It started in 2005 – a week before my senior prom. It was our second night of Passover, and my stomach started hurting. My dad said it might be gas, but he took me to the ER for an x-ray, just in case. On the way there, my cheeks actually puffed up, soon after, I collapsed, and I woke up from my coma months later. Apparently, there was a blood clot on the mesenteric artery that caused a thrombosis, and when they cut into me, my stomach actually burst to the top of the operating room. Both of my lungs collapsed, I went into sepsis shock, and I needed 122 units of blood to keep me alive. At 18, I was read my last rites.
When I finally awoke from my coma months later, the doctors finally told me what was going on. I had no stomach anymore, I couldn’t eat or drink, and it was not known when or if I would ever be able to eat again.
What do you say to that? I was shocked. I had been too sleepy to be hungry, but now that I knew what the real circumstances were, I was devastated. I was confused, like I had woken up in someone else’s life. Where was I? Who was I? Desperate for answers I even googled “How do I find myself?”
Part of me wanted to curl up in a ball and disappear. Part of me wanted to throw something. I was frustrated. I had just gotten my college acceptance letters – was I the victim of some cruel joke? That’s when I made the conscious decision, that as long as this was my life right now, I would not let myself feel like a victim or a hospital patient.
My extremely supportive family and I found the humor and fun in everything, and made our stay at the Intensive Care Unit as pleasant as we could. Whether it was setting up bowling pins in the hallway, serenading the doctors on guitars, or even my parents sneaking me out of the ICU in my hospital gown to go shopping, my attitude always remained to make the best of whatever circumstances I was dealt.
The more alert I became, the more I remembered of my old life P.C. – pre-coma. I missed water so much – drinking it, touching it…The first time they let me splash water on my face, I cried. It reminded me of washing my face in my old bathroom, in my old body, and I didn’t know if it would ever feel the same way again.
In the hospital, the highlight of my day was finally being allowed to brush my teeth, just for that soothing gargle of ice-cold water that would kill me if I ever dared swallow it. Those basic human needs I couldn’t fulfil reminded me of other primal needs I couldn’t fulfil, like being outside, feeling the cool air on my skin…I would’ve given anything to run around outside, and would often daydream about frolicking through the sprinklers just outside the hospital.
Soon, I started to put words to the anger and pain I felt. I typed and typed like a mad woman for hours, in an effort to process what was happening, and to find myself through the uncertainty. That was the only way I knew to still make my mark somewhere – to prove that I was still alive, kicking, and breathing.
I felt isolated from the entire world and from my former life, but still here, and still desperate to live some kind of substantial, meaningful life. I needed an outlet to just get all of my confusion, frustration, and musings out. I needed to process all that had finished and all that was still happening to me, and all that was to come in my very uncertain future.
One day, I picked up a paint brush and my world changed. I had found a way to express things that were too complicated, painful, and overwhelming to put into words.
I wanted spiritual fulfilment, to find God again, but I’d give him up in a heartbeat for a hunk of steak. Instead, I had what my dad would call my nightly “pina colada cocktail” -a three liter bag of milky white IV vein-food that I would carry around in a purse for 16 hours a day, in addition to a feeding tube in a backpack.
My parents were heartbroken that I couldn’t eat, so they rid the house of all food. My dad would come home from work and hide in the garage eating his eggplant parmesan. But my sense of smell at that point was superhuman, so I was definitely on to him. I missed having contact with food. What people don’t really understand is how playing with food, seeing it, smelling it, actually gave me some kind of vicarious satisfaction. In the hospital, all the kids who couldn’t eat were always the ones who wanted to play in the toy kitchen. We’re obsessed with what we can’t have, so I was going crazy with no food in the house!
Not being able to eat was difficult, but not being able to drink – especially in the heat of summer – was just torture, After a full year of not even an ice cube, I was finally allowed to drink clear liquids, HEAVEN!
Two ounces the first week, then 4, then 6…I couldn’t wait to take my very first sip of water with the tiniest straw I could find. I took a sip and then I remembered that water didn’t have any flavor. Day after day, week after week, month after month, I waited patiently to be able to take my first big bite of anything. It wasn’t until two years later that I was finally able to eat, thanks to a 19-hour surgery and three shifts of nurses and doctors. As I was recovering, every other person came up to me and said, “oh yeah, I worked on you! I worked on you too!” (I felt like quite the celebrity.)
Life finally seemed enjoyable. I could eat and I thought any surgeries were a distant memory. I went to California on vacation, and suddenly my wound ruptured. I was immediately taken to the Yale Medical Center. Once again, I was told that I could not eat or drink so the wound could heal. When life felt shaky, I deferred to my rock – my paint brush and my creativity. My mother went home and gathered every scrap of fabric she could find, an old set of acrylics, and a glue gun. Every day, I worked feverishly in my hospital bed, gluing, painting, and letting my imagination set me free. Every day I would create a new work of art, a new source of hope, and display it outside my hospital room. Soon, nurses and even mobile patients would stroll by my room to see what I had created.
When I got home, I put up another art show – a collection of 60 mixed media and acrylic paintings, 30 of which I had made in Yale. The biggest reward was being able to inspire others by sharing my message of hope and strength. My gratitude and appreciation of life – the good and the bad – motivated others to find the same positivity that I had tapped into through my paint brush and glue gun. This is why I create. I create to live, and to remind myself that I live.
Suddenly, I felt like I had a mission to share my story with the world. A message that with hope, strength, and little creativity, anything is possible. I delved through literally thousands of typed journal pages that I kept over the years. I decided to take some of my journal writings, combine both original and established songs, and make a one-woman musical of my life so far.
I also didn’t want to give up on my dream of pursuing my education. Better late than never, I am currently enrolled in my freshman year at Hampshire College. I would love to eventually pursue my masters in expressive therapy – I see how the arts have helped me find my happiness and my self when nothing felt solid in my life. Helping others through their own hardships would be the biggest reward.
My mother always used to tell me that “Man plans, God laughs.” But if we can laugh along, then a plan unfolds that can be something even greater than what we anticipate. I may be a late bloomer, and my agenda as an audacious teen might have altered, but because of a beautiful detour, I see life richer than I ever would have known. As long as there’s life, there’s reason for hope, gratitude, and something to be happy about.