by Erma Bombeck
Or the one who so eloquently summed up her life. "Most parents of children with cancer will speak to you of the specialness of that time of their lives. We were living on the edge, emesis basins, dangerously low white counts, Visa and Mastercharge, we all knew the battlefield, but we also knew the trenches—treats from the pharmacy, giggly nights telling riddles till we gagged ourselves, direct emotional experiences of deepest love and deepest rage, prayers to a God we barely knew but were counting on. So... life goes on. I believe these special children give us an incredible faith in God— if we let them."
In nearly every instance, there had been some positive changes in the lives of the people around these children.
What are children, really? Are they something "issued" to parents like an IRA that is invested in to reap dividends? Are they pieces of putty to be molded in your own image, and when you don't like what you create, you discard? Or are they insurance policies that you sign up for as protection for care in your old age? (My kids always believed I wanted personal live-in slaves.) They are none of these things. Children are "awarded" for an indefinite length of time over which you have no control. All children are born under these terms. There are no guarantees that you will have physically perfect children or that they will outlive you.
What they were saying was, these children had a specialness they wouldn't have missed for anything in the world. The real sadness would have been if these children had never been at all.
9
What Are Friends For?
"Get well, David, we all like you but one person."
Letter to David, a cancer patient from Portage, Michigan, from a classmate
Everyone knows what a "best friend" is.
A best friend never goes on a diet... when you're fat!
She pretends she doesn't know the answer when you haven't studied.
He'll give you the "first lick" off his ice cream cone.
When you go to a dance in the gym together and she gets a better offer, she'll leave with you.
When you're sick and miss the Michael Jackson concert, he won't have a good time.
For more than forty years, I have had such a friend.
When I gave myself a home permanent and left it on too long, she was the only one to sit with me in the bathroom until it grew out.
When I told my best friend my husband gave me two snow tires for our anniversary, she never said, "You should be happy he remembered."
When I was pregnant and my stomach looked like a snack tray on a car door at the drive-in, she never said, "There's a glow about pregnant women."
When I had a miscarriage and everyone else in the world said, "There will be other babies," she cried with me over the one I had lost.
When I moved three thousand miles away, she never once told me what I was doing to her. When her mother died, I never said, "She had a rich, full life and was in her seventies."
When her political candidate lost and mine won, I never said, "Ha, ha, I told you so."
Every time we got together, neither of us had to say, "I'm glad to see you."
A few years ago, my best friend lost her youngest child. He was in his twenties. I listened to her. I cried with her. I felt pain that I had never known I could feel before. But not once did I say to her "I know how you feel."
Having said all those wonderful things about myself, I will now tell you that when I first heard of his death I didn't want to call her or meet her face to face. In spite of our closeness of forty years, I didn't know what to say or how to act. I felt a strangeness—like I didn't know her anymore. My first words to her were "What can I do?" Her eyes brimmed with tears as she said simply, "Be my friend."
I nodded knowingly, but later I thought, "How do I do that?"
What do people who are ill and their families want from their friends? I've read hundreds of letters from families where cancer has entered their lives and I can tell you what they don't want. They don't want your pity. They can manufacture all they need all by themselves, thank you.
The same goes for your fears and dire predictions. They already have enough material to furnish Stephen King with horror stories for the next twenty years.
They don't want to be candidates for canonization. These people have enough pressure on them without being labeled "courageous," "brave," and "saints for going through what you're going through."
They don't want to be "left alone" to sort things out and deal with their problems. Never has their need for other people been greater.
One of the most unusual stories I heard about friendship involved a cancer patient in Milwaukee who returned home after a bout with cancer and chemotherapy. He was apprehensive about how his friends and neighbors would handle his baldness.
He arrived home to a houseful of fifty relatives and friends who had shaved their heads so he wouldn't feel so alone.
Another incident of friendship involved a young camp counselor who found herself in the woods with two very small, very homesick boys who missed their mothers and were afraid of night noises. She suggested they both crawl in her sleeping bag where she hugged them and alleviated their fears. Toward morning the bag started to feel warm and very wet. Her reaction? "Isn't this great! They feel so at ease and safe with me that one of the boys didn't even bother to get up and go potty."
Okay, so you don't have to shave your head or tread water in a sleeping bag to prove your support for someone with cancer, but there are other ways.
You can be honest. Cancer patients recognize there are still some unfounded fears floating around out there about cancer being contagious. Tell them what your concerns are so you can deal with them together.
In one family, a young mother said, "The grandparents kept away. I felt angry and abandoned by them and all of our friends who had healthy children. They felt it would hurt us to look at their children. They felt guilty. My life was a mess. I decided if I didn't start educating my family and friends to the disease that I would lose them all.
"First, I got pamphlets and sent them to all the people I knew. After I broke the ice and they understood, they came around and started being supportive. I really believe people don't know how to react when a tragedy in any form happens. So they end up doing nothing for fear they might say something wrong.
