Ugh, where is that shirt? Is it under that basket? Those were the last thoughts I remember thinking before I was out. I remember waking up with this dull pain in my left wrist. I remember how this was normal and that it was nothing. I remember the look on my mother’s face when the doctor told my mom that there was something wrong with her little girl. I remember hugging my dad so tightly while he held me while I sobbed. I remember when the doctor told me that my dream of being a runner was coming to an end.

I was ten years old when I had first blacked out. I remember how I got out of bed that morning just like any other morning. I had just finished eating my bowl of cereal. Then I felt my leg’s giving out and that was it. When I woke up I had this tingling in my legs and I was thinking I was talking, but I really wasn’t. Do I tell my parents about this? Or is it just a onetime thing that’s normal? At ten, no one really knows what’s normal and what is right. After that first encounter, I kept having more. I began to feel differently. I would have what is called tunnel vision where I see stars, or it’d feel as though someone drew with a black marker all around my eyes. My legs were weaker and shaky at times. Piercing pain would shoot up in the back of my neck into my lower head area. Most of the time I felt like someone stuck me on a merry-go-around and I was never going to get off. Everything just felt like I was spinning. What I thought though, is that this was normal and I never told anyone for years.

One December day on our vacation, I had got up to let our dog in when I had one of these “episodes.” In my luck, I had fallen right in front of my mom. Like any parent, she reacted as though I had just died and was frantically asking numerous questions while I just laid there because I was unresponsive. When I finally was able to talk, I told her it was nothing, but she’s a mom, and they never believe you when you faint right in front of them and you say it’s nothing. I began to explain to her what had been going on. As a parent, how do you take in that your daughter has been feeling off and faints at random times? As I proceeded to tell her more, she didn’t even have to say anything. Her body language and her expression said it all. She was worried and frightened about what I had just told her. As time went on, my parents knew I never felt quite right. We were always told it was nothing, and we shouldn’t worry. That was until the day that sparked it all.

The 2012 school year had just begun. I was downstairs one afternoon looking for a t-shirt I wanted to wear. I was running around trying to find it, and panicking that I had lost it forever. I had just entered the laundry room when my hands got this moist and tingly feeling. Next, I got this sharp pain in the back of my head and BAM, I had fallen to the floor somehow. I don’t remember much about this memory and quite frankly I don’t want to. After what seemed like forever, but was probably 30-40 seconds, I woke up. I was in a daze. I went to stand up when I had this dull pain in my left wrist. At first I didn’t tell anyone. As the night went on, so did the pain. I told my parents, and they just thought I was moving too fast like normal. That maybe I had fallen on it funny. Only if they knew what actually happened.

That morning, my morning tasks were quite difficult. It was like trying to learn how to ride a bike. Straightening my hair was almost impossible, and wearing pants were out of the question. I had lasted one block, before I called my dad saying I couldn’t stand the pain. My mother had came and picked me up, and off we were to the doctor. Hospitals always have a certain smell. Like cleaner mixed with bad news. I had gotten x-rays taken and they came back as broken. Hours later after some blood drawn and casting I was sent home. We had known my arm was broken but we had no answer to what caused me to break it. Hopefully to get some, we made another appointment to get to the bottom of it.

Honestly, I had no idea what to think going into that appointment. My heart was racing with curiosity boom, boom, boom. The nurse had asked all her questions and took my temperature and blood, and was on her way. Few minutes had pasted and the doctor had came in. She had me explain my story on how this first started and to where we are today. Her face made a questioning look, and then she had ordered some tests. First one was some blood drawn, ouch! The next one, was an EKG. After the blood was taken, I was then hooked up to a machine with a bunch of different wires stuck to me. The machine beeped as I stared at the cold white sealing. Minutes went by and the handle went down, and the doctor proceeded into the room. She explained how when she had examined the scan of my heart beats, she noticed that my long qt was substantially high. “Long qt what is that?” I said to myself, but my mother on the other hand was thinking a million different things. As they talked, I was put on a heart monitor. I was told whenever I felt a symptom to press the red button. They had made more appointments in the cities, because they were the only place that would take someone as young as me. None of us realized then, but that was the day that changed the days, month, and years to come.

