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How I Went From Barely Surviving to Fully Thriving With POTS

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Hi, I’m Tommy. I’m a rising sophomore at the University of Michigan living with postural orthostatic tachycardia syndrome. I have experienced many of the ups and downs of those that have been diagnosed with POTS, but today I am living a healthy, happy life. I can look back and say I am genuinely thankful for my POTS diagnosis and know I have been shaped for the better because of it. I want to help people power through POTS, and realize that everyone is a powerful individual, no matter what they are going through!

I was diagnosed with postural orthostatic tachycardia syndrome following a concussion the summer before my junior year of high school. At first, I ignored the diagnosis. I was a high-performing student on the top academic track at my high school, and I was involved with AP classes and varsity basketball while maintaining the role of Vice President of my class.

I was way too busy for a high schooler, especially one with POTS. Between staying up late studying, daily workouts and training, and hours per week towards building our homecoming float, I was gradually wearing my body down, not putting thought towards taking care of myself. This built up all the way to mid-October, leading to homecoming weekend. However, on the night of the homecoming dance, instead of being out having fun with my friends at the dance, I crashed. I never left my house, and I was fainting and throwing up because I had ignored my POTS and failed to take care of myself. I had pushed my body too far, and it started to push back.

The rest of my junior year was a blur. I spent most days in bed watching TV or playing video games, with brain fog, intense shoulder, back, and neck pain, and light-headedness whenever I stood up. I never really left my house, lost my relationships with most of my close friends, and fell into a deep depression. At weekly hospital visits, I was tested for everything from brain lesions to mini seizures to whether or not I had complete motor control in my legs because of a limp in my walk. I worried that I would no longer be able to achieve the goals I once dreamed of, and I wondered if I would ever feel “good” again. I just wanted a day without pain, dizziness or fatigue.

It’s scary, the fear that you might be losing yourself. Losing your entire identity. I had given up on life in a way because I really did not see any hope. How could I live my life if my body wouldn’t let me? One night, however, I was reading a book about investment banking. I was interested in banking as a future career path, and the thought popped into my head that if I wanted to achieve my lifelong dreams, I had to start going to school. If I wanted to get into college, I had to show universities that I was making positive change. I probably did not need to be an all-AP straight A student, but just showing that I was making progress in my life and academics is all colleges need to see. I made a concrete decision that night to be the best I could be. If I wanted to change my life, I needed to put in my absolute best effort every day.

To be the best version of myself, I saw no other option but to try and live as “normal” a life as I could. I was in school two to three days a week for a few hours at a time. I was lucky to have incredible support from my parents, my guidance department, and my teachers. Though I had to drop out of my morning class in my first semester, I was able to finish the three classes I had signed up for in second semester (a normal student at my high school takes for classes).

I also watched my twin sister and younger brother go through a POTS diagnosis of their own. They both went to the Pediatric Pain Rehabilitation Program at the Mayo Clinic in Rochester, MN. I watched them return home with a “mind over matter” attitude and learned there was no cure for POTS, only a way to live with it. I absorbed some of the strategies that helped them, such as following the Levine protocol on an exercise bike, taking daily salt and Florinef, and using the cognitive behavioral therapy principle of  “faking it til I made it.” These changes allowed me to live my life, although I was still relatively unwell and uninspired.

After seeing the positive benefits Mayo brought to my siblings, and because I knew most of the principles of the Pain Rehabilitation Program, my parents and I made the decision to attend the two-day Pain Rehab Program for teens the August before my junior year. My goal was to gain a “toolbox” to deal with my chronic pain and to meet other people my age with POTS.

The Mayo Clinic was incredible. I learned cognitive behavioral therapy, strategies to help me get through bad days, and most importantly that there is no cure to POTS, meaning I had to live my life no matter what I was going through. I was able to talk with others who were also going through their trials with chronic pain, and we held each other accountable as we stopped our pain behaviors, attended activities together, and maintained an overall positive attitude.

After Mayo, I was no longer allowed to talk about my pain. My parents couldn’t mention it either. The fascinating science behind ignoring pain lies in the concepts of neuroplasticity. By focusing on my life, I was literally rewiring my brain to ignore my “pain pathways” and establish a more productive thought stream. Chronic pain sometimes means that the actual physical cause for pain has gone away, but one’s brain can get so deeply wired that every time they have a certain thought or behave a certain way they will feel pain, no matter what the body’s physical health is like.

