This Beating Heart

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| This is the 84th story of Our Life Logs |


I was born in Bryan, Ohio in September of 1993, arriving a year after the death of my older brother, who had been born with heart defects. Because I was a healthy baby, my parents had no idea that I would soon develop some defects of my own.

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By the time I was three, I had one of my two younger brothers, and I can still 50% blame him for the start of my health complications that began on a sunny, must-be-outside kind of day.  He was around a year old and not to be trusted outside without an adult; therefore, he stood at our front door with his chubby little face smashed against the glass while his hands clapped the window for me to pay attention to him.  I would run to the window and smack the glass right back, sending him into a fit of giggles that started a back-and-forth nonverbal conversation between the two of us.  Ultimately, I smacked the glass too hard and broke through, landing with one hand on his back and another in a pile of glass.  I stumbled over him and ran to the kitchen, where Dad was doing dishes, holding up my bleeding hands.  The last thing I remember is him turning around while our multi-colored rug came rushing towards my face. This was the first time I passed out.

Kaleigh and brother
My younger brother and me, 2000.

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In third grade, my doctor just said I had a fancy-worded disorder (neurocardiogenic syncope) that meant I had to drink 120 ounces of water a day and add salt to all my food, while taking precautions when I felt faint. At 10 years old, I liked that I was different. I got to take pretzels and water bottles to school while my friends weren’t allowed. But this also meant that I couldn’t blow-dry my hair in the bathroom without sitting down, wear hats, or braid my hair too tight.

I continued to pass out a few times a year through high school, and in college it became 2-3 times per week. I was heavily involved in athletics, even showing horses through 4-H. My doctors assured me that I was doing everything in my power to stabilize my condition. My coaches carried pretzels in their pockets for excessive conditioning days and when I passed out just after the home stretch during a track meet.  Needles guaranteed that my head would hit the floor, and one time just the explanation of my impending ACL surgery led to my toppling over.

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It wasn’t until my senior year of high school that I began to think about my disorder and how my life was different from those around me. I had been dating a guy that’s a year older than me. He was a model citizen for our community and good to me. However, the summer before he left for college, he changed. My boyfriend started being more and more intimate with me, trying things we had never done before, or even discussed doing. Each time this happened, I couldn’t say anything to stop him. My body would sense my fear and shut down.

Normally, a person’s natural fight or flight responses bring about an increased heart rate and blood pressure when faced with an onslaught of pain, fear, or even exercise. My normal reaction is the opposite. My condition causes my parasympathetic system to override sympathetic system. This causes overstimulation in my vagus nerve, and then I pass out.

My entire senior year felt like a constant freeze and unfreeze process as my boyfriend went away to college, came back to visit, and went away again. I couldn’t tell him how uncomfortable I was, because every time I tried, my words froze in my throat and nothing came out. My mind just went blank until I was alone again.

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My solution was to make myself busier than I already was, so I didn’t have any time to see my boyfriend when he was home for break. I joined the musical because I knew that after my three-hour basketball practice, I could go straight to musical practice and not get home until at least 11. I even chose to attend a college that was four hours away from him. All my actions screamed that I wanted to get away, but my voice did not.

During Christmas break of my freshman year, my dear friend from England came to surprise my family. I was so excited that she was there, but even more excited that it meant I wouldn’t ever have to be alone with my boyfriend. The only problem was that there was a two-day gap between when she returned home and when he returned to school. That gap ended up being the perfect amount of time for him to rape me for what I thought was the first time, until I learned that most of what had been occurring for the previous two years would have qualified as well.

When I went back to school for the second semester of my freshman year of college, I spent most of my time with high anxiety, fearful that I could be pregnant. I didn’t do very well in most of my classes, barely passing Chemistry with a D-. I didn’t tell anyone—not even my best friend or mom—what was going on.

I felt like I was living two lives. On one hand, I had met a group of wonderful, joyful people through an organization called Young Life. Through this organization, we were placed on teams that worked with area high schools, providing a safe and fun community environment for high school students. On the other, I was living in a dark, lonely world of anxiety.

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When I was home for spring break, I hit my breaking point. I was tired of being sad and anxious, and I was tired of hiding it from everyone I loved. I sat in my parents’ blue van in the garage while I called my boyfriend to tell him that we had to break up. I was going to drive over to his house, but I knew that if I did, it would end the same way it always had.

