I am certainly not average. But neither are you – so brag about it and bring out the quirks that unite us all! This was published in Hope to Cures.
Condition: Short Gut, PTSD
My name is Amy, and according to doctors, I am a “surgical disaster.” However, at 28, I feel truly blessed. I may not have a stomach, but I sure am hungry for life. 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 OR. 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 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.
My biggest goal in life was acting on the Broadway stage – and now I couldn’t even walk or talk. 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 hospital patient.
I was discharged a few months after I had come to, and a month after leaving, I got the lead role in a local musical – tubes, bags, and all, and still not even being allowed to have an ice cube. To cope with my hunger, I ironically found myself obsessed with food. I wanted an excuse to play with it, organize it, smell it – so I started a chocolate business which shipped all over the country, and taught myself how to cook, eventually starting a food blog. I taught nursery school, leapt across the stage in “CATS”, wrote over 30 original songs, wrote a one-woman play, started my autobiography, studied karate, yoga and dance, and starred in musicals. I needed to feel like there was still blood running through my veins – that I still was human.
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.
My show dared to explore a very personal topic – what could have been a tragedy – in a comedic, yet poignant musical. “Gutless & Grateful: A Musical Feast” was the culmination of years of struggling in the dark, and the spark in me that refused to die. It told my triumphant survival tale in a way that inspired many theatregoers and prompted them to rethink the ways they live their lives. It was such a powerful experience to share my story and have it affect so many people, that I truly felt firsthand the transformative power of theatre.
Now I’m empowering patients with this amazing, liberating realization: We ARE in control. We DO have the power to make our lives beautiful, powerful and meaningful. Not only in spite of what we’re going through, but because of it. Just because of this beautiful detour in our lives.
That is why I #LoveMyDetour!