How a 17-year-old responds when doctors say they’ve done all they can
Living on Matt time, with no time to waste
If the past nine months has taught 17-year-old Matt Leffler anything, it is that time is not an infinite resource.
He knows the hard tumor in his stomach that doctors found in August can suddenly grow and kill him anytime.
Yet to look at him is to see not death but life, says Sweet Home High School Principal Joleen Reinholz.
“It’s not the years in your life, but the life in your years,” is the cliche that has become his philosophy.
Except for the stabbing pain in his gut, Matt feels good. He intends to be at his graduation in June, even though he and his doctors aren’t sure. As the time draws near, with plans for the prom and talk of college, he has inspired some who might not otherwise give death a thought.
It is as if the knowledge that a person’s time is running out charms people out of formality and draws them close. Matt seems to use the power for fun and to comfort.
As he walks the halls of Sweet Home, the tall, thin young man in moccasins and jeans cinched with a belt of faux leather and chrome rivets has the aura of celebrity among the students.
After a few minutes of joining a friend’s lunch table, he gets up to leave. The girls get up to hug him first. What starts with him taking the video game controls in the senior lounge soon becomes a gathering of 10 playing with him, watching, just being close.
It has been hard since December, living with the surgeon’s news that he couldn’t cut away the tumor that obscured the other organs.
Yet, ever since Matt gave up on chemo and returned to school this semester, he feels better.
So does everyone else.
No time to waste
There was a time when Matt was hopeful. Those days are gone.
“It’s not just like you’re climbing up on top of a mountain,” he said with a heavy sigh. “It’s like you’re climbing up on top of a mountain, and then you’re falling down.”
The tumor could start growing right now and, he said, “I could be dead in a week.”
He patiently enunciates the disease. Desmoplastic small round cell cancer, which is known for developing in teenage boys.
Alone in his family room in the Amherst neighborhood of Willow Ridge, Matt folded his thin, 6-foot-2-inch self into angles and sat cross-legged. He was getting ticked off at the guys in his band for blowing off practice again. They wanted to perform. They had to get ready.
There wasn’t time to waste.
He would play anyway. On the carpet, he spread out a few songs written on notebook pages, including one about a girl so beautiful she freezes him in his tracks.
The former pole vaulter on the track team who wanted to be a history teacher one day, Matt missed most of the fall semester. There was a spinal tap, bone marrow extractions and his colon was threaded through his stomach, into a bag.
A tube in his chest delivered the highest dose of chemo. For two weeks at a time, he threw up every 10 minutes. He moved from his bedroom to a hospital bed, still in the family room, with rumpled blue sheets.
Life at school is better than life with that nasty poison.
To his classmates he is a lesson in candor and compassion, which he dispenses with occasional, twinkling sass and unhurried teenage cool.
On a recent morning at Sweet Home, crowds of students washed against him, two girls ran up — “Matt!” — and embraced him. The hugs, arm touches, and hand clasps that would go on for the rest of the day, had begun.
The place had the goofy look of a dream. A fun dream of a teeming, Dr. Seuss hospital parade. There were kids in striped tights, hot pants, mini pink kilts, green boxer shorts, mismatched slippers, bathrobes, cowboy hats and a shiny red bridesmaid’s dress.
It was wacky-dress-up day, a call for school spirit and a protest of smoking. But in jeans and a plaid button-down over a T-shirt for a friend’s band, Matt made no effort to look weird. With friends, including one who smokes, he stopped at the information table and examined a bottle of water that had turned tea colored from a cigarette floating inside.
“I don’t need another cancer,” he said.
Sometimes he pays attention in class. Sometimes he wanders the hallways. In gym, which he has every day to make up for missing last semester, he is his true athletic self, like the portrait of him on a snowboard on the family room mantel.
A game of team handball unfolded. Matt passed the big red ball. From the sidelines, sophomore Xavier Walker said Matt is subdued.
“Now he just don’t have the sparks,” he said.
Courtney Jakubec watched the game, too. She remembered the day when everyone wore the Matt Leffler fundraising T-shirts that his best friend, Taylor Heald, designed. She feels bad for him.
“It was just like so sudden, you know.”
In the senior lounge, where kids played poker, ate french fries and sank into the leather couch, his phone vibrated.
“Hello?” “I’m not supposed to be using my phone in school. You know that.”
It was Reinholz, the principal. She walked in to finish the conversation in person.
When she heard Matt was coming back to school, she consulted counselors and considered a formal announcement, to try to get everything right.
Matt wanted to let things be.
“He reads people,” she said of the increasingly affectionate young man he has become. “He reads their emotions. He is very attentive.”
When Reinholz saw him pull out one of his songs about longing for a girl, she asked to read it.
“You’re like a fairy tale with no happy ending . . .
“I’m dying everyday “But I don’t notice the pain “You’re lying in every way
“Cause I know you want this as badly as I do.”
Reinholz sniffed and brushed her eye. “It is absolutely beautiful Matthew.”
Jessica Forti, who sat nearby, sometimes tells Matt about boyfriend-girlfriend fights now that he’s back. Now when she frets, he tells her she doesn’t deserve petty high school drama.
You have your whole life to live, she remembers him saying.
“It gave me a different outlook,” said Jessica.
Matt’s plans don’t go much past next month, when he will take a Make-a-Wish Foundation trip to Florida. They may rush things, if he starts to get worse. With his mother, father and college sophomore sister, he will skydive, horseback ride, and, perhaps, fly in a World War II fighter jet.
“He has a need for speed,” said his mother, Mary, holding her miniature beagle as Matt leaned to kiss Harley.
It was after school. He is in the family room with his favorite visiting nurse who had come to draw blood and check on him. He flirted with the confidence of an older man.
“It’s going to be sweet. You should come,” he said, advising a strategy to join him in Florida. “You should go, ‘I’m the nurse. I have to go with him. He’ll die.’ ”
Heartfelt songs
When Matt sat with a guitar in the family room a week later, almost everything was the same. A few strums and Matt was ready to play three of his favorite songs.
The first he ever wrote, months before the diagnosis, was about a boy with guilt piercing like a dagger “deep within my crooked spine” for being dishonest with a girl he fell for. Mistakes like that are a normal part of life, he said.
“You’re supposed to mess up,” he said. “That’s just how it is.”
The second was a recipe for heartache: “One dose of lust twice a week will help me recall what I used to be.”
He sang with the tough plaintiveness of the late grunge-band rocker Kurt Cobain.
His last was about a girl who dances so elegantly, “I see her, I fall to my knees.”
Two folders bulge with more pages of notebook paper covered in songs. These have been his therapy to deal with the upsetting way his life has been going. He has 71 so far.
He doesn’t want anyone else performing them because, he said, no one else can know how they’re supposed to sound.
He would rather give away his stories about heartache, love, longing, wisdom and forgiveness to all the people he loves. So they can read and remember.
Log into MyBuffalo to post a comment
MyBuffalo is the new social network from Buffalo.com. Your MyBuffalo account lets you comment on and rate stories at buffalonews.com. You can also head over to mybuffalo.com to share your blog posts, stories, photos, and videos with the community. Join now or learn more.
Reader comments