I started following a consistent sleep schedule, established a morning meditation routine, and constructed an exercise plan. I started to make more plans with friends. No matter how I was feeling, I followed my schedule and kept my commitments to myself and others. I started to take control of my pain after my pain had had control of me.

My pain disappeared once I stopped feeding it. And every time it would pop back up, I would practice what I learned through cognitive behavioral therapy and my newfound meditation habit and just focus my thoughts, clear my mind, and turn my attention to what was next on my schedule. I was lucky enough to start school right after I returned home from Mayo. I still did not have a first period, but I attended every one of my other classes and did not miss a day of school in the first semester of my senior year. This was an incredible time for me. I went from chronically absent and being known as a “sick kid” to showing up every day with a smile on my face. I built up the endurance to work out six days a week, got back to being involved in my vice president role for our homecoming celebration, and played intramural basketball, leading my team to an undefeated championship season.

Despite all of those great elements of my comeback, I was still “behind” my previous self in almost every way. I couldn’t take the AP classes I wanted, couldn’t play on the varsity basketball team I had dreamed of and wasn’t able to devote as much time to my class and homecoming as I would’ve liked. Additionally, though I did not acknowledge my pain, it still showed up every day, and my body was not exactly doing me favors. At this point, I could have complained that I still had issues, that my life was harder than most kids around me. But I chose to look at it differently — I was doing far better than I was before, and every day was part of my constant and never-ending improvement.

I kept building up positive brain changes, sticking to my guns and following my plan. My positive momentum continued all the way up until the end of high school. As vice president, I gave the opening speech at my high school graduation, and it was surreal. In just under a year, I had gone from scared of standing for too long in fear of dizziness and pain to standing confidently, representing my high school class, welcoming thousands of people to our graduation.

When applying to college, I looked to use my story as a way to set myself apart. I truly believe that the resilience I displayed and the perspective that I gained from my trials with POTS was an advantage in my life. My Common App personal statement was all about my resilience and positive change I had gained since my diagnosis. My story helped me gain admission to the #1 public university in the country, the University of Michigan, and the #3 business school in the country, the Ross School of Business.

I knew absolutely no one going to Michigan, but the challenge of making friends paled in comparison to the challenges I had faced in the past couple years. I realized I was fortunate because with my perspective, what seemed like major problems to others were just minor issues to me. At Michigan, I tried out for and made the top club rowing team in the country, and joined a consulting club with a 2.5 percent acceptance rate. What was my strategy?

“Go in knowing you can do anything you put your mind to, and knowing any setback will end up benefiting you later on in some way.”

Trying out for clubs and organizations was literally a win-win for me: if I got in, I was suddenly a part of an awesome team like Men’s Rowing. If I didn’t, I knew the organization probably wouldn’t have been a good fit for me and I had the opportunity to try something else.

College has reinforced my belief in myself and raised my self-worth. Going from not being able to play sports in high school to competing at a collegiate level in a demanding sport such as rowing showed me I can do anything. Achieving a 3.9 GPA first semester at a top-ranked school after struggling to stay in class in high school showed me I can do anything. And living a life where I am in complete control, where I can say I am truly happy, has shown me I can do anything.

As I said earlier, my journey is still far from over, and I am learning and growing every day. I have been fighting neck and back pain for the last three years and think I found an answer with a recent diagnosis of thoracic outlet syndrome. Some days my pain will flare up, and I’ll lay on my bed and question whether I can accomplish what I want to with the unpredictability of my body. But then, I always remember: It’s not about the cards you’re dealt in life, it’s about how you play the hand. I know I have to still exercise, socialize, and live my life no matter what my body feels like.

One could say today I am symptom-free from POTS, but I look at it as a daily practice of living my life no matter how I feel. Looking back, I am thankful for my pain and suffering. I am now a thriving individual who takes care of their body before everything else, and I am passionate about health, fitness, and self-improvement. I love to learn about new ways to optimize my physical and mental health and performance and share those with others. Sometimes I think, how would I ever have discovered the powers of neuroplasticity or positive self-talk without POTS?

My goal is to now use my story to educate, help, and inspire others, and build a platform to show stories of those who have powered through POTS — both by fighting through symptoms and by using their POTS to their advantage. I will be posting about everything from skills I use to combat POTS to routines I use to control my life to what I learned at the Mayo Clinic — with stories of POTS success sprinkled in. Thank you for reading and please share this post to help reach and inspire others!

This story originally appeared on Power Through POTS.

Originally published: July 11, 2018
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