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Zero Chance -- Forward

Posted Oct 04 2007 12:00am
A man has no more character than he can command in a time of crisis.
Anonymous

“You have zero chance of survival.” That is what my 19-year-old brain heard as my doctor told me how bad it was that the cancer, that had taken my right leg three years previously, had now spread to my lung 2/5 of which had also just been removed. What he actually said was probably, “No one so far has ever survived once this type of cancer spreads through the bloodstream.” That was 32 years ago. I survived. And then some.

This book is about what effect hearing those words has on someone’s personality and how one can not only survive but can fight back, recover and thrive. This is not a “cancer book”. Those are written when the survival is new and fresh and the experience is raw. Instead this book, written with a 30-plus year perspective, is about human perseverance, adaptability, and strength. People ask me all the time how my personality of today would be different had the cancer and death threat not occurred. I will try to answer that but I have to honestly say neither I nor anyone else can ever say for sure what their personality would be like at age 50 if something had not happened to them at age 16 or 19.

This is not an autobiography. I am not famous and have not changed the world. But I have a story to tell, one that might help others. I was as devastated as one can possibly get after losing my leg at age 16, a major portion of my lungs at age 19, having a year of chemotherapy and all the while thinking I would die any day now. I used athletics to redevelop self-confidence and became a double black diamond skier. I have ridden a bicycle, one-legged, from Boston to New York three times, as well as across Massachusetts five times over an eight-year period to raise over $100,000 for charity. I swim across San Francisco Bay every year in what is considered the Grand Daddy of competitive open water swims also to raise money for charity. I earned a PhD in computer science, have written two technical books, and have started five high technology companies where I have been CEO, COO, CTO or VP. In starting those five companies I raised over $80M in venture capital, with two of those companies providing a return of more than $100M each. I have been married for over 26 years, adopted my wife’s son, and had two kids of my own as well as one grandchild, all before I turned 50.

Cancer is a devastating disease for sure. But there are lots of other conditions that threaten people’s lives and create some kind of disability. Heart disease, Diabetes, Emphysema, Cystic Fibrosis, Multiple Sclerosis, and countless others. In the not too distant past, Polio was the most dreaded disease that disabled thousands. Polio survivors exemplified a well-documented Polio Paradox that I too experienced and I hope this book helps many more experience. What polio survivors always seem to have in common is a drive to excel in the face of physical disability. Studies have compared them to the hard-driving, over-achieving individuals associated with Type A personality. In the words of one survivor captured by David M. Oshinsky in Polio: An American Story: “We were [taught] to be tough and gritty. I did what was expected…I needed to have a disciplined life with a no-quit attitude. That was what worked.” Lance Armstrong has said similar things about his cancer and how without his near-death experience and recovery he never would have gone on to win 7 Tour de Frances.

People who are knocked down by life need help and hope to fight back and win. Perhaps in some way my story can help some of them. There are 1.8 million Americans living with limb loss. One of every 200 people in the US has had an amputation. There are 134,000 new amputations every year. How are they to adapt to this shock quickly? How will they know what is possible? How will they know how to fight back and win? I didn’t and would really have liked to know.

I cannot in any way say that I have “cracked the code” on how to deal with adversity, the kind of adversity others have dealt with wonderfully well. My story might be most helpful to those who have had to deal with a nasty surprise, or to someone close to them who has. Many people over the years have told me that my story is inspirational to them. I like very much when my story or what I do affects people that way. It took me a long time to look outside myself and my struggles, to learn that I can motivate others around me as well as those directly dealing with adversity. Maybe I can shorten that time for some people who read this book. I know I would have liked a book like this when I was lying on my back in the hospital, as a 16-year old, wondering what, if anything, I would be able to do next, and how I could be what everyone forced against their will to be different wants to be: “normal.”

I have another message as well. I’ve endured an adversity that has never gone away. No one wants to be told “you are good considering” whether it is because of your gender, your race, your age, or a disability. I learned early on about the negative aspect of the word considering. The word “considering” is bad. It neutralizes what would otherwise have been a strong comment, a confidence builder, a compliment. It’s a take-the-wind-out-of-your-sails word. It puts someone in a different group, a separate-but-not-equal group. People with any sort of disability or disadvantage don’t want to be part of that group. They work hard to be “normal.” They have to work harder at it than the “normal” people with whom they are trying to fit. Their disability gives them an edge. It makes them more focused, more disciplined, more determined. If their accomplishments are nullified with “considering,” they are shoved right back into an unwanted group with pity and sympathy layered on top, crushing the confidence that was built up through all their hard work. Considering is an insulting word. It demeans disabled people. It demeans minorities. It is used to demean children, women, ethnic groups, overweight people, the developmentally disabled, and on and on.
I have heard the word most of my life. It has angered me and has made me work hard. It has made me determined to ban the word from any description of me. It has been a real motivator. Yet people still use it.
Everyone falls into the trap and uses it, even friends. The word is used in ways that puts disabled people—no all people—into a category and then puts them down. As in “you ski pretty well…considering you have only one leg.” Or “you sure throw a ball well…considering you are a girl.” It goes on and on: “great job you were offered…considering you are black,” “you ran that mile pretty fast…considering you are only 12”. No one likes to deal with these put downs, but disabled can never escape them. The existence of the word considering should motivate us all to shatter the boundaries the world places on us and which we initially feel. Expression of the word should cease because it denies all that was accomplished in elimination of those boundaries.

The best way to deal with this and any type of adversity is to fight against those views and to “show them.” This book is a series of stories about how I did just that and the insights with which I subsequently emerged. If these stories help just one person, I will have achieved my goal.
Within the limitations and frailties of human memory, I have tried to be accurate and factual in all incidents. In general I have used people’s actual names, but in some cases, names have been changed to ‘protect the guilty’.

Newton, Massachusetts, 2007.
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