17 October, 2012

Can You Feel This?




presented by
Mystic Metals Body Jewelry





Can You Feel This?
10.17.12



Tired and broke, kids. I apologize that the blogs have been a little late recently. See, the blogs cost me a little bit of money to produce, and I don't make any money on the blogs. I've also been in a stall with my flaky band, so I haven't been making any money. I've been pretty frustrated and angry. On the bright side of things, I saw Wall-E for the first time the other day and I enjoyed it. Despite the obnoxious liberal overtones. But you have to expect that in a kids' movie nowadays. And, you know; Jim Cameron films too.

A word to my mom. You may not like some of the contents of this blog. Just a heads up. Why won't my mom like this blog you ask? Well, it's still spina bifida awareness month, so this blog is going to continue with my perceptions about living with the birth defect. Except this one isn't going to be as positive or cheery as some of the other times I've talked about it. So mom, don't get salty, please; and I love you.

I talk about spina bifida frequently, and since this month we're supposed to be aware of it, October's blogs are all about it. I also talk as if you kids already know that I have it, but some of you cats and kittens may not have a sense of how we learned about it. So I'm going to touch on that for a moment and talk about some of the other life things that my birth defect interrupts.

I pissed the bed. A lot. And not in that waking up after drinking like a madman, covered in piss and thinking to yourself, 'Aw, shit. I'm thirty years old. I need to make life changes.' Not that I know anyone who has done that. (Clear throat) No, I'm talking about when I was wee. When I was little, my beautiful and patient mother had a shit hard time of potty training me. It's not because I was resistant to the idea, or because I didn't understand the concept. It was something else that neither of us understood. I continued to age, waking up covered in piss every night, playing outside with piss running down my leg, not understanding why I couldn't get my little weewee to the toilet to put the piss in it. Four years old, five, six. There's something wrong with this kid, we thought. Well, I say 'we' but I think I wasn't really putting constructive input into it so much as I was trying to collect all the limbs to Voltron. I only ever had a leg and an arm. This was also eerily accompanied with aching legs and hips, pain in the spine, some numbness and cramps. So off to the doctor. The family doctor. The guy who looked like George Michael. Perin his name was, and he was the first guy in a white coat to stick is finger in my ass.

I don't have a lot of childhood memories. My memories are like half developed Polaroid prints. Some ideas here and there, but I have a terrible memory on the whole. This memory, seeing Dr. Perin for the first time, is my first viscerally clear memory. I was five or six years old, he had me strip naked and lie on the paper covered furniture, and he examined me. That was the first time I experienced a 'can you feel this' test. He took the back end of a wooden stick swab and dragged it over my body, asking me where it hurt more than other places. He focused on my spine and hips and legs. