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

                                                                                          –Randy Pausch

When I first heard that quote from the late Carnegie Mellon professor’s “The Last Lecture,” my late sister Carol Lapham came to mind. She developed  Friedreich’s Ataxia, a degenerative, neuromuscular disease affecting the muscles and the heart. “FA” is an autosomal recessive genetic disorder, meaning both parents must carry the gene if one of their offspring has the disease. The rarity of FA was once described by a doctor in this way: he told my parents the odds are about one in two million of two carriers getting married and having children. Because they both carry the gene, 25 percent of their children developed the disease. In our family of eight children, two of my sisters were that 25 percent.

Much more is known about “FA” today than when my sister, Carol, 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, but they knew 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. She made it just beyond her 42^nd birthday but my parents did not know that in 1964. 

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 afflicted 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, the “ataxia” of FA. 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 couldn’t change having FA, but she chose to live her life to the fullest despite the physical challenges and the toll the disease took on her body. She gave birth to twin daughters whom she loved dearly in 1993, which she referred to as her greatest accomplishment.  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.