Thursday, July 28, 2005

Tylor's Blading Heart

Yesterday after work, I sat with visiting children's-book author Trevor Romain in the lovely old wood-paneled bar of the Hotel Warwick, where he showed me the manuscript he's written with his 14-year-old friend Tylor Lauck.

Tylor has an aggressive form of cancer that attacks his lymph nodes. He has had about 41 operations. One of his legs has been amputated. He now has a brain tumor the size of a baseball, and his doctors have sent him home to die.

The manuscript Trevor showed me included the entries from his blog that had made me fascinated with Tylor, whose precocious wisdom and absurdist wit often seems to come from another world. Like "The Special One," where Tylor, speaking by phone from his hospital room, tells Trevor what he's been doing between cancer treatments:

"I got busted today for rollerblading down the hallway to the elevator."


"Yeah. The nurse yelled at me."

"What did she say?"

"She said, 'You can’t be doing that Tylor.'" And I said why not? She said, 'Because you only have one leg.'"

"So what did you say?"

"I said, 'Lady I have got two legs, but only one of them is visible.'"
In another entry, Trevor asks Tylor what advice he has for people who are facing hurdles in their lives:


"Jump over the hurdles. Isn’t that what hurdles are there for, to be jumped over?"

"You are one smart cookie Tylor."

"Yeah, I know."
The cynical among us might dismiss some of Tylor's sayings as greeting-card wisdom. But as I get older, I find that some of the deepest truths are to be found in statements that I would have dismissed as banal in years gone by.

When I was 12, my Grandma Jessie pulled just such a sentiment out of her wallet. Someone had said it to her and she wrote it on the only piece of paper she had handy, a blank check. It said, "Life is what happens to you while you're busy making other plans." Grandma thought it was profound.

I thought it was vaguely depressing. I was 12. What was life for, if not to be the fruit of my plans, hopes, and dreams?

Several months later, Grandma went to the hospital, where she would eventually die. I didn't know it at the time, but the quote she had admired came from "Beautiful Boy," one of the last songs John Lennon released before he died. And now, a quarter-century later, I start to see that it is not so bad to have life happen to me when I'm busy making other plans. Isn't there some song about how, if it weren't for bad luck, I wouldn't have any luck at all? If it weren't for the life I experience while busy making other plans, I'm not sure I'd have any life at all. Perhaps that's how it's supposed to be.

As Trevor showed me his manuscript, my mind raced. I tried hard to think of ways it could be marketed. In my mind, Tylor was a superstar. He's so witty, so brave, so wise and inspirational—how could he not be? But the more I thought about it, the more frustrated I got, because the truth is that popular culture rarely allows disabled, physically ill people like him to become famous.

Walking home, I thought about disabled people who are famous. It struck me that they are nearly all people like Christopher Reeve who were "supermen" before becoming ill or injured. Stephen Hawking, for example, became a star in his field before losing his voice and the use of his arms and legs to ALS.

But Tylor isn't like those celebrities—at the age of 14, he's never had the chance. He sits in his family's trailer home, in a tiny Ohio town, phoning up friends like Trevor to offer advice and support.

The strange thing about Tylor's having lost a leg, I realized, is that, when you think of a person's undergoing such a thing, you imagine it makes them smaller. But in Tylor's case, it's as though the opposite's happened. It's made him bigger. It's as though his personality, his spirit— everything that makes him who he is, except his ego—has gotten outsize.

I imagined the same thing would happen even if Tylor were to lose more limbs—even if, as with the Black Knight in "Monty Python and the Holy Grail," his body became only a defiant torso. With every limb lost, Tylor, the essence of Tylor, would become bigger and bigger— as with the invisible leg that he described to the nurse who caught him rollerblading.

I thought about what Trevor had told me about how Tylor will die. Trevor asked a doctor friend about it and the doctor said that Tylor's tumor was putting pressure on his brain, pushing it to one side. As a result, the doctor said, Tylor's death will come quickly and suddenly. He might be having a conversation with his parents one day and start to feel sleepy. Then his head will fall to one side and he'll pass away.

As I entered my apartment, it suddenly struck me—what will really happen to Tylor. One day, he will lose so much of his body that the corresponding gain in his spirit will make him too big for this world. There will be no more space left for him here. He'll have to cross over to another dimension where there is infinite space for him, and the love that is in him, to grow.

I threw myself onto my bed and broke down crying.

"For we know that if our earthly house of this tabernacle were dissolved, we have a building of God, an house not made with hands, eternal in the heavens." — 2 Corinthians 5:1

For updates on Tylor, visit Trevor Romain's blog.