GI-Jew (Gastro-Intestinal Jew), or, Reconciling Faith and Chronic Illness
By Lydia Shaw
When I was a child, I knew that my family was Jewish, but we didn’t practice our faith very much. My parents, waiting for me to discover and pursue faith on my own, were pleasantly surprised when I, at only five years old, told them that I wanted “to go to school to be Jewish.” My mother was delighted—though she has not always been a practicing Jew, she has always identified as Jewish, and she highly values her Jewish upbringing. She was happy that I wanted to be Jewish and that I wanted to feel a deeper connection to my Jewish heritage.
I started Sunday School at a Reform synagogue in Philadelphia when I was in kindergarten and immediately made friendships that I treasure to this day. I was taught Jewish values that have highly influenced the way I live my life, with an emphasis on tikkun olam, or “repairing the world.” For a long time, my synagogue was a constant, my second home.
I was lucky to be brought up in such a supportive Reform Jewish community that encourages everyone to have a personal relationship with God and to constantly be thinking and challenging one’s beliefs. As I got older, the idea that your belief is as you make it was emphasized, and I was told that it was okay to not be 100% sure of my belief in God. It was because of that flexibility that though I still sometimes struggle with my belief, I’ve known that it was okay to do that since my first year at Hebrew School.
I was a sickly child: my biggest medical issue until I was about eight was my severe asthma. As a baby, I spent all of my energy breathing, and because of that, I had little energy to dispense elsewhere. I was literally off the charts—I was too small to fit on regular height and weight charts for my age. I was diagnosed with ‘failure to thrive,’ which, believe it or not, is a real condition (though my parents found light in the situation by saying it sounded like the name of a metal band). Right when my lungs started to get some freedom and my doctors and parents were celebrating because I was finally on the charts, I started to have chronic, debilitating pain in my gut. This was diagnosed as severe IBS when I was eight years old.
As a kid, I didn’t know much about IBS and how the world perceives it—I just knew that it gave me chronic pain. The pain was so terrible that I wouldn’t be able to move during my attacks, and it would sometimes last for the rest of the day. It was traumatizing to have these recurring experiences as a kid.
Though my belief in God wasn’t incredibly firm at the time, it was something I found really important to hold on to. It was easier to believe that if I promised to be a good Jew, my pain would go away, than to believe that this was just how my life would be for the foreseeable future. I thought that maybe if I prayed enough, I wouldn’t have IBS anymore. So I started praying while having attacks. It was impossible to tell if praying actually relieved my pain, but it was comforting to believe that God did this for a reason, and that God could fix it.
As I grew into a pre-teen, my skepticism returned, and it became a protective shield. I’d been dealing with IBS and chronic pain for years at this point, and if all the different pills, diets, and alternative medicine I’d been trying hadn’t worked, how would God?
I got my first concussion in sixth grade but bounced right back. The next year, I was able to have my bat mitzvah, and it was one of the most important, joyful, and meaningful experiences of my life. In eighth grade, I got a second concussion, and this one affected every part of my life. I was out of school for over a month and had to slowly phase myself back in, my IBS started going through a bad cycle, and I felt alienated from my friends. I dropped out of Confirmation Academy at my synagogue because it was too much to manage. I was never confirmed.
Until two years ago, I was afraid to return to my synagogue. Though I knew that I would be welcomed back whenever I did, I was scared of being looked down upon for not finishing Confirmation Academy and for abandoning the community. But two years ago, one of the rabbis invited me back—this time, for a paying job. He knew that I had been making music, and he wanted me to be the assistant song leader for the very same Hebrew School I had attended for so long. I went back, and I just recently finished my last day of teaching before I go off to college in another city.
Being involved in my synagogue again opened me back up to faith. Teaching Jewish values to children restored the connected I feel to Judaism, especially through music. It helped me feel secure in my identity as a Jew.
I’m still always questioning my faith, but I know that there is something out there. I have also made peace with my illness. Almost eleven years later, it’s still going strong, but so am I. I’ve learned to live with IBS and chronic pain. I know that my faith has helped me through really tough times, and it will keep helping me in the future. I just don’t expect God to cure me anymore. A cure may never happen, and I’m okay with that.