Onwards: A Reflection on Benjamin Button and Graduating

It’s Wednesday, which means that it’s either life as usual or I’m headed to the infusion center. Today, it’s the latter, and I’m in the passenger seat gulping water and squeezing a stress ball, hoping both activities will allow the nurse to find a vein on the first stick. 

For almost 7 months now, I’ve been receiving the drug I did well on in the clinical trial–IVIG. My mom drives me to every biweekly infusion for three reasons: firstly, she is kind. Secondly, if parked for 4 hours in Texas, the car will be hotter than a sauna in hell. And thirdly, in 4 hours, I will be too sleepy to drive myself home. 

As I settle into the cush infusion chair, the nurse asks if I brought anything to work on today. It takes me a moment to remember that I didn’t, that I no longer have papers to write because I’ve finally completed my degree. When I tell her this, I learn that she went to UT for her undergrad too. “Best 5 years of my life,” she said. 

I am the elephant in the infusion room. Every patient is older than me, some by 60 years. Before receiving our medications, the nurses always ask us to confirm our date of birth. I can’t help but feel self-conscious saying the year “2000” aloud.

Two infusions ago, I finished reading Tales of the Jazz Age, a collection of short stories by F. Scott Fitzgerald. The first story was my favorite, “The Curious Case of Benjamin Button.” It tells an imaginative tale of a baby who is born an old man and ages backwards. As the patient across from me tells the nurses about the challenges of growing old and developing more and more ailments, I can’t help but think about how my life is the reverse of hers: how I’m young and my doctor tells me that my condition might actually get better as I get older, when my immune system (hopefully) calms down. 

Am I Benjamin Button? Is this what it feels like?

After I’m unhooked and discharged, I walk to my mom, who is waiting for me in the car with the AC on full blast. On the way home, we pass the arena where I graduated high school. I point it out, and we remember. Now, 6 years later, I’m graduating college. 

Anyone who’s been reading this blog (and by the way, thank you) probably knows that the past several years have been bumpy for me. I’ve really enjoyed my time at UT, yet I can’t say that college was the best years of my life. In fact, much of my earlier experience was quite traumatic–starting college out-of-state only for my health to deteriorate and be thrown into the adult medical world, alone and 800 miles from home. 

It’s painful to remember where I started and what I lost along the way. But reflecting on the past also makes graduation even more meaningful to me, because of how often I doubted whether I’d ever see this day. 

My graduation was a practically perfect afternoon. Miraculously, Texas had a mild (emphasis on mild) cold-front, and the weather was lovely–not too hot for May. All of my close family were able to attend, and I snagged extra tickets for my brothers, who made it back from their Boy’s Trip just in time. 

The ceremony for English and History majors took place in an auditorium on UT’s campus. Funnily enough, though the official colors of UT Austin are white and burnt orange, the colors for the ceremony were the official colors of my previous college: blue and red. In fact, several of my classes as a musical theatre major were held in auditoriums. As I sat next to my UT classmates, I felt like I was in two places at once. 

I knew that as part of the ceremony, I was to walk across the stage and receive my “diploma” (the real documents are mailed afterwards…), but I underestimated how weird that would feel for me. As my row lined up backstage, I stood in the darkness, shocked at how strange it was to be back here again. It was both familiar and foreign, and also sad–I used to love this place, had once felt so comfortable in these wings.

I managed my entrance without tripping, and waved to my family in the back. Even with POTS, just having to walk was easy enough. No lines to remember, no dance numbers or songs. 

After the ceremony, my family and I took pictures at the UT tower. For a brief moment, I time-traveled back to when I was a freshman, sitting near Belmont’s bell tower. I’d always imagined I would take pictures there when I graduated.

I’ve been thinking a lot lately about whether our lives are fated, and how much say we really have in the people we are. A few days before the ceremony, I stumbled across a picture from my high school graduation. In it, I’m standing next to my grandma, holding my grad cap, which I had decorated with the name of Belmont inside the shape of Tennessee. I’m smiling at the camera, thinking I know exactly how my life is going to go. It wasn’t until recently that I noticed my grandma is holding a book by Virginia Woolf, a writer I had not yet read and would later become my favorite class as an English major at UT. 

Life is unpredictable, absurd, cruel, and beautiful. At many points along this journey, I got woozy from all the twists and turns. For a stretch of time, hope was hard when all I saw was darkness ahead. But in the words of Chanel Miller, another favorite writer of mine, “You have to hold out to see how your life unfolds, because it is most likely beyond what you can imagine. It is not a question of if you will survive this, but what beautiful things await you when you do.”

At UT, I got a second chance. I learned there is life after loss, and I discovered that I had more interests than I knew, beyond music and theatre. As for what’s next, I’m working on finding a full time job so that I can have health insurance when I turn 26… And am hoping to land somewhere cooler, eventually. 

Onwards we go.

Alli