by Erma Bombeck
On the way home, I thought about Ted's pictures and all the other family pictures I had seen... the cancer patient in the center... Mom and Dad hanging over their shoulders... a dog usually in the front row... and off to the side, a brother or a sister.
Every day of their lives, these siblings suit up for cancer. They go through the scrimmages and the emotional ups and downs during the season. They know all the plays. They are expected to be there. To do what? To sit on the sidelines... and watch.
11
"I Was There Too"
When Daniel came home from kindergarten one day, his mother announced excitedly, "Daniel, your sister is in remission. " Daniel screamed, "Yea!" and ran outside on the porch to shout to a group of his friends, "My sister is in remission!'''' Joyously, everyone jumped up and down, clapped their hands and danced on the lawn until Daniel stopped and said soberly, "Momma, what's remission?"
Imagine for a moment that you are eighteen years old. It's a school night and you have just said good-bye to your best friend, Amy, after gymnastics practice.
You stand in front of your house and wonder "Why is the house so dark? Why are both of my parents' cars gone? Why is there such a feeling of emptiness? Why isn't the porch light on?"
As you stand in the foyer, you hear sobbing coming from the den. Out of the shadows, a stranger approaches you. When he comes into the light you realize it isn't a stranger, it is Mr. Maguire, a very good friend of the family. He leads you to a sofa where he tells you gently that your brother is ill and has been taken to the hospital. He has leukemia.
You say to yourself, "Mark has leukemia! He is only ten years old. This can't really be happening. I feel like a lifeless rag doll wishing for someone to pick me up and reassure me that everything is going to be all right."
When Mr. Maguire finishes, he gives you a hug and a kiss on the cheek and sends you off to bed. Alone once again to cry... to imagine... to wait for the long night to pass.
After Lara Kain wrote her essay about that long night in Poquoson, Virginia, her mother, Marsha, added a postscript. It read: "It's important for other parents to realize how devastating it can be even if the brother or sister show no outward signs of their grief."
Actually, there are a lot of signs.
Younger children will sometimes develop physical symptoms similar to what their brother or sister had before they were diagnosed because if that's what got their siblings all the love and presents, it could work for them. If it was a sibling with a brain tumor who had headaches, they'll start getting headaches. If it's a child with leukemia who was just really tired, they'll be really tired all the time.
Sometimes they'll have regressive behavior. A kid who at the age of three or four was considered toilet trained will start having "accidents." They often have behavioral problems at school and their grades decline.
In the older age group, teenagers do a lot of acting up. They figure that negative attention is better than no attention at all, so they get in trouble just to get a reaction. If the only way they can get noticed is by being struck, they'd rather be struck than ignored.
Many children haven't lived long enough to develop the verbal skills to tell you what they're feeling, so they use only what they're good at— actions. But their emotions are real and the emotions have names.
One is called Fear: "When I was four I went to visit my brother in the hospital and he had patches all over him. He looked like E.T. and I was scared."
Another is called Resentment: "I'm not going to talk about my brother who has cancer—but myself, who like everyone else in this family has a piece of the killer inside one way or another. I'm a real independent person who, when confronted with a problem, likes to handle it in my own way... with only the Lord to help me."
Confusion is right up there: "For a long time I couldn't face going to the hospital to visit my brother. It hurt me to see him so sick. One day when we were alone I finally burst out after silence and forced small talk: 'I don't know what to say!' I'll never forget him looking at me and saying, 'You don't have to say anything, just be here.' "
Shame: "My sister was afraid to kiss and hug me at first. She thought she would get cancer too. But now that she knows she can't, we kiss and hug even more."
And the ever-popular Jealousy: "The hardest part about having a brother or sister with cancer is not getting attention, not getting toys, and not getting to eat in bed. The advice I would give to anyone with a brother or sister with cancer is to take it easy and be yourself."
Embarrassment: "Rarely mentioned but often lurking is another source of sibling guilt, humiliation at having a family member who is ill, disfigured, or dying, marking the family as 'different.' " Apprehension: Asked if he had any fears or nightmares, Bobby said, "That my legs will get cut off also. I think about it a lot. I wake up and go into the kitchen. All the time I worry about it."
I remember one little boy who said, "Sometimes when my brother was barfing, I went into the closet and shut the door and didn't listen. It scared me so."
When asked if he had told anyone about it, he looked surprised and said no.
There are a lot of mourners and frightened people in the closets out there.... young people who show up every day for the next installment of cancer. Unlike parents, doctors, and counselors, they have no active role to play in the disease. They just try to fit in wherever they are needed. But they feel. God help them, they feel.
Traci A. Maass, a fifteen-year-old from Arlington, Wisconsin, wrote:
"I would like to add this small story of a young boy with cancer to the book. He is being left nameless because I want people to read this and possibly put themselves in my place. If you feel his name should be used, then write me and let me know. No one knows I have written this eccept [sic] for my aunt and she isn't telling anyone. One day I will get up the courage to tell my parents, but not just yet.
