For as long as I can remember, I wasn't exactly like everyone else - although I'd like to believe that I'm not like most people intellectually, my glaringly obvious difference among other people came from my physical appearance: my height. I am currently 6'8".
I was always much taller than the rest of my peers growing up, to which I was greeted (and still am, to this day) with a bombardment of both facetious, yet serious questions: "How did you get so tall?" "How much milk did you have to drink to get that tall?" "Could you lend me a few of your inches?" "How's the weather up there?" "Do you play basketball?" Among these questions is one that I have a particularly difficult time explaining: "How did you get so tall?"
The answer to that is a simple, yet very complex, answer: Marfan Syndrome.
Yes, I do, in fact, have a syndrome and it affects me in more ways than people even recognize. But before I get into the logistics of that, allow me to tell you a little bit about this complex syndrome. Marfan Syndrome affects around 200,000 people in the United States every year; to put this into perspective, the population of the United States, as of right now, is 326,922,892 people. This means that Marfan Syndrome affects around .06 percent of the population of the United States annually, which is extremely low.
According to the Marfan Foundation, some of the symptoms of Marfan Syndrome include: long arms, legs, and fingers, tall and thin body type, curved spine, chest sinks or sticks out, flexible joints, flat feet, crowded teeth, stretch marks on the skin that are not related to weight gain or loss and more. I do, in fact, exhibit all these symptoms, which I will talk about in more detail a bit later. In addition to these physical symptoms, there is a more severe, underlying symptoms: an enlarged aortic valve (the largest artery in the heart.) I, too, have an enlarged aorta.
Now that we've got all of the statistical/scientific (and quite frankly, a little boring) things about Marfan Syndrome out of the way, allow me to talk about how Marfan Syndrome affects me. First and foremost, Marfan Syndrome effects my back tremendously. At the age of 15, I was diagnosed with spinal arthritis, something that is most common in people over the age of 65. In addition to this, my spine is also curved, causing problems with things like as posture.
This curvature in my spine has lead me to develop scoliosis, an incurable condition in which your spine inherits an abnormal "C" shape in it. Spinal arthritis accompanied with scoliosis makes it very difficult for me to do things such as standing for long periods of time, sitting properly without slouching, and more. This aspect of my syndrome is especially troublesome when working, especially while working two retail jobs that require six hours of constant standing and/or walking per job (I sometimes work both jobs on the same day.) Not only is this aspect of my life painful, but it also puts a very significant dent into my overall confidence; I am always aware of how straight my back is and, often times, envy how straight people's backs seem to be in comparison to my own.
The damper to my confidence does not cease there. Another symptom of Marfan Syndrome mentioned earlier is a chest that sinks or sticks out. My chest protrudes from the rest of my body, and it is very significant to my overall appearance (at least, I believe it is.) I constantly am aware of how much my chest is on display. One way to diminish the appearance of my protruding chest is to slouch my back, causing my chest to recede back a bit; however, that only makes the insecurity of my back even worse. Overall, the situation is a very uncomfortable one.
In addition to this, clothes do not fit properly… and I'm not joking. Let's say I purchase a slim fit t-shirt (a very popular t-shirt among young males today); a slim fit shirt is meant to hug the body and show it off. In my situation, all the shirt does is surround my protruding chest and make it that much more obvious. Well, let's say I decide to buy a shirt that is a bit looser; this shirt only hangs off my protruding chest giving a more baggy/loose appearance than normal. I am extremely uncomfortable about 85 percent of the time, even in my own clothes.
My height only amplifies these two insecurities. Because of my height, I draw so much attention, everywhere I go. Whether it's while riding the train, walking on the street, working, or simply buying something from a store—I feel people's eyes burning holes into my appearance. Many people are not discrete about their awe and amazement, which is flattering, yet extremely uncomfortable (sometimes.)
The sequence in my mind appears something like this: 1. Person/people notice my height. 2. Person/people notice my chest. 3. Person/people notice my back. 4. Person/people think I look weird. This sequence is one that I live through more often than a majority of people realize and questions about my height only confirm my valid fallacious thoughts and initiate this cycle of uncomfortableness.
These are just physical stresses I have because of Marfan Syndrome. An unseen symptom I have is an enlarged aorta, which is, by far, the most worrisome part of having this syndrome. To sum this symptom up, the largest artery in the heart, the aorta, is larger than it should be. Over time, this causes a plethora of issues, which I am thankful to say I have not experienced yet.
Because of my enlarged aorta, I cannot play certain contact sports like football or rugby; sports that kids and teenagers, like me, thoroughly enjoy. This is because I could put too much strain onto an already strained artery, causing it to be seriously injured or even burst. This stress threshold must also be adhered when doing physically intensive things, like working out. This same issue was the reason why my mother had open heart surgery—a surgery that would later lead to her death. It is impossible for me to avoid thinking about a similar sequence of events that I may have to endure as well, including an open-heart surgery.
What I'm trying to articulate is that sometimes there's more to a person than what you initially see. Yes, I am very tall—I do agree with this; however, there's so much more to the overall picture. My height is an embodiment of the other things in my life that make me uncomfortable and you're acknowledgment does not help with it. Although I'll admit it is flattering to hear people comment on my height, it is sometimes overbearing and inconsiderate, especially if you do not know me or consider the other aspects of my life affected by Marfan Syndrome.
Let's try and be mindful, everyone. Perhaps next time you see that tall gentleman or woman in the street, you will respectfully view from a distance because you just. Never. Know.
