“When Standing Still Felt Impossible” by Mallory Drees, 18

It all started with migraines. Debilitating, vomit-inducing migraines that would last for  days. My parents started believing that my pain was real when I was writhing in my bed from the  pain on Friday nights and Saturdays. "If she's doing this on her own time, maybe she isn't trying  to pull a Ferris Bueller during the week." I couldn’t leave the house without my sunglasses, and  even then I was having daily migraines. This was when I was in fourth grade. When I was in  high school, there were a few years that I wore sunglasses indoors because the lights in the  classrooms were so painful. Naturally, I received harassment from students and teachers on a  daily basis. My symptoms soon expanded and worsened.  

In middle school, I used to lose my vision during running exercises in my gym class. For  a while, I attributed this to migraine auras. One day during gym class, we were using school owned heart rate monitors for a lesson. We walked down to the track, and my coach told us to all  measure our heart rates to establish a baseline resting heart rate.  

"It should be between about eighty and a hundred beats per minute." My coach said. I  raised my hand. 

"Mine is a hundred forty-seven, is that bad?" I asked my coach.  

"That just means that you're really out of shape." My coach announced in front of the  entire class. For a fleeting moment, I thought that he must be wrong, because I was an avid  equestrian and I did manual labor at the barn multiple days per week. But this was a teacher, so  he had to be right; I was just weak. 

In high school, my migraines were getting worse, and I started seeing spots and getting a  headache whenever I stood up. For a while I thought I was just dehydrated or needed a snack, but  I soon disproved this when I noticed that my vision would go out after standing up from the 

dinner table. This lightheadedness soon turned into fainting after standing up from my bed in the  morning. I knew that this wasn't normal, but I wasn't fainting in public, so was it really that bad?  Then I started fainting in public. The first time was at an NJROTC ceremony where I had to  stand perfectly still for over forty minutes. Weeks before the event, my instructors told us to stay  hydrated before the event, because at least one person faints every year. Everyone laughed, it  seemed to be a joke. Until it was me. The last thing I remember before waking up on the ground  was raising my hand, looking at the student that was in charge of my platoon, and saying,  "Ma'am, my vision is-." Apparently, I collapsed before finishing the sentence. My knees gave  out, I hit my head on the gymnasium floor, and I woke up with my legs making a "W" shape beside me with hundreds of eyes on me. If I hadn't been told beforehand that fainting at this  ceremony was normal, I probably would have made a doctor's appointment. But no, this happens  every year, so I stayed in class for the rest of the school day, and my parents didn't even receive a  phone call.  

For all four years of high school, I was a color guard member for my school’s marching  band. Color guard involves dancing, sprinting across a field, and spinning flags and other props  while the band plays music and marches around a field for roughly eight minutes per show. This  activity is much more physically demanding than most people realize. Each year of marching  band starts with two weeks of band camp, which is when all of the students learn the music,  choreography, and where to go on the field during the show. Band camp usually takes place on  the hottest days of the summer, during the hottest times of the day. At my school, the color guard  team was required to show up every day for two weeks before band camp started in addition to  attending the two weeks of band camp. There were many times during band camp and the weeks  before that I had to take extra breaks because my heart was racing and I was seeing spots. There  were a few instances where I fainted, but I was usually able to sit down first instead of collapsing onto the asphalt. After each day of band camp, I would go home and lay on the floor for about  two hours. Laying on the floor was the only thing that I could do, because I was just so  exhausted. 

At this time in my life, I was starting to realize that my symptoms weren’t normal, and  that they were leaving me in dangerous situations. I started researching my symptoms and  concluded that I might have a condition called dysautonomia or postural orthostatic tachycardia  syndrome (POTS). Dysautonomia is an umbrella term for conditions that occur due to the  dysfunction of the autonomic nervous system, including POTS. The autonomic nervous system  regulates things like blood pressure, heart rate, pupil dilation, and blood vessel constriction,  among so many other involuntary bodily functions. In my case, I was fainting because the blood  vessels in my legs weren’t constricting when I stood up. Because of this, my blood was rushing  away from my head, and it was pooling in my legs. My body was realizing that this was a  problem, so it was compensating by releasing adrenaline in huge quantities, which was causing  my heart rate to skyrocket during any amount of physical activity. My migraines were also being  triggered because my pupils weren’t constricting properly, and they were letting in too much  light. 

One day during my junior year of high school, band camp had ended for the day, and as  usual, I was exhausted. I was stuck in a cycle of standing up, getting lightheaded, almost  fainting, and then having to sit back down. My guard coach’s mother saw me trying to inch  myself across the floor and naturally became concerned. She brought me my water bottle from  across the room, and I told her that I was okay, but that I thought I might have POTS. She agreed  that this was probable, because her daughter (my guard coach) had been diagnosed with POTS  and has very similar symptoms. My coach’s mother checked on me often after this incident, told  me about different ways to prevent flare-ups and manage my symptoms, and even gave me a few pairs of compression socks. A few weeks later, I had an appointment with a cardiologist, and she  diagnosed me with dysautonomia. 

After getting diagnosed, I started a medication that changed my life. Instead of getting  headaches and losing my vision over ten times per day, I was only having these issues about once  or twice per week. I was finally able to get back to the training that I was doing before my  symptoms became unmanageable. I still have symptoms during exercise, when I’m in extreme  temperatures, or if I stand up too quickly, but I now have routines in place that help to prevent  flare-ups and strategies to manage the symptoms that I do have. For example, I take shorter and  colder showers every day, because standing for long periods of time in a hot environment can  make me faint. I also designate time after each shower to sit or lay down, so the blood can return  to my head easier and to let my heart rate go down faster. I have a strict hydration routine that I  follow every day, and I make an effort to work out only in air conditioning. With a lot of  somewhat minor lifestyle changes, I am able to live a safer, more active life. 

Nowadays, I am an award-winning contortionist, a dancer, a college student, and an  equestrian that just got hired for her first job. It took a few years for me to discover methods that  allowed me to live a life like this, but I am very grateful to the people that helped me along the  way. Having a good support system is truly essential in navigating life with a chronic illness. I  struggled mentally for a very long time because I had to give up passions that triggered flare-ups,  but with their help, I was soon able to find ways to modify those activities so I could do them  safely. If it wasn’t for my guard coach and her mother, it would have taken much longer for me  to start improving my condition. Because of the information and resources that they provided me  with, I was able to go to my first cardiology appointment having already tried all of the home  remedies that my doctor would have suggested. This allowed me to take the next steps with my  doctor to develop an effective treatment plan. The importance of having supportive friends cannot be understated. Before my first date with my boyfriend, he researched dysautonomia and  POTS on his own and bought me Ritz crackers because he read that consuming more salt can  reduce POTS symptoms. It’s little actions like that one that remind me that I'm not a burden, and  that I have people in my life that want to watch me succeed. Living with a chronic illness can be  exhausting and frustrating, but that doesn’t mean that your life is over. It simply means that you  have to work harder to reclaim the things that you love.