Seeing the doctor is always stressful. It’s even more so when you’re from out of state (like me) or even out of country. It can be very overwhelming. I admin a group and we get a lot of questions from people asking what it’s like, where to stay, where to eat, what you can do in Rochester, etc. so I decided to make my own mini guide to Mayo. I’ve broken things up into categories for some semblance of organization but I highly recommend reading all of it.

Atmosphere

Full disclosure: I love the Mayo Clinic. It is actually a delight going there. They have truly mastered Patient centered care and it shows. The details (like actual art and sculptures, not just “hospital art” ) really help to create a calm and dare I say fun environment. Most hospitals are full of a stressful agitated energy that Mayo just doesn’t have. Sure there’s hustle and bustle and occasionally small chaos but it’s a calm chaos. As my mom says “It’s a place of healing, not just a hospital.” There truly is no hospital I’ve ever been to that is like it.

Places to stay

First thing you should know Mayo has subway tunnels under the streets. Some hotels are connected by subway tunnels to the clinic which is really convenient, unfortunately, those tend to be more expensive as well. Many hotels also offer shuttles to and from the clinic back to the hotel which is also very convenient. I stayed at the Best Western a couple years ago and it was nice and had a shuttle. If you have your own car I highly recommend staying at an Airbnb. That’s what we did this last time I went and it was great. Also I highly recommend buying a parking pass. They are way cheaper than not buying one and they never expire as long as you have the pass so you can use it year after year until you run out of days.

Places to eat

• Nupa – Mediterranean and Greek food like gyros, dolmades, greek salad, etc. I just ate here for the first time last week while I was there and it was wonderful! My gyro was overflowing, the service was great and they didn’t charge me for extra tzatziki sauce. All around win-win for me!
• Victoria’s – I can’t say enough good things about Victoria’s. I’m Italian so I don’t eat out Italian food – except here because it’s that good. I have had the spaghetti bolognese and the chicken rosa verde which I highly recommend! And their calamari is so good!
• Newt’s – Best burgers in Rochester! Also have wonderful nachos. (They layer the toppings so you never get any sad empty chips). It is a bar so maybe not perfect for small children but also not bad for kids. All around good bar food and they have Minnesota beers that you can try if that’s your thing.
• Chester’s – Amazing food and possibly the best service I have ever had (Seriously ask for Devin she’s the best). I have a bell pepper allergy and she was very helpful and understanding and knew the ingredients of everything on the menu. I got a quinoa healthy bowl this time but they also have amazing steak.
• Pannakoeken –  Breakfast with a Dutch flair! They serve all day but we went there for breakfast. I am super picky about my eggs and they got them right so A+ for eggs. If you go you have to get a pannakoeken (also known as a dutch baby) – a stuffed, oven-baked pancake. We got one with strawberries that came with brown sugar and sour cream to mix and make a fruit dip. It was honestly life-changing. 12/10 recommend getting a pannakoeken. Also their muffins looked wonderful as well but we were too full to get any.
• Caribou Coffee – Amazing coffee and really nice staff. It is a chain but it’s not nationwide. There is also a Starbucks and Dunkin Donuts nearby if those are your thing. Also highly recommend either bringing a reusable cup or getting a fun one from the Mayo gift shop because they’ll charge you less to do a refill and because it’s good to be environmentally friendly.

Things to do (Rochester)

Rochester is pretty small but there are a surprising amount of things to do. Some of these are in Mayo so you can do them in between appointments if you have time/ need something to do

• There’s a little like “town square” out the back of the Gonda building. I believe it’s called Peace Plaza but I am not positive. Anyway, there are a bunch of things that happen out there like concerts, dance lessons, etc. There are little signs out there with a website you can go to to see all the events.
• Visit the hospital gift shop. I know it sounds kinda lame but they have some fun stuff like the rubber duck soap. It’s a bar of soap around a rubber duck and they are hilarious and really great for kids.
• Go look at the artwork! Mayo is part clinic, part art museum. There is art EVERYWHERE. They have big sculptures by Dale Chihuly that I could stare at for days. Seriously it’s everywhere so take a couple minutes to enjoy the art as you walk by.
• Nature! If it’s nice out you can check the many trails, lakes and other nature-y things. I’m not going to list them all but there’s a ton. Silver Lake, Douglas State Trail, Quarry Hill Park/ Nature Center, Chester Woods, Foster Arend Park. etc…
• Heritage House – Victorian-era house  (only open in Summer June-August) with tours and antiques
• Plummer House – Built in 1924, English Tudor mansion with 11 acres of landscaped grounds
• Minnesota Children’s Museum