"Everyone would ask, 'How is Travis?' Well," she continued, "I always wanted someone to ask, 'Sharon, how are you?' I think that a simple gesture as in a touch is important. To me, it meant so much if a person would put their hand on my back or touch my hand with theirs. To me, it meant no words can say what I am feeling, but I care so deeply and the touch was all I needed from them. No card would do as much."
Children especially don't know what to do about someone who looks a little different. They have never been faced with anything so serious before. They sometimes resort to cruelty. A young girl actually found it easier to tell people her limp was the result of a skiing accident rather than the result of chemotherapy.
It took me awhile. But I finally realized what my friend wanted from me. She wanted me simply to "be." To be someone to look at and remind her that I was what she had to get back to. I represented her life before it had been altered by her son's death.
I was the laughter she used to have... the zest for living she used to exude... the excitement for a future she felt she had at one time. I represented a "road of normalcy" that she had to find and reclaim, but she needed a beacon to light the way and lead her there.
That's what children with cancer need—some stability from their previous life that dangles before them like a reward or a prize at the end of their journey. They just want to see it, know that it's there, and get back to it.
Whether it's a "touch on the hand" that stirred Travis's mother... a simple offering of a tuna casserole... or an offer to babysit one afternoon, it's an expression that says "Let me help you carry your load."
For Heather, of Springfield, Virginia, who lost a leg to cancer, "the thing that meant the most to me and helped me to get
through everything was having my friends come and see me. I discovered a lot of people don't know how to cope with someone who is different. They get nervous and do a lot of apologizing and smiling. At first, I tried to make them feel better and tell them it's no big deal, but after so many years and so many stares I now just make the people feel like crap and stare right back at them. I don't care anymore. I have my own life to lead and I realized I can't go around trying to make other people feel better about me.
"I got so many cards and letters that really helped. One of them was from Sen. Edward M. Kennedy." She enclosed a copy of it.
Dear Heather:
I am so very sorry to hear you have had to undergo surgery similar to that of my own son, Teddy. I know this is a most difficult time for you and for all who love you and my thoughts and prayers are with you.
I am enclosing an article about Teddy in the hopes that it will bring you some encouragement. As you can see for yourself, Heather, Teddy is living a normal, active and satisfying life—a life which I pray will also be yours in time.
I want you always to remember that as great as a loss of a leg may be, it does not lessen the value of your life, or its value to those who love you. With God's help, I'm certain you will lead even a more fulfilling and purposeful life than you might have if you had both your legs.
With warm personal regards, Edward M. Kennedy
As I scanned a copy of the treasured letter, my mind resurrected a picture in a newspaper from some years ago of young Teddy on a ski slope somewhere, and I wondered if he had found his way back to his "road of normalcy." Was it the smooth highway he had left, or was the road blocked with "rough spots of discrimination... detours of ignorance and insensitivity in need of repairs?"
I boarded a plane for Boston to find out.
10
Is There Life After Cancer?
People are taught we should look perfect. We see all kinds of ads on television. I didn't think I'd get a date in the world. I thought, "What girl would want to go out with some kid with one leg?"
Ted Kennedy, Jr.
Boston, Massachusetts
He's called Ted now and he still looks like he belongs on a ski slope. At twenty-six, he's tall, tanned, and robust and occupies a small brownstone apartment on a tree-lined street in Boston. His real home is a sailboat in Boston Harbor.
At eleven o'clock, it's an early morning call for him, considering it's the day after the primary of his dad's reelection to the U.S. Senate, a race that young Ted managed.
When the young son of Joan Kennedy and the senator from Massachusetts lost a leg to cancer in November 1973, he joined an impressive statistic of the 40 to 90 percent of children who recover to live nearly normal lives. He has spent a part of those years fighting discrimination against the handicapped.
In an environment that turns out role models on a grand scale, survivors of cancer tend to stay in an arena that is safe and comfortable. They are reticent to return to the mainstream of the real world. The young man on the couch sipping tomato juice is the exception. He has resisted the courageous poster child syndrome. In fact, he's uncomfortable with it. "I come from a competitive family," he smiled. "After I lost my leg, I got on skis very quickly to keep up with the family. It was important for me to get on with my life and not feel sorry for myself.
"We're also a tight-knit family. They never allowed me to feel like I was different. If there was a football game being organized, they'd always say 'C'mon out.' And my cousins, they'd throw the football at me just as hard as they would anybody else.
"Believe me," he said running his hand through his hair, "I tried to use it to my advantage. When I was the quarterback and they were calling three Mississippi's and I was standing there, I'd kind of look 'em in the eye as they were coming in— there's that split second that you're looking for someone who's open—and I'd say 'Oh, aren't you big coming in and tackling some poor little kid with one leg!' "
They creamed him.
