At the tender age of 21, living in a universe with far too many parallels to present day, I took a job – which turned out to be more than a job — to support myself in college by working as a caregiver, cook, driver and constant companion to a man who as a young adult had been infected by the awful poliomyelitis virus. This is story about two persons: Teacher and Student.
Teacher: When I first met Michael, he had already been persevering this condition for twenty years. Polio, like our current virus, produced symptoms in less than 1% of those infected, and only a small fraction of those were severely impacted. Michael’s symptoms were extreme. He had no use of his arms, although he managed to use one hand, held in a sling, to write. Bound to a wheelchair, was able, if lifted, to walk several steps. This major feat enabled him transfer to a bed or toilet — always with 80% of his slight frame supported by me. Most significant, however, was that paralysis had reached his diaphragm; he had completely lost the ability to breath autonomously. He drew each faint breath consciously using only his neck muscles – amazing. To breath while sleeping he lay each night strapped to a bed that rocked constantly in a seesaw motion to raise and lower his diaphragm.
Student: As an able-bodied 20-year-old, I learned very quickly how many normal tasks most of us accomplish without thinking. My job, plain and simple was to do all those things for Michael — only backwards. I re-learned all the familiar tasks as mirror-images of what I would normally do for myself. Buttoning shirts, tying shoes, eating, bathing – everything. If there was an itch, I’d scratch it. I drove him everywhere — to dinner, the theater and social events. I dragged him in his wheelchair into the corn fields and across the beaches of Long Island. I even traveled with him by air to his summer home in New York. He was paralyzed, but definitely not immobile. In my senior year of college, I truly learned more as Michael’s employee than I did in the classroom. But beyond my unique experience assisting Michael with his daily routines, I learned one of my most cherished life lessons: Experience is mainly what you make of it. In Michael’s case, having contracted polio less than two years before Jonas Salk’s vaccine, he could have been bitter and insular. He was the opposite. Michael needed someone like me to enable portions of his life that had been denied by the virus, but he needed no pity or charity. With the one hand that he could barely move, he wrote poetry; and until his passing in 2000, he edited and published a renowned poetry journal. One day I asked him in conversation, “How did it feel to be a confined to an iron lung for almost a year?” Drawing in the largest breath he could, Michael exclaimed, “Wonderful!”
Keep a positive attitude. Better times are ahead. 🙂
PS Spending time with a community of like-minded individuals is one thing I like to do to keep a positive attitude. My organization, GBMP, is putting on an event for passionate Lean practitioners to benchmark, share and chat. Join us for our Lean Spring Showcase on April 1.
This is a beautifully written post! Truly a critical lesson to keep in mind right now—thanks for the reminder.
This story is truly inspiring and shows how much you mean to Michael and everything you do for him! It is especially interesting when compared with COVID-19, individuals may feel lonely and powerless at the moment but it is important to surround yourself with those you love in these trying times. Lastly, I was curious about your program, GBMP, I may have to join you on April 1st as I am very intrigued. It seems like a great networking event that I definitely have interest in!
Evan – Thanks for your response. It’s funny how chase events like a summer job can alter a person’s trajectory – Bruce
This is such a touching story and really showed how important Michael was to you. It was definitely a job that turned into something a lot bigger than that, it turned into a great friendship. I have a friend who suffers from cerebral palsy and is confined to a wheelchair but no matter what he is positive about every situation. He is the most uplifting person and a lot more people need to have a positive attitude like Michael!
This was a touching story that really shows us that we have to have a more positive attitude. Michael is a true example of someone who still made the best out of what he could. He kept his head up when he could’ve been upset about the vaccine coming out two years later but instead he was joyful to be alive. We should all try to learn how to be more positive because it will make the world a lot better and bring us together.