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Pain Without Tears: The Courageous Life Of My Nephew

Philip at Dave and Busters proudly wearing his tickets

Philip at Dave and Busters proudly wearing his tickets

By Lorey Friedman

On December 29, 2013, the 26th of Teves, the beautiful neshamah of Philip Bach, Feivish Shmuel ben Dovid, was returned to his final resting place. He was more than a nephew to me, and I, hopefully more than an aunt to him. I can almost hear Hashem calling him back saying, “Come My dear child, My dear son. You have done so much good while down on this earth. You have accomplished so much and touched so many lives. You have fulfilled your potential and made the most of what I gave you. Come back to Me, My child, and rest now.”

For 27 years, Philip lived and fought the many challenges of having familiar dysautonomia, a rare Jewish genetic disease effecting Ashkenazi Jews. FD affects the development and survival of sensory neurons on the autonomic and sensory nervous system. Symptoms include insensitivity to pain, inability to produce tears, poor growth, and unstable blood pressure. Patients with FD tend to get pneumonia often, have difficulty swallowing, and have gastrointestinal dysfunction. FD does not affect intelligence.

Philip never ate by mouth, thus he never knew the pleasure of taste. He was fed through a gastrostomy tube in his stomach. He was also considered legally blind with only small vision through one eye—which was Philip’s passageway into all that he loved. The protective glasses he wore were an attempt and effort to retain what little eyesight he had. Despite all of these limitations and even more, Philip was never bitter. He was never jealous of anyone else and he never was angry at others or at Hashem. These feelings were foreign to Philip, not even in his vocabulary and certainly nowhere to be found in his demeanor. With his very limited eyesight, Philip read and studied the dictionary and the English language. He did math problems that the average person could not even determine with a calculator. He may not have had eyesight, but Philip had tremendous insight, always knowing what to say to someone. As one of my children related, “Although Philip was the one sick, it was he who always made us feel better.”

Philip watched his favorite television game shows, memorizing questions and contestant scores. Shows like The Price Is Right, Who Wants to Be a Millionaire, and Shop Till You Drop were Philip’s pride and joy. Philip loved to listen to talking books and visit libraries, and also go bowling, swimming, and horseback riding. He had strong opinions and as an adult could hold his own in many conversations on many heated topics. Philip liked music, happy upbeat songs that made him smile. He did not like to feel anything but happiness and was in extreme discomfort when he was anything but happy. As of late, he was a loyal Yankees fan, knowing the players and their stats as well as the team history better than any old time fan. His recent visit to Washington DC made him so happy since he was a true Obama supporter. Philip had a voice he liked to use, a remarkable, witty sense of humor along with a serious, loving side which was as clear as the wide smile that he had from ear to ear. Philip showed his happiness with his smile, with his laugh, and with his words of love and appreciation he was always conveying.

Philip loved Yiddishkeit too. He enjoyed going to synagogue with his father on Friday nights and took pride in his bar mitzvah and frequent aliyos on Shabbos mornings. He grew to be a respected and admired member of the Young Israel of North Woodmere, where he became an inspirational member of the synagogue and community. Philip touched the lives of all who knew him; even those who only met him one time or for a short time were inspired and touched by Philip. He loved, in his thoughtful way, to ask me how my Shabbos was and what I had done. He knew when Shabbos began and ended for weeks to come as well as the yom tov and family simchos before they were even on the calendar.

The adorable, courageous, playful, sometime mischievous little boy that Philip was grew to be a young man who left his mark, his impression, his blueprint, wherever he was. It was impossible for one not to be moved by Philip’s friendly nature, positive attitude, his smile, and his thirst to know more, to know how, to know why. Philip asked the questions and he really listened to the answers. He was always looking to learn more, gain more knowledge, and understand better. While so many other parts of Philip’s body did not function as they should, Philip’s mind was always on, always working to full and sometimes beyond capacity. Yes, most of the time Philip was happy. However, there were times that the dysautonomia overwhelmed his body, and the smile faded, so that even Philip had to give in to it, and stop and rest until he was able to regain his strength and be happy again as he so longed to be.

There was something about Philip that made people feel good. He was fun to be with and his loving personality was engaging. His greatest pleasure in life was when someone close to him would engage him in conversation, question him, baffle him, and spend time with him. Philip was not afraid to say what he felt and express his emotions. He often said, “I love you” to his family, or “You’re my best friend.” He always expressed gratitude and appreciation to those who were kind to him. He was so sensitive and always knew how to make one feel good, to feel wanted, and to feel loved. Philip’s smile was real, genuine, and authentic. He was happy with what he had, happy and content with his life, and most of all, he was happy with himself. There is so much we can learn from Philip.