Driving along the bumpy highway, I stared out the window. It was a sunny day, with baby blue skies with a cloud here and there. My mind was tired and I just wanted to sleep. Prior to this visit, I had been into the emergency room three to four different times. And Google was putting my parents into their graves all ready. As I went into this visit, I’m almost certain that they were more scared then I was. As we walked through the revolving doors, that’s when it finally hit me. I’m 15 and there’s something not quite right with me. We checked in and waited. Less than ten minutes of sitting there, and they had buzzed me in. I had an echo done on my heart. This is just like an ultra sound, but on your heart. My technician was kind, and made the forty-five minutes go by fast and easy. Seeing my heart on the monitor was probably the coolest things I’ve ever seen. That was the thing that kept me alive that made each step and breath possible. I had about an hour and half wait before I met with the doctors and you could tell my parents were on edge. It’s not like they knew what was going on either. Finally, it was time to enter the room.

It was white and bare. It was one of those rooms you see in TV shows that are always like you have three months to live, or you have cancer. The nurse did the same routine as all nurses do. Blood pressure, heart rate, temperature, and questions. My parents sat a crossed from me staring lifelessly at the floor. The door knob turned, and entered are two doctors. We shook hands and exchanged names. They sat down and that’s when the questions began. I told them how I get these weird feelings and that I just faint. I told them certain times how I have fainted and what I was doing at the times. As I proceeded to tell how I felt with my legs shaking, chest pain, face numbness, and more I had glanced at my parents who you could tell were trying to hold in what seemed to be tears. Their tears of fear which I had caused. A part of me sunk to the floor. My two doctors were very nice and explained everything too us, but when it came to telling us what I had, they didn’t know. He thought that maybe I could have long qt syndrome. This is different from long qt on just an EKG. Long qt is normal and is completely harmless, but long qt syndrome is we’re the electrical part of your heart doesn’t work quiet right, and can start an arrhythmia. An arrhythmia, is an uncontrollable heartbeat. They also thought I could have vasovagal. This is a nerve that makes you sick and essentially can’t be fixed. Also they thought I could be having epilepsy, which, is where I would faint and have seizures. I started to feel sick. I just wanted an answer. Is that too much to ask? They set up more tests that they would have liked done, and said we’d be talking later in time to discuss their findings. On the ride home, I sat in the back staring out the window disappointed, wondering what’s going to happen with me.

Three days later came the first test. A stress test, which is running on a treadmill with wires hooked up to you, as speed and inclined changed to see how my heart reacts to exercise. I’m a pretty athletic person and I had found that test hard. I lasted 12 out of the 21 minutes before I felt sick to the point I needed to stop. After I was unhooked, they said everything looked good and sent me home.
”Go Amery!” Everyone was screaming, when my mom had called me. It was weird because she usually just texts me, and plus she knew where I was. The crowd was screaming as a goal was made, I just sat there in disbelief. My doctor had called her earlier and the results from my test were not good, and that he wanted to start me on medication right away. As I got in the car I looked at my mom, and burst into tears. I had known it wasn’t good news, and you could she didn’t want to tell me because I could see it on her face. As I sat in the car crying my eyes out, she began to explain that as I ran the long qt it was supposed to get shorter. She said, “The doctor wants you to stop activities because you could go into cardiac arrest.” I asked about track and she responded with, “No more.” Knowing my mom, those were the hardest words she could have said to me. “The words No, More, Track.”

Activities such as dance and track were gone. Track to me is like a child to a mother, it’s everything to them. Track was everything and it was ripped away from me, along with my dream. Ever since I was a little girl, I said to everyone I was going to go to state all four years and be number one. I was going to go to the Olympics, and win a gold metal. So far, I had gone to state once, and it was the time of my life. The happiness of holding the metal that said state qualifier had put me higher than cloud nine. I walked around with a smile on my face for days. I still remember walking into the stadium with the stands packed screaming for whoever was running. The smell of the warm rubber, and the bounce you had when you put your spikes on. I remember getting into the blocks shaking, and my hands gripping the baton for dear life. Running down the back stretch and knowing I was doing what I loved most, running. I knew that was where I belonged. Now someone is trying to take away what I love, and what choice do I have? You’d think I’d have one, but if a doctor says no it means no. My dream was slipping away. A dream I couldn’t control anymore.

