by Jennifer Nichols

“Wake up, Caitlyn! We’re ready to go!”

That would be my mom who is waking me at this ungodly hour. I grab my cell phone off my nightstand and check the time: six o’clock. I can’t put this off any longer. Stretching like a cat, I kick off my covers and drag myself out of my warm bed. Don’t my parents understand the value of sleep?

I trudge to the bathroom and begin my morning routine. Brush teeth, comb hair, throw on some clothes. Good enough. My head is already pounding as I make my way to the kitchen to take my pills. I grab a granola bar to eat in the car. Hopefully, it will stay down but it’s always a bit of risk eating this early.

My kid sister skips into the kitchen. She’s nine and I swear she’s like the Energizer Bunny. I try not to be jealous, but I would kill for just half of the energy that girl has.

“Caitlyn! Mom said she’s not gonna wait any longer. Aren’t you ready to go yet?”

“Tell her I just have to get my bag.” My voice is hoarse from using it for the first time today. “On second thought, can you get my bag for me?”

I try to ask as sweetly as possible. If I were her, I wouldn’t want to have to wait on me, either. She’s used to it though, and she only grumbles a little as she runs off toward my room, her long brown ponytail bobbing behind her. My dad enters the kitchen just as I finish swallowing my last pill. He’s still dressed in his pajamas, but his bright eyes and combed hair reveal that he’s been awake for a while.

“Aren’t you supposed to be in the car already?” he asks, bristly eyebrows raised.

“I was just heading for the door,” I reply.

He comes closer and gives me a kiss on the cheek, which I return.

“I love you and hope you have a good trip,” he says.

“Thanks. I love you too.”

I know. You’re probably wondering why my dad isn’t coming with us. While my sister and I have the week off for Spring Break, dad still has to work, and, as an accountant, this is the busiest time of the year for him. My mom, on the other hand, works part time as a florist and had no problem taking off from work.

So, I regretfully tell my dad goodbye and join my mom in the car. I stake my claim in the back seat where I can stretch out. Let my sister have the front; I can put my feet up back here. Mom honks the horn impatiently. I know she is eager to go. She doesn’t like to drive at night.

“Come on, Claire,” she mutters to no one in particular.

Like a charm, my sister, Claire, pops out of the house, carrying my over-stuffed duffle bag. She tosses it in the trunk and hops into the passenger’s seat.

I put a pillow behind my head and stuff my ear buds in as my mom puts the car in gear and pulls out of the drive. I pull out my granola bar and eat it slowly, silently praying that it will agree with my stomach. It’s an eight-hour drive to Rochester, Minnesota, and I want it to be as comfortable as possible.

About an hour into the trip, the heartburn starts.

“Mom, do you have any Rolaids?” I call.

“You can check my purse,” she replies without taking her eyes off the road.

“Claire, can you pass me mom’s purse?”

Claire sighs dramatically, like I just asked her for a kidney, but she grabs the large black bag and hands it to me. I rifle through the mess of Kleenex, coin purses, and pill boxes until I find the Rolaids. I pop two in my mouth and chew them quickly. They taste like chalk, but the flavor is a small price to pay if they relieve the excruciating pain in my chest and back. I hand the bag back to my sister and sit up straight. I place my pillow on my stomach and put my feet up on the seat, so that the pillow rests between my stomach and my knees. Only seven hours of the trip to go.

Why are we driving eight hours to Minnesota for Spring Break? I thought you’d never ask. If I was a normal sixteen-year-old girl, I would probably be flying with my friends to Miami or Cancun, or at least to San Antonio. But I’m not a normal sixteen-year-old girl. In fact, much to my family’s dismay, three years ago, I gave up flying all together. So, while I’m sitting here in misery, I may as well share the story.

When I was ten, I caught mononucleosis. And, yes, everyone thought it was clever to make stupid kissing jokes about it. From my experience, there was nothing funny about mono at all. After missing weeks of school, my doctors finally thought I had recovered. Sure, all my tests came back “normal”, but I still felt awful. Since I no longer had a high fever and all the tests came back negative, I was forced to return to school. It was miserable.

I had absolutely no energy. When I wasn’t in school, I was sleeping. When I was in school, I was dizzy, or nauseous, or in pain. I had to give up all of the things I had once loved. No more soccer practice. No more dance recitals.

