People have offered me countless unsolicited suggestions over the years that I’ve lived with multiple chronic illnesses: eat pineapple, journal regularly, exercise more, use essential oils, drop $500 on a functional medicine doctor and my personal favorite, “Just don’t think about your pain!”
Weirdly enough, though, not one person has ever suggested building a balcony sukkah to improve my well-being. Strange, right? And yet doing exactly that has been key for coping with the anguish that comes from being permanently sick.
In 2021, I was struggling with depression due to the uncertainty of being undiagnosed with what I now know to be a rare genetic condition called congenital myopathy. For a long time, I’d been seeking an explanation for certain sensations in my body. A neuromuscular disease specialist had recently been on the case and the situation seemed promising. Perhaps I was finally on the precipice of an answer! Instead, I found myself sitting on my childhood bed during a visit to my parents, staring at the fading blue walls as the doctor explained over the phone that my muscle biopsy had been informative but inconclusive. I would need to visit a geneticist to get more insight and faced another 18-month wait for a consultation appointment alone.
In the aftermath of that announcement, I felt hopeless and stuck. A label for my symptoms would finally tell me how to proceed with the rest of my life. In this situation? I had no idea what to do next.
After some soul-searching and, sigh, yes, some journaling, I realized I’d been focusing too much on the diagnosis as a means of getting treatment to return to the activities I desperately missed and the “me” I thought I was supposed to be. I couldn’t keep living in that mindset. No more all-or-nothing thinking! Rather than putting my life on hold for the potential “one day” while I hoped for the magical fix, I had to find ways to enjoy my life in my present reality.
My next steps needed to include changing the routines I once found safe and making waking up something to look forward to instead of dread. With Sukkot just around the corner from this moment of clarity, finding realistic fulfillment would start with diving deeper into my Jewish identity and celebrating the holiday I’d neglected as an adult. Like many secular Jews, I’d imperfectly but diligently honored Rosh Hashanah and Yom Kippur each year and, of course, marked Hanukkah with joy. But it hadn’t been since Hebrew school that I’d considered celebrating this particular harvest festival as part of my Jewish practice.
After consulting with my husband, an idea was born: Together, we designed a sukkah that we could fit on the little 5 foot by 10 foot balcony hovering high up in the sky outside our 16th-floor Toronto apartment. We bought lumber, made colorful construction paper chains, sourced seasonally appropriate orange chrysanthemums and ordered a lulav and etrog online.
Sure, it wasn’t wholly kosher: the balcony above us meant that our roof wasn’t technically open to the sky, and our materials weren’t entirely up to the Torah-specified code. But in those hard times when I was working hard to find joy in my life, it felt as though as long as my sukkah was meaningful to me, that’s what mattered most.
It seems fortuitous that the timing of my massive mindset shift meant that Sukkot was my first stop on my post-epiphany journey. I mean, the holiday is all about impermanence! We spend time in a structure that’s vulnerable to the elements and a little unstable to remind ourselves that life is fragile. And also, to remember that although everything we experience is fleeting, that doesn’t mean that we should stay inside our comfort zones or attempt to control every variable in life to avoid challenges.
In my interpretation, the idea behind Sukkot is to force us to face the uneasiness of the human condition. By confronting our own mortality, we learn that it’s still possible to have a meaningful life — even if an obstacle, whether it’s rain or illness, might come along to disrupt it. This seemed like a lesson I needed during that particularly painful time. Yes, my symptoms and the uncertainty were extraordinarily difficult, but this level of hardship couldn’t last forever.
Although our sukkah only exists as disassembled parts in my building’s dark basement storage room for most of the year, it’s had a lasting impact, serving as a sacred, peaceful space in my mind every day. I now see that my experience in this life is more than just my ailing body. I don’t want to be cliche and sentimental and say that I’m grateful for my pain teaching me how to be resilient. Because that’s definitely not true! But after connecting to my Jewish ancestors through this important ritual, I can see the resilience that is always present and deeply embedded in my body. Even though suffering is inevitable in my situation, it will not stay static; it will ebb and flow. Perhaps sometimes my pain will be a massive symbolic gust, attempting to blow down my metaphorical sukkah, but at other times, it will feel like a mild cool breeze, barely penetrating the walls around me.
