My Story

I’ve mentioned having a chronic illness before and have shared about it quite a bit. I don’t remember how I told my good friends that I had become ill with something that would change the rest of my life, but I do know I’ve never really gone over the entire story of what happened during that trip to North Carolina. This time I want to share more details about the very real nightmare I had about three years ago.

Here is my story.


PART 1

The sun was shining down on my face and grazed my blonde summer highlights as I watched the waves crash onto the white sand beach. I approached the water cautiously, dipping my toes in and closing my eyes to fully experience the chilling sensation. It was only my second time surfing, but I was a fairly gifted athlete, so I was confident I would do as well as I had in California a few years prior. The instructor had been impressed with my performance, despite it being my first time. I was excited to give it a go again; the beach has always been my favorite place in the world and I felt at peace being back at my safe haven.

It was my last summer at home before I went out into the world to chase my dream of being a journalist. I had just graduated college and was bright eyed, bushy tailed, and a big bundle of nerves. There were so many things I didn’t have the answers to yet. I wanted to live in New York again, but it was so expensive. I wanted to be near my long-term boyfriend, but he didn’t seem to take my opinion into account as to where we could live.

None of that mattered today, though. I pushed everything to the back of my mind; today was all about me, my board, and the beach. I felt free — even if I had to go back to my normal life in a few days.

I shifted my gaze as the cold water pulsed over my painted toes, took a deep breath, and charged through the icy waves until I could get on my board and paddle. I glided through the water seamlessly until I was far enough behind the waves to turn around. The view of the beach from the ocean was peaceful and serene. I turned around to scout out my first wave. I saw the perfect ripple forming and paddled as fast as I could. I loved being in control of my body and the board beneath it. We sliced through the water together until it was time for me to go off on my own and stand up. The board remained faithfully beneath my feet, soaring across the wave. I hadn’t remembered smiling so wide in a long time. Anxiety seemed to plague my mind, as I was constantly nervous about my future. I was worn out and felt like I didn’t have any control over what was about to happen in my life.

The board shook beneath my feet and I crashed into the water.

I laughed as I wiped the salty water from my eyes and shook the sand from my hair. It was my first wave of the day; I wasn’t supposed to get that one anyway. I beamed as I flipped the board around and sprinted back into the roaring waves. They were just playing with me; they didn’t mean any harm. I tried and fell a few more times. This didn’t break my spirit, as I was happy that it was summer and that I could enjoy my time in the ocean. Something didn’t feel quite right, though. I couldn’t put my finger on it, but I realized I needed to take a break from surfing. I had caught a few waves and crashed on several more. Maybe I just needed to sit and hydrate. I rode a wave in and struck the ground one last time.

I drug my board to shore and plopped down on my pink and yellow starfish towel as I wiggled my hips to get the rest of the sand out of my suit. I took a sip of water and noticed the unfamiliar purple wounds on my legs — bruises from falling. I didn’t think much of it, with the exception of being a bit surprised that the marks took so quickly. I was breathing a little harder than usual. I had just run a half marathon a few weeks before; should I really be that tired from riding waves? Whatever, surfing is hard, I thought. I need to just give myself a break.

Screen Shot 2016-06-30 at 11.22.56 AM.png

I knew it was silly to wear a cute bikini under a wetsuit, but I was so excited to break in my new suit that day, haha.

I stayed out of the water the rest of the day and figured I would give it another go tomorrow. After all, we still had a few days left; there was no need to rush.


Little did I know this would be the last normal physical activity I would do for upwards of three years.

PART 2

The next morning I woke and went to grab breakfast with my mom. I had been excited the night before, as we were scheduled to go paddleboarding. I felt slightly nauseous, but dismissed it as nerves for the anticipation of learning something new.

I gnawed on a donut with one hand as I slipped on my swimsuit with the other.

duck.png

By the time we got to the paddleboarding hut I was feeling pretty ill (And regretted giving in to the temptation of Duck Donuts). I wondered why I was so nervous about something that was on still water. I am a good swimmer and wasn’t afraid of falling in; it made no sense. I sat outside and tried to focus on how good the sun warming my newly freckled skin felt until we were called to go to the dock.

We all took turns hopping onto our boards in the calm bay and pushed off the dock.

Thirty seconds in I felt the seasickness setting in. How is this happening so quickly? I wondered to myself. I always get nauseous on boats, but it usually takes a little bit of time for everything to set in.

“Am I supposed to feel dizzy?” I asked the instructor as my vision blurred slightly.

“Uh, I don’t think anyone’s ever mentioned that before,” he casually replied with a minor look of concern splashed across his face. “Keep me posted on how you’re doing.”

I nodded. I hated more than anything being high maintenance so I wasn’t about to make everyone turn around for me, but I didn’t remember feeling that sick in a very long time. I tried to make the most of things as I paddled close behind the instructor. My brother and I giggled about the showoff who had left the group and gotten stuck in the marsh, but I felt like I couldn’t focus on anything. The fogginess in my head made this almost feel like a dream.

Screen Shot 2016-07-02 at 2.48.54 PM.png

Realizing I was close to actually getting sick, I told the group I was going to turn around and went to sit on the dock. My head spun, but I figured I would acquire my land legs again soon enough.


