Now, this is a ribbon cutting of sorts. I would like to make this commitment to everyone:
I, Tanner Eastman, Solemnly do swear, from this point forward, to take on the full responsibility of providing each and every individual who reads my blogs with the most accurate, concise and up-to-date information on Ehlers-Danlos syndrome available. I vow to make this information user-friendly and easily accessible to anyone who wishes to read it. I will not stop at providing wide, overarching biological and physiological abstractions but will deconstruct things to their basic core to allow my readers the power to make decisions once more, for themselves.
- I will spend no less than one day per-blog.
- I will research each point I expand upon and provide references.
- I will take any criticism and advice you are willing to offer.
- I will help in any way I can.
- I will not let my EDS limit me. I have been given a gift, we all have. Mine is the ability to research and overcome my vices. To concentrate on me.
- I will help you find meaning in your suffering.
Okay, so now about me!
I have been through the craziest few years, but I have come out alive - barely! I have faced the stigma and prejudice from society, and have been disillusioned by the lack of funding research for connective tissue disorders generates. I find my jaw dropped at the treatment myself and others face. I am not ignorant enough to believe that simply by providing awareness acceptance is bound to follow; however, I recognize thats a logical step for most. What I see as the fundamental flaw within my current health care system (Canadian!) isn't merely a lack of general knowledge of connective tissue disorders, but a flaw in patient care; a flaw in instruction and ethics; a flaw in the human character.
Time and time again I read a comment from an EDS sufferer bashing a handful doctors and at the same time glorifying one who is considerate and 'understands'. This kind of thinking on our part utilizes the same flawed logic we vociferously point out and attack in their treatment of us. If we suggest that each doctor must be the same, must be tolerant and ambivalent, then we assume that a) everyones the same, b) those who aren't the same are odd, aggravating, and ultimately useless, c) we fortunate enough to catch on to this backwards flaw in the human condition are the elite and everyone else must change and are entirely unworthy of our time and worry, and d) we disengage ourselves from the problem altogether. It seems to me that this is a fundamental flow in post-modern thought: it's okay to question everything because everything is theoretically equal, but lets just question it, lets just stop there. I say no, we must engage! The reason we are isolated and alone is because we isolate ourselves! I mean society does the same thing because we are society, we are all one; we aren't separate entities. We all share similar characteristics and innate human traits because we are all a part of the same community, not apart form it.
Generally, humans are only able to empathize with that which they are familiar; whether that be a personal experience, or knowledge and second-hand experience of suffering and its consequences on every-day life. We who have been fortunate, for example, to not experience the wrecking damage of an earthquake can never fully empathize with those who have. Sure, on principle we feel sorry, but thats exactly that, its on principle! We cannot truly 'feel their pain' because 'their pain' is only 'their's' because it was given to them. It is a gift. It allows you to become a better person by expanding your own personal palate of empathetic judgments. EDS requires a person to have experienced it, or have experienced chronic pain or other injuries. The only problem with that is that they too have faced the same stigma we do, and therefore aren't wide-spread examples of understanding and change but only a part of us - a very important position.
