Personal Narrative: My First Heart Surgery

In our lives we face multiple challenges. It makes you feel like tomorrow won’t come or that the sun won’t shine again. We wonder when the pain will stop or if the hardest days of our lives will be the last. At a very young age, my journey of hardest days were just about to start for me. This journey of mine began on the day I took my first breath on this beautiful earth. Seconds after that moment, life handed me my first challenge.

On April 27th 1995, I had my first heart surgery. It was an easy repair, and I was healed. Just check in with a doctor every 6 months to make sure it stays the same. They told me I was able to grow up and live a stress free life from here on out. So I took that news and ran with it. I started swimming when I was five years old.

The sport came naturally to me, head first, I fell in love. I felt like I was a fish that was missing from the water for so long. I thrived off of competition like it was oxygen. I had to be in every meet, invitational, or open swim. For years when I was young, my individual zones of optimal functioning was high. I wanted to race the faster girl, be the last leg in the relay, or be seconds away from breaking a pool record, you name it, the pressure it put on me made me perform my best. Even when I was out of my sport, during work outs I would perform better when it was intense. The word stress or state anxiety never came across my mind. I was young, determined and healthy. So to stay healthy I always went to the doctor when they told me too. In May of 2007, I went to a routine checkup for my heart. It felt like a normal day for me, they brought the machine in that takes pictures of my heart and they always let me listen to my heart beat. But this day, instead of my doctor smiling at the screen with satisfaction, she looked upset and turned off the screen. As I waited for the doctor to come back in the room to give me my results, this sense of fear came over me, something just didn’t feel right. When she finally came back, in her hands were results that changed my life forever. I was diagnosed with an enlarged Aorta, meaning at any point my heart could tear. I was 12 years old at the time. Thoughts raced through my head. Why me? How could this happen? And the biggest question, what about swimming? They told me I had to take it easy until they did further research, but that wasn’t good enough for me.

Right there and then I felt what it was like to have state anxiety. The fear of not performing again was petrifying. So needing more answers I took my news and went to doctor who had more knowledge about my situation. Reaching out to DuPont hoping to get clarity, they just agreed with my last doctor and on top of it they wanted to mediate me. With this medication it would thin my blood and I would have greater chances of passing out. I couldn’t agree with them, I begged my mom to take me somewhere else. I couldn’t handle the stress of the medication on my body. Then later that month we took the news from DuPont and ended up at Johns Hopkins. They specialized with kids who had heart problems and analyzed the diagnosis with a different approach. They thought it was rare that at such a young age I would be experiencing this dramatic of a heart defect. From there they started doing genetic testing to see if they could pin point anything that could cause this defect. After 6 months of research and genetic testing I got a call back from my doctor to come in and discuss their findings. I was diagnosed with Marfans Syndrome

and Ehlers Danlos Syndrome which are connective tissue disorders that effect the body in different ways. The problems I face start with my eyes. I will eventually lose my sight, resulting in surgery. Next, my immune system doesn’t function without supplements. I must take pills just to keep myself out of the hospital. My bones are getting weaker, eventually leading to osteoporosis. A battle of day-to-day pain in all of my joints as well. Then lastly they worst part is my heart. My aorta is measuring higher than the normal size. At any point of my life, the blood supply that flows through my heart could just tear, killing me in minutes. Being an athlete this was the hardest news to receive. In swimming I needed these aspects in my life to be 100% functioning. Competing got harder for me after the news. When I stood behind the block, my state anxiety would hit me. I would get cold, headaches and even dazed vision. One time it got so bad I nearly passed out on the pool deck with the thought my something happening to me during my race. I couldn’t sleep the night before races and it wasn’t because I was excited but because my anxiety would consume my mind. I was terrified of my own body and it only got worse. My state anxiety turned into trait anxiety. My individual zones of optimal functioning was low. I hated the pressure swimming would put on me. The thought of swimming the faster girl or the best team in the state would make me perform horribly. I hated myself when I performed badly, it made me feel like I was useless. I couldn’t handle it anymore so I tried to cope with the feelings in a way I will be ashamed of forever. I started drinking and doing drugs, I was hoping to numb the pain I was feeling. I just wanted to feel nothing just for a moment. But the drugs only tore my immune system down and I got sick eventually. I was close to under 100 pounds at the age of 16. I struggled with getting my weight back up and at this point I struggled getting my motivation for swimming up as well. I was constantly in the hospital which made it hard for me to compete with my team. I felt like a letdown. I was the team captain for a huge high school. Leaders are supposed to pursue excellence, make goals, and create situations with positive outlooks. I did none of those for my team, I felt like I was living a lie. I was never honest with my teammates. I made excuses and told lies about what was going in my life. I could feel the cohesion with my team getting worse. The communication I had with my teammates was ineffective. I was never clear with things, I never stated my feelings about situations, and I always had hidden agendas. I felt my team slipping away from me and myself slipping into a darker place. The feeling of anxiety has finally engulfed my entire body. Just when I thought it was over one teammate of mine came to me. She noticed everything that was going on but was afraid to confront me. Slowly she communicated to me everything she knew I was going through. For weeks she didn’t stop checking in on me and eventually helped me take the next step in my life. The next two years of my life I spent with a therapist practicing psychological skills training (PST). It wasn’t an easy two years for after everything I put myself through. We started with mental toughness. Learning how to focus on my sport, rebound from failure and cope with pressure. I had a lot going on my life so I needed to learn how to balance out my thoughts in my head with my performance. So I would do a lot of self-talk exercises. I would practice with my therapist in her office and then practice my self-talk at meets and during workouts. We then worked on goal setting. She had me create future goals I wanted to accomplish. They could be big or small. And after that we practices a lot of imagery. She would have me lay there and she would talk me through my race. What it would feel like to race again without feeling anxiety. The step by step motions of my body from standing behind the block to finishing my race. The two years I spent with her didn’t just change my life but saved my life. All these methods and practice of PST helped me perform with confidence. After high school I continued to swim at Bloomsburg University. It was a huge leap for me after the brutal years I went through but I took on the challenge. Eventually I started seeing myself fall back into the same habits as I did in high school and with the fear of losing myself completely, I called it quits. I am happy with my decision of cutting swimming out of my life. I knew at this point in my life that I will never be like the young, competitive, eager, and stress free girl that stood behind the block. There’s something’s is life you can’t control and then there are some you can. I regret not taking control of my life when I knew I was in trouble. If I could change things I would but life lessons come from failure and from here I can only continue to cope.