BARRE — Robert Kershaw has spent a lifetime working on the legacy he will leave.
Kershaw, 68, is a caregiver, who began his vocation as a child. It continues to this day.
His story, “If I Die Before I Wake,” was self-published last year, and is a must-read for anyone who has been a caregiver, either as a professional, or more often, privately, for a loved one or friend. Kershaw’s book is published under a pen name, Eli Shaw.
His book is a tribute to the sympathy and compassion he has developed over the years for his charges, and the empathy he feels for other caregivers who selflessly “put their lives on hold” to care for someone else but who are largely “invisible.”
Kershaw said he found his calling at age 10 while living in West Warwick, Rhode Island, where he grew up.
“There was a neighbor that moved in and I thought he was Chinese and I was so excited to meet a Chinese person,” Kershaw said. “I told my mother and she said, ‘Invite him over for supper some night.’”
“So, I did, and after he left, my mother sat down and explained to me (he had) Down Syndrome. I was upset that ... because the neighborhood kids used to bully him. So I became his protector and his friend and we got to be very close friends,” he said.
Kershaw recounted how he went away to camp and when he returned, the neighbor had moved away.
“I told my mother that I wanted to do something in my life to make sure that people like him didn’t get bullied again,” Kershaw said. “I was the one who got bullied because I was his friend ... and they would beat me up instead, so I took the brunt of it.
“It was so overpowering for me, because it wasn’t his fault who he was. At an early age — I think I got it from my father — I had an empathy for people who had a disability or they were different through no fault of their own,” he said.
Kershaw’s early life experiences were further shaped by Cub Scouts and Boy Scouts and by 4-H youth and mentoring programs, both nationally and in Canada and Brazil, and awards he received for his commitment to caring causes. While still in Rhode Island, he started Camp Happyness for children who were previously not able to go to camp because of their disabilities.
Kershaw took the title of his book from an encounter with a person with AIDS, who died in 1992.
“Mark would frequently say, ‘If I die before I wake up, make sure you get everything in order,’ and he would proceed to give me a list of things I had to do,” Kershaw wrote in the book.
Kershaw went a step further, devoting a photo exhibition with personal testimonies of people infected with AIDS that was also titled “If I Die Before I Wake.”
The AIDS epidemic, which began in the 1980s and has infected more than 75 million worldwide since, became a touchstone for Kershaw in terms of the fear and backlash it generated against its victims. It would shape the way he viewed any illness or disability through his career as a caregiver.
Kershaw has since devoted his life to caring for people with traumatic brain injury, Alzheimer’s, mental illness, diabetes, cancer and a range of disabilities. He also has worked with the homeless and substance abuse programs.
Locally, he served with the Barre Community Justice Center and as a manager for ReSource recycling and youth education program in Barre. He currently works for Washington County Mental Health Services and has been a personal care assistant for an adult man with cerebral palsy for the past 25 years.
For Kershaw, his work has taught him the dangers of people — ignorant about the circumstances of an illness, disease, disability, misfortune or ethnic or cultural difference — attaching stigma to it and fanning fear and hatred.
“When you say homelessness, it’s a negative word because you don’t know where that person came from,” he said. “Right now, we have that Coronavirus pandemic, where automatically, there’s ignorance about that and fear that comes with it.”
For Kershaw, being a caregiver has been a lifelong learning experience about his own failings and finding his way in life to help others.
One example he cited concerned a client with a traumatic brain injury who wrestled with people who were trying to help him remember the past. “He said, ‘I need to find out who I am and they’re not helping me because they telling me who I was,’” Kershaw said.
“The book is about disabilities from the perspective of the caregiver. It’s all about my mistakes, my trials, my joys, my rewards — all of that — as much as it has to do with becoming a caregiver for someone else. The main idea of this book was to help me heal,” he said.
To contact Kershaw, email him at email@example.com