My doctor recommended a counselor because he thought I was depressed. I found the counseling sessions depressing. What ten-year-old wouldn’t? After months of counseling and no progress, I started getting referrals to all sorts of medical specialists. This one thought maybe I had Lupus. That one thought I might have a thyroid problem. And, gasp, another one thought I could have cancer. Test after test came back negative. I was the picture of good health, except that I was sick.

But last year, things changed. My doctor had had enough. He suggested that my parents take me to the Mayo Clinic in Rochester. If they couldn’t find anything wrong, then, once and for all, he could determine that my illness was all in my head.

My parents were desperate; I was desperate, so, despite the heavy bills, we packed our bags and made the long trip to the Mayo Clinic. By the grace of God, I met Dr. Schaeffer, my current neurologist, there. After exhaustive testing, she concluded that I had a commonly missed condition called Postural Orthostatic Tachycardia Syndrome, or POTS, for short. It was such a relief to finally know that what I was experiencing was real, that it had a name.

Of course, this was just the start of my journey. Up until then, my family and I had never even heard of POTS. We thought it might be one of those weird, rare conditions. Later, I learned that 1 in 100 American teenagers suffer from it. And even though it isn’t rare, very few people have heard of it, even in the medical field. So, I’ll assume that you are just as clueless about POTS as I was when I was first diagnosed. I have learned so much about it since then that I feel like I could write a book.

Postural Orthostatic Tachycardia Syndrome is a disorder of the autonomic nervous system, which controls all of the body’s automatic processes. I know, I sound like a textbook. Basically, if you don’t have to think about it, your autonomic nervous system does it for you: breathing, heart beating, digesting. In POTS, this system becomes out of balance. The body no longer knows how to properly respond to its environment. One of the defining features of POTS is that the patient’s heart rate increases by at least thirty beats per minute when moving from lying down to standing.

Dr. Schaeffer described it to me by saying that my body acted like I was running a marathon every time I stood up. This made sense to me, as most of the time I felt like I had just finished a marathon. I can hardly begin to explain how miserable and how scary POTS can be. However, Dr. Schaeffer assures me that it is not life threatening.

Currently, she is working to find medications that help my symptoms. I also have an exercise regimen that I am supposed to follow, though I honestly don’t follow it as closely as I should. I drink so much water and Powerade that I can hardly go an hour without peeing, and I pour salt on everything I eat. The POTS diet is weird, and a little gross, but I find it easier to follow than the exercising.

I also gave up flying when I was thirteen. The air is so dry on airplanes and I dehydrate very easily. Also, drastic changes in elevation make my head spin. Every time I have a follow up in Minnesota, my parents try to convince me to fly, but my last plane trip was so miserable that I’m terrified to try again.

That brings me back to the present. I’m the reason why we are spending Spring Break driving in the car for eight hours to go to a doctor’s appointment. During the last visit, Dr. Schaeffer prescribed a beta-blocker for me to try. I guess it’s okay. But I’m really hoping she has something new for me to try.

See, I did something sort of stupid last week. While I was sitting in Spanish class and pretending to concentrate on conjugating verbs (though I was really just focusing on keeping my eyes open), the cute senior who sits behind me tapped me on the shoulder and invited me to the Spring Fling. Like a lovesick idiot, I said yes. I mean, this guy is gorgeous. He’s also sweet and funny. I’ve kind of thought he had his eye on me for a while now, but I’ve tried to discourage it. Seriously, the last thing I need is a boyfriend. I have enough on my shoulders between POTS and school. So, like I said, I idiotically agreed to go to the Spring Fling with this wonderful guy. I can hardly stand up for five minutes. How am I supposed to go to a dance?

My parents think it’s cute. They want me to go. I want to go. I’m just not sure how I’m going to explain to my date why I am spending the whole evening chugging water and walking like a drunk back and forth to the bathroom. And that is the best-case scenario. More likely, the night of Spring Fling I will be so exhausted from school that I will crash before I can even slip into my dress.

Ugh. Dress shopping. I forgot about that. I used to love shopping; now I dread and loathe it. Why are there so few benches in the mall? This whole Spring Fling thing is really a nightmare. Yet, I really want to go. It’s something a normal person would do, and I desperately want to be normal.

