Small Things with Great Love
At age 17, I already had my life mapped out: I would finish high school, attend Juilliard, join the Paris Opera Ballet and live happily ever after. I was dancing almost seven days a week. My entire existence was balancing trigonometry homework with stuffing my pointe shoes with lamb’s wool. I almost didn’t have time to think about boys — almost. I had big dreams. Nothing was going to stand in my way.
The previous few years had been a whirlwind. I was so overworked honing my craft that I would have sporadic episodes of passing out at dance class. Not unreasonably, my teachers dismissed it as pure exhaustion or dehydration. I began noticing I was becoming extremely tired and out of breath in these classes. I could barely get my heart to calm down after performing a routine. It wasn’t too surprising when I had trouble running the track in gym class. I felt so winded. I couldn’t catch my breath and started dragging behind. The coach yelled insults at me, hoping it would motivate me to pick up my pace.
I ended up at the nurse’s office several times over my high school career. The nurse excused my aforementioned symptoms and even some swelling I had, saying that I was exhausted from my schedule, or that I was hoping for an excuse to take a nap during school. I don’t blame her though: No one taught her, or any of my teachers, that a genetic heart condition was a possibility for someone my age. I looked completely normal despite the lingering death sentence looming inside my body. Many times after seeing the school nurse, my mom took me to an urgent care clinic where I was misdiagnosed with diseases ranging from asthma to chronic fatigue syndrome.
Everything came to a climax one night after school and ballet class. I was suffering from edema (swelling) so badly that my face was hardly recognizable. After consulting WebMD, like we all do, I attributed the swelling to the sodium in the extra-large helping of mashed potatoes and gravy I had on my way to dance class that day. I followed the online instructions to increase my water intake. The next day I was really swollen, and while at home, I collapsed on the way to the bathroom.
I was rushed to the emergency room with 20 pounds of swelling from extra water in my body. This is a rare and relatively unknown symptom of an underlying heart condition, and it wasn’t until a resident at the Cleveland Clinic thought he heard a heart murmur that they even considered looking at my heart. Several more doctors were brought in to confirm the murmur. Having all these people listening to my chest, I felt like a human seashell with the sound of the ocean inside me. Over the next few hours I was subjected to a battery of tests without anyone telling me what was going on. Afterward I was visited by Dr. Lever, a cardiologist, who got right to the point and told me I had a heart condition called hypertrophic cardiomyopathy (HCM). My mom literally passed out from shock. They put her in the hospital bed adjacent to mine, and when she recovered he explained to both of us what HCM is and that my activities with dance might be limited.
If you’re old enough, you might remember basketball players Reggie Lewis and Hank Gathers, both of whom died from undiagnosed, underlying heart conditions. Hank Gathers’ death in 1990 shocked the college basketball world when he collapsed on the court, was taken to the hospital and died there shortly after. Three years later, Lewis suffered a sudden cardiac arrest at age 27 while practicing for his next season with the Boston Celtics. Both of these top-flight athletes had HCM that led to their deaths from sudden cardiac arrest. These two men just scratch the surface of a condition that typically flies under the radar for the majority of people. We have a silent killer on the loose and a serious problem on our hands.
How much of a problem? It is estimated that more than 7,000 people younger than 18 experience an out-of- hospital sudden cardiac arrest and common causes of sudden death in competitive young athletes include HCM (26 percent), and coronary artery anomalies (14 percent).
So how do we keep as many young athletes as possible from becoming one of these statistics? How do we stop these senseless and sometimes preventable deaths?
I would like to work both from the ground up and the top down on this issue. According to one survey, 72 percent of young people who had SCA had recognizable symptoms that went unnoticed. In other words, nearly three-quarters of them were symptomatic! So here is one place we can make a change: Educate our coaches, teachers and parents to recognize the symptoms of underlying heart conditions. We can change this. We can save the lives of student-athletes.
I am working on legislation in my home state of Ohio that would require coaches, educators and parents to understand symptoms of underlying heart conditions. For example, fainting during exercise is a major warning sign. I fainted multiple times, and my coaches and teachers attributed it to dehydration or heat, so I was not removed from the practice or event.
My vision is to bring this legislation to Ohio, and then work to make it nationwide, sweeping legislation to impact and potentially save young people with symptoms. At this very moment all 50 states have some form of youth sports concussion safety laws in place, most of which require youth coaches and administrators to remove athletes from participation when they have “concussion-like” symptoms. We are protecting our kids’ heads but what about their hearts?
We can prevent a significant number of these tragedies through education. I am proposing a budget-neutral bill in Ohio that would require students and parents to read and sign a pre-participation document that sets forth the warning signs of SCA. It also requires coaches to watch an eight-minute educational video annually, sign off on understanding the symptoms of an undiagnosed heart condition, and commit to pulling a child showing those symptoms from exercise or competition. This reform can save many of these student-athletes who are symptomatic before they have a fatal cardiac incident. Versions of a bill like this have already been passed in several states, and I plan to make Ohio another.
I’ve walked in the shoes of these kids. I have heart disease, and it could have taken my life had it not been found. I was lucky, but we can change things so that other young people won’t have to rely on luck. I encourage you to write your state senators and representatives. (If you live in Ohio, write Senator Cliff Hite. I’m working with him leading our charge in the Ohio State Senate.)
I want young people to know that just because you’re diagnosed with HCM, it doesn’t always mean you have to give up your passion for sports. Most conditions these days can be treated, and doctors will work with you to set your limitations. Many are able to get back into sports after treatment. We are not captives of our condition or circumstance.
Ever since she was a child, dancing has been a passion for Lindsay.
With my second chance, I have committed my life to making a difference in the lives of others. My doctors, their diagnosis, heart surgery and my ICD have given me the most precious gift I could ask for — time. With this time and second chance I have been given, there is an even greater sense of wanting to leave a legacy of love and service. I have turned this deadly heart condition diagnosis into an impetus to educate and create awareness around young people and the heart issues facing my generation. I didn’t let my condition define me, and I continued to pursue my dreams, winning the crown of Miss Ohio United States in 2011 and using my platform to educate and advocate for heart health.
Through my work both locally and nationally, I have been recognized as a leader raising awareness for both diagnosed and undiagnosed heart conditions in student-athletes and young people. I was asked to be on the board for the Heart Hope Foundation, and I have become a national speaker for heart-related charities and causes. I have appeared as the keynote speaker at Ohio Senate events and campaigns, and at Simon’s Fund and Heart Hope Foundation fundraisers. Last year I was honored by former President George H.W. Bush as a Point of Light award recipient for volunteer and philanthropic accomplishments in my community and the field of heart health. I also was published in both Sports Illustrated and USA Today, writing editorial pieces on sudden cardiac arrest in student-athletes.
Life doesn’t end with the diagnosis of a heart condition. For myself, it just began a new path, one of service and advocacy for young people and student-athletes just like myself. Mother Teresa said, “We can do no great things, only small things with great love.” My dream is to live a life filled with small things done with immense love for others. You are stronger than you think. You can make a difference exactly where you are, with exactly what you have been given.