The other day, while watching a wheelchair basketball game, my friend was talking about how one of the players ended up paralyzed. When she finished telling the story she said
“I don’t know what I would do in that situation. Would I keep going or just give up in life?”
This struck me as an odd thing to say. I always knew how I would react in that situation: I would keep going. As my mother will tell you, I don’t take “no” well. Telling me not to do something, or that something is impossible, is a great way to get me to do it. After seeing the movie Soul Surfer, the movie about Bethany Hamilton, I remember thinking to myself that if something like that happened to me, I would keep going. I would brush myself off and keep working towards my dreams. My brain couldn’t have possibly comprehended how difficult it is to keep going because at that time I had never had a serious struggle.
I also recently read this article about a woman whose baby will be born without a brain. She has chosen to carry the baby, Eva, to term to donate her organs. Her husband said something that really spoke to me. He said
“I was a spectator to my own life, watching a superhero find her powers.”
As someone who loves superheroes, this statement holds a lot of power to me. My favorite superhero is the White Canary. What I love about her is that her powers are all learned skills. She wasn’t born with any superior abilities, she became a superhero with a lot of hard work. I always wanted to be a superhero. I wanted to have that moment where I got to discover my superpowers, only to realize that I had them all along. Every hero has their own origin story, how they got to where they are at that moment.
The wonderful thing is that I did get to have that moment. I know exactly how I would react and it is exactly how I thought I would. The backside of that is that I now have my origin story. Anyone who’s seen any superhero movie knows that no one gets an easy origin story. You don’t get to be a superhero without struggle. You have to go through the flames and emerge stronger than you ever thought possible (You can’t have a “Girl of Steel” without going through the flames, you’ve got a “Girl of Iron”).
This is my origin story.
Please allow me to set the scene. My story begins on April 29th 2012, at Grigg’s Reservoir in Columbus OH. It was clear, sunny day with temperatures in the mid 60s. For all intents and purposes, a wonderful day to be outside rowing on the water. There was no wind, just a breeze to keep us cool. Now that the scene is set, the story can begin.
Woomp…Woomp… The wonderful sound of silence between the oarlocks unanimously clicking together. Breathe. We’re at the starting line. Set the boat. Get in your lane. Boat Number 5 Move Forward 2 strokes. I pull forward two easy strokes and let the boat run under me the rest of the way.We’re all lined up. Breathe. Keep your point. Breathe. Sit Ready! says the official. The sound of seats sliding into the three-quarter position echoes in the trees. Oars locking so they’re squared and buried. Attention! We all adjust ourselves so we’re ready. Ready for what we think is just a race. But it’s so much more than that. Breathe. We all look ahead at the person in front of us. Stroke looks to the official holding the flag. ROW!
We shoot out of the blocks like the words coming out of the official’s mouth. The flag he had raised above his head is now by moving down toward his side. ¾. ½. ¾. Lengthen. Full. Rowing at full speed, we start our power 10. Woomp…1 Woomp…2 Woomp…3 Woomp…4. I turn my head to see if we are going straight. Starboard 1! I call to my crew. They understand and pull so we are going straight again. Woomp…6 Woomp…7 Woomp…8 2 More! Woomp…9 Woomp..10 Settle! The rate goes down but the power does not. We’re currently in 2nd. Potential to medal. The boat in the lane next to us is walking on us. But we hold steady and they soon fall back, away from our stern.
We’re going so fast it feels like we’re flying. My ponytail waving around in the wind created from our speed. The sky around us is as blue as blue can be. The trees rustle in the breeze. The slight gurgle of the water as it runs underneath the boat. That is why I row and compete, to experience this beauty and euphoria at the world around me. As I am caught in this euphoric state, I start to feel myself tiring. I think this can’t be possible. I’ve raced many times and never been this tired this early. I push through only to find my euphoria replaced by panic. I feel like I can’t breathe. I’m not getting enough oxygen. I briefly remember my biology teacher, Mr Guizzo, screaming something about how dying is always caused by having “not enough oxygen”. “Breathe Rachelle! Breathe!” I tell myself. I’m breathing so fast. I feel lightheaded. My vision starts to get fuzzy so I try to focus on something, anything. I focus on the trees and the sky and the boat and the water but nothing is mitigating the fuzziness. The fuzziness is now replaced with tunnel vision. My visual field is slowly being swallowed into darkness. My mind briefly flashes to “The Nothing” from The Neverending Story. I don’t think I can take it anymore. I think I might…
I wake up to find myself splayed across the bow of the boat. My head hit the splash guard and was now resting upon it. My arms dangling outside the shell and running through the water. My oars parallel to the boat, stuck in the feather position. My feet still securely fastened into the shoes on the foot-stretchers. My first thought was “Why am I looking at the sky? I’m supposed to be rowing!”
