When I first heard that line from the late Carnegie Mellon professor’s “The Last Lecture,” my late sister Carol Lapham came to mind.

Carol, who put up with her bossy older sister. Who hoarded enough Halloween candy in her room to last her through Easter. Who wanted to be a writer, and made it happen by founding her own newsletter. Carol, who died just after her 42nd birthday after a lifetime battling Friedreich’s Ataxia, a degenerative neuromuscular disease that affects the muscles and the heart.

Much more is known about FA today than when my sister was diagnosed with it in the mid-1960s. At that time, doctors knew it was degenerative and thus terminal; they did not know exactly what caused it, only that it was hereditary. Carol had the added complication of a congenital heart problem, leading specialists to predict she would not live past the age of 16.

To have FA is to lose complete control of your physical being while your mind remains intact. Watching my sister struggle was often embarrassing when I reached high school. I felt guilty and despaired I didn’t have “normal” sisters like my friends and classmates.

Carol started high school in Tecumseh when I was a junior and I was embarrassed to be associated with her. Like Peter’s thrice-denial of Christ, I often would pretend we weren’t related or ignore her when I would see her walk crookedly down the hallways of the old Tecumseh High School on her spindly legs, crashing into lockers and falling on the terrazzo floor. Because of her handicap, she spent a great deal of time in Mrs. Gerry Pobuda’s Special Ed room where students with mental or physical challenges were sequestered in the 1970s.

FA is devastatingly and agonizingly slow to progress; its victims usually live up to 40 years after they are diagnosed. In the beginning, balance is a little compromised. Then the victim loses the ability to walk; later speech becomes slurred. Then hearing loss occurs. When she was 4, my parents noticed Carol had a stumbling gait and often fell when walking. When we were in high school, my classmates would ask me if my sister was drunk because she had so much difficulty walking. Her penmanship meandered as she struggled to hold a pencil or pen. Finally, in her senior year, she was forced to use a wheelchair.

Her friends helped her make the best of the situation. They decorated the chair in the colors of the class of 1978. One classmate pushed her chair up the makeshift aisle in Indian Stadium that hot June afternoon. When her name was called and she received her diploma, the entire class stood and cheered. And so Carol moved forward with her life. It would not be easy.

Carol published a newsletter for a few years in the late ’80s and early ’90s. It was called “Expressions” and it was part of a nonprofit she created called Challenged Inc. You see, Carol couldn’t work at the kind of job most people would think of as a career. By the time she’d reached her early 20s, she’d lost a lot of the motor skills that let most of us do things like pick up the telephone or hold a pen. So she made her own career.

She discovered a pair of organizations to fund her efforts — the Herrick and Sage foundations — and launched her dream. “Expressions” included various opinion pieces about the plight of the “differently-abled,” or “challenged” as Carol described it. She railed at a society geared to the able-bodied. She published poetry and columns by people who were just like her.

Carol was independent and stubborn. She’d travel all over in Ann Arbor in her electric wheelchair, and if the sidewalks were bad or nonexistent, she’d just use the road. She lived near Stadium and Pauline at the time, and there were many times when she’d be forced to use the highly traveled streets just to get a prescription filled.

I remember one of the last things she said. It was: “You guys all think I’m dying, don’t you? Well, I’m not!”

She died a few days later. But in a way, she was right.

Carol couldn’t change the hand she was dealt, but she could decide how to play it — and she chose to live her life to the fullest despite the physical challenges and the toll the disease took on her body. In 1993, she gave birth to twin daughters whom she loved dearly. She referred to this as her greatest accomplishment.

Carol was far too young when she died in 2002. But I know if she could have traded those precious girls for a “normal” life without the handicaps, heartache and suffering, she still would have chosen to suffer with FA.

For her, that pair of hearts she was dealt was the only way to play her hand.

Renee Collins is an assistant professor of journalism at Adrian College.

Copyright 2010 The Daily Telegram. Some rights reserved

I’m addicted to newspapers.

Not just writing for them but the smell of them, the feel of them. As a kid, I even liked to eat newspapers—I’d tear strips from the TV Guide pages and chew on them. I have my favorites, of course. The Daily Telegram, The Washington Post, USA Today. They’re all well-written, if a little lighter than back in the old days.  Plus, of course, they have the smell.  In fact, one of the first things I do when I get my Telegram out of the mailbox—after checking to see who died—is put the paper right to my nose.  Not because my eyesight is failing, but because of that smell. That wonderful, distinctive odor of newsprint coated in ink.

I am transported back in time.  As a kid growing up in Tecumseh, I grew up reading newspapers. My folks took The Detroit News and sometimes The Free Press, and we always read the weekly community paper, The Tecumseh Herald. My dad loved to read the paper—our big kitchen table seemingly always was littered with newspaper sections in various stages of disarray.

Even then, I loved that fragrance.

In fifth grade, our class visited The Toledo Blade—”One of the nation’s great newspapers.” The 40 years that have passed since then make me understand how my 10-year-old mind probably exaggerated the size of The Blade’s printing operation. But, it seemed massive. I remember only the vast room with high ceilings, and a behemoth machine with big, fat rollers slapping together on the newsprint so quickly that it roared. It was loud. It was dirty. And it smelled just like ink.
I fell in love immediately. After visiting The Blade, I imagined working in such a place, seeing something I wrote come off those shiny rollers.

