Very briefly at this time of year, the favorite musician of many teens will not be Taylor Swift or Jay-Z, but Eddie Elgar. Actually, his friends called him Sir Edward. He’s the dude who wrote “Pomp and Circumstance,” the ceremonial march that will parade them down the aisle to be handed high school diplomas.
On that slow shuffle, they might experience their first nostalgia for the experiences that brought them to the foot of the stage: of proms, of games, of tests and loves.
Not all. One 18-year-old will be thinking of life and how thin are the wires that hold it together. He will be grateful for having survived what the other kids have only read about. Good for them for their innocence. Good for him for his strength.
He’s Steven Bell, and no son of Canyon Crest Academy can hold his head higher. He will reach for a handshake and a diploma on Friday. For much of the past decade, he has walked with a demon but refused to shake its hand.
At age 9, on a Hawaii family vacation, Steven suddenly developed “horrible headaches” that intensified over two weeks. His worried mother, aware that his 4-year-old cousin had died of a brain tumor, rushed him to the doctor when they got home to Carmel Valley.
The day after the diagnosis, he was in surgery for the removal of a cancerous tumor in the frontal lobe of his brain. It was a particularly nasty kind called primitive neuroectodermal tumor (PNET) that Steven called “peanut.” There was no fondness in that name. This was not a puppy.
After surgery, Steven went to St. Jude Children’s Research Hospital in Memphis for nine months of radiation and chemotherapy. There, he learned that the cure can be as painful as the disease.
“Radiation, and especially chemotherapy, they were really rough. All I knew was to fight moment by moment: How am I going to get through today? Radiation was much easier for me to go through than chemotherapy.
“At one point, I hadn’t eaten for — I think it was five days, maybe more. Sometimes, I didn’t want to eat just for fear it would come right back up. I couldn’t even sit up in bed most of the time. On chemo, I couldn’t even have any food in the room. The thought and even the smell of it made me sick. Coffee drove me nuts. If I smelled it, I would throw up.”
Steven had the one surgery, and the tumor hasn’t come back. He explains that his particular tumor has a high potential to metastasize elsewhere in the body, especially traveling through the spinal cord. So the radiation focused on the spine as well as the tumor site.
“The radiation itself also has the potential of causing cancer, so my chances of getting a secondary cancer are much higher now since I’ve had so much radiation.”
There have been numerous side effects of the radiation, including a diminishment of his mental “processing speed” that has slowed the rate at which he assimilates some information and often makes him last to turn in test papers. Nevertheless, he has carried A’s and B’s through the demanding college-prep curricula of his high school.
Radiation also caused him to top off at 5 feet, 4 inches, and he’s reconciled that he will grow no taller. A treatment-caused growth called pterygium covers his right eye with a reddish film, and when removed, tends to return.
When Steven joined his classmates as a freshman and walked the corridors and sat in class, he also carried the marks of infirmity with him. From birth, he has had scoliosis of the spine and a repaired cleft palate that has left him with what he calls a nasally high pitch to his voice.
Also, one leg is about 2 inches shorter, and one arm a little less shorter. He was born with his stomach upside down, and that had to be surgically corrected.
Did I say he is also bald? Radiation did that. Not only bald, but the hair follicles were killed off, so he never will have a head of hair.
That troubles him, but I will defend Steven’s right to a little vanity.
“Being bald bothers me, yeah. I feel a lot less self-conscious about it than I used to. I wear a hair piece. I usually wear a hat at school. In church I don’t wear a hat, and in karate class, of course you don’t wear a hat.”
About your baldness, are you close to just saying, “This is me”?
“Probably. I think so.”
He is, after all, an 18-year-old guy, and you have to work girls into that emotional mix. You can assume girls like hair.
“Uh, girls. I’ve never been very good with girls, I don’t think. I’ve tried. I asked a girl to the prom last Saturday. She said no, but we’re still good friends, I think.”
Did that hurt?
“I won’t say no. It did hurt a little bit, but I was able to put that behind me. I went with friends and their dates, and some guys without dates, and I had a really good time.”
Steven is something of an “old soul” to his classmates. “My friends sometimes come to me with girlfriend or boyfriend problems. Even though I’ve never had a girlfriend, I’m able to help them out with how to deal with things.”
He makes it a point to show me that his right ear is half the size of the left and has limited hearing. I say, “When you start hitting the singles bars, that ear will be a great opening line, like, ‘Hey, darlin’, you ever see an ear like this?’ That’s better than ‘What’s your sign?’”
He laughs merrily. “Yeah, I know. Yeah.”
You mentioned church. With all that you’ve been through, what is your take on religion?
“I don’t know on that one. I’m Catholic, but I recently chose not to get confirmed. I made that choice because I just don’t know where I stand right now on that. I think a lot of it has been affected by what I’ve gone through.”
What’s the purpose of what you went through?
“I don’t know. I feel like I do have something to give back. I hate to sit back and watch other people go through what I had to go through. I know I was given a fairly good deal. I’ve had friends who passed away, and others who made it through but had more severe consequences. They won’t ever be able to live independently. I may have trouble living independently, but it is definitely a possibility.”
Would you like to have a wife and family, eventually?
“Yeah, I’d like that a lot.”
What do you want to do with your life?
“I don’t know, exactly. One thing I will do, no matter what, I will continue to do fundraisers for St. Jude and I will continue to show support, because I believe in what they’re doing. As a career, I’d probably like to teach. I really like kids. I always have.”
This fall, Steven will be off to Montana State University, where he will be a rock of the student body just as he was at Canyon Crest. In four years, he will leave it a better place, guaranteed.
Steven, I want you to think of some words from your heart that people can take away from this.
No hurry. Take your time …
“Well, if life gives you a really hard time, you have to look at what’s good, because that’s how I’ve been able to get through. Life gives you a whole lot of good stuff, and I know lots of times we skip over that and we look at the bad things. But we need to treasure the good things as much as we can.”
If I had a steady supply of Steven Bells, I’d do this job for nothing.
Fred Dickey of Cardiff is a novelist and award-winning magazine writer who believes every life is an adventure. He welcomes column ideas and other suggestions; contact him at [email protected]