Hello there, and Happy Thursday!
Today's post, as you read in the title, really has been a long time coming. I've just been so busy with blogging and going to events this year that I haven't had the time to sit down and write it out. But Now I do. So, here we go.
There's a book out, maybe you've heard of it, it's called BECAUSE YOU'LL NEVER MEET ME by Leah Thomas.
Description from Goodreads: In a stunning literary debut, two boys on opposite ends of the world begin an unlikely friendship that will change their lives forever.
Ollie and Moritz are best friends, but they can never meet. Ollie is allergic to electricity. Contact with it causes debilitating seizures. Moritz's weak heart is kept pumping by an electronic pacemaker. If they ever did meet, Ollie would seize. But Moritz would die without his pacemaker. Both hermits from society, the boys develop a fierce bond through letters that become a lifeline during dark times-- as Ollie loses his only friend, Liz, to the normalcy of high school and Moritz deals with a bully set on destroying him.
A story of impossible friendship an hope under strange circumstances, this debut is powerful, dark, and humorous in equal measure. These extraordinary voices bring readers into the hearts and minds of two special boys who, like many teens, are just waiting for their moment to shine.
I picked up a copy of BECAUSE YOU'LL NEVER MEET ME last summer a couple weeks after it's release. I can't remember how I'd heard about it, but I knew instantly that I wanted to read it. Not only was Ollie's allergy to electricity intriguing since I'd heard of EHS before, and not only because it was about two best friends who had never met, but Moritz, one of the story's two main characters, has a pacemaker.
A pacemaker.
To most people, this may not have been a big deal. In fact, to most of you, this is probably only an interesting idea, if anything.
But to me, Moritz having a pacemaker was everything.
It was everything, because there was finally a YA character like me.
I've had a heart condition for as long as I can remember, and the amount of tests I'd had done between the ages of 5 and 10, simply to determine what it was, exactly, that I had remain countless. However, seeing as no one could pinpoint what it was that was wrong with me other than having an odd heartbeat, I was released with no restrictions. Three years later, I go in for a sports physical (I was going to play volleyball. Make it to the Olympics for my mom, who had that opportunity taken from her by way of knee surgery.) and my doctor decides to send me to a specialist, just to make sure that they couldn't find anything before I made my way into the world of sports.
The night before my appointment with the specialist, I passed out in the shower. One minute I was good, and the next I was waking up on the bathroom floor with my head swimming. I remember my dad going to get me a soda and a candy bar so that I could get some sugar into my system, and then once we were sure I was okay, we went to bed so that we could go to my appointment the next morning.
The appointment went totally normal, nothing different than any other appointment I'd had, and we went back to the hotel (We were out of state). That night, we get a call from the doctor we'd seen that day, and he tells me I need to stop any and all physical activity. That I need to keep my heart rate under 80 beats per minute, because anything over that was dangerous, since he'd determined that I had a condition known as Hypertrophic Cardiomyopathy. In other words, the muscle of my left ventricle was too thick, and caused my heartbeat to be irregular. It was also what caused my shortness of breath with nearly any bit of physical activity.
Cardiomyopathy is responsible for many teenage deaths. The disease isn't detectable in most patients until they reach puberty, which is why most of the kids who have it may not know that they do. That's what makes Cardiomyopathy so dangerous-- if you don't know you have it, and you go along playing sports, you could easily die on the field. Which is exactly what happened to an Arkansas Razorback in 2011. So I stopped physical activity. I didn't play volleyball. My plan didn't exactly go like I thought it would, but instead of ball, I turned to my love of reading. All I had to do was go for checkups and monitor my condition to make sure it wasn't getting any worse.
Two years later, I come home from school, do my homework, order pizza, and settle down for the night. I was laying on my dad's side of the bed (He was out of town on business) waiting for my mom to get off the phone with her best friend, whose husband had just gone to the ER for high blood pressure, when I fell asleep.
The next thing I knew, I was waking up on the floor-- My butt on the carpet, and my back against the bed. My mom was kneeling in front of me, my phone held up to her ear, and I could see that she was panicked, but I didn't know why. She told me to pet my dog, who was barking and whining and trying to make her way to me, so I did, and I remember thinking that my hands felt so... light. After a few minutes, she helped me up and told me that we were going to go see the doctor, which should have made me wonder what was going on, but instead I just got up with her. She told me we were going to go get my slippers from my room, but first, I insisted that we get my book from where I'd left it on Dad's night stand. After grabbing the book, the title of which I wish I could remember, we crossed the apartment and headed towards my room. Between my parents' bed and the threshold to my room, I passed out two times. Again coming out of my closet (with my slippers on, this time). And again just outside my door. This time, we didn't get back up.
