A legacy of help and hope for others
By Sandi Chapnick
As parents, when we faced the diagnosis of epilepsy for our son, Josh, we didn’t know where to turn.
My husband, Bruce, and I were overwhelmed. Josh’s neurologist gave very little information about epilepsy. He wrote the prescription for Josh’s anti-seizure medication and told Josh he could go back to playing soccer. However, there was no mention of the social impact of Josh’s epilepsy diagnosis and how everything in Josh’s life would change. I went to Barnes & Noble to look for a book to explain epilepsy. I bought one, but did not understand the terminology or what to do with it.
We didn’t know where to turn for help and there were few resources. We had to discover everything on our own, especially since, in 1996, the internet was still an emerging technology.
What we did find out quickly, however, is that epilepsy is socially isolating.
In December of 1996, Josh’s varsity soccer team witnessed Josh’s first seizure as the team traveled on the team bus down to Naples. A few weeks later, soccer season ended and so did Josh’s social life – no phone calls, no sitting together at lunch, no after-school fun. It was horrible for Josh, who loved being with people. He was very gregarious and loved to make people laugh and make them happy. Can you imagine in the fall of his senior year of high school he had to start over and make all new friends?
As his parents, it was heartbreaking.
Bruce and I found it so difficult to watch Josh be so lonely. He never really complained, but his mental anguish was apparent. We became his social companions on the weekends.
Josh, who was the first to drive among his friends, was now prohibited from driving for six months. In Florida, one must be seizure free for six months before being allowed to drive again. With the help of his medication, it seemed by June he would be able to drive again.
Unfortunately, finals week and especially the stress of his calculus final put an end to his high hopes. A seizure! Another, six-month stint of not being able to drive! A whole year!!
When our son Josh passed away from a grand mal (tonic-clonic) seizure in June 2008, we wanted to ensure that other families had the benefits that we did not have.
We established JoshProvides Epilepsy Assistance Foundation. We had been in the dark for so many years, and we wanted to bring light and awareness to other families through the good work of JoshProvides.
JoshProvides initially provided grants for transportation and anti-seizure medications (no longer available). Today, we have grown to meet the needs of those who are struggling with their epilepsy diagnosis by offering help and hope through our grant assistance program.
Nine years ago, we started the JoshProvides epilepsy support group for young teens, families and caregivers thanks to a mother of a 17-year-old girl who had recently been diagnosed with epilepsy. The mother came to JoshProvides, asking us to start a support group for young teens since her daughter, too, had been socially isolated. The epilepsy support group has become the JoshProvides family. We support one another through the hard times!
Living with epilepsy is tough, since seizures can occur anytime, anywhere, at any age.
While Josh’s last year and a half of high school was socially isolating because of his epilepsy diagnosis, Josh never allowed epilepsy to either define him or harden his heart. Josh’s life was spent giving to others in so many ways that we, his family, never knew about until after his death when we began to hear from so many people he had touched.
Once Josh arrived at the University of Pittsburgh, he reached out to people even more. His dorm room was across from the elevator, and he had an open-door policy inviting all to stop in and visit. I will never forget Josh’s phone call after his first month at Pitt, when he informed us that he had met all 900 freshmen in his dorm. One wonders how he had time to study and attend class if he spent 30 days meeting 30 new people a day. But that was Josh!
From preparing Sunday night chicken dinners in his toaster over for his floor-mates, to buying a single red rose for all his women friends on Valentine’s Day, to buying a birthday dinner for a new acquaintance, Josh was a special friend to all of those in his life.
Josh loved people and truly enjoyed doing for others. And that is why I know that Josh is smiling down on all of us with pride on how well JoshProvides is assisting others with epilepsy.
JoshProvides is so Josh!