Since I was a preteen I have dealt with the effects of what I didn’t know was a chronic illness called postural orthostatic tachycardia syndrome. I also didn’t know the profound effect that it would have on me in ways I can’t even really explain.
One affliction after the other led me to where I am today. In fourth grade I began having tonsil infections over and over, and I was always leaving school early because of stomach aches. I had my tonsils removed when I was 12, and soon after began having chronic sinus infections that would knock me down for two or three days at a time, despite being on allergy shots, inhalers, and extensive antibiotics. I was constantly lightheaded, and I felt that more than met the eye was going on apart from these common problems, but I didn’t realize how it would later manifest itself more clearly. 20 days into my freshman year of high school, I pulled out of public school to do home-based distance education. I didn’t tell anybody I was leaving, and very few people seemed to notice.
I soon had surgery on my sinus passages, and my infections immediately went away. But one month after I had recovered, everything changed. On New Year’s Eve of 2010, I first felt a stabbing pain in my side. I saw doctor after doctor and underwent all sorts of scans, ultrasounds, blood tests, and more, but the pain was a total mystery. Meanwhile, my heart was racing all the time, and I was feeling weaker, isolated, and scared. One night I was in the ER and they just sent me home. This continued for five months until I finally had exploratory surgery to remove my appendix.
The pain in my side went away, but multiple symptoms stayed. After more tests and doctors, I was soon diagnosed with postural orthostatic tachycardia syndrome; which is a type of dysfunction of the autonomic nervous system (dysautonomia). Basically, the part of my nervous system that controls the functions that we don’t consciously do, such as heart rate, blood pressure, digestion, and other vital processes, is dys-regulated. POTS means that my cardiovascular system doesn’t counteract gravity the way it should when I stand up; my blood vessels don’t push the blood to my brain adequately, which causes my heart rate to go up. Often when I am on my feet for more than a few minutes I get lightheaded, my blood pressure may drop, and my heart pounds in my chest. There are a few medications that can control the symptoms, but there is currently no cure.
It was hard enough learning to adapt to this, but just a few months later I found myself in the operating room for the fourth time; this time to remove my gallbladder. Yet again, this surgery brought in a new year and a new journey. Over the next three years I spent much time out of town seeing specialists, undergoing tests, even traveling out of state for a specialized procedure and test.
These times of struggle have built an incredible bond between my parents and I. My mom has been a special advocate for me when I didn’t have it in me to advocate for myself. They’ve done whatever needed to be done for me to make progress. 4 months ago we found ourselves hundreds of miles from home as I spent 11 days in the hospital, pretty much relearning how to eat. This specialty hospital identified the problem and had the only treatment program in the nation. It changed my life.
This journey has irrevocably changed me and shown me things that I will carry for the rest of my life. I’ve never been able to even understand how this journey has helped me to see the things that were right in front of me all along.
As a result of my physical afflictions, my eyes have been opened to the many young people who are fighting similar unseen battles against their own bodies, and the emotional and spiritual battles that go along with that. Many of the people I’ve connected with online who deal with similar problems share my faith as well. I have seen it transform their faith as well as mine. I’ve noticed a trend that these sufferings often draw us closer to God and His word. It shows us where our treasure really is; it shows us where we’re going. Home.
And so I see now that maybe it would be a privilege to live in a broken vessel if it would give me the eyes I need to see my treasure. I don’t regret those days I’ve spent in pain because it has helped to lift my eyes up and take intense joy in understanding that God knows us better than we know ourselves. I could have never gotten through those incredibly hard days and come so far on my own.
I am now in the beginning stages of physical therapy to get my body stronger and correct some problems in my legs and joints. Some days POTS is harder to live with than others. I just keep doing what I need to do to deal with it from day to day. I’m still discovering where my limits are, and where I thrive.
I cling to the promises in the last chapters of Revelation. I cling to the anticipation of one day physically running my hand along the scars in our Redeemer’s hands in wonder, of falling before the same One who was with Shadrach, Meshach, and Abednego in the midst of a raging fire. Until that day, I am content and so very happy with the life God has given me. There are truly exciting times ahead.