Bill Fox was a legend before his story included ALS. Today, his wife Maryellen Fox is continuing his legend and inspiring countless others as the Chapter’s March 2023 Volunteer of the Month.
Maryellen and Bill’s 46-year marriage can’t be defined by ALS alone. The love and travels they shared defined the way that they would battle ALS though: Together. The lessons of marriage shaped the kind of caregiver Maryellen became and motivated her to use her experience to be a valuable volunteer for The ALS Association Greater Philadelphia Chapter.
As a volunteer with the Chapter, Maryellen has traveled to local schools, including Father Judge High School and Archbishop Ryan High School, to share her story with students and staff to raise awareness about ALS and instill in others the value of caregiving. Teachers and students are inspired by Maryellen and carry her message back to their communities.
Maryellen was not familiar with ALS before her husband was diagnosed in September 2019. She knew about Lou Gehrig and the Fox family had participated in the Ice Bucket Challenge in 2014, but they were not personally connected to the disease. When Bill began to experience fasciculations, otherwise known as muscle twitching, in late 2018, ALS was far from their minds. His general practitioner did not think it was serious at first.
Then Bill noticed his golf game was deteriorating. In May 2019, he was experiencing shortness of breath while on walks with Maryellen. An orthopedic surgeon noticed something unusual during an examination and sent them to a neurologist who did an EMG and diagnosed him with ALS. It took almost 10 months to get an official diagnosis.
Those ten months of searching for answers were very difficult for Maryellen and Bill, but they knew that they would face this challenge together. For nearly half a century, they had lifted each other up, celebrated each other’s successes, and bonded over their four children and nine grandchildren and their community involvement.
Bill was a teacher and legendary basketball coach at Father Judge High School for 29 years. The gym was named after him in 2006. Bill left teaching and then coaching and became the Assistant Director of Commerce for the City of Philadelphia and a few years later was employed by the School District of Philadelphia as the Director of Real Estate. Maryellen was accomplished in her own right as a paralegal in both the District Court of the Eastern District of Pennsylvania and the Third Circuit Court of Appeals. They both retired in 2018 and had plans for the future ahead of them. They had visited 39 states before Bill learned he had ALS and then another 5 after his diagnosis before the COVID-19 pandemic limited travel. While they planned another trip, Bill asked, “Why are you in such a hurry?” It is a question that Maryellen thinks about often today, especially as she teaches younger people about the need to savor every moment.
Fighting ALS together did not mean fighting it alone. The Greater Philadelphia Chapter provided an evaluation so that they could make improvements and Bill could stay safe at home. Chapter nurse Gail Houseman, RN, CNS-BC, connected Maryellen and Bill with the equipment loan closet. Social worker Jayne Etskovitz, MSW, LSW, answered questions and solved problems as the symptoms progressed.
Maryellen also received a great deal of comfort and guidance from her caregiver support group. As Bill’s symptoms worsened and Maryellen’s responsibilities grew, having a network of caregivers made those challenges more manageable.
When Bill was first diagnosed, he was told to expect to live two-to-five years longer. Instead, he passed away after 22 months. Much of that time was spent isolating from the wider world due to the COVID-19 pandemic.
Today, Maryellen carries Bill’s legacy through her efforts as a volunteer. She shares her story to empower others. Her experience goes beyond the realities of ALS to instill the lessons of making the most of your life, your relationships, and your time. When she goes to high schools, she wants young people to know that they can help others by running errands, mowing the lawn, raking leaves, putting trash cans out, or planting flowers. Maryellen has been involved with many Chapter events, but she says that the most valuable thing you can give to others is your time.
As a volunteer and speaker, Maryellen hopes that her story will inspire others to volunteer their time for the ALS cause and to value the role of caregivers. Maryellen also wants the world to know that the she is forever grateful for the support from her children and their spouses and family and friends during their ALS journey. She has forged lasting relationships with other caregivers and received encouragement from students who have heard her speak. With everything she does, she keeps Bill’s legacy alive and ensures that everyone knows that his life was much more than ALS.
Thank you, Maryellen, for sharing your time, your story, and your compassion with us. The ALS Association Greater Philadelphia Chapter is proud to call you our Volunteer of the Month.