25 October, 2012

Whys And Hows or Doomed From The Start

presented by
Mystic Metals Body Jewelry

Whys And Hows
Doomed From The Start

Sometimes I like to take familiar lyrics and rephrase them and see if my friend Dan can figure out what I'm trying to say. It's a game we play which is better than our old game of sending gay pornographic photos to one another with the tag, 'you like this.' Yes, we're in our thirties now, and yes we're still very much children. The lyric I sent him today was this. Guess for me, kids. 'This particular domicile features a quantity of loose women.' See if you can guess the lyric and we can be like, 'Woo! We played a game! Aren't we awesome?' and I'll be like, 'Let's go get some roast beef sandwiches and curly fries!' and then you'll be like, 'I don't eat meat!' and I'll be like, 'Curly fries!' and then we'll laugh and laugh.

It's still spina bifida awareness month, so here is blog four about my life with spina bifida. I just learned too that there's a fifth Wednesday in October, so there may be a fifth SB blog. But we'll see if I actually post next week's on time. Unlike this one. Which is late. Anywho, I'm going to talk more about the affects SB has had on me, and how I may be unique to some who have SB or any chronic illness. Doesn't that sound exciting? Curly fries!

In a sort of continuation of last week's blog (which if you haven't read, shame on you) I'd like to talk about how hard I've taken everything. That may be an overstatement, but my beautiful and wonderful, love of my life girlfriend said something interesting the other day that sparked a thought. She says interesting things often, which is awesome. I'd suggest you all get a girlfriend smarter than you because you learn neat shit every day. She said to me, and I'm paraphrasing, that there are likely many, many folks with spina bifida who take the burden of living with it less harshly than I do. This is by no means a commentary on my attitude toward it. I'm not a whiney asshat about it, though I can be at times. But during the process of the diagnosis and treatment and testing, I adopted willingly the whole of the responsibility for it, thereby developing an inordinate mound of guilt and a hard carapace to protect myself from others' interest and concern, and to protect others from my often harsh perception and attitude toward myself and my body.

How did I do that exactly. Well, I am sure there have been a wealth of examples from which to place as evidence of my shell building. This story comes to mind. As I said last week, the earliest indication that something was not quite right with me and my development was that I'd piss myself. I couldn't tell when I had to go, so I'd often be sleeping or playing and suddenly, piss in the jeans. Or OshKosk B'gosh overalls that my mom put me in. Easy for lift and transport. When in school, this was a harrowing experiment in social acceptance and the tolerance of overly inquisitive and assumptive children. We needed a plan so that my soul wasn't entirely crushed by points and teases. This plan was simple. The committee was myself, my mother, my doctors, and my teachers. (I remember specifically my third grade teacher Ms. Landis being especially helpful and sensitive toward it. A great woman.) I would have a digital watch, never a calculator watch though I wanted one, and every thirty or forty minutes or so it would beep. When that happened, I would go to the bathroom and try to piss. The idea was that I wouldn't piss myself if there was nothing in my bladder to piss out. Simple. Throughout the day the watch would beep, I would leave without mention and return to my desk and continue adding numbers incorrectly, spelling poorly, or cutting construction paper in very not straight lines. It worked to the point that I rarely pissed myself at school, but it didn't work to the point that the inquisitive and assumptive children began to ask what the deal was with the watch, and I didn't know what to tell them. The truth and be outed as something different, a child of appropriate age to piss normally who for some as yet unknown reason could not? Or a lie, some fanciful story about where I go and what I do for those couple of minutes, like a secret spy who has a direly important mission to accomplish every thirty or forty minutes? Neither protected me, but at least I didn't have piss all over me.

It was around the same time as the watch experiment that I was visiting the neurologists more frequently. Tests and tests and tests whose results seemed to baffle the smart, white coated men and women. I remember after one particular test, an EMG I believe, my folks and I sat down with a doctor woman and she said some things I overheard which drastically changed my perception.

First, what's an EMG. This thing is straight up Inquisition, though I try to avoid the phase 'straight up.' Electromyography is the smart person word for EMG, and this is how it works, taken directly from the Wikipedia entry. "To perform intramuscular EMG, a needle electrode or a needle containing two fine-wire electrodes is inserted through the skin into the muscle tissue. A trained professional (such as a neurologist, physiatrist, chiropractor, or physical therapist) observes the electrical activity while inserting the electrode." Where does that electrical stimulus come from you ask? A power source connected to the needle electrodes. Read; car battery. So they take these needles with electricity running through them and stick them between your muscles, say between triceps or calves, and then juice up the power. Then you flex the muscle with the powered needle in it and the battery needle thing makes a graph. This tells the smart people things about the relationship between your muscles and your nerves.

So the broad does this Ben Franklin type thing (it was actually Francesco Redi in 1666 who discovered this relationship, for those scoring at home), and then we all get together in her sterile, paper covered furniture office to talk about it. When you're six, seven, eight years old, you really don't have much of a presence in these types of conversations. So I hear her ask my folks if anyone else in our family has experienced the type of leg pain, piss pants fun that I have. Their answer was no.

Who cares. I'm the only one in the family who can't walk properly and pisses himself. There's always one, right? But this little seed germinated over the years in my mind to read 'he is different and his difference has not been created by an outside means. No one made him like this. His is just this.' A quick aside, she's also the one who said to my folks while I was sitting there that I'd be in a wheelchair by age thirty. I made it to thirty-two. That was sure a long twenty-five years of waiting. Take that, doctor lady whose name I don't know. Back to the statement seed thing. Her saying that to me (well, to my folks while I was in earshot) started as a seed. An inconsequential and tiny thing which had a moment to die and go the way of a million seeds during autumn. Instead, I nurtured it and gave it what it needed to sprout and grow into a mighty and imposing vine. An ivy plant living strong and choking that which it climbs. And I did nurture it with hate and anger and bitterness, feeding it every day with whys and hows. I wasn't ok with the vine that I put there, nor was I ok with the whys and the hows.

Sure, the whys and hows can be answered with science. You can tell me about the incomplete closing of the embryonic neural tube, about the incomplete fusing of the vertebrae where the pain starts and the spinal cord is wrapped up and lost in the chasms of the spinal column. That's science which is the definition of why and how. But that's not the answer to the why and how. The why and how I am looking for and have found is not enough for me. Spina bifida just happens. Yes, there's debate and argument over the genetic disposition to it, sickness and fever during pregnancy, certain drugs taken during pregnancy, low levels of folic acid during pregnancy, and the like contributing to the embryonic neural tube improperly closing. However, spina bifida has already happened during the first month, usually within the first couple weeks of pregnancy allowing little time for the mother to take any kind of preventative action since she's often unaware that she's cooking up a baby anyway. Doomed from the start.

My why and how is about who holds responsibility for the imperfect body. And that is a question with no answer. I can only point to myself, and because of it, I guard myself from the responsibility that others may want to take onto themselves. No one is at fault, and I am not at all ok with that. Sounds grim, I know, but it really isn't. We are a species of whys and hows. We are a species who demands to know of the origins, and in origin we can solely rest responsibility on one thing. This is the start, and from this all of the repercussions have resounded. It makes us feel safe to know these things, but sometimes there are no origins and that safety is a nonexistent ghost we continue to chase until we acquiesce to our own exhaustion and rest that responsibility of origin onto something that may not bear any at all. The residual challenges of things. I didn't wax on my initial thesis at all, did I. This month's rants have been a little... ranty and less cohesive. I'll try harder. Again, learn about this shit. Go to sbaa.org and get good and learned up. It's important to know where a stranger's beauty comes from. Stay beautiful, kids.

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