Living and dying

“We can’t change the cards we are dealt, only the way we play the hand.”

                                                                                          –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.