Courage is not the absence of fear. It’s not being completely unafraid. Courage is having apprehension and hesitation. Courage is living in spite of those things that scare us. Courage is the faith that some things will change and others never will. It is the belief that failure is not fatal, but to carry on when it is almost certain.
Though I had never met him in person, Scott and I became quick friends. At age 4, Scott was diagnosed with myotubular myopathy, a rare form of centronuclear myopathy, which causes profound loss of muscle tone and a weakness of all skeletal muscles. The disease is progressive and cruel. Common symptoms include drooping of the upper eyelids, facial weakness and foot drop, blackouts, as well as increasing weakness of the limbs and upper body. It is a disease for which no treatment is available and whose victims often die young of unarrestable pulmonary complications.
Scott and I met through his father. Mike at the time was an accomplished attorney and security expert. We were close professional colleagues and over the years we frequently had the opportunity to do volunteer work together. Regardless of the matter at hand Mike always found time for his family. Rather quickly I noticed his frequent communications with his son, Scott. Curious to know more I questioned him about him and their relationship. Among other things, without hesitation and almost matter of fact, Mike shared with me that his only son had myotubular myopathy. Mike told me that Scott’s life in a wheelchair began in junior high school and though he had periods of what appeared to be remission, Scott’s condition was slowly and painfully deteriorating. Upon request, he introduced me to Scott via email.
Over a period of something less than a year, Scott and I exchanged many emails and discussed many topics. Though much younger than I, we had something very much in common, the love of cooking. I also learned of his profound love for life. In spite of his challenges and he had many, setbacks and periodic hospitalizations, his attitude was up-beat and his communications were positive and full of spirit. “You’d never know he was having a hard day,” claimed Lisa Rosen, the Education Program Manager at the Rehabilitation Institute of Chicago, where he spent much of his time (as both a patient and volunteer). In spite of his difficulty speaking, “He’s always telling jokes, making you laugh” she said. And that was Scott—the consummate joker, comedian and motivator. So much so, to the staff and patients at RIC he became known as the Determinator. Others noticed him as well. In 2011, the Muscular Dystrophy Association named Scott the recipient of its Robert Ross National Personal Achievement Award for 2012. He passed away the day (July 11, 20111) he received the letter informing him of the award.
It appeared to me and many others I later learned, Scott lived life as if he had no disabilities or impairments. He behaved as if his disease and the burden it imposed on him was merely an inconvenience. He lived life as many of us should—thankful and full of joy. To remind us of that, he closed each email he wrote with his own inspiration:
Spread smiles to everybody, everywhere, each and every day. Eat well, laugh often, live and love life.
Scott possessed many virtues but among them, it was his courage that was most revealing. He had a settled disposition to feel appropriate degrees of fear and confidence when facing all that challenged him. Though his pained and crippled body bound him to a wheelchair, he had the courage to spread smiles, laugh often and live and love life.
Adapted from Mr. Ferraro’s book, Virtues & the Virtuous: Inspiring Lessons and Insights about Virtue, Virtuosity, and the Essence of the Human Spirit.