"I guess what I'm saying is I don't want to make my whole life out of my disability. Don't get me wrong. I'm very committed to what I'm doing except I want to do something else. I can still have a voice, but I've just decided I want to step down for awhile."
He posed an interesting question: How much do you owe cancer? How much do you have to give back? When do you stop paying homage to it?
Ted has paid his fair share of dues. He went through college at Wesleyan University in Connecticut "like a normal kid." A year after he got out of school, however, "my mailbox started filling up with these different requests to do these different things... speak at one place or another. I was approached a number of times by people who wanted to do a movie about my life story."
At first Ted resisted the offers, citing the invasion of his privacy, but eventually it came down to the fact that they were going to do it with or without his blessing, so he opted to work with them and maybe have a little more control.
His royalties from the "Teddy Kennedy Story" were treated as seeds to be planted and harvested into something that would benefit other cancer patients. Under Ted's guidance, they took root in establishing a new advocacy organization called Facing the Challenge. A civil rights office for people with disabilities was born.
"I worked initially in the field of employment and helped put together a network of people in Massachusetts who were currently hiring people with disabilities... all kinds. Then I'd go around and speak to businesses and whatnot about incorporating people. Most companies don't even have an affirmative action statement about people with disabilities.
"But instead of going around hammering away at, 'You should do this, you should do that,' I brought in other people with me... other businesses that had accommodated people, and they'd say, "Hey listen, I manage a hotel.' So that's how it originally got started.
"Slowly, it evolved into public policy and I'd work on legislation in Beacon Hill and Capitol Hill. About a year ago, I decided I couldn't do my work at Facing the Challenge and run Dad's reelection campaign, so I put it on hold."
Ted's work not only broke some new ground on the cancer survival aspect that is often ignored, but it focused on a host of inequities being pursued by other groups and coalitions today. Once a cancer patient is cured, a new battle emerges with virtually no support systems to help them.
Heading the laundry list of problems are: psychological readjustment, genetic damage, employment discrimination, the inability to get insurance coverage, inadequate access to good medical care, drained financial resources, and the loss of friends. It's like being invited to the party of your life and when you get there... finding out you're dressed wrong.
"We've grown up in a society that's in many ways sexist and in many ways racist," said Ted. "People have been taught and conditioned a certain way. The 'C' word. People don't want to deal with things like that.
"What you're basically going up against are tax-paying dollars being used to build inaccessible buildings and stuff like that. That gets me angry. I have always believed that it's not somebody's physical or mental condition that constitutes the biggest handicap or obstacle. It's society itself.
"The money that goes into research can help people years from now, but for the people that are going through it right now and have to live the rest of their lives without... what are we going to do about that? These people have to live today! The research is very good, but we can't lose the fact that there're people living now."
Ted is reluctant to look over his shoulder to sixteen years ago when cancer struck. However, his ready answers to familiar questions indicate he has thought long and hard about his disease and has come to grips with it.
Loss of friends?"People who never were your friends really to begin with."
Your 15 percent odds of surviving? "I thought I was immortal until I graduated from college," he grinned. "Kids don't sit around and say to themselves, 'Am I gonna die?' How many funerals has a ten-year-old been to?"
Concern for your future? "I just don't
worry about things that, number one, I can't do anything about, and number two, the trivial things."
On becoming discouraged? "At first you say, 'Why the hell did this have to happen to me?' Later, when I was in the highest mortality ward of the hospital and I'd see those babies, I'd say to myself, 'How lucky I am.'"
Does humor help? "I was riding on the back of a friend's bicycle and we wiped out, hit a bump or something, and my foot was turned around backwards. I got up, twisted it around the right way, and walked off. The people standing there just couldn't believe it."
When I asked him about his future, he returned the question with a question of his own. "Do you have a crystal ball?"
Then he thought on it. "I don't think it's necessarily important to run for an elective office to make things work and to make a difference," he said. "I'm reminded of somebody like my Aunt Eunice [Eunice Shriver] who started a camp in her backyard that grew into the Special Olympics, the largest amateur sports program in the world. It's incredible. She has affected the lives of more people than any public servant ever has. I've got a lot of interests... for maritime marine policy... I'm very interested in what we're doing in our oceans." He paused and smiled broadly. "I'd like to think that the Ted Kennedy, Jr., story has yet to be told too."
He postponed his good-byes to whip out an album of pictures. When he found the right page, he was like a proud father. "Here she is," he said.
"She" is a forty-year-old, fifty-foot wooden yawl sailing vessel called Glide that awaits him in Boston Harbor.
As the pictures of his family flipped by like a home movie in slow motion, he brightened when he mentioned a visit that weekend with his ninety-eight-year-old grandmother, Rose Kennedy. He recalled how a few weeks earlier the family had sat around with her singing Irish songs. I sensed that his family, whose names had surfaced so often during our conversation, had been as instrumental in his cure as chemo.