Things to do (Minneapolis)

• Minnehaha Falls/Park – Beautiful falls and park right off the Mississippi River. There is also a little restaurant called the Sea Salt Eatery with local beers, fish, shrimp, that is amazing. They also have a little ice cream shop in the back. I high;y recommend the Nicollet Drive Pothole (no that’s not a joke it’s actually the name of an ice cream)
• Lock and Dam #1 of the Mississippi River – Beautiful views of the river and a self-guided tour of the lock and dam where you can get really close and see how it works. Very cool! My mom and I spent like an hour here.
• Mall of America – We didn’t go here because my mom doesn’t like crowds but it is a fun touristy thing that everyone will ask you if you went. There are so many things to do here! There’s an aquarium, water park, flight simulator and more just to name a few.
• Bakken Museum – A museum of electricity featuring Frankenstein! It was also originally sponsored by Medtronic. They sadly are not open on Mondays so we didn’t get to go but I really wanted to.
• Walker Art Center
• Minneapolis Sculpture Garden featuring the classic “Spoonbridge and Cherry” sculpture
• There’s also a bunch of other parks, lakes and other nature-y things to do here as well.

Miscellaneous Things

• If you get blood drawn in Peds you get a rubber duck. Don’t let them skimp out on the duck. I’m still a bit salty that I was denied a duck because I’m an “adult” now and they don’t have them down in the adult section. Also, ask for stickers if you want one. I got a Pua (the pig from Moana) sticker after my echo and wore it proudly.
• Navigating Mayo is very confusing but the people are very nice and are more than happy to help with directions or anything else you need. One day we forgot our paperwork and the people at the information desk printed it right out for us.
• If you are in a hurry, you can pull into the drop off at the Gonda Building and the parking guys will take Holter Monitors and things you need to drop off. It was very nice of them to do this for me when I was there last week.

These are just a few things I have learned over the years going to the Mayo Clinic. Hopefully, this information will be helpful to you and can put your mind at ease (even if it’s only about where to get good food for dinner). Good luck and enjoy Rochester!

When I was first diagnosed I was told I could pick a sport from the green box, but there’s a slight problem with that. My sport is in the big red box, which is why my first cardiologist basically said “never” and then he told me that I could take up piano “because it’s basically the same thing.” I personally don’t see any resemblance between rowing and playing piano but apparently, they’re basically the same.

This is my tale from the big red box because that is where I belong. I’m going to be honest living life in the red box is not easy. You have to decide if it’s worth it. I had an LCSD and take 2 medications so that I can be safe but my doctor told me multiple times that there is an element of risk involved and I needed to be ok with that. I’ve made my peace with the risk, but that’s not a decision that everyone can make. Since I was 15 at the time he also wanted my Mom’s ok for the continuation, because if something bad happened, no one should have feelings of “I told you so” and blame.

The hardest part about continuing rowing has been coaches. Some don’t want to take the risk (despite my stress tests being normal), others have difficulties accepting that because of the medications that keep me safe I have to make some modifications. The Beta Blockers cap my heart rate so rowing at a higher rate (more strokes per minute) is difficult because my heart rate doesn’t adjust as well to the extra effort. In rowing there are really only 2 ways to go faster – more strokes or more power. So I’ve switched from my previous more strokes mentality to more power. It’s become a “work smarter, not harder” sort of situation. This is similar across all sports and it’s a fundamental part of my major, Adapted Sports. If you need modifications then make them because just because you don’t do something the way everyone else does doesn’t mean you need to quit. Focus on what you can do rather than what you can’t and make it work. The unfortunate thing about this is that very few coaches have any training in adapting athletics so a lot of the time they don’t necessarily know what to do and they don’t want to do it wrong. I understand this fear and I don’t fault them for it because they are trying, misguidedly, to have people’s best interests at heart. I think they would feel more comfortable if they had more information on adapting sports to athletes with heart issues, but unfortunately a lot of experts disagree on sports and even the Bethesda Conference doesn’t offer any real solutions. It offers guidelines on whether they think you should quit or not but that’s basically it. Anything beyond that and you’re on your own. It disregards capacity, ability, desire and quality of life, and that is an issue. People are not 1 size fits all, so our guidelines shouldn’t be either. Some people don’t want any risk and I am not faulting them for that. Some are willing to take that risk though, and if they are willing and understand the consequences I see no reason to stuff people in a plastic bubble they don’t want to be in.

