Muscular Dystrophy: From Immobility to Opportunity
Many things are so second nature that we never give them a second thought. Your legs take those steps out the door in the morning, and your thumbs dance across the phone screen to text your friend. Now imagine losing the ability to take a step or to move your fingers. That is muscular dystrophy, a devastating disease that eats away at the body’s muscles and leaves the affected individual immobilized. It primarily affects male children, with studies indicating 1.3 to 1.8 cases for every 10 000 boys.
My uncle, Frank Ritacca, was born with the condition. He went from a walking toddler to a weakened youth in a wheelchair by the time he was a teenager. The prognosis was not a good one: a life expectancy in the early 20s with increasing debilitation.
In December of 2015, my uncle celebrates his 52nd birthday. He has been a lifelong inspiration to his family, his friends, and me. A smiling face in the midst of adversity, his optimism and humour make the man with a muscle-weakening disease the strongest man I know.
Many years ago, severe conditions like that were death sentences. But one of the greatest, if not the greatest, aspects of advancing technology is the improvement in quality of life for those who need it most. Frank’s wheelchair has allowed him some mobility, and his healthcare equipment has allowed him to breathe and be fed. Yet those are the basics for survival, and we humans want more than that from our lives. Through buttons operated via his knees and his finger, Frank is able to fully operate a computer.
Companies such as Invacare offer devices for those with limited mobility. Their MK6i remote programmer attaches to Frank’s wheelchair and connects him to the on-screen mouse of his computer. A man who could not write now sends emails and posts on Facebook via his on-screen keyboard. A man who could not walk since childhood now meets people from around the world and has a great group of friends to chat with. A man who lost his ability to make things or use his hands now creates websites and videos, and destroys his competition in chess, Scrabble, and Settlers of Catan. Of course, he will always make time to binge watch Star Trek on Netflix. Technology has allowed for a much greater harnessing of human potential, moving discussions away from limitations and towards capabilities.
In a world where a person’s merit is measured by their contribution to society, it is easy for someone like Frank to feel disadvantaged and weak. Technology has given him and others like him the opportunity to do more. Yet just like for all of us, that technology is merely a tool. It is his optimism, determination, and unyielding strength that make Frank who he is. My uncle is a techie, a Trekkie, a gamer, a friend, a beloved member of the family, and an invaluable inspiration to us all.