HEART ~ Function vs Emotion ~ A Ballet

The weekend of February 19th and 20th, it was my privilege and honor to participate in a ballet. And yes, I said participate in a ballet. Maria Caruso, Artistic Director of Bodiography Contemporary Ballet was approached by Dr. Dennis McNamara, Director Heat Failure Transplant Program at UPMC; who attended a previous ballet about a health issue. His daughter is an apprentice under Maria.
Knowing Maria as little as I now do, I can imagine that first vision she may have had. She is a remarkable young woman full of vision, passion, emotion, nimbleness and forth site. She is a go getter and persistent in doing what needs to be done – to the point when it was decided a ballet would be performed about heart transplant patients and pulmonary arterial hypertension patients – she asked and was allowed to watch a heart transplant. Now how devoted is that.
Notes were sent and a meeting was planned in September. Several heart transplant patients and several pulmonary arterial hypertension patients met for the first time to discuss the possibility of having a ballet in February – heart month. We were to meet at the ballet studio in Squirrel Hill.
Holly, a phriend and member of the support group, and I decided to see what it was all about. Bryan, her husband said he would drive, so off we went to see what great adventure lay before us. We arrived in Squirrel Hill at the appointed time, there was a nice parking garage not too far from the studio, with just a slight incline to get there. I jokingly said to Holly, I just hope this isn't on the third floor. Well, guess what. I looked at those steep steps, I looked at Holly and Bryan and 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. During those meetings the intent was to see how we as transplant patients and PAH patients felt – what we had gone through; what we are we going through now. The photo shoot was set on the third floor so Holly and I would not be in the billboard photos that would be placed around Pittsburgh announcing the ballet.
At that first meeting there were several of both types of patients but with work schedules and distance involved, not everyone could continue meeting as hoped. Four heart transplant patients and two PAH patient would be part of the HEART TEAM. The dancers practiced. we met at the cafe; the dancers practiced more frequently we met at the cafe; we then met at the Club One Fitness Center for our first all together rehearsal.
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 cellist 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 a sorrowful mode moving on to the upbeat of joy and extended life. The movements were more of a flowing motion. Their movements were graceful and emotional and filled with passion. A lump grew in my throat and tears welled in my eyes as I saw what Maria in her vision had created. The drive home that evening Holly and I spoke of the emotion they had captured of our struggle prior to and now with treatment; you could see the same for the heart transplant patients; their struggle prior to a transplant and now their new life.

I made fliers for the event; sent them to the appropriate sources. The pulmonary hypertension centers in Pittsburgh, the Pulmonary Hypertension Association in MD so all PAH patients in the area would know of the ballet and attend if possible. UPMC graciously bought tickets and any heart transplant patient or pulmonary arterial hypertension patient and their family members could attend at no charge.
The special weekend was fast approaching, I was so excited it was a good thing I had some self-control. I did buy myself a new top for the occasion – purple with a black sparkly bow on it and a black sweater with sparkles too. They were on sale, I'm sure left overs from New Year's Eve. Holly and I decided we would wear something similar – color-wise – purple to match our lips. Once someone asked me what shade of lipstick I was wearing. I said it's called lack of oxygen... ;o) Holly bought me a “bling” to match hers. A silver heart with purple jewels throughout. It is beautiful.
On Friday we were to meet at the Byham Theater at 1 p.m.. This theater was built in 1904 so you can imagine the culture that oozes from it's walls. It was restored in 1999 so technically/electrically it is very up to date. The murals and such are typical of the turn of the century – the other turn of the century. It is a captivating structure. We were to enter at the back of the building and had a special code to punch in. We opened the door and low and behold STAIRS, oh no. I had my cart with my spare meds and spare oxygen, there was no way I would be able to lug those up the stairs, then Holly found an elevator. Whew, saved again.
The dancers were stretched out in the main lobby, Maria was counting out the beat as they moved about and got their muscles ready for the evening performance. Watching them wore me out and we hadn't even started. I remember back when I could do things like that. I took dance when I was a kid... 4 or 5 years old but I always loved to dance – to go out dancing. They use 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 sob (that's short of breath) thank you very much.
The rehearsals began and yes there is a 's' at the end. We went through the performance; Maria is an excellent director – lighting had to be just right; those of us who are non performers had to learn how to walk into those lights that are set on the side for the proper ambiance. Several adjustments had to be made and re-rehearsed again – for the dancers again and yet again. Things had to be perfect. We had a break which gave us enough time to go next door to the Renaissance Hotel for a light dinner. Several of us went together and one of the heart transplant patients saw some friends from CORE (Center for Organ Recovery & Education) and when Pat told them what we were doing, they bought our dinner. Such an incredible gesture. We headed back and when we walked into the theater itself there were the dancers on stage still going over their performances. Practice makes perfect. One more run thru and then 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, the dancers danced. Each of us either had a dancer or maybe two or three dancers to express our function.

