During a time in which we are experiencing a surge of political correctness, speaking honestly about topics deemed taboo requires a certain level of bravery. Gil Epstein, 13, chose to take that risk when he openly discussed the constant challenges he faces as the sibling of a disabled older sister Sari. The arena he chose to share a raw account of his life was not during a quiet conversation with his family but as the keynote speaker for a recent JAFCO fundraising event.
Gil credits his parents Eric and Erika for his ability to speak freely saying that he could always express himself without judgment. Eric said that for better or worse they never kept secrets from Gil and they were always honest about his sister’s condition. Her illness included numerous surgeries and is accompanied by frequent outbursts. Gil said that he didn’t want to “sugarcoat” what life is like living with a disabled sibling and that he felt that the message might be better received coming from a teenager. He shares how hard it is not to have time alone with his parents and events that most of us take for granted, such as an evening out for a dinner and a movie, is uncertain because of the anticipation of an outburst from Sari.
Eric describes life as “always waiting for the other shoe to drop.” He spoke about how Gil’s friendships suffer because of not wanting to being associated with his sister for fear of ridicule. Eric said on a rare occasion he asks Gil to meet his sister at the school bus, but he refuses and locks himself in his room. Gil admits that no one actually does make fun of him and when pressed about how he might be able to confront this situation in a different manner he responds, “this is something I will continue to have to work on.”
Trying to help Gil cope with a situation that he considers unfair, the Epstein’s brought Gil to JAFCO’s SibShop to meet other children whose lives were similar to his. When it came time for his bar Mitzvah, Gil chose SibShop as his Mitzvah project and was asked to be a leader for the younger children. His experiences with the group would be reflected through some of his Torah readings, most notably the story of Samson who derived strength from his hair, but through fate it was cut off.
Gil questions his fate of having a disabled sister but has come to recognize that good still comes from this. “Sari will never judge anyone,” Gil said. “She will be spared some of the negative emotions and experiences others have because she doesn’t know how to feel it.”
Sari did not attend the bar Mitzvah. “It was one of the most important days of my life and I just didn’t want her there,” Gil said. He didn’t want to deal with the worry of what might happen. He was grateful for this rare occasion when for a change it was all about him. There will probably be more public speaking in Gil’s future, as he and his parents believe it is important to share their experiences with others in the same situation. Both Eric and Erika have chosen to change professions and become mental health professionals in order to practice together counseling other couples on dealing with the challenges they face with a disabled child.
Gil was grateful for the opportunity to raise awareness not only concerning his life but the work done by organizations that assist disabled children and their families as JAFCO does. Because of the Children’s Ability Center, which provides an array of services including art, fitness, computers, and overnight stays Gil and his family was able to go on a cruise together. The Epstein’s hopes that their honesty and openness about their life will continue to help others who share this challenging journey.