During the weekend of February 19-20, 2010, it was my privilege and honor to participate in a ballet called HEART, Function vs. Emotion. And yes, I said participate in a ballet. Dr. Dennis McNamara, Director of the Heat Failure Transplant Program at UPMC, approached Maria Caruso, Artistic Director of Bodiography Contemporary Ballet, about doing a ballet about a health issue. They decided to perform a ballet about heart transplant patients and pulmonary arterial hypertension (PAH) patients, and they met with several heart transplant patients and PAH patients to discuss the possibility of having a ballet in February – heart month.
The first planning meeting for the ballet was in September at a ballet studio in Pittsburgh, Penn. Holly, a phriend and member of my support group, and I decided to see what it was all about. Her husband Bryan drove us. We arrived in Squirrel Hill at the appointed time, and I jokingly said to Holly that I hoped the meeting wasn’t on the third floor. Well, guess what? It was. I looked at those steps, and I said there is no way I will be able to get up those stairs to the third floor. Holly felt the same, so Bryan went up to the studio and mentioned that we would not be able to do the stairs. Maria came down, and we all went across the street to a cafe and had our first of several meetings.
The intent of those meetings was to see how we as transplant patients and PAH patients felt, what we had gone through and what we are going through now. Four heart transplant patients and two PAH patient would be part of the HEART TEAM. After that first meeting, preparations really got underway. The dancers practiced; we met at the café to share our experiences with Maria, the artistic director. The dancers practiced more frequently; we met at the café. Eventually, we met at the Club One Fitness Center for our first rehearsal together.
We, the patients, watched as the dancers danced and Maria counted out the beats. She told us the musicians would be Cello Fury, three classically trained cellists and a rock drummer. She had a tape of the music they specially composed for this ballet. I watched in awe as those dancers moved about to the beat of a heart, to the moan and drone of sorrowful tones that transformed into the upbeat tempo of joy and extended life. The movements were more of a flowing motion. Their movements were graceful, emotional and filled with passion. A lump grew in my throat and tears welled in my eyes as I saw what Maria’s vision had created. During the drive home that evening, Holly and I spoke of the emotion the dancers had captured of our struggle prior to and now with treatment; you could see the heart transplant patients felt the same about their experiences.
I made fliers for the event and distributed them before opening weekend. I was so excited that I bought myself a new top for the occasion – purple with a black sparkly bow on it and a black sweater with sparkles to match. Holly and I decided we would wear something similar, and Holly bought me “bling” to match hers: a silver heart with purple jewels throughout. It is beautiful.
On Friday, February 19, we met at the Byham Theater at 1 p.m. We entered the building through the back entrance and, low and behold, STAIRS – oh no! I had my cart with my spare meds and spare oxygen, and there was no way I would be able to lug those up the stairs. Luckily, Holly found an elevator. Whew, saved again.
The dancers were stretching out in the main lobby. Watching them wore me out, and we hadn't even started. I remembered back to when I could do things like that. I took dance when I was a kid, and I always loved to dance. They used to call me twinkle toes because once I got up on the dance floor, I never sat down until the music stopped. Now, well now – we won't get into that. I can tap my toes and shake my shoulders a bit and roll my hands/arms until I'm a little short of breath.
The rehearsals began, and yes, there is an 's' at the end. The lighting had to be just right, and those of us who are not performers had to learn how to walk into those lights. Practice makes perfect. Soon it was time to put on our best and get ready for the real thing. I didn't wear a tutu.
When the curtain opened, we were in a tableaux arrangement; the music began, and the dancers danced. As the program explains, “Act I – Function: The first portion of Heart is an abstract rendering and representation of the organic function of the heart. It begins with the introduction of our collaboration and the visualization of the connection between each patient and their heart.”
Each of us either had a dancer or a few dancers to express our heart’s function. My dancers were Nicole and Maggie, who did an excellent presentation of the struggle PAH patients go through, and I explained my struggle.
Act 11, entitled Emotion, depicted “the physical preparation prior to heart transplantation as well as the operation itself.” As transplant surgeon Dr. Robert Kormos visually demonstrated open heart surgery, a dancer mimicked the struggle a heart would have prior to and during the surgery. The doctor then lead the dancer off stage, representing the removal of the old heart, and led a new dancer dressed in white on stage, representing the new heart prior to blood being added.
When it came time to show the patients' emotion, each patient sat at the edge of the stage while their dancers showed the struggle some of us have gone through (transplant patients) and some are still going through (PAH patients). It truly was emotional. My dancers showed the pressure that I have felt in my chest when Maggie stood on top of Nicole. Then for the closing of that segment, Nicole dragged Maggie around, showing the weight of my oxygen tank and all the other just-in-case stuff I have such as my Flolan, my mixed meds and my just-in-case meds.
Because of the length of our stay – rehearsals early in the day and the evening show – I knew I would run out of oxygen in my marathon tank, so I had to bring back up. I also had to bring my mixed medicine, my back-up medicine, a change of clothes, etc. – everything for this now just-in-case life I lead. I used my red carry cart. Friday night I left the cart back stage, but Saturday night I used it on stage.
After each performance, the audience had the opportunity to ask questions. Each of us had a chance to share our feelings and emotion; it truly was an emotional time. Tears flowed as we shared our appreciation for the accomplishment and the awareness that was presented over the weekend. The performances were awesome, and Maria and her dancers did a phenomenal job.
At the end of the show that first night, I gathered up my coat and used oxygen tanks and headed for the lobby to meet my family. I saw a young man and asked if he would pull my oxygen cart up to the lobby. He did and was surprised with the weight of the cart even though it was on wheels – another awareness-raising moment.
This was a phenomenal event – a time in my life I will cherish forever. I thank all those who made it possible and also to all who participated in making it a true and emotional success.
Read more about Merle from the 2007 Grove City Medical Center Newsletter: Living with Pulmonary Hypertension: A Woman’s Viewpoint