Later that night I felt a little better, so we went out for dinner to a local homestyle BBQ joint. I was excited; I love ribs and couldn’t wait for our meal. Once we got our meal nausea set in — hard.

“I think I’m sick,” I announced to my family. My head was spinning and I didn’t laugh at any of the jokes that everyone had been telling. I rested my head on the table as we waited for the check. Great, it’s just my luck that the one time I get the flu we are at the beach, I thought to myself. I had gotten sick a lot living in New York City the spring before, but other than that I was a pretty healthy person; I couldn’t remember the last time I had the flu.

We went home and I rested on the couch. I asked my brother to get a 32 ounce Gatorade from the fridge and sipped on it as I gazed past the television while The Office played in the background.

I reached for my drink and was startled to find that it was empty. My mouth felt dry and I couldn’t swallow. Why wasn’t there any spit?

I chose another Gatorade from the fridge and drank it reluctantly. I didn’t want to puke yellow Gatorade all over the couch, but I also felt like I needed more to drink. Two Gatorades down, still no spit. My body began to panic as I realized I was disturbingly dehydrated. I took a deep breath and drank a solo cup filled with water. Then another, and another. In total I had 14 different drinks and noticed absolutely no change in my hydration. Tears welled up in my eyes and I wondered why my body was letting me to expel water from my eyes, but keeping it from my mouth. Something wasn’t right. In fact, something was very, very wrong.

Screen Shot 2016-07-02 at 2.39.52 PM


A few hours later I lay in bed and still felt my heart racing. It was getting worse. I had noticed a rapid heart beat a few weeks ago, but pinned it on feeling restless about the problems my boyfriend and I were having. This time was different, though. It wasn’t just a short spurt; my heart was racing and wouldn’t stop. I was nauseous. The room was spinning around me. My limbs felt heavy and numb.

This is the end, I thought. It may seem hilariously dramatic to everyone reading this, but before I knew what was wrong with me — a very sudden onset of postural orthostatic tachycardia syndrome — it really felt like my body was quickly shutting down on me.

My life flashed before my eyes, but it wasn’t the way it does in the movies.

Instead I just felt a sense of regret. God, if I live through tonight I promise I’ll make something of myself and try to honor You, I bartered. I’ll get to know You better. Please don’t let me die. I don’t want to find out what happens when I die yet.

I hadn’t taken enough time to focus on my faith and prepare for what would happen when it was my time to leave the earth. I wanted to feel more comfortable with my ending; I hated how unsettled I felt with the fact that this might be my last night here.

I wasn’t sure about much, but I was certain that something was very wrong with my heart. A 22-year-old shouldn’t be having a heart attack, but that was the only explanation I had for the sensation I was feeling. I called for my mom. She rushed downstairs and came into my room. I told her how I was feeling and she crawled into bed next to me. I didn’t know why, but I didn’t want to go to the emergency room so far away from home. I felt like I was on my death bed, but I also didn’t feel like anything was adding up. I was healthy. I took care of myself. Logic told me it couldn’t be anything serious, but I felt otherwise.

That was the longest night of my life. I turned on the television in an attempt to drown out the sound of my heart racing against the pillow. I tried to ignore everything that felt wrong; I didn’t want to rush around a foreign town to find a doctor at 2 in the morning. If I lost consciousness surely my mom would notice and take care of getting me the help I needed. I just wanted to make it through the night to go home the next day to my familiar doctor.

The room shook. I looked around, startled, and noticed it was just me. I was suddenly freezing. I wrapped the fleece blanket and fluffy white comforter around myself and began to cry. There were so many new sensations I had never felt in my life and something was definitely wrong. I thought of my family, and I thought of the little girls I babysat. I hoped people would miss me if I wasn’t around anymore, but I also wanted them to be okay. I began thinking more about my own mortality and shook harder. My relationship with God wasn’t near where I wanted it to be. Now that I felt so delicate I wanted to be certain of what was going to happen to my soul. I prayed to God, asking for another chance at life. I was scared and I certainly didn’t feel ready.

The nightmare continued until the next morning.

I drifted off a few times until my heart beat or the uncontrollable shaking would wake me. I focused on my breathing, expecting it to stop at any second, but prayed it wouldn’t.

The next day we piled into the car and I tiredly leaned against the front window. My body was weak, but had made it through the night. Despite being exhausted and sick, I was very thankful that it was finally morning.

I noticed the rapid thudding in my chest and wondered whether I had some sort of new superpower in which I could recognize every single thing that was working in my body. Is it weird I’ve never noticed my heart beat before? I wondered to myself. I knew it shouldn’t constantly feel like I was running a marathon as I was sitting in the passenger seat, but I also knew I wasn’t dreaming and that terrible life-changing things just did not happen to me. My life was good. My life was normal. The biggest struggle I had going into college was actually coming up with a hardship to share in one of my school applications.


I didn’t know it then, but I wasn’t just sick with the flu or something that would go away after a week or two of bed rest. My life is forever changed. Keep reading to hear about my experiences running from doctor to doctor and how I learned to cope with this new lifechanging news.

PART 3