Emily Tantuccio

Using Music To Overcome Illness

I found a way to feel empowered instead of victimized by my experience with chronic illness

Last week, I pulled up to my radiologist’s office for my regular six-month MRI. I immediately remembered how I felt the first time I sat in that parking lot four years before, when I was diagnosed with breast tumors at 19.

In that moment I had felt disconnected from reality and weighed down with dread. Sick, again? I thought. Surgery, again? The radiologist had leaned over me and beckoned to an assistant to get another member of the staff in the room to read the scans. He talked over my head about how foreboding the results looked — like I was just a science project and they were officially mandating the separation between my body and my mind. They paid no attention to me, to the sting I felt hearing my worst fears echoed back to me out loud.

“Multiple masses — both sides.”

“Never saw so many in such a young patient before.”

“Definitely surgery. We’d recommend something immediate. Can we get mom in here to look at these?”

I felt impossibly small and defeated, like I had been stripped of the right to make my own decisions. My body had made them for me, and a medical staff reviewed them in the same tone I’d imagined they’d used while discussing the morning commute or last night’s game. I couldn’t really blame them — this was just another day at the office for them. But for me, it was the beginning of a personal war that was far too painful to deal with right before starting my second semester of college.

This wasn’t the first time I had to deal with tumors as a teen, so I was already familiar with this type of chaos. But my past experience didn’t make the situation any less frustrating. I walked out of the office and cried in the parking lot that day — I am talking full-on ugly crying. I wasn’t upset so much as pissed off and exhausted by the thought of halting my normal life to combat illness for a second time. As far as I was concerned, I had already paid my dues to the universe through my struggles with tumors the first time around. I had no more room left in my narrative for the bullshit that is being “the sick kid.”

Going away to college was supposed to have been the new chapter of a much bigger story for me. My early-decision application to NYU was sent out in October, and my acceptance arrived on a rainy morning in November. I felt the heft of the envelope and breathed a sigh of relief as I slid the contents out, running my fingers over the thick paper stamped with the glossy purple NYU logo, memorizing the shape and structure of the opening line: “Congratulations, you have been accepted ...”

In the months that followed, however, my health declined enough that my parents felt I should instead stay closer to home and go to Rutgers University instead. I reluctantly agreed and soon found I liked my new independent life there: I had an amazing roommate, joined clubs, and finally felt settled enough to plan long-term — an internship in L.A., a semester abroad in London.

But I also felt sick nonstop through that first semester. None of my doctors could pinpoint what was wrong at first, but it was obvious that my immune system was weak.

My doctors found the tumors by chance. I was initially diagnosed with chronic sinus infections and enlarged tonsils, which required a tonsillectomy. The doctors discovered a small lump under my right arm during the process of clearing me for that procedure. Their suspicions were confirmed during the follow-up scan at the radiologist — the lump that had initially been discovered was one of many, and I would need surgery to deal with them immediately to hopefully prevent follow-up treatment.

The process of transitioning back into normal life post-surgery felt like a hazy fever dream. I spent the end of the spring on painkillers and with stitches in my chest, trying to keep up with what was happening in my friends’ lives while acting like I wasn’t completely freaked out by now being a semester behind in school. From my hospital bed, I watched my friends post Instagram videos from concerts I was supposed to be at, too. Facebook statuses about spring break turned into sappy end-of-freshman-year posts, while I counted down the days I had left on the drugs that felt like they were turning my body inside out.

Luckily, all of my pathology reports ultimately come back negative, but finding my “new normal” took a little longer than I anticipated. Although I desperately longed for a routine again, I also felt detached from the idea of going back to school. It was hard to think about explaining where I had been and what had happened to me when I was still trying to work on processing all of that information myself.

Late one summer night, however, I found something that finally helped me not only come to terms with what had happened, but to figure out how to feel stronger because of it. While scrolling through Twitter, I came across a post from the Vans Warped Tour account about an organization called Living the Dream Foundation. They were asking for fans who were battling life-threatening illnesses to send in their stories for a chance to win what they called a VIP Dream Day at their local date of the Warped Tour. On a whim, I emailed them. A few days later, they responded, inviting me and a friend to come hang with them for the day at the tour stop closest to me in Holmdel, New Jersey, at the PNC Bank Arts Center.

On the day of my Warped Tour date a few weeks later, I showed up at the gate of the venue with one of my friends, unsure of what to expect. But from the moment we linked up with Kacie, my contact from the organization, I had a feeling that the day ahead was about to be one of the coolest experiences I’d ever had with live music. She immediately took us backstage, where I got to watch about a dozen of my favorite bands perform. Throughout the day, I explained my story to Kacie, as well as the mile-long list of plans and goals I had for my own music career after this whole ordeal was finally behind me. Later, I was even able to be a part of The Used’s live tribute to Pussy Riot on stage, which involved standing with the band for their first two songs while wearing a neon-pink ski mask.

I got so much out of my experience, not only because of special moments like those with Kacie and The Used, but also because I felt like I had been given the chance to just be a kid in love with music for a day. In the past, I always had to worry about my health and could never fully enjoy the shows. I was shocked that my VIP Dream Day actually managed to provide me with a temporary escape from the stress and exhaustion that had built up over the spring. That feeling of peace meant more to me than anything.

So when Kacie emailed me a few months later asking if I had any interest in hosting a VIP Dream Day like that for another Living the Dream guest in NYC, I jumped at the opportunity. Facilitating meet-and-greets for our guests with their favorite bands, watching how overwhelmingly ecstatic they were when they had the opportunity to spend one-on-one time with them, and watching my favorite artists (like Paramore and All Time Low) take the time to make these connections was a privilege.

But more than anything, this work has helped me finally find a way to feel empowered instead of victimized by everything that I have endured in my life with chronic illness. I stopped being embarrassed by my story and instead started to take the time to talk to our guests about what they were going through, always trying to remind them that they had the power to dictate what they were capable of and write their own narratives — not their illness, and certainly not anyone who thought they could judge them based on it. I have also learned that sometimes the best way to confront pain is to use it to help others deal with their own.

I strongly encourage anyone feeling as lost as I did to seek out opportunities to help others who are facing demons similar to yours. You might be surprised by how much peace you find within yourself by helping others to find their own. We are not our burdens or what happens to us — but we are definitely wiser and stronger for it.

For more information on Living the Dream Foundation, visit ltdfoundation.org, and for more information on seeking out nonprofit and volunteer opportunities, visit dosomething.org.

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