Someone to look up to

 

For over a decade, Amanda suffered from a very rare genetic disease called Friedreich’s Ataxia. According to the fact sheet about the illness on the National Institute of Neurological Disorders and Stroke website, “in Friedreich’s ataxia the spinal cord and peripheral nerves degenerate, becoming thinner. The cerebellum, part of the brain that coordinates balance and movement, also degenerates to a lesser extent. This damage results in awkward, unsteady movements and impaired sensory functions. The disorder also causes problems in the heart and spine, and some people with the condition develop diabetes. The disorder does not affect thinking and reasoning abilities (cognitive functions).” 

 

In other words, the disease traps a person within her own body. 

 

By  the end of her life, Amanda suffered from slurred speech, severe pain, loss of motor skills and wheelchair confinement,  yet, she kept the disease from defining her or confining her spirit. Instead, she was a woman who glowed with faith, kindness and peace. She was young, just 11 when she learned that she would likely never grow old, or do the things normal women take for granted, like get married or have children. Instead of plunging into self-pity, self-destruction and the rejection of God, as I may have done, Amanda forged ahead doing everything that she would have done had she been healthy. She graduated from both high school and college and surrounded herself with friends, books and art. Above all else, she was a model for faith and for courage. 

 

This funeral was my first experience with an actual viewing and as I stood there, stunned at the body below of a person I hardly knew,  I couldn’t fathom how this amazing soul had once been inside the beautiful, lifeless figure in front of me. It made me wish that she had never suffered, and that I had been able to do something. There was so much loss in that room, so many regrets, and so many questions as to why. 

 

The preacher at one point said that Amanda had the ability to attract angels, meaning that she brought out the best in the people around her. She demanded something better out of others and inspired the type of courage that can only be found deep from within. 

 

I  am honored to have known Amanda from a distance. To learn more about Friedreich’s Ataxia and ways you can help fund research and spread the word, visit http://www.curefa.org/.