I met Paul fifty years ago at a party playing “Twister” with friends from high school. I was immediately attracted to his blonde hair, blue eyes, and boisterous laugh. It was pretty much love at first sight. We were together in high school, got married soon afterward, and eventually had our son Charlie. Our family of three lived in a safe, comfortable suburb of St. Louis, MO, and we continued to have a mostly harmonious relationship built on common interests, with family at the center. Our careers were also a pivotal part of our lives. Paul worked for 24 years as the Director of Maintenance for a local college and I was an early childhood teacher. We loved to travel to our lake house, visit the beaches of Florida, and spend time with loved ones.
Then our world changed. Paul was diagnosed with a rare neurological disease. This devastating news was NOT in our long-range plans! His disease rendered him impulsive, imbalanced and a fall risk, and he needed continuous surveillance. He was forced to take early retirement and I choose to take a permanent leave from the teaching job I loved to become a full-time caregiver. There are limited resources available for caregivers of persons with debilitating ongoing non-life threatening diseases; therefore they learn to live a life of isolation in a small world. Paul and I had been a very social couple, but now we were almost exclusively living a life of isolation.
In March of this year, Covid19 became a reality for everyone. Their worlds became smaller; more isolating. Ironically, however, my small world has gotten larger! People who are now living in my small world of isolation have become imaginative. Covid19 opened up a world of resources when other people, stuck in their homes began to reach out through technology. Since the Shelter-in-Place order, I have been asked to join in several sessions using Zoom, Google Hangout, and other types of communication. I was social again with family members, caregivers, work associates, and girlfriends.
I realize in the past I was often oblivious to the needs of others, but sometimes out of tragedy, a new realization comes to us. So while I have compassion for all of those suffering from all the ramifications of this terrible pandemic, I also feel it may bring a new understanding of the hardships that people have with the isolation of chronic illness and their caregivers. As we return to our normal routines and resume our lives I am hopeful people will have a greater understanding for the isolation Paul and I are experiencing, but more importantly act on the need to be there for their relatives, neighbors, and acquaintances who may welcome a phone call or message to break-up the day.