How’s The Weather Up There?
A Response To Ignorance
My name’s Mackenzie, but you probably know me as that really tall girl that you pass in the hallways sometimes, and probably see boys avoid standing by me because I make them insecure about their height.
If you don’t know me, then hi! I’m tall.
B
eing roughly 6’1”, everyone and their brother seems to think it’s funny to comment on my height. It’s almost like they think I don’t know I’m tall. One of my personal favorite remarks has always been “How’d you get to be so tall!?”
Being my snarky self, my usual response to this is simply “Genetics.”
Turns out, this is more true than I realized.
This past February, I was diagnosed with Marfan’s Syndrome. By definition, Marfan’s is a hereditary disorder of connective tissue, resulting in abnormally long and thin digits and also frequently in optical and cardiovascular defects.
In layman’s terms, it’s a connective tissue disorder that causes long, thin limbs, flexible joints, bad eyesight, and can lead to severe heart problems, among other issues.
Now, even though the symptoms of Marfan’s Syndrome sounds like a doctor was given the job of describing me in only medical terms, the diagnosis process wasn’t as quick as you’d think.
It all started back in July, when the most embarrassing thing in my life happened.
I was standing in a pew, videotaping a wedding with my mom, when all of the sudden my legs felt weird. The thought came that I needed to sit down, and next thing I knew, I was outside. Turns out, I fainted, for what seemed like no reason at the time, onto some dude (who later tried to flirt with me even though he was uber old, like I’m talking twice my age at least).
After that semi traumatic experience, my life changed big time.
All of a sudden, I seemed to be tired all the time. Not a im-a-relatable-teen-so-im-always-tired level of tiredness, genuine exhaustion. In fact, one night I stayed up in attempts to pull an all nighter, and it took me four whole days of doing nothing to regain my full energy. I also lost almost 20 pounds in the matter of weeks, and seemed to be out of breath all the time.
This was highly concerning, and began my series of unfortunate events- never ending doctor appointments. Not only were these visits exams, they also included multiple tests.
I’ve had appointments with pretty much every type of doctor; neurologists, optometrists, radiologist- you name it- and I’ve been hospitalized twice in the past four months.
Every single doctor I visited said the same thing- I needed to see a genetics counselor to get testing for Marfan’s.
But here’s the catch- genetics counselors are terribly difficult to get in with. By the time we got ahold of one in November, the earliest appointment they had open was on January 31st.
With that, all I could do was wait.
During this agonizing period, I tried to think of my probable diagnosis like a pros and cons list.
Sure, there are lots of cons, such as knowing you’re heart could kick it at any moment, having people tell you you’re not actually sick, knowing you’re carrying a hereditary disorder in your genes, and suffering illness without a cure.
But, among these there are pros, like missing school every other week, getting Steak N Shake after every haul down to Children’s Hospital, hopefully getting college scholarships, and having understanding teachers who go out of their way to make sure you’re caught up on your work (thanks Mr.Limbacher).
When this wait was finally over, I had my long awaited genetics counseling done. Then, after a few days when the results came back from a series of tests such as wrapping my fingers around my wrist, checking for scoliosis, touching my nose with my tongue and measuring my wingspan, I was finally diagnosed.
Now, with my official Marfan’s diagnosis, I know what I’m living with. Sure, there isn’t any one cure, and I’m going to have limitations for the rest of my life, but as they say, knowledge is power.
As long as it took, I’m grateful to have gone through the diagnosis process, and I’m thankful for all the support I’ve gotten.
So, when you see me sitting out of gym class, please don’t laugh. When you see me out of breath in the hallways, please don’t point. When you hear me complaining about my symptoms please don’t moan.
I’m going to have to live with this for the rest of my life, and everyone in my life will too. I cannot change my symptoms, but I can change my outlook on them.
But hey, it’s not all bad- I can reach all the top shelves.
