Ontological Insecurity

I finally got my relatively quiet week. I am at a sustainable level of nutrition, albeit it not my nutritional goal. I am now very slowly ramping up my pump speed so that I can increase the volume of my formula to my nutritional goal, while still giving my small intestine enough rest time between feeds.

David and I used the opportunity of a quiet week to adventure out to the kosher bakery to pick up hamentaschen and enough baked good to last me the month until Passover. I mean that literally, since many days I end up having to split a cookie with David. Except for the bow tie/egg kichels. Those are so nice and light that I can eat an entire one myself. And they are simple enough that they can settle a fussy stomach. They are my wonder cookies.

Our elevator is still out, so that adventure had me going down and up the stairs. And a few days later, I repeated the feat when I went down to get the mail. Not because we were expecting anything interesting. Just because I could.

I am perfectly aware that one good week does not mean that life has stabilized. I am still regularly venting blood and my stoma still bleeds daily. But I also now understand that these things are considered to be normal. But with nutrition comes brain function, and I am just now beginning to struggle with the questions that I have been unable to answer for the past 2 years.

In an article about a group of sociologists from Columbia analyzing an oral history of Covid, The New York Times defines ontological insecurity as “[the limbo that makes it] impossible to break out of that malaise, to project oneself into a future that [keeps] evaporating ahead of you.” This is a perfect descriptor of where David and I continue to dwell. We are still hesitant to make any commitments more than a day in advance because the ground doesn’t yet feel stable beneath our feet.

But time is relentless and Passover is coming whether we want it to or not. And that is forcing an issue that I am not quite sure that I am up to facing quite yet. What does it mean to navigate the world as a non-eater? More relevantly to this post, how do I do Judaism as a non-eater? As I have said before, I am not big of davening (prayer). Some of that is simply because I am my father’s daughter, and study is our preferred connection to Judaism. But a not insignificant issue is my baggage from having grown up sitting behind a mechitza (a divider separating the men from women during prayer). But that is trauma for another time.

Judaism is really big on food. And everything from holidays to life cycle celebrations to mourning each come with their own designated meal. Food prep has always been my go-to on-ramp to Judaism. It has been integral to how I celebrate holidays. The beginning of the month of Elul, a full month before Rosh Hashanah, is when I traditionally start thinking about what to make for Rosh Hashanah and the meal before Yom Kippur. I have more than a decade of meal ideas and their associated shopping lists on my phone.

Passover is a particularly difficult time to figure out how to navigate the world as a Jewish non-eater. Most food traditionally eaten on holiday are simply customs. But on Passover, eating Matzah and maror (the bitter herb) are mandated. The good news is that the required amounts are small enough that even I can eat them. The problem comes with the meal that is an integral part of the Passover seder.

I am too early in my journey as a non-eater to sit through a long, multi-course meal, even one that happens during a seder. Just thinking about it is overwhelming and upsetting. It immediately brings all that Gastroparesis has taken away from me to the forefront of my mind. Just writing this paragraph has me crying. How I am supposed to make it through a whole meal when the grief is still this fresh and raw? I know there is so much more to unpack about being a non-eater in a world where food is so central a focus. And I haven’t even begun that process.

I have polled my fellow tubies on how they navigate formal festive meals. The response was mixed, but their responses can be boiled down to it not being easy. They all mention the double punch of the psychological grief and loss and the physiological response of nausea and discomfort that comes with eating.

David and I are still deeply in a state of ontological insecurity and Passover feels impossibly far away. We are most certainly not yet in a place to make plans. But I am fairly confident that we are going to maintain what has become our Covid tradition of having our seder at home with just us and our cats and connecting virtually to our friends and family. I just don’t think we are ready for anything else yet.