I laid on the floor while my mom spoke to who I had finally figured out was a 911 operator. They stayed on the phone with us while mom asked me if I needed anything (to which I answered that I needed my stuffed dog, Sally.) and tried to keep my mind off of what was happening. Which turned out to be pretty easy, because I had no clue, I was just going with it. As we waited, I began to complain because mom said that we may be at the hospital for a few days, and I was not about to be okay with that because we were in the middle of state-wide testing, and that was my favorite part of the school year (I know, I know. I'm weird.). Eventually, she assured me that she'd see if I could retake the test, and after twenty minutes the paramedics arrived.
They took me on a stretcher to the ambulance, where I remember seeing my neighbors standing outside their door with their heads bent in prayer. Upon getting situated int eh ambulance, lights flashing and all, I had my pulse taken. It was at twenty-three beats per minute, which is so, so low. They also pricked my finger, and I didn't feel it at all due to the low heart rate.
We made our way to the hospital, where they ran test after test, and where they obviously had no idea what was wrong with me. They called my specialist, who referred them to a cardiac doc much closer than my out-of-state one, and said doctor told them to stop running tests immediately, because they were just making it worse. It turned out that they were going to fly me in a medical evacuation plane to see the recommended doctor, but by this point, it was 1am and storming so hard that the plane couldn't make it. So we had to wait until 6am came around.
I spent those five hours dozing on and off, and at one point my mom ended up having to go have a little chat with the doctors who were outside my door saying, "If we can just keep her alive until the med-evac gets here, it'll be out of our hands."
Funnily enough, my mom's best friend and her husband had gotten released from the ER, so they came over to say hello and keep us preoccupied for a while. Between them, and me finally getting some sleep, 6am came quickly, and I took that plane ride by myself, since there was room for either my mom or a set of equipment that could save my life if something happened in the air. Mom was forced to drive three hours to the hospital while I made it there in one.
My dad, who had been away on business at the time, was also driving to the hospital, but from the other direction. He made it there before my mom, and as the flight-for-life team wheeled me into the hospital, he was able to meet me so that I wasn't alone in an unfamiliar face. Mom arrived soon after, which is when he doctors came in to evaluate me and hear what had happened, and that's when I learned that my mom had had to perform CPR on my lifeless body, and I'd actually passed out once between being CPR-revived and waking up at the bottom of the bed. After hearing this and talking to my specialist, the doctors made the decision that I needed to have an emergency surgery the next morning to implant an ICD-- A pacemaker/defibrillator-- that will help keep my heart rate in a healthy range so that it doesn't drop too low or rise too high.
So that next morning, Good Friday, I had a pacemaker put in. When I woke up, I found out that I'd flatlined during the surgery, and the surgeon had had to use the defibrillator paddles to bring me back.
Since then, all has been well for me in the world of health. I have yearly procedures so that the doctors can measure the pressures in my heart and lungs to check the function of the organ and see how much (if any) it's deteriorating. The battery in my pacemaker will be replaced in November, because I've used mine up a little bit faster than the approximated seven years. But all is well.
All is well, but I've found myself getting angry with YA contemporary stories. So many of them are based on a teenager with a cancer diagnosis, and I've had family members who had cancer, so I totally and completely understand how it's such a major disease in the world, but I want to take this moment to shed light on something that most people don't know.
Heart disease is the number one killer in the world.
And while cancer is a very prevalent thing, and books should be written about it, because it's real, and people go through it, and it's a terrible thing... I'm here to tell you that heart disease is also real. People like me go through it, and it is a terrible, terrible thing for those who aren't as blessed as I am. For those who don't catch it in time.
And there are so, so many teenagers out there whose hearts are failing. And who need devices like pacemakers to keep their heart pumping (I became 100% dependent on my pacemaker in 2014. My heart will no longer work on it's own.).
This is the reason I want to give a big thank you to Leah Thomas for giving me Moritz. Because it's amazing to finally have someone recognize that cardiac kids exist. We're out here, and we're always waiting for someone to acknowledge that we have problems that are just as important and just as scary as cancer kids.
So BECAUSE YOU'LL NEVER MEET ME was an amazing book to read. Moritz has a pacemaker, and he's not ashamed of it, he's proud of it. As someone who tries to help others see that their imperfections and surgical scars aren't things they should have to hide, it was wonderful to see him being secure in his condition.
And speaking of his condition, I want to give you a spoiler. If you don't want to see it, skip to the next paragraph! The spoiler is this: Moritz has the same exact condition as I have. And when I read the line in the book where he told Ollie, it reduced me to tears, because I finally found a book with a main character who not only has my condition, but who has a pacemaker as well.
BECAUSE YOU'LL NEVER MEET ME earns five stars from me, forever and always. Book two was just sent out as an ARC, and I'm crossing my fingers that I'll find a copy in my mailbox. I cannot wait to see the next step in the story of these two best friends, and I can't wait to get more time with my Moritz.
Happily,
Stephanie
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