Growing up as a boy in Staten Island, NY, my father was someone who loved to be in the outdoors, despite our city life existence. He was always planning family camping trips in the summer for my mother, sister, brother and I. What great memories I have of trips to Yellowstone National Park, the Badlands, Teton National Park and the Great Smokey Mountains.
It was the summer of 1968, as a young boy of 11 years old, during our trip to the Great Smokey Mountains that I first noticed it. My dad was having trouble putting up our tent. He could not seem to lift the canvas up to the sprocket to secure the tent. He didn’t seem to think anything of it, yet I knew it bothered him.
Immediately upon returning home from our trip, my dad climbed down the stairs to our basement to lift weights in hopes of building up his strength again. His strength did not improve.
I remember seeing the concern on his face as he spoke to my mom. This led to his many trips to the doctors’ offices and many tests. Finally he contacted a high school classmate of his who had become a physician at the National Institute of Health in Washington DC. After a battery of tests, the diagnosis came back— a very rare muscular decease called Nemo Rod Myopathy. At that time, the NIH data showed that only 50 people in the United States had been diagnosed with this disease. The team of physicians treating my father said it was not very aggressive and his life span could be another 25-30 years. At the time he was 36 years old.
The disease progressed much more rapidly than original diagnosed. Over time my dad lost his ability to walk without help. First he needed the assistance of a cane, then a wheelchair. Being the positive person he was, he rallied the family around him. We all became caregivers at very young ages. We became experts on how to drive the wheelchair, use a hoya lift, and even put on surgical gloves to provide suctioning for fluid in his lungs.
I saw how hard my dad worked just to do the simple things in life, like eating and breathing. His attitude always remained positive, despite all of his physical limitations. He always had time for my siblings and me to discuss schoolwork or any social issues we were having. Toward the end of his life he lost his voice and we had to learn how to read his lips to communicate. In September of 1973 he passed, with his mind intact but his body had lost all muscle function.
I look at back at those days and draw strength from the lessons learned. These lessons are applicable today as I see that fear has become a part of many peoples’ lives during this pandemic.
Many people are anxious, or are experiencing depression. So I ask us all to take a step back and look for the silver linings in our lives. These silver linings are the people who impact our lives for good and have shaped us into who and what we are today. We’ve learned valuable lessons from their strength, positive influence, resilience and perseverance in the face of severe challenges. If those people are still with us today, reach out to them. Reconnect. Tell them you love them. During these stressful times we need to lean on each other. And if some of those people are not with us today, take a minute, look to the heavens and smile.