Last night at work, we admitted a gunshot wound to the head. As I went out to the waiting room to retrieve his parents and his sister, I wondered if he thought of their suffering. I wondered if they thought of his suffering that lead him to his final actions. There is nothing you can say when you experience people's sorrow on that level. These are the moments I no longer share with my husband. It is too much for him, and maybe too much for me. In some ways, it amazes me how I can stare at a human being bleeding uncontrollably, being intubated, or declining neurologically without flinching once. I can feel the lump in my throat form while watching a mother weep over her son who is being kept alive simple to harvest his organs (to help another person in great need). A stony face comes in handy, but it doesn't mean you are not aching inside or on a good day filled with divine joy.
Back to last night. When I am thinking of a few concepts, at the same time, sometimes they blend together. Like when I am thinking about our gunshot victim and genetic testing for autism or other "abnormal" genetic markers. I am curious about my own DNA. But, it is the same level of curiosity I would express towards taking apart a clock to see the functioning of the gears. We are complex machines. I am not a Burroughs fan (though Beats are great), I do like Robert Wyatt-- so let's say we are are complex, soft machines. I want to know what my gray matter looks like. I want to see a map of my thought process. Of your thought process. Of the thought process of a frog. HOWEVER, I do not want to change any of it. Before we can decide how to "help" someone live a fulfilling life, we need to define a fulfilling life.
All humans suffer. And, the degree of that suffering is relative. If the worse thing you have ever experienced is a hang nail. It is your worse experience. If someone else's worse experience was the new onset of MS, that would be their worse suffering. Yet neither person will understand how those situations effect the other, how debilitating or how motivating.
When I attended the IMFAR conference, I was conflicted about a handful of things. Research for knowledge sake is a beautiful thing. Understanding and growth accompany each other. But, I am not naive. I worked at a pharmacy for four years. Snake oil salesmen still exist. I wondered how long it would take for oxytocin nasal spray to hit the masses at close to $100 (if we're lucky) a pop. And, I also realized there were people in those rooms looking to identify autism genes with the hopes of obliterating them. I am not one of those people. Sure, I want to know the names of those genes. I want to see them. But, "mutations" has a negative connotation even if we are sitting in a room full of scientists. I realize mutations got us out of the water, but I consider myself a far cry from the Toxic Avenger. Okay, semantics is another entry completely. You get it-- I am not a mutant. If someone had identified my mutant genes and altered them, I would not be me. I like me. I've had some rough times, but not without purpose. I should mention that purpose may not always be event to me. It doesn't have to be. The human experience is composed of many taut strings called people and their lives. We fit together to form a plane with the tension of a tennis racket. Time is the ball. If one string is not taut or is removed-- the ball doesn't bounce to its full potential.
Here's where I try to exercise the theory of mind so often discussed. Some parents have children who are placed on the most severe end of the autism spectrum. They see what they perceive as their child's suffering daily. They themselves suffer. They want to help their child. They want to help themselves. It is all so slippery. Why is it okay to use behavior modification on my daughters who are labeled higher functioning but not okay to alter the genetic code of a non-verbal, self-harming individual? I don't have an answer for that. But, I should disclose I worked with a group called L'Arche even before my diagnosis. A different and what some call disabled life is NOT LESS of a life. I believe neuro-typical and physio-typical people just don't know how to integrate non-similarities into their life.
Then again, wading through the experience of life and death on a daily basis, I wonder how much is too much. How much has our technological ego enabled us to enable suffering. Quality versus quantity argument. The sick wolf leaving the pack to die argument. But, that sick wolf lived a life before its decline. It contributed, for better or for worse, to the character and livelihood of the pack. It made the pack what it is. How could we be so bold as to try to skip steps in our own chronology? How could we feel so confident to wrench the pen out of the hand writing our collective history? Sure, some people say it is time to write that history with a typewriter. Better yet, some of us are crazy enough to think we can write it on a Brother word processor!
So, again, back to last night. If someone told that man's parents when he was just an embryo in his mother's uterus they could detect his future mental health, would they take the test? If they were told it would prevent their child years of suffering through mental health issues and horrible self-inflicted death, would they? If the test was taken and they were told modification or a terminated pregnancy could take away the suffering of watching their child die in such a way, would they? What if that child would touch countless others with his humor, relative good nature, or kindness in spite his depression? What if he created masterpieces of art that would only be discovered after his untimely death? What if he had notebooks filled with theories that could help humanity? What would they do? Everyone suffers. Everyone has their own joy-- sometimes fleeting. Are we so bold and so brazen to think we can control and, more disturbingly, profit off of each extreme?
Whew... that is just one night's worth electricity jumping around my gray matter. I think I will decompress and do some laundry.
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