A Journey Few Will Take
Below is an award-winning high school speech written/given by one of my dear patients, a 17 year-old young man with super-hero-grade courage, strength, and tenacity. It is with great pride and admiration that I share this inspiring story with you:
A Journey Few Will Take
Can you imagine having something called POTS? No, all you recreational drug users, I don’t do pot; I have POTS- Postural Orthostatic Tachycardia Syndrome. Standing sends my normal heart rate to post marathon – in mere minutes. If that isn’t enough, I also have Vasovagal Syncope – sometimes my blood pressure goes so low I pass out. These complex medical words and a host of medical symptoms plagued my entire childhood and robbed me of my adolescence.
Grab your coat – we’re going to trudge through a path, a path of countless diagnoses and misdiagnoses that have affected my entire life. This thing has no boundaries. It has interrupted tons of school days, hockey and soccer games, ski trips, vacations, and has changed every aspect of my life.
At the tender age of 3, a simple trip to the mall would reveal the first real taste of what was to come. I was in the middle of KFC, when suddenly I stood up, announced I didn’t feel well, and passed out in the cleaning lady’s wash pail. The pail’s germs were the least of the worries that incident foreshadowed.
Fast forward 2 years; it’s 9:05, grade 1. We all stand up from our little desks. “O Canada” resonates – I don’t feel good. I need to sit down. No, I must stand quietly. My head is spinning. *Thud*. My head connects with the bookcase and all is quiet. I “awake”, my head is throbbing and my mom is in my classroom. The adults all have such serious looks on their faces. I lift my hand to feel the welt swelling above my brow.
My mom takes my hand and says we have to go home. I can hardly walk. The next day, I return to school. My friends surround me with limitless questions. I don’t want to talk about it, I just want to pretend it never happened; I don’t like the attention.
These “episodes” replay themselves countless times, yet each circumstance is a little different. Doctors’ visits, numerous hospital admissions, EEGs, EKGs, CT Scans, MRIs, ECGs, biopsies; blood, DNA, and Chromosome testing; X-rays, emergency visits, IVs, and operations. I remember the little gown the nurse once passed me. I remember thinking I’m a boy – don’t they have pajamas. I remember the smells: overwhelmingly sterile. I remember feeling so little on the operating table wanting to ask for my mom, yet knowing I needed to be brave; it would soon be over. I awoke in pain. I just want to go home. When can I go home?
Yet, I am one of the lucky ones. If you stroll the halls of Sick Kids, you see the faces of death. IV poles too big for a child to maneuver. Tubes and hoses coming out from all directions, bags of all sizes and colours, and the look on the fretful parents’ faces reveal the situation. The beeping cracks the silence as the machine sounds the end of the infusion. How much more can that little body endure? It is at these times I am thankful my path is not the same.
So many tests and yet no concrete answers; diagnoses and misdiagnoses. For 13 years the medical community is stumped. I figure more than 50 Doctors have either examined me or my ever growing medical file. Finally, I met Dr. Guzman, who 5 minutes into the exam, stated that he thought he knew part of what was wrong – and he did. A simple tilt table test showed I had Dysautonomia – the dysfunction of the autonomic nervous system. Doesn’t sound that bad does it? Unfortunately, the autonomic nervous system controls so much: temperature, gut function, appetite, exercise tolerance, heat tolerance, fatigue, heart rate, blood pressure; the list goes on…. Believe me at 6 feet 7 inches, when your blood pressure bottoms out, it’s a lot farther to the ground.
Most recently, Adrenal Insufficiency has been added to the mix. Apparently, my pituitary has gone on vacation without me. I am now steroid dependant. Odds are about 1 in 100,000 but my ticket was selected. When most teenagers are breaking curfew, out partying, and staying up way past their bedtimes, my body requires at least 12 hours of sleep per night. I’m definitely not the life of the party!
These past few years, my symptoms have multiplied. I have only attended school for 3 days in almost a year (I won’t be winning the attendance award). My biggest excitement recently was a trip to the hospital in an ambulance. I have also started a Cardiac Rehab program and I’m surrounded by a large group of walkers, wrinkles, and blue hair; I definitely make an impact statement.
So, after years of secrecy why take off my cloak now? I have come to the conclusion that I need to stand up and make people aware of these illnesses. It has been a long painful journey that I wouldn’t wish on my very worst enemy. I have always felt that my medical concerns were a private thing, something I don’t share with most people. I just want people to take me for who I am, but it is becoming more apparent that staying silent not only doesn’t help me, it is the very thing that keeps others from being diagnosed.
Even a cutting edge hospital like Sick Kids did not know enough about this to make the diagnosis themselves. Others will have my map, the map I used to explore this dungeon of medical conditions I’ve faced. Med students are taught: “when you hear hoof-beats think horses”- I’m proof zebras do exist too. Sometimes you need to think outside the box. This journey is one few will take and has taken its toll, but it has made me who I am and realise, as a society, we take too much for granted. It’s the hand I was dealt; it’s up to me what I choose to do with the cards.