Many of our Chapter’s volunteers generously donate money to our mission, and some give their talents, but one of the most precious gifts one can give is their time. Our August 2022 Volunteer of the Month Carol Enos clearly understands this need.
Most of the people who make the choice to volunteer with The ALS Association Greater Philadelphia Chapter do so because of a personal connection to ALS. Carol Enos had a different kind of personal connection, a 30-year friendship with Chapter nurse Gail Houseman.
Carol and Gail worked together at Friends Hospital in Philadelphia and stayed in touch after Gail joined the Chapter over 20 years ago. In her time as a nurse, Carol had met some people with ALS and knew about how the disease devastated a person’s body physically. She also knew that a disease like ALS did not just impact the person who had been diagnosed with it, but that it had an effect on a person’s entire family and network of friends.
Later in her career, Carol also worked with hospice, where she met others living with ALS. Unfortunately, she couldn’t give them a cure, but she could give them comfort and compassion, which eased some of the physical and emotional burdens of the disease and let her patients know that somebody truly cared for them as a person.
When Carol retired, she looked for ways to volunteer and she once again went back to her personal friend Gail who said, “I have a way you can volunteer.” Gail told Carol about the Chapter's Visiting Volunteer program where volunteers are matched with a person living with ALS to provide companionship and assistance. It fit with Carol’s training and experience, but, more importantly, Gail knew that Carol had the heart needed for this role.
Gail linked Carol with a local person living with ALS who had moved into a residential home for independent living. Within moments, Carol and her new friend bonded as if they’d known each other for years. They had planned for Carol to sit and visit, and they would end up talking for hours.
As a Visiting Volunteer, Carol would always lead with empathy and with an ear towards listening, but she also helped with day-to-day tasks, like cleaning the cat's litter box, putting up Christmas decorations, and getting the mail. They were Thursday friends and their Thursday time was valuable.
There was a bistro at the residence where Carol’s new friend lived, and when her friend’s ALS symptoms worsened, Carol would take a picture of the menu and then go pick up food for lunch so that their visits would continue as they always had, even while the disease continued to take its toll.
When the COVID-19 pandemic hit, Carol’s role as a Visiting Volunteer changed even if her commitment to the cause never wavered. Carol continued to talk with her ALS friend on the phone and would help with her shopping and drop it off for her.�
The calls continued in their familiar ways, but, one day, the calls stopped and the conversations went quiet. Carol’s ALS connection passed away during the pandemic, though not from ALS or COVID-19. When Carol’s patient passed away, her friends notified Carol because they knew how important Carol’s kindness had been and they made sure she was able to be part of the funeral.�
As a nurse and former hospice worker, Carol knew the realities of a disease like ALS. She was even more in tune with the reality that nobody gets through life alone and all of us need someone by our side in one way or another.�
Gail has paired Carol up with another person with ALS, and Carol is continuing her service as a Visiting Volunteer. She gives the same patience and compassion, but she knows that every person is different and has their own unique needs. They will get lunch together and go shopping, and Carol finds a way to help make life just a bit more normal and kind than it might be otherwise.
“Being a Visiting Volunteer makes me feel like I’m doing something useful,” said Carol. “It just feels good to be able to be there for someone and to be a positive in somebody else’s life. It is very satisfying.”
Through her experience with the Chapter, Carol has made her own friends. She has attended meetings with other Visiting Volunteers and learned how everyone has their own unique relationships and stories. Every person with ALS is different and they all are their own person beyond the disease. They are more than ALS.
Carol’s advice to anyone who wants to be a Visiting Volunteer or who just wants to be there for a loved one with ALS is to be a good listener. Each of the patients she has spent time with has wanted to tell her their stories and she gives them the gift of listening to every detail.
ALS is a challenge for every person and for every family. Carol tells families, “Focus on the positives. People have bad days, and if they have a bad day around you, that means that you are someone they can feel safe with. Be honest and show that you love them and care for them.”
Thank you, Carol, for setting an example for how to be a compassionate listener and for giving the most cherished gifts of all: your time and your attention.