March Volunteer of the Month
The ALS Association Greater Philadelphia Chapter was built on bedrock principles for serving the ALS community. Those promises, which we still honor today, include investing in research, being an advocate, and empowering all of those who are affected by this disease. All of those principles are linked together by the simple and vital act that connects everything at the Chapter – listening.
Perhaps nobody has understood the value of listening more than our March Volunteer of the Month, Valarie Schwarz.
Valarie’s father Charles was diagnosed with ALS in 1982. At the time, The ALS Association Greater Philadelphia Chapter was much smaller than it is today. In fact, Valarie and others would describe it as tiny.
It took some time for Valarie to explore the resources of the Chapter. Back then, the Chapter focused primarily on resource group meetings, which were frequently held at the home of volunteers Ben and Dottie Ohrenstein. Chapter President Ellyn Phillips’ husband Alan, who was diagnosed with ALS in the same year as Valarie's father, was still alive and the connection with the Phillies was just beginning. The Chapter had a long way to go to become what it is today.
When Valarie started attending group meetings at the home of the Ohrensteins in Wynnewood, PA, she did so without her parents present because they lived up in Bethlehem, PA. She went and listened. As a librarian, she knew the value of listening to others and for providing a space of understanding. To this day, she is very grateful to her co-workers and her supervisor at the Free Library of Philadelphia who gave her so much care and support while her father battled ALS. She recalled how her supervisor gave her a great deal of flexibility with her work schedule so that she could help with her father's care, especially when her father was dealing with a ventilator. At those meetings, Valarie learned from other patients and caregivers about their challenges and strategies. To this day, she still remembers the kindness of people with ALS like Jim Fitzgerald, who helped put her at ease and provide comfort to others.
In that time, Ellyn Phillips asked Valarie if she would serve as Secretary for the Chapter’s Board of Directors. Ellyn recently found Valarie's old minutes from those board and it brought back a lot of memories for both of them about the early workings of the Chapter.
Valarie’s father passed away from ALS in 1986. Soon after, Valarie was on extended sick leave following surgery and looking for more ways to help in her free time. The Chapter did not have email or a website then. Ellyn asked Valarie if she could take messages from the answering machine and call people back to help them.
It didn’t take long for the Chapter to grow to serve more people. A support group formed in Allentown at Good Shepherd Rehab Hospital one month after Valarie's father died, but Valarie and her mother still attended for several years. As always, Valarie started by listening.
As with the tradition of the Chapter, Valarie was leading by listening. Her talents were needed more than ever as the Chapter increased its service area to assist more families.
“We had a lot of territory that wasn’t really covered by staff,” said Valarie as she looked back on those early days. “People did not want to go to a support group yet. I would call people on the phone to see how they were doing. Often, I would talk with caregivers and share experiences to help them with their challenges.”
Those caregivers included people like Janet McNamara, whose husband Charlie had ALS. They were role models for living a good life with ALS and Valarie used their example to encourage others.
The Chapter continued to grow and Valarie grew with it, serving as the co-chair of the Patient Services Committee with Dottie Ohrenstein. Together they shaped the direction of care services.
The care services department took a new turn in the year 2001 when staff nurse Gail Houseman started the Visiting Volunteer Program. Valarie was a perfect candidate for this volunteer opportunity and, after seeing how successful the program became, she offered her help.
Since then, Valarie has assisted several people with ALS as a Visiting Volunteer. Most recently, Valarie has helped Therese in the Lehigh Valley. Together they go to the Walk to Defeat ALS, support groups, and even concerts. Valarie helps by doing many things, but nothing is more valuable than the time she spends listening. When Valarie is with a person with ALS, they know that somebody is really paying attention to their needs and wants. That is what makes Valarie such a vital extension of the Chapter’s overall identity and mission.
Along the way, Valarie has faced many opportunities and difficulties with helping those with ALS. “When I would call people, they would often ask tough questions,” Valarie recalled. “They would ask things like ‘How do I die?’ and I had to find the right way to respond. I wasn’t a trained a health professional, but I got a tremendous amount of help from the staff and nurses at the Chapter. I learned to be sensitive.”
Even though she was a librarian, very few of Valarie’s lessons were learned from books. She recalled how her mother dealt with her father’s ALS and the emotions and struggles that went along with watching a spouse face such a disease.
“Mom rose to the occasion of being a caregiver,” said Valarie. “One day, I saw that there was a suitcase next to her bed. ‘I want to run away from home,’ mom told me. Well one day the suitcase was across the room and then later it was in the closet again. It was her way of coping. I hope I could pass on that understanding to others who called and confided in me over the years.”
Valarie fits the vision and purpose of The ALS Association by placing a premium value on listening and on empathy. She hopes that her pain could lessen the pain of others. Through her many years of volunteering with the Chapter, Valarie has indeed lessened the pain of many people who needed an ear or needed a hug or needed a friend. Mostly, people needed to know that somebody understood and that they cared. Valarie Schwarz has always been that somebody and the Greater Philadelphia Chapter is a better place because she cared enough to listen.