I started freshman year very happy to have chosen Cal Poly. I loved my roommates, my classes, San Luis Obispo, and my new friends; I adjusted to life in college quickly and loved my newfound freedom. But beginning in October, I started having episodes where my heart would race and I struggled to breathe. I had been a varsity track athlete just a few months before and now I’d have to stop to catch my breath after climbing a flight of stairs. Despite many hospital visits and doctors appointments, I didn’t get many answers, but I decided not to focus on it and to continue to enjoy college.
The first week of March, I collapsed in a calculus class. I got checked out at the health center and they ran an EKG. Within minutes the doctor was on the phone with a cardiac specialist at the hospital. He told me that something was wrong with my heart; that my QT interval was too long which was causing my heart to beat irregularly and that was why I fainted in class. While I’d never even heard the term before, little did I know then, there would never be a day that went by from that day on that I didn’t think about Long QT.
In the coming months tests would confirm my diagnosis of congenital Long QT syndrome, a rare heart defect that causes severe tachycardia, arrhythmias, and can lead to cardiac arrest. The hardest thing about my diagnosis was that everything happens so suddenly. One minute I can be perfectly fine, and the next my heart is racing and I’m at risk of my heart stopping altogether. While sometimes it may be triggered by exercise or caffeine, other times it has happened sitting on the couch or lying in bed for no identifiable reason.
In those first few months the women in my sorority rallied around me, my then boyfriend was incredibly supportive, and I was surrounded by my friends living in the dorms on campus. I still had frequent tests and occasional hospital visits, but the severity of the diagnosis didn’t really hit me. There was rarely any time I spent alone, so the fear of my heart actually stopping was negated by the reassurance that if something happened I would be taken care of.
In my second year, I moved off campus and got out of a relationship. Suddenly, I wasn’t constantly surrounded by people, and it wasn’t until then that the full weight of my diagnosis hit and the crippling fear of being physically alone set in. It felt like I went from having a full-time support system to being in this completely alone. I had always considered myself to be a strong and independent person, but having Long QT syndrome is like living with a bomb in your chest. My heart could stop at any time with only a few seconds warning, if any at all. I went from being confident and independent to having fully blown panic attacks if I came home to an empty house.
Over summer and most of fall I was relatively stable on medication, but that December I collapsed again in an organic chemistry lab and was taken in an ambulance to the hospital. A week later I had a procedure to put in a small device that recorded my heart 24/7 so that the doctors could get a better understanding of what my heart was doing day to day and to catch my next “cardiac event” on a monitor. While it was a step in the right direction treatment wise, that episode was the worst yet, and the fear grew to be more all-consuming. According to the American Heart Association, only about 10% of people who experienced an out of hospital cardiac arrest survived. There probably wasn’t a waking hour over the next few months that I didn’t think about that statistic. You hear the saying that we are never guaranteed another day, but I was painfully aware that I wasn’t guaranteed the next five minutes.
I desperately tried to maintain a normal college experience: going to sorority events, hanging out with friends, even making Dean’s list in school. But no matter how hard I tried, I felt the farthest from normal. I couldn’t hike with my friends, swim at the beach or travel far from a hospital because those activities were too dangerous for me. As much as I didn’t want to be alone, sometimes being with people felt even more isolating because I felt like I couldn’t relate to their “normal” anymore. I didn’t know how to tell even my closest friends how isolated I felt and I was embarrassed by my limitations, so I avoided talking about it altogether most of the time. I didn’t want people to see me as weaker or lesser than I was before, and I did a great job of hiding my insecurities. I was busy and involved and people thought I was doing just fine. Ironically enough, that just made me feel worse. They saw a shell of a person because really I wasn’t fine at all.
About 4 months later, I had my worst cardiac event yet. I was told in the French Hospital ER that my condition had become so severe that the only thing that could guarantee my survival was an Internal Cardiac Defibrillator, and I needed it as soon as possible. A week later, I had the surgery to put in my ICD; it monitors my heart constantly and if I have a dangerous arrhythmia or my heart stops, it delivers a life-saving shock. It sits on the left side of my rib cage and is similar in shape to, and slightly larger than a hockey puck.
I had the expectation that now that I had the ICD, I could go immediately back to being the same happy extroverted person that I was coming into college. I quickly found that that wasn’t quite the case. I still had a hard time relating to my friends, and had frequent panic attacks. I was frustrated with myself because I wanted to pick my life back up where I left off, and package the last year neatly into a box that I could put on the dark top shelf of the closet and not look at. I felt like I was entitled to being happy without having to work at it after the year that I’d endured. It felt like life or fate or God or whoever or whatever owed me something just based on the fact that I survived all the shit that had happened to me. As silly as it sounds now to say it, I was genuinely angry when the ICD didn’t fix my whole life and not just my heart.
When I went to therapy to try to understand why I wasn’t better, I was diagnosed with PTSD. I had to see the three livid scars on my chest every time I looked in the mirror. I had to acknowledge that the situation had caused me to be incredibly hard on myself and, at times, hurtful to the people around me. I had to come to terms with the fact that it felt like a whole year of my life was just lost. I was angry that I could barely recognize the girl in photos from before my diagnosis. She looked so happy and felt so so far away. It took a long time of being angry to soften enough to be able to say that I was in a difficult situation, and that I had to forgive myself and the people around me that felt like they had let me down. I had to come to terms with the fact that I couldn’t forget the last year, but I had to move on despite it; to let it go and let it be what it was.
It has taken almost a year and I’m just now starting to feel totally okay again. Each day that goes by that I actively choose to let it go is a step in the right direction and a day that I get to move forward. It’s really hard for me to let it go; I want to try to understand it fully and be completely okay with what happened and I have to realize that that will never happen, and that is okay. I used to want so badly to be the same person that I was before. I don’t want that anymore. I survived. It wasn’t beautiful or happy and I honestly don’t feel the need to look for the good in that situation. But I survived, and I look for the good in each day I have now, and I am so proud of myself for that. I can rest in the confidence that I did the best that I could to get through each day and that that was enough. I survived, and now I get to wake up to warmer, brighter days filled with peace and confidence.
I have a necklace that I wear everyday. I’ve worn it almost every day since my 16th birthday. When I got it, it didn’t have much sentimental value, but over time it became something I identified with myself and other people came to associate it with me. One of my first hospital visits after I got sick, in a rush to get electrodes on my chest to monitor my heart, one of the doctors took off the necklace and tossed it aside. They were never able to find it. I was devastated and it felt like a symbol of the favorite parts of me that were ripped away and that I couldn’t seem to get back. Months later, someone very important to me surprised me with the identical necklace as a reminder that I would one day get everything back that I lost. It’s not the same physical necklace, but it means even more to me now. It reminds me every day that I’m not lesser because I got sick; that I didn’t lose. I lived, and I can still have all of the opportunities and joy and love that I had before. I wear that necklace everyday. I think I always will.