So, all my hopes are riding on this appointment. I need some answers. I need a new medication, a new treatment, something that will help me make it to the dance. Or maybe, even better, something that will give me back my old life.

“Can I turn on the radio?”

Claire’s squeaky voice pulls me out of my thoughts.

“No,” I say weakly.

My head is still throbbing and I feel like my granola bar is creeping up my esophagus. The radio will just make me sick.

Claire starts to whine, but, thankfully, my mom finds a solution.

“Can you lend your sister your ear buds?” she asks me.

I toss them to Claire and she settles down.

“How are you holding up?” my mom asks.

“Fine,” I lie.

She knows I’m lying, but she doesn’t say anything.

The hours pass slowly, but after eating a small cup of soup for lunch, I finally fall asleep in the car. When I awake, we are pulling into the hotel parking lot. I wait in the car while my mom and sister check in. When they come back for the luggage, I follow them in the building. It’s not the greatest hotel, but it’s no Motel 6. There’s a plate of chocolate chip cookies on a table in the entry. I snag one. Maybe I’ll feel like eating it later.

We stop in front of the elevator. Unfortunately, our room is on the third floor. I don’t like elevators. They always seem to make my dizziness worse. The doors slide open. I walk to the back and tightly grab the rail. The ride ends quickly and the dizziness fades as I follow my mom to our room.

The minute the door opens I find the remote and flop onto the nearest bed. While Claire and my mom freshen up and make dinner plans, I flip through the channels.

“Are you going to dinner with us?” Mom asks.

“No,” I reply. “Can you bring me back some chicken strips from McDonald’s please?

“All right,” Mom says.

I know. I should go to dinner with my family. But I’m tired. The bed and TV are telling me not to leave the room for the rest of the night. Besides, now my mom and sister can eat wherever they want without having to think about my dietary restrictions or how long I can be out.

I give them hugs when they leave and cuddle up on the bed, excited about the rom-com that is just starting. When it’s over, I pull out my phone and check my social media. I can waste hours on the Internet, so it’s not surprising that I’m still messing with my phone when my family returns.

I’m not very hungry, but I eat the chicken strips anyway. I learned a long time ago to eat even when I don’t feel like it. After I finish, I pull some pajamas out of my bag and reluctantly walk to the shower. My appointment is tomorrow and I want to be presentable. I sit in the bathtub while I wash to conserve my energy. I gave up morning showers years ago. I found them too exhausting.

When I’m done, I wrap my hair in a towel and throw myself back on the hotel bed. Mom and Claire are watching some Disney movie. I might find it amusing if I wasn’t so tired. I set the alarm on my phone for 7:30. My appointment is at nine o’clock and I want to have time to eat breakfast first. I don’t know why, but I love hotel breakfasts. I’m pretty sure the eggs aren’t real and the pancakes always taste a bit like plastic, but I love them anyway.

I’m so tired that I fall asleep to the sound of talking animals on the television. I sleep hard from the long day of driving. I wake to the sounds of my sister and mom rustling around the room. Stuffing my pillow over my head, I fall back asleep, only to be woken what feels like seconds later by my alarm. It doesn’t matter how long I spend sleeping; I always wake up tired.

I take my time getting ready. Even though I usually feel awful, I don’t want to look that way when I’m in public. I spend extra time curling my hair and applying makeup so that I look the part of a normal, healthy teenager. Claire is hungry and impatient, so mom takes her to breakfast. I’ll catch up soon.

Once I’m happy with my appearance, I grab the spare key card that’s sitting on the table and head out the door. I find that I’m faced with taking the elevator by myself. Taking a deep breath, I step inside. I remind myself not to act like a baby about this. Just because I don’t like something doesn’t mean I can avoid it. The elevator ride doesn’t take long, but the short time in motion is miserable just the same.

The doors open and I step into the lobby. Tables, chairs, and a long counter of food are set up opposite of the check-in counter. As I make my way to the short line of people waiting for the buffet, Claire waves at me from one of the tables, and I nod back. It’s a complimentary breakfast, so it’s nothing too fancy. However, I’m still happy to see a dish of cheese “omelets.” I scoop two onto my paper plate then proceed to add a couple slices of bacon, a blueberry muffin, and a strawberry yogurt. I grab one of those cardboard cartons of low-fat milk, like they serve in elementary schools out of the mini-fridge, and join my family at their table.