"I remember the day he was born, like it was yesterday. I was only four years old at the time. I went and visited my mom and him when he was born. From that day, he became one of the most important people in my life.
"When my brother was two years old, it was found that he had cancer in his kidney. After the surgery, we had a period of time that no cancer was found in him. We were all overjoyed. We all thought that finally, together, we had overcome this and we were strong for it. But it wasn't the end. We found out, at one of the checkups, that cancer had spread to his lungs.
"I remember the times we went to the hospital for his treatment. I hated that place and what it did to my parents. It put so much strain on them and I couldn't take it away. I wanted to, but how?
"My brother went to the UW hospital in Madison. I was scared of that place. We did this for a few years but nothing helped. There was no hope. I didn't even know it. My parents and brother knew, but no one told me. I found out from my brother. We were fooling around one night and I must have hurt him some because he said, 'Be careful, I'm going to die.' I'll never forget the words. My parents told me later. I told them I understood, but all I wanted to do is ask why? Why wasn't I told earlier and why did I find out from my brother? But I didn't. They already had problems. I didn't want to add to them.
"We took him to Florida as his last wish. A few weeks after we got back, he died. And that day I died some also. Well, I have accepted his death but I still can't talk about him without crying. While writing this I had to stop several times to dry my eyes. I have written mostly about the bad times, but there were a lot of good times.
"He taught me about life. He taught me to love, no matter what, to accept things as they are and not to question them, and most importantly, that there is life after death. There are a lot of people who knew my brother and helped us a lot. I can't name them all but there is one person who deserves a lot, Dr. Dorothy Ganick. I want to thank you [her] and all the people who helped a little boy to live as long as he did."
I wrote to Traci to tell her I wanted to use her letter in the book and, though I didn't want to be too o
ptimistic about my expectations, it was just possible that her secret would be a secret no more after it was published. She let her parents read her essay and permission was given to print it. Her brother's name was Christopher Paul.
Sometimes people have a way of making siblings feel invisible. As Emily, age twelve, of Richmond, Virginia, wrote: "It's not like I wasn't there. I was there alright. I wasn't the one with cancer, but I was still a victim. No one knew that I went through a lot too. No shots. No medicine. Just pain."
But life has a way of going on... and dragging you with it whether you want to go or not. How do you cope, living with all this uncertainty day in and day out? For a few answers, I'd like to introduce you to two young Olympic skaters you probably thought you knew pretty well from the Winter Olympics in Calgary in 1988.
What you might not know about them is how cancer was and continues to be a part of their lives.
A Tale of Two Siblings
It is written somewhere that a plane never crashes when you are riding in first class; Miss America never sweats; Olympians never have shoelaces that become untied and generally lead charmed, perfect lives.
Or maybe that's what we tell ourselves.
The reality was reported in a small paragraph in Life magazine in March 1988:
"U.S. sprint star, Dan Jansen, 22, carrying a winning time into the back straightaway of the 1,000-meter race, inexplicably fell. Two days earlier, after receiving word that his older sister, Jane, had died of leukemia, he had crashed in the 500-meter."
Dan Jansen was predicted to bring home two gold medals in speed skating, but cancer in his family intervened, and on that cold day in February in Calgary, he became instead the most famous cancer sibling of all time. He shared his grief before a televised audience of two billion people. His pain was translated into twenty-five languages throughout the world.
The entire Jansen family—all nine children of Geraldine and Harry Jansen—had lived with his married sister's cancer since she was diagnosed in
January 1987. "We were shocked and a bit ignorant, but we accepted it because Jane helped us."
As the Olympic competition came closer, Dan was torn between going to Calgary and staying at home in West Allis, Wisconsin, with his family. Jane was having problems with her liver due to chemo. She assured him, "Don't worry about me. See you in March." Dan was optimistic.
But on the day before the event, his dad was called home from Calgary because her condition worsened. Dan again felt he should return home but "Jane wouldn't have wanted that. She'd have wanted me to race."
In the small hours of the day of the race, he talked on the phone with the young mother. She was too weak to answer back. Later that morning, Jane died.
At 6:07 that evening, Dan stepped on the ice. "It brought to mind how when you skate you really have to concentrate. I never realized how much I took it for granted, but I just couldn't focus. They didn't even feel like my skates. My body was in Calgary, but my mind was in West Allis."
Families in crisis instinctively close ranks when one of them leaves a void, and Dan felt deeply that he was not there to make the chain stronger. "After I fell the first time I was disappointed," he said, "but I didn't care that much. It's so weird. All these years for that moment... a race I had dreamed of since I was four years old. Believe me, some things are more important than gold medals. No one should take anything for granted."
On that evening when Dan stepped on the ice, a more-than-interested spectator watched him from the stands of the Olympic Oval indoor speed-skating rink. It was his longtime friend and Olympic gold medal hopeful, Bonnie Blair. She and "DJ" had been friends "since we were born."
