)

You can get busy living or get busy dying.
- The Shawshank Redemption

The reason firm, the temperate will,
Endurance, foresight, strength, and skill.
- William Wordsworth

Even though in a wheelchair,
life doesn't have to be perfect to be wonderful
- Annette Funicello (about her fight with MS)

Imagination is more important than knowledge.
-Albert Einstein

I'm honored to be here tonight to accept this award. The accolades which have been bestowed upon me in the past year have been overwhelming. It is not false modesty to assert that I'm unworthy of many of them.

A Perspective on Human Life

I stated, during my speech at Fenway Park this past July, 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 succeeded in overcoming the impediments and obstacles. The first famous Siamese twins Chang and Ang, joined at the spine, were married to two 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 I Millioni [The Millions]) only beca se he was thrown into prison in Genoa at the age 44 with a writer called Rusticchello.

Human beings often forget that life is a blink of an eye in terms of the history of the universe. The dinosaurs ruled this world for 200 million years. This is 1500 times as long as Homo sapiens has existed. The mean longevity for a human is somewhere around 76 years. This is such a small percentage compared to the length of time in which dinosaurs were around, that my calculator rounded it off to 0.

Science is a strange business. When we landed on the moon in 1969, the world of Islam believed it to 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 US for desecrating a sacred place. Still others believed that the event was staged and that the US 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 the 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). Since statistics began being compiled in the 1930s, over 800,000 Americans have died in automobile accidents. More people are killed on crosswalks than from jaywalking. Unemployment is riskier to life and limb than steeplejacking or mountain-climbing. Why? More unemployed people drink to excess or commit suicide and die than perish in steeplejacking or mountain- climbing accidents. Staying a bachelor means you'll live five years less than your married friends. Every single day, over 40,000 children die of illness related to malnutrition. Two-thirds of more than 800 common chemicals tested cause tumors in rodents. What is worse is that more than 50,000 more have not yet been tested. 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 Rosie" refers to the blotches on the faces of plague victims, to 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 Scalamitous 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. My godfather is in the audience tonight. He fought in the Second World War, was in the famous Battle of the Bulge and was captured by the Germans. During that battle, the Americans were asked to surrender. The American General in charge sent a telegram back to the Germans with one word: NUTS! Well, to this disease, I respond the same way: NUTS!

Lou Gehrig died at 39; Christopher Columbus died at 55. Two weeks ago, the 11th Duke of Northumberland, one of the richest and most eligible men in England, died at age 42. No matter how affluent or how destitute we may we 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 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."

Travel to a Distant Land

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 of mine was dying painfully from pancreatic cancer at age 51. His wife 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 US. I had to learn a pidgin variety of the main language of the country. Similarly, when I was first diagnosed with ALS, 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, Riluzole, BDNF, CNTF, AMGEN, 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.

An individual who is able-bodied and then suddenly is severely disabled is like a person being let off a plane in an airport in a foreign country and wished good luck. You shout back though the door "Please keep in touch!" And there you are, tired, confused, searching for a kind face, and God willing, at least one friend at your side. But most of the time, you are all alone in the middle of thousands of people. You examine your surroundings. You see a strange place with a strange language. And occasionally, someone even asks you to be a translator. The clothes are all wrong, they're driving on the wrong side of the road, the houses have mud walls and thatched roofs, and the colors and the smells and the sounds are different and strange. But you soon find yourself adapting to these new colors, styles, smells and sounds simply because they work better in this new environment. The food is different but you've adapted to different cuisine before and you'll have to do it again. The people look different as well. Will you begin to look like them too? Will you start to walk like them? Talk like them? Have that same look in your eyes? 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 read: "This ticket is no guarantee you will reach your destination." Well, life is no different. This ticket is no guarantee you will reach your destination. Or in the words of 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's 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 news that doesn't get on TV. So it's a new you; new adventure. This is 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.

How you wish you could describe what it's really like to friends back in your home country. A postcard just doesn't convey more than a shadow of an idea. The people back home would have to come to see you in your new place in order to understand. And what's the matter with some of them? Do they think you've gone off to Mars? It's only another country. Everyone here is human. Don't they know how long you've been away? A month feels like a year; a year is a lifetime. Hurry, because I'm changing so fast, you won't recognize me. Hurry, because when you casually ask "How are you?" and I answer "Not bad," you'll never, never know what "not bad" really means. You begin to internalize the title of Thomas Wolfe's famous book: "You Can't Go Home Again."

Well, here you are in this new land. And you become aware that the sun still shines and the birds still sing. Life is good and you're still alive. And you notice that the people here are smiling more sincerely. They look at you as if you are someone special. They care. And you? What have you learned? You've learned that time is different here. That this place has a different set of values. Those values are family and friends. All the rest is unimportant.

I like to conclude with another observation of Albert Einstein. He was once asked the equation for happiness. Einstein replied "x + y = z." "What is x?" the person asked. "x is work," answered Einstein. What is y? the person asked. "y is play," replied Einstein. "Well, then what is z?" the person asked. Einstein replied "z is keeping your mouth shut." So, with that, I'll shut my mouth and end this talk. Thank you very much.