I didn't used to have a particular phrase or motto that I lived my life by, unless you count "why do today what you could put off until tomorrow" but that isn't exactly "positive living" for obvious reasons. One day, before I had my heart condition, I happened to be perusing every antisocial shopper's dream, also known as Amazon. I stumbled across a home decor item with the phrase "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain". Perhaps you've heard it before? The first time I read it, it was nothing more than a tasteful decoration hardly worth a passing glance. Later on in my life, however, it would become the foundation that my perpective was built on. Allow me to provide a little background before we get to the heart of the story...ahem...so to speak.          

Let's start with the basics, shall we? My name is Emily, such a rare and unique name, I know, and I'm seventeen years old. When I was a chubby, awkward twelve-year-old, I began to notice strange sensations in my chest from time to time. Being young and healty, I didn't think much of it. Still, I'd described it to my mom as feeling like my heart was starting and stopping again, and that was enough for her to take me to the doctor. At first, they didn't have a clue what was wrong with me, as my heart sounded normal when they listened to it.

I had test after test done, and a few months later, after wearing a device that measures heartbeats called a Holter harness, they told me I had a heart condition where my heart beats irregularly and prematurely, also known as premature ventricular contractions or PVC for short. They told me there wasn't anything they could do for me, and at the time, I was satisfied in just knowing what they were, and again, didn't think much of it.

The PVCs were unpleasant, but they didn't occur very often and I was able to have a normal childhood just like anyone else, albeit with a few bothersome beats on rare occasions. I managed to get through four years with relatively low trouble, but everything -- my normal life, my happiness, basically my ability to function -- it all came to a screeching halt at the end of my junior year. My PVCs have always been extremely unpredictable and occur at completely random intervals, and to this day I have no idea why they suddenly got so much worse, but they did.

The day I was cast into hell was just an average day at school, which, I guess when you think about it, I was already in hell. Anyway, I was sitting in class and I suddenly had a massive PVC. I experience at least five types of PVCs in varying degress of severity, and all of these but the final two only last, well, a heartbeat. The least severe are the very faint ones I have in the morning that I can barely feel and usually go away within an hour or so. The second lest severe are the kind that I do feel, but aren't painful and don't occur again until the next day.

The third, that I call "massive PVCs" are the kind that only last a second, but are painful and cause adrenaline to rush through me. When these occur, I usually have to stop what I'm doing and wait until the pain and fear go away. I don't have the panic attacks that come with these like I did when I was younger because I'm used to them by now. The fourth, I call them "palpaPVCs" because they are mixed with a heart palpitation, are the kind where I have multiple PVCs that last anywhere from three the six seconds. These are the rarest and usually only occur if I have too much sugar or ingest caffeine without knowing it. The most severe are the kind I fear the most, and I didn't even know I could have them until that fateful day. These are what I call "chain PVCs" and they are the massive PVCs that never stop.

So after I experienced this massive PVC in class, it wasn't anything out of the ordinary so I just ignored it and went back to what I was doing since distracting myself helps with the panic. That night I went home and started going about my routine; it was a Friday night so I was trying to get my homework done in order to enjoy the weekend. As I was doing this, I kept having one massive PVC after another. This had never happened before, so I tried getting up and walking around and they went away for a few minutes but then came right back the second I sat down again. They obviously were there to stay, and I don't remember a time in my life when I ever felt such pure and unadulterated fear. My mom took me to the emergency room and by this point I was shaking, sobbing uncontrollably, and could barely walk.

It's very hard to describe what PVCs feel like to those lucky souls who frolic through life blissfully unaware of the suffering people who experience these go through. It's kind of like explaining what bubblegum tastes like to someone who's never had it. Or what it's like to be tortured from the inside and not being able to do a single thing about it. The best way I can put it is, it feels like your heart is having powerful spasms, like it is going to splutter out at any moment; it's the worst feeling imaginable.

I equate it to that of a shock collar. Imagine you wake up one morning, or you're casually doing your homework on a Friday night, to find a shock collar around your neck. You have no way of getting it off and you must wear it the rest of your life. At completely random intervals throughout the day, the collar will emit varying degress of shocks. Some can be so mild you barely feel them, while some can be so bad you crumple to the floor with tears in your eyes, unable to move until the shocks subside, if they ever do. Sometimes they don't, continuing on into the night making it impossible to sleep, and you wake up the next morning to find it's still happening, and continues to do so for weeks at a time.

You will never know how long they will last, it could only be for one second, or millions. The shock collar is invisible to everyone but you, and the more you beg people for their help to find a way to get it off, the more they think you need psychiatric help. I've heard countless doctors tell me my PVCs are all in my head because I look like a healthy teenager on the outside. I've tried every kind of pill there is and it does nothing, so it must be psychological, especially since the ultrasound and EKG say my heart is normal. I've heard that same speech so many times I have it memorized. The more I try to explain how awful it feels, the crazier I become in their eyes.

So you can probably imagine what they told me in the ER. Even though everyone could clearly see the irregularity of the peaks and crests on the heart monitor and my wincing each time my heart fluttered, they told me it was nothing. They looked me in my eyes, irritated from the excessive crying, and my mom's eyes, filled with concern and helplessness for her suffering daughter, and told us they couldn't do anything and that I would be fine with such nonchalance. It was like they were giving my mom and I directions to a Quick Trip or something, and not speaking the words that would seal my fate and plunge my life into an ever-present state of misery. If you detect a smidgen of bitterness in my tone, you'd be correct. I know there's nothing the doctors can do, and I've forgiven them for it, but writing all this out and reliving it is giving me the urge to punch a wall.

