My twitter profile has changed a lot in the 10+ years that I’ve used the site, but there has always been one constant. Along with details such as my current fandom, my bio always read that I am a “proud CHD kid.” No one ever really asks me what it means and I assume a lot of people don’t know, but it’s always there.
The short version of it is that I am Congenital Heart Disease patient. This means that I was born with multiple heart defects and I have required surgeries, tests, and procedures throughout my life to repair and monitor these defects. I had 3 open heart surgeries before I was 3 years old. I’ve lived with a scar down my chest for my whole life and have learned to truly be proud of what I’ve been through.
Naturally, I don’t remember the surgeries or the hospital stays and recoveries that followed from my childhood. So when, at 29 years old, I was scheduled to have my pulmonary valve replaced, needless to say I was slightly nervous.
The process leading up to the procedure was exhausting and incredibly stressful. My doctors fully supported me having this procedure via catheter (a much less invasive, inexpensive, and easier option) whereas insurance wanted me to have open heart surgery. February 2018 was a month full of doctors appointments, waiting by the phone, and a whole lot of anxiety.
At this time, I had only been an ARMY for about 4 months. I was still learning so much about BTS and the fandom but knew I had found something special with this group of guys. During the moments when I really had to think about what I would do if I had to have surgery, their music and videos were an escape from that really overwhelming possibility.
Finally, I got the call that insurance approved the cath procedure and I was scheduled to receive my new valve on February 28th. Upon looking back at my phone from that time of year, I was reminded that the night before, as I got home from work, a truck was driving past my building at that exact moment that said “RM Construction.” I took that as a really good sign.
The following morning, I was checked in. I had been in a hospital setting so many times in my life but never like this, at least that I could remember. Knowing I’d be staying there overnight while feeling uncertainty over what’s to come was new to me, but I was trying to take it in stride. With my parents and close family friends by my side, I waited to go in and before I knew it, a doctor was reminding me that this procedure came with risks — everything from a stroke to death.
Of course, I knew they had to say that, it’s a liability thing. But that doesn’t discount the fact that it was scary to hear. I signed my name saying I understood and did everything I could to stay positive and ignore any fear I felt. So you know what I did? I listened to Not Today repeatedly. I let the lyrics of “today we will survive” and “together we won’t die” play over and over in my head. I took them very, very literally and while I knew deep down I’d be fine — I’d wake up and recover and move on — I really couldn’t help but be so comforted by the song.
Unfortunately, the recovery following the procedure was pretty awful. Leaving out some details you all probably don’t want to know, the worst of it was that I was required to lay still and flat in bed for a total of about 20 hours. I had terrible chest pains, I was so uncomfortable, and I felt so helpless. They didn’t want me to eat and sleep was not coming easy. So with my parents asleep in the chairs across the room, I spent the night watching BTS videos on my phone, letting their music, dance, stories, and visuals do their best to distract me from the discomfort and pain. It got me through the most unpleasant night of my life.
The next morning, just as we were packing up at the hospital to go home, Hope World was released. I spent the car ride laying in the backseat with Hobi’s positivity and joy for life playing in my ears and it felt like such a great conclusion to the experience. It was a light at the end of the tunnel.
I spent about 2 more weeks recovering at home and it was an opportunity to dive in further into BTS. Anytime I felt restless, lonely, or overwhelmed, their music was a comfort. And 15 months later, when I saw them at Soldier Field in Chicago and they performed Not Today, I couldn’t help but jump around and sing my heart out with so much joy and gratitude. Even though I was feeling that fear in the hospital for a short amount of time, it felt like hours. But Not Today kept me positive and truly made me feel like everything was going to be okay. It still does.
A big reason for sharing this story, along with spreading the love for BTS, was to also raise awareness for CHD. I’ve lived with this my whole life and so do millions of others around the world. (CHD affects about 1 in every 120 births in the US). I’d love to know if there are other ARMYs out there with CHD, or maybe if any of you know anyone who has lived with this.
I will end this with once again saying I am so grateful to be a fan of a band that has such relatable, powerful lyrics. A band that truly helps me relax when things are hard. I know that no matter what, I was going to come out okay from that procedure, but having a song feel so comforting amongst the anxiety and uncertainty, really meant so much.