“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. This has been created to demonstrate the color, texture, movement, flow, and macrobiotic behavior of the organ itself as seen and felt from the eyes of the choreographer during heart transplantation.”
My dancers were Nicole and Maggie who did an excellent presentation of the struggle we with pulmonary arterial hypertension have and as I explained to them my struggle.
“Act II – Emotion: The second portion of Heart depicts the physical preparation prior to heart transplantation as well as the operation itself. The surgery will be visually demonstrated by world-renowned transplant surgeon Dr. Robert Kormos. The second act then displays the choreographer's physical interpretation of each of the patients' experience with heart disease (PAH too)
“Patient and performing artists meet again to represent the unification of a common organic disease. As the patients depart we prepare for heart transplantation and anesthesia.
“Each patient's heroic story is represented by yet another performance by their now emotional representation.”
During Act II as Dr. Kormos and Maria (his assistant) performed 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 old heart and a new dancer dressed in white was led on to represent the new heart prior to blood being added.
The dancers did single performances; in groups of several of the artists and in groups of just two or three. When it came time to do the 'patients' emotion the audience would note that each patient sat at the edge of the stage while their dancers showed the struggle some of us have gone thru and some are still going thru (PAH patients). It truly was very emotional.
Nicole and Maggie showed the pressure that I have felt in my chest when Maggie stood on top of Nicole! Then the closing of that segment Nicole dragged off Maggie showing the weight of my oxygen tank and all the other just-in-case stuff I have – such as my Flolan, my mixed meds my just in case meds.

Because of the length of our stay – being there early for rehearsals, 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 and my back up medicine; a change of clothes etc.everything for this now just-in-case life I lead as do other pulmonary hypertension patients lead. I used my red carry cart. Friday night I left it back stage, Saturday night I used it on stage. The back up oxygen is very heavy and Friday night it slipped off my shoulder and wrenched my arm. Soooo Saturday night the cart was with me.
After the performance there was a question and answer time and the audience had the opportunity to ask questions. Many were directed to the heart transplant patients but several were directed to me or Holly with questions about pulmonary hypertension. Each of us had a chance to share our feelings and emotion of the night and it truly was an emotional time. Tears flowed as we shared our appreciation for the accomplishment and of the awareness that was presented this past weekend. This performance was awesome and Maria and her dancers are phenomenal. Maria gave each of the patients a bottle of champagne and some gummy fish, we gave her a bouquet of red roses. Holly contacted me Saturday morning and asked if I had any phenomenal bracelets – those that say phenomenal hope (for and about pulmonary hypertension) – she wanted to give two to her dancers. What a wonderful idea so I made plans to give Maria and each dancer a bracelet for being such phenomenal people; we also gave our new phriends, the heart transplant patients one for being such phenomenal people for what they went thru and the hope they now give us.
After the performance we exited stage right... I gathered up my coat, used oxygen tanks and was heading to the lobby to meet my family. Oops... the incline in the theater -- how soon I forget things. I thought it would be easier for me to meet them in the lobby than for them to fight the crowd and come get me. I saw a young man and asked if he would pull my cart up to the lobby. He said he would and was surprised with the weight of the cart even though it was on wheels.
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