Two years ago, my best friend and I were having a joint birthday dinner for our grandparents at their favorite restaurant when my grandma looked up from her meal to gawk at me, eating my food.
“What?” I said, my mouth half-full of maybe the best chicken I’ve ever had in my life.
“Do you remember when you couldn’t eat and you would tell your father to write down all the foods you wanted to eat one day?” My friend’s grandma shook her head in a way that most people do when they are reminded of the circumstances of my childhood. I nodded slowly, trying to force a smile on my face. “Yeah, I do,” I said, kicking my friend under the table. I had warned her before dinner that my grandparents would probably say this exact thing at one point during the meal because they’d said it every single time I’d eaten with them since before I had gotten my last feeding tube out more than a decade ago.
I was born with gastroschisis, a birth defect that causes your intestines to develop outside your body. As a result of my underdeveloped intestines, I was unable to properly digest food, and from the time I was an infant, I received the majority of my nutrition through a feeding tube in my stomach called a G-tube. Though I was able to come off the feeding tube and eat entirely orally after receiving an intestinal transplant, I grew up with a nagging feeling that food and the culture of eating were something that I would always have a complicated relationship with, because of the way my family framed my participation in it as a miracle.
This dynamic became especially evident each time we would sit around a table for a Jewish holiday. Whether it was breaking the fast on Yom Kippur or sitting around the seder table at Passover, someone in my family would make some comment that usually started with, “Isn’t it just so amazing that you’re…” and marvel at me as I took a bite of brisket or broccoli with such a strange admiration that it made me feel deeply disconnected from the food, the sanctity of the holiday and my body.
At that birthday dinner a couple of years ago, a pit began to form in my stomach and my mind began to wander with thoughts about the importance of food to my grandparents and their parents and the way that Jews have expressed a love for one another generationally through food. I thought about my great grandma Ida who at every seder would ask my dad and aunt how many matzah balls they wanted in their soup, and when they responded “none,” she would reply: “OK, one or two?” I thought about the ways that food is synonymous with tradition, and what is left of my culture, my history and my present if food is taken away. What would have been left of Judaism for me had I still not been able to eat?
I mulled this question over for months after that auspicious birthday dinner and finally decided that there was only one way for me to try to make sense of it: through writing. I decided to write a short story for my creative writing class about a girl named Noa who goes to her family’s Passover seder for the first time since being put on a feeding tube. It was one of those creative projects that just came pouring out of me. The story became about a traditional family who could no longer treat Noa like a regular person, simply because she was unable to eat. It shows the family’s strange interactions with her, as they try to find ways to include her in this ritual deeply centered around food.
After the class concluded in the spring, the story stayed with me. I decided that it would be my next short film and I began furiously writing a screenplay adaptation of the short story. The script, titled “Unholy,” is centered around Noa and her relationship with her well-meaning father, Benjamin, who tries and fails time and time again to make his daughter feel comfortable in their deeply uncomfortable familial environment. Though I haven’t been a feeding tube user for many years, much of the film’s dialogue is based on all of the absurd things people say to me as a transplant recipient on a day-to-day basis.
For example, when Noa comes into the room, her younger cousin Adam greets her by saying, “Hey Noa, congrats on being alive!” This line was pulled directly from a conversation I had with an older woman after telling her my transplant story. That moment, and many others like it, are real things that happened to me — and I’ve now repurposed them in my script to create the atmosphere of absurd realism that is being chronically ill.
When it came time to produce the film, I knew that I couldn’t do it without help from a current feeding tube user to fill in the gaps where my memory of the experience became fuzzy. So I brought on a friend to serve as an accessibility consultant, a Barnard student dealing with multiple complex chronic illnesses who requires a feeding tube for nutrition. Together, along with my producers, we began discussing who we would cast. The original plan was to cast a Jewish feeding tube user, but we quickly found that demographic was nearly non-existent in the acting community.
After extensive conversations with my friend, we decided that as long as our Noa came to the role with compassion and a genuine desire to learn about the disabled world, we would be satisfied, and we found that in Olivia Nikkanen. The next challenge was to find someone to play Noa’s father, Benjamin. I had my eye on Tony award winner Danny Burstein. We sent him the script, and after a moving Zoom meeting where we both spoke openly about our experiences dealing with illness, we hired him. Everything was falling into place for the film.
Throughout the entire process of creating this film, I thought about the deeply Jewish theme of being in the in-between. I often feel in between able-bodiedness and disability, especially in relation to the way others perceive my body and my story. I tried to create a similar dynamic between Noa and her family. There’s a line at the end of the film that perfectly encapsulates this. Noa is talking to her father and says: “I feel like I’m going crazy because everyone is either treating me like it’s not happening or that it’s such a big deal they don’t know how to act.” I hope this film creates a space for both disabled and non-disabled people in culturally traditional families to feel like they have the right to hold space in-between. We do not have to make ourselves uncomfortable to feel seen in the wholeness of who we are.
“Unholy” will be premiering at the end of January at the Sundance Film Festival and will be continuing on the festival circuit in 2025.
