I Wasn’t Supposed To Survive A Week — Here Is My Story

Illustrated by Paola Delucca.
You only get baptized in the hospital if they don't think you're going to make it. And that's why, on the fourth day of my life, I was prayed over at Brown University Hospital in Rhode Island; I’d been moved there when I was just three days old in hopes they’d be able to do something about my heart. It didn’t look good. I was born with a congenital heart defect called a single ventricle heart. Most people have four chambers in their hearts: two atria (holding chambers) and two ventricles (pumping chambers). I was born with one ventricle and two atria. At the time, babies born with this weren’t expected to live through their first week; of those who did, most didn’t make it to a first birthday. I’d say my heart has defied the odds: I’m 33 and a professional singer and dancer. So, I'm looking at 2017, as I have each year I've been able to ring in, as another chance to make my dreams come true. Of course, those chances haven't come easy. My first open heart surgery was at age 5. Second at age 17. I have had approximately 10 heart cauterizations. I have had too many CT scans to count and several scopes. Hundreds of echos and EKGs. The procedures have been so numerous and spread out as to almost be a constant part of life for me. I was never expected to make it. First to one week, then to one year. Age 5. Then, 17. When I surpassed that one, I was told I’d live to my late-20s, becoming one of the oldest people born with a single ventricle heart. Now they live much longer thanks to medical advancements. My doctors have told me I could now live well into my 60s — jeez, I’ll probably surpass that, too.

It didn’t occur to me that I was supposed to be sick in bed, so I wasn’t.

When I was little, my mother and I used to travel from San Diego to UCLA many times a week to see doctors who told me to lay off the athletic activities I loved. They warned that I could sustain injuries to my surgery sites — contact sports were off the table. They told my parents not to let me swim competitively, lest I push myself too hard and run out of oxygen in the middle of the pool. This disease causes shortness of breath, lack of oxygen in the blood, irregular heartbeats. But me? I always loved to dance. I used to take my mom’s slips and pretend I was dancing with Mikhail Baryshnikov in The Nutcracker. It didn’t occur to me that I was supposed to be sick in bed, so I wasn’t.
But I wasn't allowed to take group dance lessons at all until I had that first heart surgery; the teachers were afraid I’d collapse and die on their watch. The doctors were afraid of this, too, I think. I wasn’t always aware of all the fear around me: I just remember not being able to dance as freely as I wanted (and I always wanted to). I would get tired and turn blue (this is called cyanosis, or a lack of oxygen in the blood), but I didn't want to stop. That first surgery, when I was 5, turned my right atrium into a quasi-ventricle to allow blood from my body to go to my lungs and get oxygen. When I woke up, I was red for the first time in my life, I remember having more energy now that my heart was finally up to speed. (Don't forget how much your heart does for you every day.) The first words I said were, “Daddy, I can dance now!” But that doesn’t mean I was magically “healed.” There would always be challenges to overcome.

As I breezed past one life-expectancy date and then the next, I kept my sights on the stage.

That burst of energy only made me more hooked on performing. I wanted to try everything and would not let my heart disease get in the way. I tried to live like a normal, active kid, but perhaps with a little more oomph, because I didn’t know what my timeline really looked like. (No one does, if you think about it.) I always sensed my life might be short, so I ought to live while I can to the fullest. I still respected and listened to the doctors — but I didn’t want to sideline myself. Because I was constantly undergoing or healing from procedures, I knew my body probably better than most people do. I could push myself just to the limit; my body always tells me when enough is enough. As a pre-teen, my disease meant I missed a lot of school. Though explaining this to teachers and peers was frustrating and awkward, I think it made me appreciate life more. I knew I wanted to go to college, partly because for years I didn’t think (nor did my parents and some doctors) that I would be alive to make it. That’s not necessarily why I entered the arts, but it has something to do with why I pursued it so passionately — and still do to this day. What did I have to lose if I gave it a try? Once I was in college, I spoke to parents struggling with their child’s conditions. I helped them see what their children are going through and what a possible future could hold for them. I told them that singing and dancing were my passion, and as I breezed past one life-expectancy date and then the next, I kept my sights on the stage. I was able to attend a performing arts middle and high school where I danced two hours a day — and my heart kept up. But I also missed half a year of school to have a pacemaker put in. Navigating these things as a teenager was frustrating, and I’ll be honest about that, but in my long recovery at home, I had the time to realize my greatest love was singing.
After college — and with a fresh battery in my pacemaker (a procedure I'll need to have every five to 10 years) — I soon landed my dream job performing on cruise ships. I sang and danced on the main stage for Broadway, rock, and Cirque de Soleil shows. This took me from Russia to Fiji and many parts in between. Traveling, meeting all kinds of new people, and still doing work that you love is really like living life to the fullest, whether you’re facing an expiration date or not. And finally, the limits on me and my heart aren't as strict. I still have to take medicine three times a day and I will never be able to visit anywhere at high altitude (which also means no skiing!), but oh well — I’m a SoCal girl, anyway. The pacemaker helps get my heart rate up in order to do strenuous activity, which is a part of my job, and sometimes I feel it kick in when I dance — but that’s only about 1% of the time. The rest of the time my heart beats on its own. This is nothing short of a marvel of modern medicine. And, my pacemaker records different types of events that my heart has experienced; like physical memories held inside my heart. Who gets to have that? These days, I travel the country, taking performing gigs as they come. I'm still not holding back. I still test my limits to see just how high I can soar. I recently returned to Southern California where I am teaching elementary school children theater, dance, and voice; I hope to share with these kids the crucial importance of believing in your own ability to achieve your dreams. I’m also starting to work on my first album, which is something I’ve wanted since I was around 10 years old. Based on my track record with other childhood dreams, I have reason to believe I will accomplish it. So here we go, 2017: I can do anything I want if I put my mind to it; my heart will just have to keep up. Next, see how a beauty routine passed down from generations helped this writer find his "very good light." Quit hating (on yourself!) and make room for real personal growth. Or, join Stacy London in NOT taking on too much for once. It's your year, make it magic.

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