To this day, I cannot remember what I said to him. All I remember was his response, warping all my words to make it sound like I didn’t love him anymore. I didn’t care. When it was done, I went inside and woke my parents up to tell them. They were shocked, because they didn’t know anything had been wrong. Then I went upstairs to tell my brother, who was also asleep. He didn’t say anything, just pulled back his covers and let me lie there with him until I fell asleep. I was glad to see our relationship hadn’t changed.

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I felt like a huge weight was lifted off my shoulders. I started to hang out with friends again, including the man that would later become my husband, Casey Cox. I spent over a year figuring out who I was, spending time getting to know my God. Every corner of my heart and spirit, piece by piece, became unthawed.

The first time Casey realized the truth about what a relationship with me might mean came after a road trip with carloads of friends.  A combination of my winter coat I was wearing and the heat that had been blasting for half an hour caused me to pass out in the backseat of my friend’s car.  While this was normal to me, these people I’d only recently met were terrified.

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Until I reached college, no one paid much mind to my health issues. My parents and everyone believed my childhood doctors and asked no further questions. Sure, I passed out more often than average, but my life was seemingly normal as long as I stayed away from heat and exhaustion. In college, stress took the forefront as the leading cause for my bouts of unconsciousness. I started sleeping around 18 hours a day and began passing out more frequently—even behind the wheel of my car. Finally, several neurological tests that revealed the truth of my childhood: each time I passed out, my heart stopped beating.

This Beating Heart-Kaleigh
Undergoing neurological tests, 2014.

As the semester progressed, I began to lean on Casey way too much emotionally and physically. He would make sure I was awake for class and drive me to each of our classes. Casey was more independent at the time than my condition allowed for, and though he did love me, he was stuck beneath the weight of everything I was going through. So, just before Thanksgiving break, we broke up. However, I wasn’t angry. I did cry, and I called my mom and cried with her on the phone. Yet something deep within me knew that we would end up together.

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My parents picked me up from college to be admitted to Riverside Methodist Hospital in Columbus, Ohio for a 3 to 5 day observation. I ended up in the cardiac ward after an IV and a trip to the restroom led my heart to stop twice in one day. On December 18, 2014, my life changed dramatically. I was given a pacemaker, medicine so that my blood pressure was no longer “barely high enough to sustain life,” and a nice pink scar below my collar bone.

My energy level increased almost instantly, and I was able to experience the world with new eyes (and a new heart). I discovered that I jump during scary movies, my back sweats when talking to people whether I’m nervous or not, I cry when I’m really happy, and I salivate when I’m about to eat chicken bacon ranch pizza.  Those things seem so trivial, but I can promise you I don’t remember experiencing those aspects of humanity until my surgery.

When I returned to Athens before spring semester, Casey and I met at local coffee shop.  We each had a lot to say—and it ended with our relationship rekindling. Casey was patient with me as I struggled to voice my pain, and he extended so much grace toward me day after day. We ended up getting engaged over Labor Day in 2016 and later married on July 1, 2017.

Kaleigh and Casey Wedding
On our wedding day, 2017.

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They say you appreciate things more when they’re taken from you, and though I didn’t lose my opportunity to live a full life, coming that close sometimes feels the same way. I was a completely different person before my surgery: I was silent and weak, but my pacemaker has allowed me to be who God created me to be. It will continue to stabilize the rhythms of my heart, regardless of my past, my shame, my happiness, and my future. I take comfort that I have family, friends, and a husband that stand by me in a similar way. They will not leave. Sometimes I just stare at my scar, envisioning the metal contraption beneath my skin, and I smile at my newfound strength.

Section Break

 This is the story of Kaleigh Cox  

Kaleigh lived a life in between fainting spells and assumed this was her “normal” until she was taken advantage of, and eventually opened up to her family once she realized the consequence of carrying her burden alone. Since initial publication of this story, Kaleigh has forgiven and reconciled with her ex, who now uses his life to help others. At 24 years old, Kaleigh lives a normal life with her husband and dog. Both Kaleigh and her husband work as English teachers and lead a youth group at their local church. Kaleigh has earned a Master of Education in Curriculum and Instruction and plans to continue to work with young people. With the pacemaker, Kaleigh feels a great connection with the superhero Iron Man.

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Kaleigh with her husband, 2017.

 

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This story first touched our hearts on May 15, 2018.

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