To summarize my point I’m going to quote Aimee Mullins, a Paralympic sprinter and double amputee, in her TED talk The Opportunity of Adversity, “There’s an important difference and distinction between the objective medical fact of my being an amputee and the subjective opinion of whether or not I’m disabled. And, truthfully, the only real and consistent disability I’ve had to confront is the world thinking I could be described by that word. In our desire to protect those we care about by giving them the cold, hard truth about their medical prognosis, or indeed a prognosis on the expected quality of their life, we have to make sure that we don’t put the first brick in a wall that will actually disable someone. Perhaps the existing model of looking at what’s broken in you and how do we fix it, serves to be more disabling to the individual than the pathology itself. By not treating the wholeness of a person, by not acknowledging their potency,we are creating another ill on top of whatever natural struggle they might have…So we need to see through the pathology and into the range of human capability.” Honestly, I couldn’t have said it better myself.

Instead, I would say “Live your life as if you simultaneously have no time and all the time in the world.” Live like you have no time so that you can realize what is really important to you and do the things that matter to you. Live as if you’ll never die so that you don’t feel rushed to do all the things you want to do and so that you can enjoy the little things in life.

In the movie Mr. Magorium’s Wonder Emporium, the titular character (Mr. Magorium) dies. He gives a lot of good advice during his time in the movie. I’m including his advice relevant to the subject matter. The first quote I have is from his last day. Molly Mahoney (the main character) is spending the day with him to try to convince him not to leave even though it’s his time. This quote comes from when they set all the clocks in a store to go off at the same time and are jumping on mattresses.

Mr Magorium: 37 seconds

Mahoney: Great! Well done. Now we wait.

Mr Magorium: No. We breathe. We pulse. We regenerate. Our hearts beat. Our minds create. Our souls ingest. 37 seconds, well used, is a lifetime.

We have a lot more time than we think we do. Most people just happen to have really messed up priorities and we end up wasting the time we have. When you let go of the fear of dying and the stress that comes with it, you can focus on using your time how you want, rather than how fear is dictating. In his last scene in the movie, he is talking to Molly Mahoney about the fact that he is going to die. He leaves us with a reminder about living our best lives.

He says “Your life is an occasion. Rise to it.”

We all have hopes and dreams and we can achieve them. All you have to do is do it. I’d like to leave you with one more quote. The day before he dies he’s talking to his (magical) toy store. It’s pouting because it doesn’t want him to leave, much like Mahoney. He says “We must face tomorrow, whatever it may hold, with determination, joy, and bravery.” That is how I try to live every day. You need determination and bravery to get you through the tough stuff and to allow you to do the fun stuff. You need joy for life. You can exist without joy, but you can’t live without it. No matter what comes your way, all you need is determination, joy, and bravery.

You can’t keep bad things from happening, no matter how many precautions you take, no matter how hard you try. You can certainly try, and I’m not saying to be reckless, but you have to live, really live. Live BIG! You don’t need to climb a mountain to live big but if that’s what you want to do then you should do it. You don’t want to be 95 years old with years of regrets of things you wanted to do but didn’t. I mean let’s be honest I think we all take life a little too seriously. We only have one lifetime to do a lot of cool stuff and I don’t have any time to waste! I plan on making use of every second I have on this planet. Not sure what I’m going to do with all of them but I’ll figure it out as I go along.

