Sep 10, 2008 04:32
" If the radiance of a thousand suns were to burst at once into the sky, that would be like the splendor of the mighty one. Now I am become Death, the destroyer of worlds. "
On September 1, 2008, the Discovery Channel aired an episode from the television series Mystery ER, documenting the first 2 years of my ongoing experience with the immune system disorder of which i've since been diagnosed. As an experience, being interviewed and shot on camera was far more low-toned than I had expected. Months prior to the airing, a television crew flew from California to Illinois to set up a small area within a doctor's office, the same doctor whom officially diagnosed me of my condition. My mother, far more concerned with our appearance on camera than I, adamantly insisted that my hair be trimmed from its shaggy fluff to a neat and slick style (more so giving me the appearance of a young and nerdy Clark Kent). Donning a gray hued sweater over a thin white undershirt with a peeking collar, and a pair of freshly washed jeans, I resembled a low-brow yuppie rather than the middle-American atmosphere the filmmakers sought. My mother, wanting a less traditional wardrobe, dressed in a very oriental-styled crimson dress top and loosely fitted slacks. As my mother and I entered the seemingly desolate building constructed on a long road out in the middle of nowhere, I was introduced to the woman heading the project. Surprisingly, our first moment of introduction was quieted by the coincidence that she and I wore nigh the exact same outfit, causing a snicker among us all. Not surprisingly, the moment she opened her mouth came a California tone I somewhat expected, chattering endlessly of the cooler weather of the windy city, in comparison to what she was accustomed to. Without any glamour or Hollywood sets, they sat me down in a chair within a circle of tape. A single fluorescent spotlight shone down upon me from the top of the expensive camera as the room was mostly silent. Uncomfortable with the silence and the bright light illuminating me within an otherwise pitch black surrounding, the woman sat opposite of me in a similar seat as my own with her back to the cameraman, tipping a pair of spectacles down her small nose while she held a stack of papers in her lap. I maintained a straight posture in my seat and squinted my eyes from the light, my focus ever-so drifting as it averted from the camera to the shadowed walls surrounding us, nothing of interest upon the walls, I expected nothing more from a professional doctor nearing old age. Finally, the woman cleared her throat and emitted a monotone, pseudo-interested tone of voice with each set of questions she asked me in regards to my feelings. Remembering to repeat the question which I was asked, I answered each and every one as clearly as I could, each time trying to convey straight to the point. My mind, ever the wanderer, has never likened to toning down my vocabulary to speak my mind on a whim, and yet I composed myself enough to give them what they wanted to hear.
Our initial contract with the filmmakers of Mystery ER had included with it a claim which said both my mother and I were paid for giving my story--which we were not. My mother, after reading the contract, immediately insisted they revamp the contract to say otherwise, which they did. My opinion of the story in entirety was, and is, nothing short of entangled. After having spent 2 years worth of explaining myself and my condition to peers and strangers, I find myself initially biting my tongue whenever asked to speak of it, my mind imploring me to find a simple and uninterested way of going about it, but there is none. When one is diagnosed with a condition ranging in the chances of getting it being 2 in 200,000, there is no simple way of going about it. And so, heeding and taking the advice of my mother, I bite the bullet and do my best in explaining my experience to others, for if nothing else, it spreads attention and word of my condition, which may one day help others in studying the disease and hopefully one day curing others who may also have it. In truth, there are countless others in the world which have ailments far more severe than I, which I will forever respect and acknowledge, but one of the greatest challenges of my life up to this point has been learning to accept what has happened and live my life accordingly. A little more than two years ago, I was absolutely determined that part of becoming the very best of who I am was to push myself physically, to reach my physical peak by religiously sticking to an exercise routine of working the muscles in my body to further build and tone them. Although I have always endeared a poet's lifestyle of finding a quiet and comfortable spot and reading and writing, I have always loved physicality. My physical stature makes proof of it, a very broad and strong build. In my high school days, I partnered and lifted with some of the best physical specimens of bodybuilding that there were, and though I would never say I was in the category of being one of the very best, I held my own. In a bitter sense of irony, part of the disorder which i've lived with now for over two years has brought with it strong bouts of arthritic pains. I've not been able to lift or exercise comfortably in a very long time, albeit I still have a portion of the strength I was determined for. Thus, my focus has shifted from my body to my mind, and now my determination has shifted towards my progression as a creative writer.
I am now, and have been for going on and over a year, involved with someone in my eyes nothing short of incredible. She is the self-proclaimed adept bun-bun. For two years her and I conversed normally as any two people would, we spoke of her college classes and writing, something both her and I have found deep kinship in. I've never read the writing of a peer i've wanted so much to be a part of, and even back then, I heartily encouraged her to continue on writing and even on occasion gave my opinion and suggestions. Chemistry is a wondrous prospect, especially in terms of the chemistry between two individuals. Aside from situations out of our hands, we've had never a reason to quarrel or disagree, which i've found to be absolutely amazing. I have never before involved myself with someone so understanding of my behavior and thought-process, nor have I ever known anyone who i've been so fascinated with in understanding them, myself. Aside from my best friends, she was the one and only person to take time out of her own day to come and visit me in the hospital, a gesture of kindness that I will never in my life forget, or take for granted. In the mornings, when I awaken face-down and nestled into small pillows with the rising sun on my back permeating the old window panes, the pain in my body takes a perch on the back-burner when my thoughts roam to her. Shifting myself against the mussed sheets beneath me, I rise up from my arms to my knees and tentatively brush a hand across my face, often swiping a few disheveled strands from my green eyes, and the silent image of her smile in my mind, I shit you not, brings a smile to my own face capable of conquering any pain racking my limbs. To give her a rose feels, to me, like bringing a piece of bronze to a golden treasure. She has been by my side now for as long as we have been in each other's lives, and I see myself by her side for a very, very long time. I love you.
Finally, the day came when my appearance on television aired. Unbeknownst to me, my beloved's mother watched it with her cousin, my cousin living in MA watched it, and a small group of friends assembled to watch it at my comrades residence. I had been looking forward to seeing everyone again more than I had seeing myself on television, before then I hadn't seen both my crony and my comrade in quite some time, but they all came together to watch the event. Needless to say, I was not impressed with the actor they'd hired to portray me and reenact my experience. Where i'm about 5'8" or so, the actor had been clearly about over 6'0", making him look very much a cave troll. I nearly expected Boromir to leap into the fray and swipe at the imposter with a sword (but alas, it did not happen). My mother, expectedly, became rather self-conscious of her own looks when she saw the woman they used to portray her, which is why I would guess she downed a few shots of tequila and a few glasses of beer before watching it. My own concern came from when I was asked to pose without my shirt or my pants in front of the camera so that they could see the purpura (the bleeding beneath my skin) on film. I had been worried how they would show it, considering I had been practically naked, but oddly enough, they gave swooping shots of my upper frame and seemed more concerned with showing my triceps than the actual bleeding, so thanks to the Discovery Channel for deciding to show the muscles off on television (my close friends joke that it looks more as if i'm posing like a wrestler). All in all, it wasn't as bad as I expected it, and there was tasteful editing and production value in my episode of Mystery ER, and so marks my first appearance on actual television, and not just the indie garage movies my friends and I made on video camera.
i wrote this a day or so back, but felt too tired to post it. seeing as i just woke up for a drink, i decided to post it before diving back into bed. i'll do my best in updating this further on. thanks to any readers still out there.
Alas, now I bask in the sub-consciousness of my slumber.