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No, I Can’t Sit Down: What It’s Like Having an Open Wound that Will Never Heal
July 22, 2016
There I was, taking my final bow after 10 years of medical hurdles. I had done it. I actually wrote a one-woman musical about how I literally lost my stomach (when it ruptured in the operating room) and gained a story, appropriately titled, “Gutless and Grateful.”
It was a big deal to finally compile all of the journaling I had done for six years, unable to eat or drink, into a kind of “script” of my life. This was a big full-circle moment, complete with song, dance, and dialogue. After nearly losing my life at 18-years-old, I was now singing and dancing about it, and hopefully inspiring others. This was going to be the new beginning of things to come.I have a segment in my solo show where I explain how obsessed I became with food when I was unable to eat. I was so obsessed that I even started to cook. Even though I had regained medical stability, stamina, and spirit, I still had one thing: an ostomy I wanted to reverse, and a fistula — which is an opening after surgery in your body which really should have stayed closed — that refused to heal. I had the option of getting an elective surgery done to reverse my ostomy bag and even heal the fistula in the process.
After my show, on top of the world.
I made the decision to get this elective surgery, with the full support of friends and family behind me. After all, if I didn’t at least try to make things surgically better, I would go the rest of my life wondering what if. Right?
Right. I got my 27th surgery four days after I premiered my show in New York. Three extra surgeries, a few catheters, and two months at Mt. Sinai later, I woke up with more problems than I came in with.
I was overwhelmed: waking up in the hospital, and once again faced with with brand new medical team, trying to adjust to not only my lengthy medical history, but who I was. They couldn’t possibly understand that I was a person, not just a patient. Could they even fathom that I had starred in a musical about my life just not week before this? My medical history was so jaw dropping that doctors usually assumed the hospital “was” my life. They couldn’t seem to comprehend that not only was I able to do “normal, functional ” things, but also extraordinary acts in spite of my circumstances. My one-woman show was a triumph of the human spirit, my great comeback. Now, all of that work seemed to be erased in a heartbeat, as though everything I had accomplished was really just a dream I was waking up from.
I ended up staying in that hospital for almost three months, once again unable to eat or drink indefinitely. The surgery was a complete failure on all accounts, spiraling into three emergency surgeries within the first eight days. The surgeon kept saying that a few more stitches or quick interventions could fix things efficiently, but he kept cutting out more and more intestines, to the point where my father actually asked him to stop trying to re-operate.
During that hospital stay I lost 30 pounds and an immeasurable amount of spirit. I now had a massive, gaping wound in the middle of my stomach that scared me to look at, let alone think about. I tried to ignore the whispers I heard around me, but it was impossible not to hear the concerns, and worse, the acceptance that there was no answer to healing or improving the damage that my first elective surgery had caused.
Read the Full Article – Source: No, I Can’t Sit Down: What It’s Like Having an Open Wound that Will Never Heal – xoJane