I’ve never been a super emotional person. My personal philosophy is very often to bury emotions until you physically cannot hold it inside and that is 100% not a healthy way to deal with them. Trust me I’ve tried it…multiple times. On the day I got diagnosed I tried to hold it in. I managed to make it to the car. My mom told me that it was like we needed to go through the 5 stages of grief, and she’s right. I didn’t lose a family member but I still needed to grieve for the life I thought I would have. I can’t imagine how hard it is to do that if you lost a family member as well. Whatever our situation, most people can find a way to cope and in time, it gets easier.    

I have a serious dislike of crying in public, so much so that it almost borders on a fear. So the first thing I’d like to say is don’t be afraid to cry or do whatever you need to do to get that emotion out. There’s a song called “Missing you” by All Time Low (which I highly recommend listening to) and one of the lines that stands out the most to me is this:
Grit your teeth, pull your hair,
Paint the walls black and scream, “F$%# the world
‘Cause it’s my life, I’m gonna take it back, ”
And never for a second blame yourself.
It may be a little dramatic but hey if you need to pull your hair or paint the walls black – go for it. You do you. I personally find screaming to be very therapeutic. My second favorite is taking a drive and blasting some Three Days Grace. Maybe you need to curl up with some tea and watch some trashy TV. Whatever you do, don’t ignore what you’re feeling. The second part of that line is equally as important. I know in my experience it felt like my life was crumbling around me and I was powerless to stop it. But that’s not the case. It’s your life and you can and should take it back, for a very simple reason: you deserve it. It’s your life and you should be safe but just being alive is not living. Existing is not living and don’t let anyone tell you otherwise. Just existing is not acceptable. Quality of life is important too.

The 5 stages of grief are denial, anger, bargaining, depression, and acceptance. They aren’t linear and there are no time requirements. You can go from denial to depression back to anger and bargaining. Order doesn’t matter and you could be in 1 stage for 20 minutes and another for weeks. My point is that there is no specific way to grieve, don’t let anyone tell you what or how to feel. What works for me may not work for you and that’s ok. Your feelings, whatever they may be, are valid.

All that being said I’m going to write about what it was like for me.

I went through denial pretty quick. I think it’s because in my case, I had a problem. The problem was that I’d been banned from rowing and I am a person that when there is a problem, I have to fix it. So I set my sights on fixing said problem. I had a lot of quiet bargaining and lot of very not quiet anger. I was angry at a lot of things. I was angry at the doctor who diagnosed me, angry at the official who made me get out of the boat, a little bit angry at the people who convinced my mom to take me to the ER, but I was really angry at God. That last part is sort of a separate story and will be told in a different post but I felt it needed to be said. Anyway, I had lots of anger and I was likely not a very fun person to be around.

I think the major stage for me and a lot of others is depression. I probably spent literal years in that stage. The interesting thing about that is that I didn’t even realize how unhappy I was until I was happy if that makes any sense. It’s like how once you’re soaked from the rain, you stop noticing the rain. The second lesson I’d like to share is that there is no shame in asking for help. Some things are too big to handle by yourself. I got medication for my depression and it helped. There’s no shame in taking medication or going to therapy. Your mental health is just as important as your physical health and don’t let anyone tell you otherwise.

Depression is tough but you can make conscious choices to help yourself. You might not be able to do it right after and that’s ok. I am not saying that depression is something that can be cured by the power of positive thinking because it’s not. I’m not trying to minimize depression because it is real and your feelings are real. I don’t think that you can magically make it go away with a look on the bright side and some nature. It’s real and it’s hard, but it’s too easy to get sucked into that spiral and never be able to find a way out. The light is there, you just have to look really hard for it sometimes. A little extra effort sometimes seems like trying to climb a mountain in one step, but sometimes you might just make that mountain smaller.

I just recently made a conscious choice to be more optimistic. I was tired of being sad. I refuse to have any more doom and gloom in my life (There’s too much of it in this world anyway. You know what they say, change starts with a single person). I decided to make a conscious effort to look on the bright side. I used a mindfulness trick where you acknowledge the bad things and then imagine them floating away and being replaced by good things. Do I still have bad days? Of course, but they’re a lot fewer and I’m much happier. I literally stop to smell the roses. I splash in puddles when it rains because why not? I kind of force myself into happiness, I do things that I know I like because I know it’ll make me feel better. Fake it til you make it right?

