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National MS Society, Greater Carolinas Chapter

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Bike MS: Historic New Bern Ride 2014

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Mr. Tom Andrews

880 percent of goal achieved.

Goal: $1,000.00
Achieved: $8,801.00

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My Sister Joyce

When I was in Central New York a few years ago, attending a graveside service for my mother who died at age 93, and seeing my sister Joyce's headstone next to our parents now dual headstone, I realized again what an enormous impact Joyce's long, courageous struggle with Multiple Sclerosis had on our family, and how truly positive that impact has been, despite its tragic end.

Joyce was diagnosed with MS in 1974, when she was 27 years old. For the next 20 years she experienced the exacerbations and remissions of symptoms that characterize her form of this disease. The symptom that led to the diagnosis - a mild hearing loss - disappeared almost immediately and never recurred. The rest of the symptoms then began slowly, at first affecting only slightly her ability to control her left leg while walking, and her balance. Over the years she experienced many "flare-ups," as she called them. After each one, she recovered almost completely, but never entirely. So little by little her condition in "remission" became more and more impaired. Eventually the disease left her unable to walk, unable to transfer on her own, unable to write legibly, with slurred speech and impaired judgment and cognition. Prednesone, the only available treatment for flare ups at the time, rendered her delusional for several days. The worst exacerbation left her in a coma for three weeks and in need of nursing care for another five months. Yet she recovered to continue to lead a life in which she remained as active as she could possibly be. In early 1994 she was found dead in her apartment, either from a massive MS-induced seizure or from MS's gradual destruction of the nerve paths that supplied the impulses to keep her heart beating.

Through all this Joyce maintained an incredibly positive attitude. What we all admired most was her ability at all times to balance a fierce determination to maintain as much independence as she could, with an undemanding acceptance of the assistance she needed. Her desire for independence was firm, but gentile - never hostile or off-putting to those who offered more assistance than she wanted. Her acceptance of help was quiet and realistic - never demanding or complaining about the need for it. Oh, she cursed the disease itself on many occasions, but she never expressed any self-pity or resentment over her lot in life.

What amazes me as much as anything is how much of life she was able to experience and enjoy right up to the end. She stuck with her career as a teacher of developmentally delayed young people until her inability to meet the demands of the classroom motivated her to move to a supporting position in her school. She stuck with that position, driving herself to work in a car specially equipped with a hand-controlled accelerator and brake pedal, until the after-effects of an exacerbation ruled out any steady work. She still remained active in her church, even joining the church choir on two singing trips to Europe at a point where her symptoms would have caused most people to stay home. The day she died she had arranged her own transportation to church, using the special public transportation options available in the Minneapolis area; she had sung in the choir; and she had returned to her apartment using the same system on her own.

Joyce could not have done all this without the extraordinary support of the MS community in the Twin Cities, the love and encouragement of the members of her church and her friends, and a remarkable pair of agencies in that area that are committed to empowering people with disabilities to maintain all the independence of which they are capable. To the very end she lived in her own apartment in a building that was entirely handicapped accessible, constructed by the National Handicapped Housing Institute. On the premises, an agency called Accessible Space provided services carefully tailored to the needs and abilities of each of the residents, most of whom were young and middle aged adults with a variety of disabilities. These services were provided centrally, on a schedule and on demand, so all the residents received virtually all the benefits of private duty personal care at a fraction of the cost.

Joyce died with her boots on - literally and figuratively. I have never admired or been as proud of any human being as I am of my sister for the way she handled 20 years of the devastating effects of multiple sclerosis. In my eyes she went from the pesky little sister of my childhood to a friend and inspiration throughout her lifetime. She gently taught me to respect her own abilities and independence and to substitute an attitude of collaborative empowerment for the big-brother protectiveness that had been ingrained in me when she was little. She taught me more about faith and courage than anyone I have ever known.

This is why I ride 150 miles on a fall weekend every year, and do my best to raise as much money as I can from my sponsors. I get much more out of the MS 150 event than I give. The warm encouragement and support of the people across the State with whom I have worked in our court system, of the members of my church, and of my family, neighbors and friends, combined with the enthusiasm and dedication of the other riders, the volunteers and the staff, all make the MS 150 a truly special part of my life each year. Thanks to all of you who make this possible. Because of these and other fundraising efforts, the treatment of the symptoms of MS has come a long way, just the years since my sister died. If we keep up this good work, we will see the day when the devastating effects of MS are ended for good!

 

 

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