A Funny Thing Happened...

On the way to maturity. I've been gradually begun to feel this desire to take initiative when I see fit, because I do not know what lies ahead. Having surgery puts that in perspective.

I was unfortunate enough to face death, not once, but twice. The first time occurred when I was seven. I was experiencing symptoms of what would be diagnosed later as Ulcerative Colitis. I couldn't go to school. I couldn't leave the house. I had to undergo a medical test to confirm the diagnosis; I wasn't allowed to eat solid food for 24 hours before. I understood that I was ill, but I had no idea as to whether or not what I had was treatable. I knew I was bleeding, and that I was sluggish and in pain. The night before I had to undergo this test, I was watching TV in my mother's room. I was thirsty. She saw me licking my lips and nodded her head. I could get water. I hovered over the sink. I wasn't in pain, so I could think. And I concluded that I was going to die. So I decided I would take solace in every moment I was alive. I would play and laugh with all of the energy I had. I would cuddle more often and spend as much time with my parents and my brother as I was allowed. Resentment only wasted time.

The second was when I was eighteen. I had been in remission for almost ten years. Over that summer, I began to look pale. I had a few red spots on my knees. I thought I'd bumped them. They were the marks of anyone who has active inflammation in their body. I was running daily fevers. But I was starting college in the fall, and I couldn't afford to delay my start. I had wanted to go to college ever since I was fourteen. So I finished the first semester. By December, I was barely able to leave the house. When I wasn't lying on heating pads, I was sleeping. I had been given various prescriptions for Entocourt and Purinethol, with the promise that one had to put me back into remission. Purinethol didn't stop the pain, and Entocourt made me lose my appetite. I remember waking up one day in January. It was the day the second semester was supposed to start. I was once able to work out for three hours. I couldn't work out for ten minutes. I was too tired to read and in too much pain to write. I didn't have enough strength to go to school. So I laid back down and closed my eyes, hoping they'd roll back into my head.

I was operated on January 31, 2010. After a few arduous days trying to walk and get out of bed without the aid of a few painkillers, I was sent home. I was ecstatic enough about not being in pain to make it seem like I was never ill. My mom gave me the option of returning to school early. I chose, instead, to take the semester off and return in the summer. I reminisced about high school, and I started working out again. I bought coffee for myself every day, and made sure that, if I wasn't reading, I was writing. I wrote several short stories about my experiences. But, by May, I felt bored and incomplete. I started my vacation to get away from the pressure of having to perform for someone, be it my professors or my parents. If I wrote, it was for the reader. I studied to please my parents. I needed to learn how to study, not because I was asked to, but because I wanted to. And the summer semester was less crowded, shorter, and free of the rush that's become iconic of the school year. It was optional. So I decided to take a music course, just to test the proverbial waters of academia. It was almost my second year; I considered myself a Freshman.

When I made the decision to go to school, I did it as a symbol that I could let the past be, and that I was capable of reinventing myself. Even if I did recover, I still have doctors' appointments every six weeks. They served as eerie reminders I felt that I didn't need. I made the decision that, should I experience another flare up, I would simply have a colostomy. I would rather walk around with a bag and a stoma than have to worry about pills, have the potential flare up looming over my head, or constantly be plagued by fears of colon cancer. I made this clear to my doctor, who refused to consider the idea of a nineteen year old wearing a permanent ostomy bag. A pull through was not an option, because of a potential for a flare up in the small intestine.

I walked out discouraged. I came back into class with my head hanging, trying not to think about what my doctor told me. We were discussing a lieder, or mini-drama, by Schubert, called "Erlkonig", or "The Angel of Death", based on a poem by Goethe. It was about a sick boy, whose father carries him to the doctor. The boy claims he sees the Angel of Death, and that he is trying to entice him. His father doesn't believe him until the Angel realizes the only to win the boy over is to take him by force. The boy dies in his father's arms.

I realized that a connection between my dealings with disease and what I was studying would be inevitable, no matter what song we were hearing. So, instead of fighting, I decided to use it as an outlet to wrangle with the situation. There and then, I pitted myself against Death. And Death was letting myself lament, showing weakness in the face of illness, and in front of doctors and parents constantly asking how I was feeling, waiting for me to admit that I couldn't keep going. They had seen me lose weight and become pale, but I wasn't officially sick until I admitted it. That's when I stopped working out and going to school. That's when I became a patient.

I didn't want to admit my experience in front of the class, so I told my professor. I didn't specify what I was diagnosed with when I was seven. But I did say that I have been ill enough to think I would die. I didn't know what reaction I would get, and I wasn't sure I cared.

He said he had a similar experience when he was in his twenties. What happened to him is not important. What is important is that he related to me.

There is a unique bond that exists between people who have had to wrangle with the possibility of dying. It's in our faces and in our eyes, and in the way we connect on other topics, and overlook it when we don't. Because we know we've all experienced enough hardship on our own to fight over details.

I began to come into my own as a patient. There is still the chance that I may develop cancer. I may have to have surgery again at one point. I still need to go to the doctor every six weeks. And these are all fundamentally human.

I know I'm not the only one.