“You’d better eat fast,” Claire says as she fills her mouth with a large spoonful of Cheerios.

She is bossy sometimes. I think she’s trying to act like she’s my mom. It can be really annoying, but I kind of understand it. She certainly picks up a lot of my slack when I’m too sick to do anything. She probably feels a bit responsible for me.

I ignore her comment and focus on the delicious, cheap food piled in front of me. The omelet tastes like it was made with that cheese-in-a-can stuff. I know it sounds gross, but these eggs are like a drug to me. When I’m about halfway done, my mom raises her eyebrows and gestures to the saltshaker. I roll my eyes and continue to eat.

“Caitlyn,” she says, warningly.

I pretend like I don’t hear her. I shovel a large piece of egg in my mouth and chase it with a big bite of bacon.

“Just use the salt,” Claire mutters.

She picks up the saltshaker and shoves it at me. I stick out my tongue at her.

“I saw that,” my mom says. “You know what Dr. Schaeffer says. You need to increase your salt intake. There is no point in driving all the way up here if you don’t listen to what she tells you to do.”

I sigh and grab the salt. I make a show of pouring it over all of my food. I even include a little bit in my yogurt, even though I know I will probably regret it. My mom looks aggravated, but she doesn’t say anything. That’s probably for the best. I wouldn’t respond well to a lecture right now.

I’m not trying to be a pain. It’s just that it’s not very often that I feel hungry, or that food tastes good to me. So, it would be nice if, for once, I could just enjoy my meal without piling gobs of salt all over it. I dig my fork back into my eggs and force myself to eat the rest of the salty mess. The yogurt is pretty gross, but I make myself eat it anyways. I’m being a baby and I know it. I didn’t need as much salt as I poured on my food, but I did it anyways. When am I going to grow up?

When I finish my super salty breakfast, we clear our plates and return to our room. We’re running behind schedule, so there’s little time for talk as we scurry around grabbing whatever we think we need and making last minute stops in the bathroom. I grab my side bag and fill it with a water bottle, a Powerade, some pretzels, a book, my cell phone, and my ear buds.

I feel like I’m packing for vacation, not a visit to the doctor. However, experience has taught me to always come prepared for appointments. If an appointment is scheduled for nine o’clock, you may see the doctor at 9:15, or you could be waiting until eleven. And that’s just the initial wait. If any tests are scheduled, a quick doctor’s visit can turn into a whole day of sitting in waiting rooms and getting poked and prodded like a test monkey. Books help stave off the boredom, but snacks and drinks are absolutely crucial.

Mom checks her bag one last time and escorts Claire and me out of the room. The elevator ride and car ride pass quickly as mom grills me on the purpose of our visit to Dr. Schaeffer. It may sound overboard, but when you just traveled for eight hours to see a doctor, you want to have a clear game plan. I’m used to this routine, and I only feel a bit nervous as we pull into the Mayo Clinic.

I can never get over how huge the complex is. My mom navigates us to the right floor of the right building. It was a long walk to get to Dr. Schaeffer’s office and I’m feeling lightheaded. I ask my mom to sign me in while I find a chair.

I’m great at scouting out chairs. I’m like a hound dog that can sniff out all the chairs within a three-mile radius. Of course, there are lots of empty seats in the waiting room, but I find the prime seats. With prowess worthy of Sherlock Holmes, I claim seats that are far enough from the TV to not be irritated by the daytime soaps, out of the way of foot traffic coming in and out of the office, near enough to the restrooms so that I don’t feel like I’m hiking when I inevitably have to pee, and, most ideally of all, have a coffee table filled with magazines standing directly in front of them. I push the magazines to one side and use the empty space as a footrest. I recline—as much as a waiting room chair will allow—and revel in the comfort of sitting.

Claire soon joins me, putting her feet up in imitation of me.

“Mom’s still waiting to sign you in,” she says.