Humans can only function by categorizing things. We categorize things by applying wide abstractions which encapsulate various sub-sets, individual definitions and characteristics. For instance, when your playing basketball or soccer you probably don't say: pass me the basketball,or, pass me the soccer ball; however, if you do, you definitely don't say pass me the round black and white ball with a hexagonal pattern and stitched indentations surrounding each shaded shape. These abstractions are useful because they allow us to make sense of the world in a way that doesn't confuse us with useless and arbitrary subsidiary information. Now, notice how I used the word 'useless'. That is important, because if we were playing soccer it would be useless to have to use such a lengthly command in order to acquire a small return. It's useless because its not useful in that specific situation; it's not useless permanently. In the same way EDS'ers face stigma because we translate facial feedback in others, say a grimace, or rolling of the eyes, as a judgment that supports an ingrained belief held that is permanent and unchanging and represents the same beliefs as all of society. When in reality, in that given situation, what it represents is useless and arbitrary subsidiary information. For example: would it be useful for a Doctor to 'care' about our suffering? Intuitive impulse dictates yes; however, we have learned first-hand the stinging aftermath intuitive impulse leaves in its wake. Caring would require the Doctor to spend what little time he had seeing you talking about your suffering. Learning about your disorder. It would require him to leave that room - at least, from the platform we stand firmly on asking all to learn and accept - research EDS, learn about it, tell people, and dramatically change himself in ways which maybe his palate of empathetic judgments doesn't allow him to because his experiences contraindicate such change. His Idea of empathy may be progressive, it may be incredibly pragmatic. He may see empathy and change as enabling a society to advance monetarily by increasing jobs and national output. If we cannot work, how can we help him in his quest? After thinking and searching all of this he would have little time to help other patients, don't you agree. Or, if he still had time to see him, maybe he would make the same 'mistakes' with them as he made with us, and they would require him to take similar measures, and so on, and so on. Now, I'm not saying at all that any of this is right, and I'm not saying that this is a concrete truth that cannot be unchanged, either. I'm only saying, from my perspective at this particular point in time, at 248 in the morning, June 20, 2011, that is how it looks to me. I think in order to eliminate stigma we need to eliminate things in all areas of life, not simply this specific definition with particularly rare characteristics in a distant subset beneath a wide over-arching abstraction we call Ehlers-Danlos syndrome.
All I can say is that we need to question everything. I think that with questioning, and unwavering love for all living things we can overcome and conquer absolutely anything in the world. I also think that concentrating efforts is a great thing, and although we, as EDS'ers tend to hate specializations - because that eliminates our cause for general knowledge - we must all contribute to our own causes - as long as they all benefit the whole. If we are able to say, well, look that guy is incredibly passionate about that, there must be some truth, lets step in his shoes and see how he sees things, then we are able to overcome anything. By looking through someone else's eyes, we are not unchanged; however, we do not become them, which I think is a fear that prevents people from abandoning their egocentric post and venturing out on sentry duty. Thinking like a racist would, doesn't make you a racist, it helps you understand human acceptance. Some of the greatest advances in the world have come about by studying the exact opposite thing, its antithesis. In order to better understand the brain we study the brains of those afflicted with some of the most terrifying and gruesome disorders. Disorders such as schizophrenia. A disorder that leaves one unable to make abstractions, incapable of any metaphoric or symbolic thought. The seemingly ideal candidate to spearhead an EDS awareness campaign; however, what we learn from this is that abstractions are important. They allow us to make form symbolic thought, to properly engage our world. Without which we may all be schizophrenic.
I am someone who starts something with a fervent passion to generalize, generalize, generalize and come out with a specific centralized idea. But once I start considering things my ADHD kicks in and I see this same lump of raw clay from hundreds of different perspectives and realize that specifying it wouldn't do me any good because I always end up with a new specification. There is no single road to truth, just as there is no single EDS. Even the most complicated problems have many solutions. What I think needs to happen is we need to become better people. Better people will result in less pain. Difficult task to set in front of me. Probably should've just written a scientific entry, not an existential one. But here goes.
In temporary and limited conclusion, the fundamental flaw of the human character is the inability to see beyond one's own abstractions into the... see, now I'm like thinking what if thats an evolutionary characteristic, what if that can be broken down and deconstructed into a more concrete and firm truth; am I letting down everyone who reads this, because it sure feels like it. What's the Serengeti like. How tall is a giraffe, really. Is there an average sized giraffe who feels inadequate - this is called flow of consciousness, super, super productive... I'm thinking about fight club now. I just read half of the word temporary and it made me think of the tempomandibular joint and now I'm thinking of dislocations and ebay. Okay, I'm going to concentrate. Abstractions. Okay, you can all help me out. Leave a comment and tell me your ideas. Maybe I can make some sense of this.
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