October 30, was the first of two days that would change me forever. My parents had gotten me in to see a sports specialist on long qt at Mayo Clinic. The first day, was a test that the doctor had wanted done so he could have evaluated me more when he saw me the next day. The drive down was long, and when we finally arrived there I needed to stand. My mom and I parked and went to check into my first appointment. This place was enormous, over whelming, and breath taking. People from different countries playing music, kids from adults to old people, and skin colors of every shade. It was a lot to take in, but I had places I needed to be, like the sixth floor. We rode the elevator up until the elevator signed. The atmosphere was tense and everything was well organized. We wait until I got called in and followed the consultant. We sat down in a more colorful room this time. She asks us question about our family to see where maybe I had gotten this condition from. About 20 minutes had past and she sent us to our appointments for that day. Up and down, side to side, my mom and I had gone everywhere for another EKG and stress test. Finally, the long day was over. We headed home knowing tomorrow was going to be even longer.

October 31, the day I did not want to come. We woke up bright and early because I had to have another test at eight before I saw the doctor. We arrived nice and early, in the bitter cold, and went to the test building. It had taken maybe fifteen minutes, and we were off to the big appointment. My name was called and my parents followed me into the room. There was a knock at the door, and a man walked in. He sat down, and the question’s started flying at me. It’s not that I didn’t understand what he was asking; I was just in the stage of fear. As I looked to my right I wasn’t the only one. I told him what I told everyone else. He asked more question and said he was going to review the results. I had felt like all eyes were on me. My body was warm and started to sweat. My hands couldn’t stop moving. I sat there with my dream on a cliff, and this man could either save it or push it off. He gathers our attention again and tells us more in-depth of long qt syndrome, and the treatment plans. First plan is medication, which I am on now. Second one is a nerve surgery in my left armpit that would lower the long qt, but I’d still would have the symptoms. The last treatment plan would to have a defibrillator implanted. He asked if we had any questions and my mom had a ton, we all did. The one question that I had cared about at the moment, was can I run? He looked at me with eyes that said I’m sorry and said, “With all the standards you’re discharged from all completive sports.”

Did you hear that sound? That was the sound of my heart dropping onto the floor. The only thing that could come out of my mouth was, “oh.” I made an attempt to look at my parents, but I couldn’t. I tried to fight the tears that I could feel starting, and I just stared at the floor as the adults talked. I thought my life was over. There was nothing for me anymore. I spent two hours with the man with my only hope essentially. His assistant talked with my parents and I was sent me to blood work. As I sat in the area alone with strangers, I felt anger fill into my system. When we walked to the car, I just dragged my feet along. My mom tried to talk to me in the car, and I just freaked. I didn’t mean to, it’s just everything had built up to the point of explosion. So many feelings, and there is only one me.

There are not even words I can write that can compare to how I feel. I have this anger inside of me, because it’s just not fair. It’s not fair, that I can’t do dance or run anymore. I didn’t ask for this. What bugs me, is people try to give me their sympathy, and it’s either fake or they don’t understand what’s going. They say they understand how I feel. How can they, when they don’t know what it’s like to have the thing you loved most, your dream thrown out a window. It down right hurts getting your dream broken at my age. It’s one of the only things I had to look forward to. There’s another part of me that just wanted to cry. Except the tears, never come out because I’m drained from the feeling of denial. The thought of never running track, follows me every single second of every day. I can never escape the thought of now what. I had the slimmest of hope, and now I have none, nothing, zip. Even my parents have changed. My mom doesn’t know what to do. Her daughter is hurting, and she can’t fix it. She knows that her dream is gone. My dad knows that his little princess secretly cries when no one looks, because she wants to seem tough when she’s already broken. My brother doesn’t know what to do either. The initial shock of his sister not being okay frightens him. The daughter, the little princess, and the sister just wants to run. One simple task that’s no longer simple.

My name is Janelle. I have long qt syndrome. The one thing that I loved to do, and ever dreamed about was taken away from me. I may look the same as everyone else on the outside, but on the inside I’m raw, hurt, angry, sad, scared all because of how I was built. I’m a fighter not a quitter. One day, I will run that winning race, the race of beating the odds.