On first glance at seeing me, the majority does not look twice. This statement isn’t designed to encourage pity—it’s simply the truth. Something, as I have matured, I have learned to look past. However, doing a quick scan over my physical features, a few things stand out, good or bad: my thinness, my shortness, my scoliosis, and my big, brown eyes. These are all very different things, and all warrant discussion. But I choose to focus on my eyes for the moment.
In every picture I have seen of myself as a child, I look back with nostalgia. I am reminded how frequently I was complimented on my big, dark, brown eyes. My body was not yet the fascination of those looking on in bewilderment, because the sole focus of me was my eyes, the “windows to the soul”, they say. And call it metaphysical, but since then, I have always felt this spoke volumes about me. I have felt that this represents me in the way that, I must see everything. I must look past myself, and sometimes others, and see things the way they were intended to be.
There is a poem by John Ashbery that follows the title of this article and falls into this category. It states many things of which I identify with. And if, by any chance, my story becomes boring, lengthy, or convoluted, I plead you to go back to this poem and read it with great care, in the way that it inadvertently personifies my life.
Ashbery’s poems, above all, read with delicate beauty, even when confusing. Through further inspection, I have found personal meaning in its winding nature. Ashbery coils this poem around a central character, “I/me”, and its partner, “you”, as most poems do. But the way he approaches this is very interesting to me. And my interpretation is as follows: The “I” is me as I wish to see myself, and the “you” is my disease, my weakness—my blessing.
Shoot back to the beginning of this article. I’m very thin, and very small in all forms of the word—and I have scoliosis. But even this does not fully tell you who I am. So here’s an semi-embellished back-story for you, the reader.
My life, from its very inception, was marked by someone and something. This became further apparent in elementary school, when I was in gym, struggling to run and be physically active like all my friends, and all those I didn’t particularly like. I had no diagnosis, no paper to prove that I had a reason to be treated differently. Everyday, I achingly strained to finish my laps as quickly as possible. I was the girl everyone hated to wait for—“We wanna play games, hurry up!”—no matter my intention, still obviously slower than everyone else. Looking back, it’s a miracle I even survived elementary school gym. But it wasn’t until sixth grade that my pediatrician, equally concerned with my state as my mother, advised us to take a trip to St. Louis Children’s Hospital to diagnose my problem. It changed my life, in the least cliched meaning of the phrase. I was tested on by many gifted doctors for muscular dystrophy. They stuck two- to three-inch long needles in me, making me move and bend (and stifle tears) while measuring my contractions in various places. They did an EKG. And they also did a muscle biopsy—a surgical procedure that removes muscle tissue from a portion of the arm to be scrutinized. I still can see the faint scar on the upper left area of my arm.
I was a difficult one to figure out. We talked about my family history—how I could’ve possibly received this disease when no one else in my family had any physical problems, as all my sisters and brothers, and both my parents, were very active in sports. They settled on ”myofibrillar myopathy”, which entailed that both my parents had to be carriers of the exact same mutation to produce a child like me—and even then, it was a one in four chance. Figures, as I’m the fourth child.
But that wasn’t the end of the road. Not long after the diagnosis, my back began to curve slightly. My mother and I went to a doctor to question whether I should obtain a back brace for it. At this point, it was a very small curve—somewhere along twenty to thirty degrees. The doctor assurred that, I could get a brace if I wanted to, but it wasn’t necessaryit wouldn’t get much worse, if worse at all, as slight scoliosis is quite common.
Two and a half years later, I had a 65 degree curve on the top of my spine, and over 45-or-so degrees on the bottom. In order to preserve my vitals, like my lungs and my heart, I would have to have a spinal fusion. Luckily enough for me, I had some of the best doctors at St. Louis Children’s—top five in the nation for neurosurgery—working on me. I got my curve down to about thirty, although my rotation still kept me looking hunched over. Unluckily enough for me, what ensued was six months to a year of hell-ish recovery, including wearing a bright, white, plastic back brace to school everyday (you can assume the kind of comments I received). With muscular dystrophy, they had to be extra careful with me, and now with a rod in my back, I was further immobilized.
Nearly a year after that, I had another visit with my muscular dystrophy doctor—it had been four years since my first visit. Through further inspection, she told me of a newly discovered MD—something very rare that only a few of her patients, and equally few patients around the world, seemed to have in common. It turned out, I was four for four—I had contractures, finger flexibility, very small stature, and spinal rigidity. But through a strange twist of fate, after genetic testing sent to a lab in Emory University, I received a shocking discovery—I was proven negative for this gene mutation.
With a month to go until my follow-up visit regarding this information, I’ve pondered the meaning of all this.
In my wildest dreams as a child, I would not have imagined my life to turn out this way. I grew up cheering my sister and both my brothers on while they played competitive soccer—hearing my mom tell me about being in the top twenty at the Gymnastic Olympic Trials—and seeing my dad throw baseballs over a buildings.
But sometimes God has other plans for us. At least that’s what I have always believed.
I believe it is a rare find when others wish to fully understand. Because wishing to fully understand, would be wishing to be me.
And I don’t wholly blame people for not wanting this. If I were them—which is a whole other thing I also do not, yet, understand—I would more than likely feel the same way. I do, however, always feel a kicking sense of aggravation towards others that are ignorant, or full of misconceptions, and leave themselves to be. They are not acquainted with understanding outside their own body and emotions. So I sit here and say, “educate yourself”.
Above all pain, sadness, or longing, there is a level of thankfulness that I feel with my struggles and my disease. It is through being a public spectacle that I have been able to find an ever-fascinating truth. God has truly blessed me by giving me this—and this is not a lie I have tricked myself to believe. My disease is my comfort—it is my lens, it is my truth. It is the only thing I know. I find solace in my weakness and in my misunderstanding. In knowing that I am not physically wanted by the world (i.e, not painted over magazines or strewn over billboards), I know what true love is, and I know where my true strengths lie. I know that others listen to me because there is substance in what I say, and because they find me, myself, interesting—not my outer appearance.
Therefore, I find this to be a blessing in disguise. Much like Ashbery said:
I cannot ever think of me, I desire you
For a room in which the chairs ever
Have their backs turned to the light
Inflicted on the stone and paths, the real trees
That seem to shine at me through a lattice toward you.
If the wild light of this January day is true
I pledge me to be truthful unto you
Whom I cannot ever stop remembering.
Remembering to forgive. Remember to pass beyond you into the day
On the wings of the secret you will never know.
Taking me from myself, in the path
Which the pastel girth of the day has assigned to me.
So to those that might not understand, and genuinely wish to, fully: Do I ever find myself wanting this?
With His grace, I do.