I remember my 13th birthday almost as clearly as I remember yesterday. I woke up to my mom’s gentle voice, whispering “happy birthday” as she opened the curtains, revealing hillsides of trees covered in a blanket of perfect fresh snow. I had been sick for about a month. In bed since I got home from the movies at the start of winter break, shaking from a 103-degree fever and vomiting up the Red Bull and popcorn we had all shared.
I had undiagnosed Crohn’s disease, a gastrointestinal parasite and pneumonia all of which would soon trigger postural orthostatic tachycardia syndrome. But we didn’t know any of that. All we knew was that I was now a teenager and that I was slipping deeper each day into mysterious illness — illnesses that no one would totally understand for eight years.
But that day, Jan. 26, I was 13, and though I couldn’t have a party or even see my friends, my mom and sister had plotted to make it special. My mom brought me pancakes in bed, and though I would throw them up later, eating them was pure hedonistic bliss. Then my mom, who normally spent her days anxiously calling either my school or my doctors whilst also running her accounting business and taking care of a bedridden child, took the day off. She lay in bed with me and we watched “Snow Dogs” and “Cool Runnings” to celebrate the blizzard that had left feet of snow outside our windows.
Later that day, we had a scavenger hunt that my sister had mailed from Stanford with specific instructions for where my mom needed to hide each clue. Though I needed help walking and had to take many breaks, eventually we found the treasure at the end of the hunt, a basket full of tiny stuffed animals my sister had shipped from California. By evening I was too tired to talk or eat but I smiled brightly as the red roses and cards arrived from my aunt and uncle and grandmother. I remember every minute of that day, all these years later, not because it was normal but because despite it occurring in the most unusual of circumstances, it was a good, special, love-filled day.
I’m happy I didn’t know then that my next seven birthdays would be spent in a similar manner: at home, without any friends or parties, with me unable to eat much or go anywhere. But I don’t want to give the impression that I was in purgatory. The years I spent at home, in bed, on good days able to walk around the neighborhood were filled with memories. Nothing was normal, not Thanksgiving or Christmas, my 16th birthday or my 20th. But they still happened and they were still special.
Though I am not and will never be “healthy,” I am much better. Able to attend Stanford on a reduced course load, spend at least a few meals a week with friends (pre- and post-pandemic) and eat said meals! I spent my last two birthdays studying abroad and the year before that I had a large party at my parent’s house just off campus.
And so this year, as the 26th approaches, I find myself dealing with an anxiety and melancholy that has become familiar in the year of COVID-19. I feel like I’ve fallen backward, into the deep abyss of illness and isolation. And indeed, whether from the stress of the virus/coup/school, my health has suffered. But mostly, I feel devastated to be having another milestone birthday alone. It is hard not to despair.
And yet, the funniest part is, I know I can because I’ve been here before. I know I can make special days special even if it is just my parents and me in our house. I know I can feel happy on holidays even if they mark a passage of time you wish hadn’t passed. To feel time slipping away from you, to feel as though the world is a movie rushing ahead while you are stuck in cement, is disorienting and disheartening. But it is survivable. It is survivable.
I won’t lie and say that Christmas and Thanksgiving weren’t heartbreaking this year. I won’t pretend spending those holidays without my young niece and nephew didn’t crush me. But they were still good days. Days spent eating food that no longer makes me sick, watching movies that are no longer my whole world, FaceTiming with friends so wonderful I never could have imagined I would be so lucky as to meet them. There was light and love and loss, too.
As we come up on a year of pandemic living, a year in which everyone has spent birthdays or holidays alone or without the people they wish were there, I just want to implore you to remember, it is okay to grieve and rage, but it is imperative to look for joy, too. We will survive this but only if we adjust our scale of celebration. Having a pandemic birthday sucks, it does. But when 2 million people have died from COVID-19 alone we have to remember, it is worth the sacrifice to stay apart. And it is worth celebrating simply being alive.
The narratives we hear of disability and chronic illness are often feel-good tales of overcoming trial to be even better than you were before. I’m sure that happens sometimes. It isn’t what happened to me. I am not better because my body started failing me in middle school. I am not happier or wiser or stronger because I spend hours a day in pain, dealing with symptoms and endlessly calling doctors. But I am alive. I survived. I survive.
And, most importantly, I thrive in the everyday, I find joy and pleasure, and pride and happiness from a FaceTime with my niece, from baking cookies with my mom, from celebrating a birthday with delivery from my favorite restaurant and a Zoom party. To mourn our lost celebrations is okay and necessary. To find new ones is absolutely necessary. Even if it’s just pancakes in bed and a Disney film about a Jamaican bobsled team.
Contact Jen Ehrlich at jene91 ‘at’ stanford.edu.