Then, in the mid-1970s, the peak of my adolescence, newspaper reporting became really interesting, thanks to Bob Woodward and Carl Bernstein’s Watergate investigative reports. There followed a book, “All the President’s Men,” and, subsequently, a movie with Robert Redford and Dustin Hoffman playing the now-legendary Post staff writers. Watergate spawned a series of television programs that played off of the intrigue and adventure associated with investigative reporting, shows like “Lou Grant.” I pursued my interest in newspapers through high school and college, penning articles on such scandalous topics as the cafeteria menu for the week and the departure of the most popular priest on the Siena Heights University campus.

After awhile, my goal to be the next Bob Woodward fell by the wayside and I wound up working in a dress shop in Tecumseh. I had my master’s degree by then and some post-grad study, but I lacked the one thing I needed for gainful employment with a master’s degree in English: a teaching certificate.  Not long after, I responded to an ad in the late Mr. Mazoo circular for a receptionist at The Saline Reporter. At last, I had found a way back to the smell of the ink and the feel of newsprint beneath my fingers. That was almost 25 years ago.  The Reporter had a printing press then, the smell of ink and newsprint wafted throughout the building. When the press was running on Wednesday nights and Fridays, the whole building shook—kind of like it still does today when gravel haulers are traveling Michigan Avenue.  Although the press was sold long ago and its berth remodeled to make way for the technological advances in printing and publishing, sometimes I can still sense that ink smell.  They say that the sense of smell is one of the most powerful memory-joggers in the body. I believe it. Pressing the front page of The Daily Telegram to my face immediately takes me back to my career in community newspapers, the sight and smell of those printing presses and the early years working with Paul Tull and Tom Kirvan at The Reporter. My memories are fragrant images of stuffing inserts, learning to type stories on an Underwood manual typewriter, and watching the newspaper roll off the press. Mostly, the smell reminds me I had a chance to live my dream.

I’ve tried to build my career around my own personal mission: to tell the stories of as many people as I possibly can before I die. But once I’ve breathed my last, I hope my editor will have enough wherewithal to roll my remains up in several sections of The Daily Telegram Sunday edition, complete with all its advertising inserts, and then lay me down to rest. Make sure the front page is close to my nose. I can’t think of a better way to go for an old beat reporter—wrapped in newspapers like pub-style fish and chips.

Just don’t forget the Guinness.

The bigger boys and a couple of girls were scrimmaging full-court style, still playmates, these boys growing into men, caught on the tender edge of adulthood. They look young, 14 or 15 maybe, half have taken off their shirts signaling a split from backyard playmates to competitors.

They raced, sylph-like, back and forth, shouting at each other, not quite men, but seemingly eager to get there. At

night they drift off to dreams of being the next Isaiah Thomas or Michael Jordan, leaping into the air to slam one into the basket, the spotlights gleaming, the fans screaming.

Perhaps Isaiah is inspiring our young friend, again attempting to sink a basket, leaping and jumping, then bending down to dribble under each leg, imitating the pros. Shoes squeak on the polished wood, the shrill sound of stops and starts, quick moves from side to side. Two men watch from the sidelines, crouched, Indian-style, studying technique, planning strategies, calling fouls, perhaps seeing what kind of players these boys may one day become. The little guy is forced out, now, as the big boys practice free throws.  Just the right movement of knees and wrists, the proper propulsion to knock the ball gently into the basket.  Too much power, it bounces off the backboard. Too little, it falls short .Once again, the players run back and forth, each taking a role in the game, trying to blend into a  single team personality. Their lives are distant from ours.   These boys are standing at the edge of summer vacation, their worlds no bigger than the basketball court in the high school gym, their concerns no greater than how much practice time they can squeeze in before going home to take out the garbage and mow the lawn.  There are no such timeouts for adults, no summer vacation filled with games and bicycle rides and forts in trees. It’s the great irony of life—to spend so much of our childhood wishing we were older, and so much more of our adulthood wishing we were children, and longing for the sweet safety of playtime, of lying in the backyard staring at the clouds for no particular reason except that it felt good.

Their enjoyment of the game, of sprints up and down the court, of a world that exists only inside the boundary of the court is all that matters. For their parents, days of summer are long forgotten, replaced by worries about the mortgage, the car payment, if they will even have a job tomorrow. how they will fund braces for these soon-to-be men so that they can step into the world with perfect Hollywood smiles, walking billboards of parental sacrifice. All parents want their kids to have better than they did—the competitive spirit of basketball is translated into an unconscious need to be recognized as better parents than their own had been.

The quest for perfect children and the overpowering enjoyment of the game swirl around the court, played out in an elaborate succession of leaps and shouts; clad in Nike wear, the players show off NBA-inspired moves, fortifying their parents’ dreams.

In the bleachers, parents watch, shouting encouragement to their sons, criticizing the referee who dares to call their child on a personal foul, playing the role of protector and defender, unwilling to let their son be hurt by a bad call, blinded to the lesson of accountability that comes with breaking the rules of the game.
Some of these boys will absorb the lessons of life with the skill reserved for sinking three-point shots. Others will huddle beneath the protective armor of parents whose children never make mistakes. Most will grow up and watch their own sons and daughters struggling to reach the rim, praying the ball will tip ever so slightly into the basket.

They may remember the enjoyment of the game, and finally see the lessons they learned as young players: there are rules to govern and penalties for breaking them; there are rewards for teamwork and punishment for discord; there are winners and losers. Most importantly, there is the lesson of life: it’s not whether you win or lose, but how you play the game—inside the lines or out.