Philip was a beautiful gift from Hashem, bestowed into the loving hands of my sister Mindy and brother-in-law David. Ever since Philip was born, they made sure to give Philip the best medical care possible. Another special gift given to them along with Philip was a wonderful woman named Sheila. Sheila became Philip’s friend and aide when he was only seven months old and she quickly became a member of our family. For 27 years, Sheila helped Mindy and David tend to all of Philip’s physical as well as emotional needs. She became their partner in raising this special child. She loved Philip, and Philip loved her. Mindy and David, young parents of this firstborn child, dedicated their life to making sure all of Philip’s needs were met. His happiness became their happiness, and their greatest pleasure for the last 27 years has been to give Philip the best quality of life that they could. They enabled him to make the most of his life, and, despite his many limitations, Mindy and David filled Philip’s life with what made him happy. The question was never “What can’t Philip do?” but rather “What can Philip do?” They made Philip into a functioning, delightful, intelligent mensch who was a beloved son, grandson, brother, nephew, and cousin. My children did not see Philip as sick. They knew and loved him exactly as he was, and not one of us ever wished for Philip to be any different than who he was. We loved being with Philip and his memory will forever live on in our hearts and in our minds as the special, beautiful blessing that he was in our lives.

Philip was also very lucky to have a younger brother Matthew and younger sister Bayla, two siblings who respected Philip and looked at him and treated him with the utmost of pride and joy. Never did they try to hide Philip from their friends or resent him for the amount of attention that he took from their parents. Instead, Matthew and Bayla truly loved Philip. He was their big brother and they accepted him just as he was, for they never knew him any other way. They proudly participated in all the FD fundraisers and helped Philip become the remarkable person that he was. No doubt, living in a home with Philip can change and shape a person, sometimes for the good and sometimes even for the not so good. In this case, Philip helped make Matthew and Bayla into two of the most sensitive, caring, good-natured young people I have ever met, who will undoubtedly make a difference in this world with what they have already seen and experienced in their young years. They certainly made a difference in Philip’s life. The beautiful relationship that these two siblings had with Philip and that Philip had with them is yet another blessing from Hashem.

And now, Mindy, David, Matthew, Bayla, Sheila, and his Nana are left with a void, with a giant hole in their hearts and a painful vacancy in their home, which was always filled with Philip’s loving, dependable, and vibrant presence. The recipient of all their giving is no longer here. The years of medical crises had grown into a stable, adult life now for Philip and he was a mature, good friend to his family now. He had found happiness and was content. He had things to look forward to and things that greatly interested him. His family is left to ask, Why? Why did Hashem take him now? All I can tell myself is that Hashem gives and Hashem takes. He gave my family this beautiful angel we named Philip and he took Philip back just as quickly and unexpectedly as He gave him.

When Hashem asks Philip if he used all that he was given to make the most of his life and himself, Philip can surely answer “Yes.” I truly believe he is in Hashem’s arms now being enjoyed and treasured just as he was here in this world with us. I pray that my mother, Philip’s one and only Nana (Marilyn Axel), who had such a very special bond with Philip, his parents Mindy and David, his siblings Bayla and Mathew, along with my family will get comfort and strength in knowing that the love and care they gave to Philip enabled him to leave a never-ending, never-fading special mark in this world and in the lives of all who knew him. Philip wrote his name in this world on rock, not in sand. When one writes their name in sand, it can be easily washed away with the tide. But, a named carved in stone is forever. That is how Philip made his mark in this world and in our lives.

May Philip’s family be comforted among the mourners of Zion and Jerusalem. May Mindy and David and the entire family see nachas from their two other beautiful children. Most of all, may the strength that they used and showed during his lifetime be rechanneled into the strength they must use for themselves right now. Our special Philip was able to find happiness amidst the pain and light in his darkness. He had no tears in his body, inside or outside. This is how he would want it. He did not like anyone, including himself, to be sad. May we all retain the lessons Philip taught us of how to live with real simcha. Philip’s memory will forever live on in our lives and may all of the mitzvos we do be a blessing for the beautiful neshamah of Feivish Shmuel ben Dovid. v

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Posted by on January 23, 2014. Filed under In This Week's Edition. You can follow any responses to this entry through the RSS 2.0. Both comments and pings are currently closed.

One Response to Pain Without Tears: The Courageous Life Of My Nephew

  1. elana kastner

    January 26, 2014 at 10:06 am

    What a beautiful tribute to dear Phillip. You captured his essence. He was a remarkable person. I am grateful for the memory of his wonderful smile and hearftfelt laughter.