I’d like to leave you with another musical quote that has helped me. It’s from a song called Miracle by Paramore.
I’ve gone for too long
Living like I’m not alive
So I’m gonna start over tonight

When this memory fades
I’m gonna make sure it’s replaced
With chances taken, hope embraced

For me, life without rowing wasn’t really living. I had to go find a new doctor who would take my mental health into account. I got a second chance at life, and I’ll be damned if I’m going to waste it. The pain has faded and I’m replacing it with life, spontaneity, and hope for what the future holds.   

If you haven’t already I want you to take a look at that photo. It’s special. Not because of what’s there, but because of what isn’t. Honestly this is a once in a lifetime photo, because the event in this photo changed my life forever.

Have you figured it out yet? Let me give you a hint. There’s supposed to be 4 people in this boat.

I am missing. I am not in this photo, which is interesting because this photo is very meaningful to me (even though I’m not in it). It’s sort of like the “negative space” concept in theatre, film or photography. Sometimes the space that doesn’t have anything in it, called “negative space”, is actually the focal point.

If you’ve read my previous post this may make more sense to you. I had my very first “event” at around the 750m mark during the same race that this picture shows. This is the last picture of me rowing before I was a heart patient. My last picture before I had a cardiologist. It’s weird to think about how this day could have gone so much differently.

Today is my Life Day. It’s like a birthday…but not. I’m not really sure what it is, but I celebrate it anyway because any excuse to have cupcakes is cool with me. You could call it a celebration of my second chance at life, but that’s a mouthful so Life Day it is! It’s a bittersweet celebration though. I wouldn’t say it’s a happy or a sad day, just that it’s significant. I’m sad for all the dreams that got put on hold but happy because it could’ve been so much worse. Who would’ve thought a little genetic mutation could do so much? (Even better is that my mutation is weird, never been seen before. I am, in fact, special…and not just because I’m a millennial #thatexon3deletiontho)

Here are all things that have happened because of this day 5 years ago…

• went to the ER for the first time
• soooo many stress tests (never thought I’d say this but – they’re worse than 2k tests)
• got told I would never row again
• had surgery (LCSD)
• started rowing again
• won my first rowing medal as a heart patient (possibly the only rowing medal for a heart patient)
• decided to do musicals and made some amazing friends
• went to heart camp and got more friends
• got told that I would never row again (that’s TWICE for those keeping count)
• got a Wish from The Make A Wish Foundation (Happy World Wish Day!)
• was interviewed as “Someone you should know” on TV
• interviewed again to tell my story on a 2nd TV station
• saw the RIO 2016 Olympics in Rio de Janeiro
• got to meet my rowing hero, Dr Gevvie Stone
• got advice from Gevvie Stone’s coach (and father).
  • He told me that after all I’ve been through I can make it to Olympics
• started rowing again…for the 2nd time
  • because living your worst nightmare once isn’t enough for some people
• won my first collegiate rowing medal
• got 4th at SIRA regatta in the Women’s 2x
• part of a wonderful group of people that I get to call teammates
• made a TON of “not dead yet” jokes (Monty Python and the Holy Grail)
• and today I got to row ~24,000 meters with my favorite people

Today is quite a different day than it was 5 years ago

If you had told me this is how my life would be 5 years ago I likely would have laughed in your face. It’s been a crazy 5 years. I won’t say it was a wonderful time because sometimes it sucked. Just between us though, the sucky parts were more than made up for by the immense joy I get from proving people wrong when they tell me I can’t do something…and I’ve gotten to do it TWICE.

I have been so lucky to have so many people to help me through this crazy tangent and I want to extend a thank you to all of you. To all the people who told me I couldn’t do it, thank you. You are the greatest motivators of all. To all the people who told me to give up, to put it nicely, you stick that in your juice box and suck it. I’m a strong, independent mutant and I do what I want…as long as my cardiologist approves.

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.