Rewind six years--
In the passenger's seat of my mom's car as we pulled out of the neurologist's office, melodramatic, eighth grade me was humming along with Kid Cudi on my iPod Nano as he sang "Ive got some issues that nobody can see, and all of these emotions are pouring out of me". I intentionally watched each raindrop slip down my window strictly to avoid my mom's concerned glances. I'd had, oh I don't know...7, 12, 18 doctors' appointments that month, but this one...this one was somethin' else...
In a typical week, I'd sport electrodes once or twice--sometimes on my head, sometimes on my chest, I'd learn to hate a new medication, listen to speculations and attempted diagnoses, I'd collapse any number of times, drop another three pounds, and this was all assuming I could get out of bed. My symptoms, while seemingly common, left doctor after doctor puzzled. They searched high and low for the source of the immobilizing fatigue, the spinning world around me, and the fainting spells that quite nearly cost me my "free and accessible" public education.
It wasn't the ear infection causing severe vertigo anymore than it was the acute epilepsy of the brain. They ruled out conditions and diseases I had never heard of and, thankfully, the looming ones I had feared the most. While my gratitude for being cancer free was certainly present, it only left me eager to find a diagnosis we couldn't rule out.
The human brain...what a mystery it is. Neurologists, though, they spend their lives studying it; fueling a career solely devoted to understanding and investigating it's intricate yet beautiful nature. Sometimes, they get tripped up...just can't quite figure it out. I can understand that--sometimes calculus tripped me up and I had to throw in the towel. But when that eighth grade girl sitting in her neurologist's office needed answers, he didn't just throw in the towel and admit he couldn't reach a diagnosis like the rest of the doctors so regretfully had, no. This man uttered words that would completely reshape my perspective for years to come. With a glare that I remember to this day, he shifted his gaze from me to my mom as he said "She's making it up."
Bright red hands and even brighter white knuckles were clenched so tightly as if it was taking my mom every ounce of restraint to not slam her fist through the wall and I sat silently, just hoping she didn't hit the doctor. Maybe I was faking it; what else would a fourteen-year-old think? No one else could seem to come up with any other logical possibility...so maybe he was right.
Fast forward to January 2012--
The lights in the room blurred as everything came into focus (literally the exact way in happens in the movies when someone opens their eyes). I had undergone the most brutal, painstakingly intense test for thirty-two minutes as my vitals were recorded on a monitor. Strapped to a hospital bed, I laid flat, at a 180 degree angle, for thirty minutes as my nurse explained to me the next steps. At the thirty minute mark, my bed would tilt to an 85 degree angle and they would monitor my heart rate and blood pressure. If I made it for fifteen minutes, I passed the tilt table test. If I didn't, I failed.
My bed tilted and as quickly as if I had actually stood up, I felt the blood leave my head and my hearing deadened. I was feeling myself lose consciousness and there was nothing I could do to speed it up or slow it down. I saw the lights first and then I was looking at the ceiling before my gaze fell to the man on my right, wearing all blue. I saw he was squeezing my hand between his and sound faded in and out as he was saying "It's POTS, Alexis. You have POTS."
Fast forward to present day--
Postural Orthostatic Tachycardia Syndrome. POTS. The four worded, interestingly acronymed diagnosis that changed my life forever.
I'd give you a definition, but you could find the same things I could if you googled it. Those medical dictionaries try their best, but they tend to leave a few things out. Instead, let me tell you what POTS is, first hand:
POTS is a neurocardiogenic condition that causes blood pressure to drop when it should rise, which accounts for the dizziness as blood drains from the brain and then collapsing when it loses so much you can't stay conscious.
POTS is sitting in the sand and watching your friends play volleyball because you know you can't move that quickly without getting dizzy.
POTS is an overprotective set of parents that won't let you do the things other kids are doing because "what happens if you pass out?".
POTS is taking the special needs gym class and falling in love with the beautiful souls of the boys and girls around you so fearlessly embracing their life, just as it is, disability and all.
POTS is best friends that spend their four years in high school learning how to better take care of you when you pass out so that the teachers don't worry and the nurse doesn't have to bring the wheelchair down.
POTS is loving a boy that doesn't get frustrated when you push yourself too hard and pass out in his kitchen or when you cry because you're so sorry for forcing him to deal with this kind of thing.
POTS is new friends asking if your feet are sunburnt at the beach because they don't know yet that your blood pools in your lower limbs when you're standing.
POTS is learning to know and understand the way your body works to prevent symptoms--it takes time.
POTS is going to college and having to find a whole new set of people to take care of you when you pass out, but knowing they love you so much that they're happy to carry your unconscious body up stairs and across rooms just so you'll be more comfortable when you wake up. It finds you friends that let you push your limits, but catch you when you fall.
POTS is a gift from God that has taught me to appreciate the incredible things that my body can still do despite the things it can't and that has inspired me to advocate for those who don't even know that have it.
Melodramatic, eighth grade me wasn't in need of psychiatric help. I needed a world that was aware of such a prevalent, life-altering condition. I still do. But more than that, the people waiting day in and day out for a diagnosis, they need the world to know. They need YOU to know.
This may seem like a crazy story of one girl thousands of miles from you or it may resonate with you more closely than ever I intended. Whatever the case may be, I urge you to not pass by the opportunity to share this information and carry the knowledge with you.
Postural Orthostatic Tachycardia Syndrome (POTS) affects over a million people, disabling over 25%; it's more common than MS and Parkinson's and yet my first six doctors hadn't the slightest idea what was wrong with me. It's time to stop accepting that story. It is 2016; it's time to raise awareness and time to find a cure for POTS.
#POTSawareness
