An Uncommon Joy

Take a moment and think about a time that you felt deep sorrow. For me, that sorrow was the past two years of my life. It all began at the moment my sisters title “when the mean, mean germ took over your stomach”. Without warning, an unbearable, burning pain began all throughout my chest - and the horror was that it never went away. Being a very creative problem solver, I did whatever I could to make it dissipate. Nothing worked.

And then I discovered a way to control it, a way to lessen my pain enough to get on with my life.
I found a way to control my physical misery by not eating.

In this pain and limitation, I also found a way to quell the negative feelings I had always harbored toward myself and my body. This restriction controlled both hurts - the physical suffering and the emotional battle against the way I appeared to the world. I separated the two, food and me, because it was easier.

Throughout this time, I went to dozens of doctors and had countless tests done. No one could figure out what was truly going on, and, consequently, a way to help me. Over a year later, a specialist at John’s Hopkins diagnosed me with an extremely rare gastro-vascular condition. Since I had benefited from nothing else, he recommended surgery as the best option.

On January 9th, the day before my twenty-third birthday, I spent four hours in the operating room as a team of surgeons split me open and connected my duodenum to my jejunum with sixty blue, titanium staples. After this intensive operation and seven days in a hospital bed, I felt physically worse than I ever had in my life. I have never felt such despair. In the months following my surgery, I rarely got dressed, left my room, or talked to my friends. I was at my lowest point, completely hopeless, alone, and ashamed of who I had become.

As a last resort, my surgeon recommended that I see an eating disorder specialist. I had never told anyone the way I felt about my body. I had never told anyone about my horrible relationship with food. Upon sharing my heart with Dr. Guarda, she immediately diagnosed me with anorexia.

I was completely shocked, overwhelmed and panicked - how could this possibly be my reality?

But I trusted her, and motivated by the promise of my pain finally disappearing, I immediately agreed to enter an inpatient treatment program.

The next week, I admitted myself into a locked psych ward for the rest of the summer. Those weeks were extremely difficult and filled with more tears than I have ever cried. I did not have a shred of freedom, not even the privilege to go to the bathroom when I wanted. Never before had I experienced a more raw physical pain, a pain that made surgery feel like kindergarten. Those weeks were also filled with incredible transformation, but not at all in the way I expected. While my pain did not lessen in the least, my mind had completely changed.

I realized that I had to stop waiting for the day when I would finally feel good again. I realized that I had to stop letting my circumstances defeat me. I realized that I needed to focus on the things that I could do, rather than those that I couldn’t. This personal awakening occurred because, for the first time, I was sharing my heartache with other people.

These people were my friends in treatment. They included a famous journalist, a 17-year-old boy scout, a hospital dietician, and a 69-year-old woman. Those friends helped me to open up for the first time. Despite only knowing them for six weeks, I know we will be connected for a lifetime.

When I left the hospital, I was terrified to share my story with the people in my life. I was terrified that my community would blame my illness on my eating disorder. I was terrified of losing my trust and validity. I was terrified of being labeled as a sick person. I decided to open up about my eating disorder when my stomach finally felt better, a time when I would feel less vulnerable about sharing.

A month ago, I decided to choose bravery. I penned my story and shared it with thousands of people via Instagram. The hearts and words and stories shared in response changed my life. At that moment, I realized the power of connection. I realized that the hard things in my life were isolating me, when in fact they held the greatest capacity for connection. I have never felt freer and more a part of humanity.

I encourage you to be curious about people, asking them questions about who they are and what they love. I encourage you to pursue relationships with the intent of knowing a heart that is different from yours. I encourage you to create an environment that feels hospitable to vulnerability. If we haven’t experienced a particular sorrow ourselves, we can only have understanding and empathy for others when we have heard the story of someone else. That is why I want to share my story with you.

Something strange has happened to me. Even though I still feel physical misery at all times, I wake up in the morning with a head full of poems and ideas and conversations I want to have with people. Walking my dog is a joyful race down the sidewalk, and studying for midterms is a songwriting session about integrated marketing communications.

My joy these days is unreal.

Recently, I was swimming in the ocean alone. I thought to myself, “this is the best day of my life”. Then I laughed - recently, the best day of my life has been happening once a week. I thought back to swimming in the ocean three years ago. I remembered feeling boredom and apathy. Sorrow does not have to put a ceiling on our joy. In fact, deep pain increases our feelings of bliss. We can only know true happiness when we have a deep sadness in which to compare it.

I encourage you to choose joy. I encourage you to live in uncommon joy, even when it seems annoying and uncalled for and impossible. The act of choosing joy has been my greatest form of medicine. If you want a friend or person to practice your vulnerability on, please reach out to me. I want to see the color of your heart.

Thanks for listening.

Article & Photography by Madeline Long