Squibs » Family and Friends http://reneecollins.net Renee Collins' blog Sat, 15 Oct 2011 17:25:54 +0000 en hourly 1 http://wordpress.org/?v=3.2.1 Living and dying http://reneecollins.net/2010/01/13/living-and-dying/ http://reneecollins.net/2010/01/13/living-and-dying/#comments Wed, 13 Jan 2010 18:40:10 +0000 Renee Collins http://reneecollins.net/?p=59 “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 42nd 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.

]]> http://reneecollins.net/2010/01/13/living-and-dying/feed/ 0 My Siena: By Renee Lapham Collins, ’80 http://reneecollins.net/2009/09/16/my-siena-by-renee-lapham-collins-80/ http://reneecollins.net/2009/09/16/my-siena-by-renee-lapham-collins-80/#comments Wed, 16 Sep 2009 15:11:47 +0000 Renee Collins http://reneecollins.net/?p=22 I’m not sure how it all started, but somehow, Siena Heights University became a family tradition. My mother, Norma Boxrud Lapham, studied art at Siena in the mid-1950s before she married my father. Growing up, we’d often drive past the campus, with its stately red brick buildings and cupolas and I dreamed of going to school there, too.
Eventually, four of my seven siblings would seek Siena degrees: Mary Catherine Lapham, ’85, Lisa Lapham Huested, ’87; Anne Lapham Micol, ’99, and John Lapham, ’00.
In the fall of 1980, just months after my Siena graduation, my sister, Catherine, started her freshman year. An excellent student, she majored in business and computers — the latter was something pretty new at Siena in those days.
But, in 1982, Catherine developed Friedreich’s Ataxia, a slow progressive disorder of the nervous system and muscles. A genetic disease, FA results in the inability to coordinate voluntary muscle movements. This ataxia is caused by the degeneration of nerve tissue in the spinal cord and of nerves that extend to the arms and legs. Our sister, Carol, also suffered with FA and died from complications of the disease in 2002.
As a student, Catherine consistently gave 110 percent to academics. When she found she had FA, she was determined to do everything in her power to fight it. Late in 1983, she underwent a grueling back surgery at the University of Michigan. Two titanium rods were attached to the vertebrae in her spinal column and ratcheted to straighten her spine. Temporary paralysis and months of therapy followed.
Back at Siena, Catherine threw herself into her studies. The surgery and subsequent recovery proved to be a setback for her academically — it would add a year to her college career. But it proved to be one well-spent as she had her pick of job offers right out of school.
By the time she graduated in May 1985, I had been an adjunct faculty member at Siena more that two years. Catherine wanted me involved somehow in her graduation day and invited me to place the baccalaureate hood on her shoulders after she received her diploma during the annual commencement ceremony. As I watched her walk toward me with the aid of a wheeled walker, straight and tall, her steps measured and strong, I marveled at her strength and determination to overcome her physical disabilities and graduate.
Twenty years later, she’s still full of gritty determination, even as this debilitating disease takes its toll. She has made her home in St. Louis for more than 15 years and recently retired from Electronic Data Systems. She’s active in her parish, works with a number of nonprofit groups like PAWS and with support groups for people affected by FA.
She continues to inspire me with her strength, despite the adversity of her daily life, and shows me always there is much more to a Siena education than what is learned from textbooks and the classroom. Perhaps St. Catherine of Siena said it best when she wrote, “Nothing great is ever achieved without much enduring.”
First published Oct. 19, 2006
Mary Catherine Lapham receives her bachelor of arts degree from Siena Heights University in May 1985. Sr. Sharon Weber and Audrey Parker help keep her steady as her sister Renee Lapham Collins, adjunct faculty in the English Department at the time, places the academic hood on her shoulders.
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