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:
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.
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