I have small hands though and undoubtedly the wall would win, so it's not the best idea. If only they'd known what I've gone through. None of them knew that there are days when it is so bad I can't get out of bed, and I can do nothing but bawl and scream into my pillow. None of them knew that in the months following the ER trip, the chain PVCs continued on through morning and night, giving me absolutley no reprieve. Even sleep, which should be everyone's one moment of respite, was invaded by the awful feeling of my heart starting and stopping over and over again. There was no escaping my own body and soon I was not speaking to anyone, I never left my room, and cried until I was left feeling empty and hopeless. That isn't living, only existing and wishing that existance would end.

I was put on antidepressants but ironically it only made me more despondant due to that fact that, before all this, I was the happiest person in the word and not a moment went by when I didn't have I smile on my face. I kept telling the doctors that all my despair and anguish would go away if they could only give me a pacemaker. Still, they continued to treat the symptoms and not the cause. They also gave me a beta-blocker called Atenolol to slow my heart rate and block the release of adrenaline, but that also did nothing. This is what my life, no, existance, has been for the past nine months -- and if you include the sporadic episodes I had as a kid -- the better part of six years. By now, the chains have gone away, but I never know if I'll wake up one day and have to live through the nightmare of last summer all over gain.

I graduated high school early, only because I could no longer attend school in my condition. I'm currently seeking a job that has flexible hours because I might have to go home if my PVCs get bad, and I can't be required to talk or walk an excessive amount. Wish me luck on that impossible endeavor. My PVCs still make mundane everyday tasks difficult and there are a lot of things I've had to give up.

I stay far away from caffeine, which was tough because I'm a basic white girl and had a mild Starbucks addiction before this all happened. I only drink water because I can't eat more than ten grams of sugar a day, and most drinks have sugar in them. Even milk has a considerable amount. Don't believe me? Check the label, it's all I seem to do nowadays. When I crossed the threshold into adulthood back in November, I sat there smiling like nothing was wrong as everyone enjoyed my cake. People think I'm strange when I turn down desert at a restaurant or tell them I don't drink soda. They have no idea how badly I want to, and how much I used to love all things sweet in my old life. I can't excercise at all -- I'm unhappy with my weight and planned to take up jogging once I graduated, but it looks like I'm hanging up the running shoes before they've even touched pavement. Those are just the minor things I've had to give up though.

On my worst days, I cant talk at all without bringing on a set of chain PVCs, and I have to use my phone or a notepad to communicate. I'm actually in one of those stages now, but thankfully I can still write. It's about the only thing I can do now, and it's the one thing I hold dear in my life that hasn't been stolen from me. Not yet, anyway. Don't ever take anything in your life for granted, because you never know how much you appreciate the little things until they're gone forever. A chocolate bar. An early morning jog. A long conversation with a loved one. Going on vacation. Not being aware of your heart at all times. Even just being able to leave the house. Enjoy all of those things as I once did. Don't listen to that voice telling you how many calories are in it, induldge in that donut that's begging you to eat it. Go on a walk at sunset with your special someone. Talk as much as you can, for as long as you can. If I'd known what I was going to lose, I would've eaten every donut in existanece, talked until I lost my voice, and walked until the soles on my Chuck Taylors were gone.

Having a heart problem isn't like having a headache or joint pain. If your heart malfunctions, that's bad news and it's taken me a long time to accept that this isn't going to kill me. I don't know why it hasn't; no one's heart that beats the way mine does could still be alive. Everything would be so much easier if it had turned out to be something structurally wrong with my heart, because then it could be corrected with surgery. Since my condition has to do with electrical impulses misfiring, not even a heart transplant could fix it since the new heart would just do the same thing.

This is where the "learning to dance in the rain" comes into play and I suppose the whole reason why I'm writing this. Each day is a struggle for me, but there are days when I do feel okay, as rare as they may be, and it's days like these when I try to live my life to the fullest. I never know if a pleasant experience will suddenly be ruined by a PVC or a panic attack following it, but that doesn't stop me from trying. There are little things in my life that bring me happiness, like my cats, writing, and watching TV, preferably Steven Universe and My Little Pony. Out of everything though, my mom is what brightens my otherwise darkest moments the most. I'm an only child and we've always been extremely close; she's my best friend in the world and finding ways to make her happy is enough to make my life worthwhile.

She was there to hold me on days when my PVCs were so bad I could barely move. She was there by my side through every doctor visit, trying just as hard as I did to convince them, even breaking down right along with me when they told us the same thing over and over again. She was there watching movies or MLP with me when that was the only thing I could do. I tell myself that in order to have such a wonderful gift as her, I needed to have a burden in return, and I believe that's what my PVCs are. If this is what it takes to make sure I can always see her smiling face and her bright blue eyes, I'm just fine with that. She never stopped being there for me, and even if I spend my entire life trying to make it up to her, I'll never be able to repay her for what she's given me. I've been writing since I was capable of holding a pencil, but words seem to fail me when I try to convey just how much I love her.    

I've been learning to dance in the rain for quite a while now, and thanks to her, each day a little bit more sun peeks through the clouds. Remember, each person you meet is fighting their own battle, you could pass me on the street and be unaware that I was struggling to keep a calm expression as my heart spasms one after the other. But whatever you are going through, no matter how far down you've spiraled or how hopless you feel, try to think about the things you do have rather than what's been taken away from you. Even the smallest things can make it that much easier to get up in the morning. Obviously my storm is never going to pass, but as I said, learnig to dance in the rain is getting easier. Anyway, I'm not sure what else to say, as I believe I've covered everything and this story is already way too long. If you've made it this far, thank you so much for taking the time to read this laundry list of a story. Also, if any of you have the same condition as me, please say so, as I've never met another person with PVCs in my life, despite how common I'm told they are. Have a good one y'all!