It always fascinates me how this blog has enabled me to connect with people across the world who fight the IBD battle, day in and day out. Last week—I received an email from Stephanie Horowitz, an actress in New York, gearing up to take the stage later this month to perform a cabaret show about life with Crohn’s. She randomly came across my blog and decided to reach out to me. This week—it’s her inspirational story that I’d like to share.
A Guest Post by: Stephanie Horowitz
“There’s just one life, it’s mine.
What comes next? I don’t know.
I’ve got confetti I’m ready to throw.
I’m gonna laugh all of my laughter,
Before I go.”
Those insightful lyrics are by Allan Sherman and they are featured prominently in my upcoming one woman show Flare: A Crohn’s Cabaret.
Hello! My name is Stephanie Horowitz and I am a performer living with Crohn’s disease. February 1st, 2015, Super Bowl Sunday, and the day we were supposed to move to our new apartment, was a bad day for the Seattle Seahawks and for me. The stress of moving and lack of sleep from performing and packing… proved to be the ‘perfect storm. That’s the moment I experienced my first flare of Crohn’s. I had recently (reluctantly) started Humira and it seemed to be working well, until that day.
What resulted was a solid year of flares mostly triggered by stress. Things like adjusting to a new town, problems relocating a business, losing a relative, people around me losing jobs, everything snowballed into a great deal of stress. I tried multiple medications (both traditional and non-traditional treatments), and underwent a colonoscopy. It seemed nothing could make a meaningful difference. At this point, it was difficult for me to eat and I dropped about 65 pounds. My body and quality of life were deteriorating right before my eyes. That’s when my GI doctor decided to put me on Prednisone.
There is always a love/hate reaction when I hear people talk about this. If you don’t know about Prednisone, it is a steroid that will quickly make you feel better… but can have devastating side effects if taken for a long time. For me, this time, thankfully, it was mostly good. I got my appetite back. I was eating again and loving it. Despite some acne, I was me again, but me at volume ten! It was sort of fun for me, though probably pretty annoying for everyone else!
During this time I felt energetic and fiercely creative. I usually have a hard time shutting my brain up, but now it was on overdrive. One of the side effects of Prednisone is insomnia. I would shoot up in bed at in the middle of the night and think “This weird thing that happened to me today reminds me of this song!” Or “This is how I felt before and it reminds me of this song.” I wrote these ideas down. I didn’t know why. Slowly when I had six or seven ideas I thought to myself… “So…I guess we are doing a cabaret show?” It was funny. It was sad. It was punchy. I knew damn well I was too sick to perform it, but something told me, “If I build it, they will come.”
I knew that this ‘show’ and these ideas were being given to me for a reason and I needed to honor it. I had never dreamed of doing my own show, just me, but I wanted to use it as a vehicle to process what was happening to me and to help people who might be going through the same thing.
I decided to contact a wonderful pianist I had worked with on prior cabaret projects. I told him I had something that might be a show and I had no idea if it was any good or when, if ever, I would be able to perform it, but I wanted him to be a part of it. He was game so I took my steroid-filled self to the city for a coaching session with him.
I told him the story of what was happening and I sang him the songs. He said “Yes, this is a show. Let’s get it on the books!” I told him I could start rehearsing and see what happened.
Fast forward a few months, still on steroids, after yet another treatment failed. Then I started Remicade. The heavens open up! The treatment works and I told myself the show must go on.
What’s it like to walk in my sparkly heels? Is it possible to take on the world from your bathroom? Find out in this delightfully inappropriate 60 minute romp entitled, “Flare: A Crohn’s Cabaret.” The show is Saturday, March 25 at 7 p.m. at the The Duplex (a Piano Bar and Cabaret Theater in New York).
This show is a valentine to patients and caretakers alike—anyone who has Crohn’s, Colitis, or a chronic illness. The show will also speak to anyone who has struggled with their weight, anyone who is loved, anyone who likes to dance, meditate, or sing, or anyone who just likes a bawdy night of cabaret theatre. You can buy your ticket at www.purplepass.com/Flare . Use code IBD for a discount!