This is the first part of my origin story. It’s the spark that starts the trial by fire.
The official came over to our boat, panicking. Along with the rest of my boat. I, however, was not panicked at all. I was cool as a cucumber and actually a little (ok maybe a lot) angry at the intrusion. I just wanted to finish the race. If we hurried we could make it up and still medal, but alas that is not in the cards for me.
The official forced me to get out of the boat. I climbed into her launch, undid my oars, and she took me back to the dock. I’ll have you know that to this day my biggest regret in life is not finishing that race. It also has to be one of the most humiliating moments of my life (which is saying something because I embarrass myself almost every single day). I have never felt so powerless as I did in that moment.
The rest of my story flashes by in a montage of visits to doctors and specialists and specialists of specialists.
You see when I got back to the dock I was told to go to the medical tent. They took my blood pressure and heart rate but at that point, the only thing bothering me was immense embarrassment. Everything was totally normal. Later we went to the ER, where I was labeled with a big red wristband – “fall risk”- although given my klutziness it’s not entirely inaccurate. Blood work showed I was mildly dehydrated but not enough to cause fainting. They recommended we follow up with our family physician since fainting during exercise is generally pretty serious. My family physician sent me to a pediatric cardiologist. This is where the story gets a little more interesting.
My first test at the cardiologist’s office was a resting EKG, which I passed. The next was an echocardiogram (basically an ultrasound of the heart). I also passed this, although being an athlete he did remark that it was larger than a nonathlete’s heart but still normal. He also said that it was one of the most structurally beautiful hearts he had ever seen. The last test was the exercise stress test. I did not pass this one. He observed an abnormal rhythm but he said he wasn’t sure what it was or what it meant, just that it was not normal. He sent us to an electrophysiologist at Cincinnati Children’s Hospital.
When I got there I had to repeat the stress test. Again the abnormal rhythm showed itself and I had an unofficial diagnosis: Catecholaminergic Polymorphic Ventricular Tachycardia.
On May 5th we had another appointment so that we could have the “official” diagnosis, even though we pretty much already knew. He laid down a lot of rules, a lot of limitations. I’m going to be honest, I don’t remember much about that appointment because I spent most of it playing solitaire trying to keep it together. He said I would never row again. He said completely seriously, and I quote, “what’s the difference between playing the piano?” (you mean besides literally everything?). After that, I just zoned out. My brain couldn’t process any more information at that time. I’m sure he probably thought I was very rude, and I’m not denying that I was, but he could’ve been a little more sensitive. I was 15 and he just turned my entire world upside down. I needed to gather some footing before I tried walking. When I got back to the car, I just sobbed. In the haze of this diagnosis, we had forgotten to have the nurse validate our parking. The guy in the parking booth looked at me, still sobbing uncontrollably in the passenger seat, and told us not to worry, he would take care of it. My mom tried to cheer me up by taking me to our favorite barbecue place, but some things are more than a rack of ribs can handle.
It certainly seemed like the end but little did I know that this was instead a beginning. It was the beginning of me realizing, and finding, strength buried deep inside me. To quote Muhammad Ali, “Champions aren’t made in the gym. Champions are made from something they have deep inside them – a desire, a dream, a vision. They have to have the skill, and the will. But the will must be stronger than the skill.” I still wanted to row, and I wanted to go to the Olympics. Months of not being allowed to row may have taken away some skill, but it didn’t take away my will. It only made it grow.
On August 16th (4 days after my 16th birthday), I had a Left Cardiac Sympathetic Denervation (LCSD). My new doctor told me that with this along with medication, he would let me row. I didn’t hesitate. I was not going to let CPVT keep me from my dreams.
Almost a year (to the day) after my diagnosis, my hard work and determination paid off. I got my first medal since my diagnosis. That was my moment when I found my superpowers.
Since my origin story, my life has been a lot of sunshine and rainbows, with a couple of rain clouds thrown in, because you can’t have a rainbow without rain. I’ve made new friends, and learned things about old friends. I performed in 3 musicals and a talent show. I started college (and changed my major 3 times). I got banned from rowing on the UA varsity girls rowing team (by their team physician, my doctor gave me his full blessing). I got to watch the 2016 Olympics in Rio (and celebrate my 20th birthday there as well). I’ve been interviewed by news stations. I found my calling studying Human Performance/Exercise Science, with a concentration in Adaptive Sports. I joined the club rowing team at college (1 of 2 girl rowers on the team) and won my first collegiate rowing medal.
If you had asked me, before my diagnosis, where I would be in 5 years, I probably would have said something about being in college and having a really good 2k time. I got from Point A to Point B, just with an unexpected tangent. I certainly didn’t see all this in my future, but now that I’m here, the future seems pretty bright.