It’s kind of a pointless statement as I can see my mom waiting in line, but I let it slide. Claire pulls out her 3DS and starts playing Mario or one of those other games. I’ve never cared for video games and as much as Claire has tried to explain them to me, I just don’t get the point. Give me a good book over a video game any day of the week.

Mom comes over and joins us. She watches Claire play her video game for a while then she pulls out her phone and starts checking emails. I start to get bored, so I rifle through my bag and find my book.

Time ticks by slowly in the waiting room. Even though my appointment was scheduled to be one of the first of the day, it’s nearly eleven before the nurse swings open a side door and calls my name. I put away my book, pick up my bag, and make my way to the nurse.

“Good morning!” she says cheerily.

She smiles and nods at my mom and sister. They follow me into the narrow hallway beyond the door.

“First, we’re going to check your weight.”

I stand on the scale. Then I submit to the rest of the routine. Height, blood pressure, pulse, temperature: all of these are checked before the nurse leads me to a room. I obediently lie on the table while she runs an EKG. She asks a few basic questions, before slipping out of the room.

“Dr. Schaeffer will be in, in a moment,” she says.

Mom and Claire make themselves comfortable in their chairs. There are only two, so I have to wait on the table. I decide to lie down. What’s the point of being upright if I don’t have to be?

After another twenty minutes of waiting, a knock comes on the door. It swings open and Dr. Schaeffer comes in, apologizing for the long wait.

I’m going to skip telling you about the next portion of the visit. I’m not sure how much I’m supposed to discuss, thanks to HIPAA and privacy policies and all that stuff. You don’t need to know every detail of my visit, anyway.

What you do need to know is that an hour later, tears are streaming down my face as I ride in the car to find something for lunch. I don’t cry easily, but sometimes I get so frustrated I can’t help but cry.

“I didn’t think it went that badly, Caitlyn,” Mom says after taking her eyes off the road to turn and look at me.

I’m in the passenger seat now and Claire is in the back. It’s kind of customary for us to switch seats after an appointment, so that it’s easier for me to talk to Mom.

“You already knew that there is no magic cure for this. I think she had some helpful advice.”

I choke back a sob.

“I’m just so frustrated,” I manage to say. “I wanted her to have something to help me. I wish I was normal.”

“I know, but wishing isn’t going to help you. You heard what she said. You really need to work on exercising more. I know you don’t feel like it, but she said that it would help. You just have to do it anyways, whether you feel like it or not.”

“I know.”

I’m starting to get an attitude, and I know it. I try to bite my tongue, and I wipe the tears from my eyes.

“Where are we going for lunch?” I ask.

My mom knows I’m trying to change the subject and she doesn’t humor me.

“If you really want to feel better, you have to start doing the things that Dr. Schaeffer tells you to do. When we get home, I want to see you step up and do your exercises at least three days a week. And, I know you don’t want to hear it, but she said that cutting out dairy could really help your digestion. I’ll help you find some dairy free foods, but you need to decide if you are serious about getting healthy or not. I can’t do it for you.”

“I know, Mom.”

“I exercise five days a week,” Claire chimes in. “I have basketball three days and swimming the other two.”

“Shut up, Claire.”

“Mom!”

“Caitlyn,” Mom says warningly.

I stare out the window for the rest of the car ride. I can’t help feeling disappointed that we drove eight hours just to hear that I need to exercise more and cut out dairy. I guess I’m not sure what I expected. Of course, my mom is right. There is no magic cure for this. Any hopes that I built up about this visit being some life-altering experience were a fool’s hopes.

I have POTS. Dr. Schaeffer says there’s a good chance that I will always have POTS. I have to learn how to cope with the symptoms. Then, when I’m comfortable with those symptoms, I have to relearn how to cope when new ones arise.

This is my life. I’d be lying if I said it wasn’t hard. I’d be lying if I said I didn’t wish every day for my health to be restored to what it once was. But I can’t spend my whole life wishing for something that will never happen.

All I can do is take things one day at a time.

We pull into the parking lot of Wendy’s. My mom and sister are quick to hop out. I put on a small smile as I open the car door. Today, I am going to enjoy a hamburger, sans cheese, and a medium Dr. Pepper. And, maybe, just maybe, in a few weeks, I’ll be enjoying a dance with that cute guy from Spanish class.