Bonnie was anxious for him. She knew what had happened and tried to stay away during the day so she wouldn't remind him.
"I watched him step on the ice and was concerned with his warm-up but figured he could shake it off and win. When he fell, I cried my eyes out. When he fell in the second race, I figured the three worst things that could have happened to him... did."
Of all the people who watched Dan Jansen that day, Bonnie came the closest to knowing how he felt. In February 1987, she was competing in Europe when one of her sisters called. (Bonnie is the youngest of six Blairs, children of Charlie and Eleanor Blair, Champaign, Illinois.) Since it was close to her birthday, she figured they wanted to wish her a happy one.
Her brother, Rob, got on the phone and confided, "Bonnie, I'm sick. I had a seizure two and half weeks ago and had to have some tests for a brain tumor." When Bonnie began to cry, he told her of how the paramedics arrived when he had the seizure and asked him who the president of the United States was. The only name he could think of was Grover Cleveland because he and Bonnie shared the same birthday. He knew that wasn't right, so he said he didn't know. They had a laugh and she even forgave him for not calling her the minute he knew.
As with most siblings, she felt utterly helpless. "Why him?" She said, "I had a feeling that when I saw him he would be changed. I wondered if I would ever talk to him again. My best girlfriend in high school died of leukemia and it hit me hard.
"I guess I've always had a philosophy—don't worry until you have to—our whole family feels that way. We're very close."
In April, Rob found from a biopsy that he had a low-grade, slow-growing tumor that didn't seem to be going anywhere; it was just there. Things settled down a bit until New Year's Eve—two months before the Olympics—when Bonnie's father was diagnosed as having lung cancer. Another decision was made by the family to hold off telling Bonnie until they had a full story to tell her. Nothing could be accomplished by alarming her with the competition so close at hand.
When they found radiation was a viable treatment, they told Bonnie. "I've learned from Rob and my dad that you have to live life to its fullest. I try to see the positive in everything. That's the way I've been taught."
On February 23, it was Bonnie's turn to take to multiplying it by the number of times I go to the bathroom during the night.
A kid's idea of roughing it is cooking pancakes on rocks. My idea of primitive camping is a TV set that doesn't bring in "Wheel of Fortune." That is not to say there aren't adults who are comfortable in Never-Never Land. There are scores of camp directors, nurses, counselors, and doctors who staff these camps for cancer kids, siblings, and families throughout the year.
They could write their own books. There was the director who had a herd of cows that discovered the archery range and ate all the targets. There was the mother who was apprehensive about being separated from her sick child for the first time. Just as she was softening, a counselor interrupted with the news that one of the children had slipped in the mud, dislocated her knee, and needed a stretcher.
These adults are there because they want to be and they're there because they realize camp has become as important in the battle against cancer as some of the treatments. They see firsthand what time away from the daily battle for survival can do. That is enough to sustain them.
On the flip side, they are the first to admit this job rewards them in a way few jobs ever can. I saw the children who looked at these adults with an excitement reserved only for a Madonna concert ticket. Kids who depended on them for rescue from endless days of being sick. Kids who had lost their places in the real world. Children who for a week or two each summer were given permission to be like any other kid in the world.
Camp has written a very important chapter about cancer. Kids get a second chance at the childhood they thought they had lost. Camp confirms the fact that you can put children in an adult situation in an adult world and give them adult problems— but you cannot take the child out of them.
If they only have one leg, they will jump into a puddle of water with it. If they pass a mirror reflecting their bald head, they will stick out their tongue in defiance. If you put 'em in a wheelchair, they'll find another one to race.
While you are reading this, there are two important things to remember. The first oncology camps did not app
ear on the American scene in any numbers until 1982. Why? Because before that time there wouldn't have been a significant number of children to go there—the successful treatment of children's cancer has been that dramatic and that recent.
Also keep in mind this is the only place a child can go and be totally himself. He is among friends who have shared everything he has gone through— and more. He can lay bare his head and his feelings... and not be judged.
It's an old camper's law (No. 192): "You will have more fun at camp if you maintain an age of twelve or less."
These then are the voices of people that camp was created for.
Dear Camp Sunshine:
I'd like to get right to the point. The best part about camp was missing the last three days of school and my exams.
Jess, age thirteen,
Atlanta, Georgia
We got four bungy cords and tied Molly to a tree.
Becky,
Camp Ukandu
Vancouver, Washington
CAMP JOKE:
Q: What happened to the Indian who drank twenty gallons of tea?
A: He drowned in his tea pee!
Camp Kyso, Carrollton, Kentucky
"Sleeping Under the Stars Ensures Rain."
Camper's Law No. 976
Dear Mom and Dad:
I sure do miss you, but I don't want to come home.
Name withheld for discretion
Nashville, Tennessee
I dream about the mountains,
Looking at the sky,
But here I am in my room,
Right by their side.
Now that I'm in the mountains,
I feel so fresh and clean,