Ain't that pretty, but I gotta lot ta say.

This is how I know you're listening.

Stories from Trees: Volume II

I posted this on an article-based forum called divinecaroline.com, in the Faith and Inspirations section. Just felt like posting it here incase no one comments on it.. just for memory's sake. :)
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On first glance at seeing me, I'd suppose the majority does not look twice. There are, however, those that stare (and not for the most admirable of reasons), or those that encounter me based on what they see. I'm different, but not one puffed up by my difference (or indifference). And don't misread me, this statement isn't designed to encourage pity-- much the opposite, it's simply the truth. Something, as I have matured, that I have learned to look past. What you would see, doing a quick scan over my physical features, are a few "odd" things that stand out, good or bad: my thinness, my shortness, my scoliosis, and my eyes. I don't know if these 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 most of the compliments I received pertained to my big eyes. My mom called them "Frances eyes", in reference to the children's book character in "Bedtime for Frances" that my parents read to me. At that time, my body was not yet the peculiarity 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 was under divine intention. 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 meant to be.



There is a poem by John Ashbery which follows the title of this article ("A Blessing in Disguise") 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 signifies my message.

Ashbery's poems, above all, read with delicate beauty, even when confusing. Through greater observation, I have found true meaning in it. 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 vainly wish to see myself, separated from my problems--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, or what, I am. So here's a semi-embellished backstory for you, the reader.


My life, from its very inception, was marked by someone or something. This became much more apparent in elementary school, when I was in gym, struggling to run and be physically active like all my friends, and even 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. I just wanted to play, and run the same way, with the same speed, with the same vitality. Looking at the situation with fresh eyes, it's a miracle I even survived elementary school gym. But it wasn't until 6th 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 2-to-3-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 body to be scrutinized. I still can see the faint scar on the upper-left area of my arm.

I'd say 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 20 to 30 degrees. The doctor assured that I could get a brace if I wanted to, but it wasn't necessary--it wouldn't get much worse, if worse at all, as slight scoliosis is quite common.

2 and a half years later, I had a 65 degree curve on the top of my spine, and over 40 degrees on the bottom. In order to preserve my vitals (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 5 in the nation for neurosurgery--working on me. I got my curve down to about 30, although my rotation still kept me looking hunched over. Unluckily enough for me, what ensued was 6 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 4 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 was sent to a lab at Emory University), I received a somewhat 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 20 at the Gymnastic Olympic Trials--and knowing my dad threw baseballs over buildings.

But sometimes God has other plans for us. At least that's what I've 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 an entirely different 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 and leave themselves to be. Those who are not acquainted with understanding outside their own body and emotions. Those who see me either underestimate the complexity of my problems because I'm not paralyzed, or in a wheelchair, or they dramatize it to be so emotionally crippling that they cannot understand how I constantly hope. So I sit here, and write, and say, "educate yourself": because I am lucky. I no longer allow myself to feel disgrace with who I am.

Above all pain, sadness, or longing, there is an integral 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 double-minded lie I have tricked myself to believe. This is not yet another story that those who read on, disparagingly, use, most of all, against themselves--and I am not, conveniently, that stereotype you need, for your need to gleefully rip apart. I know what music is--I play it. I know what literature is, because I read it. And I know the skeptic's wavering figures. I've searched inside the depths of it all, bouncing back and forth for years, and while it reflects a dimension of meaning--nothing speaks quite as fluently as this. Because this is what you must know: That 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 what is physically wanted by the world, I know what real love is, and I know where my true strengths lie--I don't have rubble to sift or dream through. 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. There really are no smiling veils the world can offer me, and in that, I am eternally thankful.



Therefore, 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?

Absolutely.

With His grace, I do.

Stories from Trees

These words speak many things of me and my life. They've kind of started me thinking.. For a while now, I've wanted to write a memoir (if I'm even old enough to call it that) or some kind of autobiography about, well, me--my struggles.
This song puts into words many things I feel on a daily basis. I feel trapped in a body that I did not choose to be in. While I'm not framed in a wheelchair, it's easy to see me as normal--that, minus a few bobbles here and there, I am genuinely average. But that's where I feel trapped. "Tortured [in] all I cannot do"--and what others think I can. I have to see everything magnified, ten thousand upon ten thousand. I cannot trick myself, and my body won't let me. Everytime I try to explain my disease and problems, others give me a kind of look that speaks volumes. One that truly does not understand what I'm saying, or what I mean when I say, "It's complicated"--because if you have a disease, it's supposed to come in a box. It's supposed to be easily understood (in the symptom-finding-match-up kind of way) and usually, it seems to be. Others tend to forget others' problems. We are taught by the world to only understand ourselves.
And The media has no problem finding unusual and effectively rare diseases to showcase to the world--(and God bless them, for I truly feel for these people)--but they seem to pass up ever showcasing the small, yet similarly effective problems. To me, this has caused a frenzy of misunderstanding about disabled people. They are seen as a phenomenon, something to marvel at, but not to fully understand. What outsiders find themselves wanting is that feeling of awe--to discover something, to feel like they know something, and to finally feel gratitude for their own normal state--but it is a rare find when they wish to fully understand. Because wishing to fully understand, would be wishing to be me.
And I don't wholely (sp?) blame people for not wanting this. If I were them--which is a whole other thing I also do not 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 and wish themselves to be. They are not acquainted with understanding outside their own body and emotions.
There is a level of thankfulness, however, that I feel with my struggles and my disease. It is through being a public spectacle (in many different ways, I guess you could say) 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 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 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.

John Ashbery, in his poem, "A Blessing in Disguise", highlights several sides of my life that I myself have never been able to write, nor say. And he says this:

Yes, they are alive and can have those colors,
But I, in my soul, am alive too.
I feel I must sing and dance, to tell
Of this in a way, that knowing you may be drawn to me.
And I sing amid despair and isolation
Of the chance to know you, to sing of me
Which are you. You see,
You hold me up to the light in a way
I should never have expected, or suspected, perhaps
Because you always tell me I am you,
And right. The great spruces loom.
I am yours to die with, to desire.
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.
I prefer “you” in the plural, I want “you”
You must come to me, all golden and place
Like the dew and the air.
And then I start getting this feeling of exaltation.

And I fear that in saying what it fully means to me, I would completely rob its magic.