During the spring of my senior year of high school I got the phone call. I had a life-threatening heart condition called Long Q-T Syndrome. My world as I knew it came crashing down. I would have to live my life without the one thing I felt most defined me: sports.
Long Q-T meant no more playing basketball until the streetlights came on. No more racing my friends on the track. No more hopes for Division I soccer. No more dreams coming true for the girl who wanted nothing more than to compete the rest of her life.
Long Q-T is a genetic condition that can cause the heart to go into an erratic rhythm, meaning the heart begins to vibrate instead of pump. This can be followed by sudden cardiac arrest. Unlike a heart attack, which is typically caused by a blockage that prevents blood supply from getting to the heart, with Long Q-T, the heart stops beating because of an electrical malfunction. We have all heard stories of athletes suddenly dropping dead on the playing field. Long Q-T is responsible for some of those fatalities. There are typically no symptoms, and no warning signs. Most people don't know it exists.
And I had it. I felt like I was a ticking time bomb that could go off at any moment.
After hearing the news, I was confused, angry, sad ... but I was alive. I had been given a chance. I decided to concentrate on what I had, not on what I didn't have.
So I entered a pageant.
Yes, a beauty pageant.
Now, I am probably the least likely beauty contestant ever. From the time I could walk, I preferred rolling around in the dirt and playing ball with the boys to wearing a dress or brushing my hair. "Grace" certainly wasn't my middle name ("tomboy" probably was). But I saw the pageant as a new form of competition, a way to fill the void left by sports.
After walking across the stage more like a jock than a diva, I discovered I actually loved the experience, especially because I was given an opportunity to speak to the judges regarding my platform issue of lethal heart syndromes. It was an empowering and even therapeutic experience, and pageants soon became my new sport.
I still missed being an athlete, though. So I did some research into devices called implantable cardiac defibrillators, or ICD's. I asked my doctor, "If I get one of those metal things in my chest, will you let me play sports again?" He agreed, and one month before entering college I had an ICD implanted. I was the only person in the waiting room under 60, but I didn't care. Now, if my heart ever went into an arrhythmia, my new "guardian" would deliver an electrical shock that would get it beating steadily again. I could return to my life again, and my defibrillator had given me a new sense of freedom.
Yes, I returned to soccer, but I had a little beauty pageant in my blood now, too. Displaying my new scar on my chest (the athlete in me insisted it was a war wound), I returned to the stage and worked hard. In June 2006, I won the title of Miss Massachusetts 2006. A million thoughts rushed through my mind when the crown was placed on my head, the head of the same young woman who once couldn't walk in high-heeled shoes or put on mascara. I'd traded in my jeans and T shirt for a gown and crown. More importantly, I realized my new role would give me a megaphone for heart-disease awareness.
In January 2007, in front of a national TV audience, I proudly walked across a Las Vegas stage as a contestant in the Miss America Pageant. Backstage, one contestant had asked me if I wanted to borrow makeup to cover my scar for the swimsuit competition. "No, thanks," I told her. "I like it."
Once I returned home, e-mails came in from all over the country. Some were from other survivors; some were from the families of people who had died from heart disease. Those letters only made me want to do more, say more and accomplish more. I am now a national spokesperson for several heart organizations, and have even spoken to congressional staffers on Capitol Hill about my story and the work that has to be done to prevent more lives from being taken unnecessarily by heart disease. The best part of my role has been speaking to children and teenagers who also have heart conditions. It's not every day you get to hear a 5-year-old exclaim, "Wow, that's so cool! Miss Massachusetts has a heart problem too!"
I'm lucky--lucky to have a mom and dad who pushed to find answers, lucky to have doctors who cared, and certainly lucky to be alive. I'm just trying to give others that same chance.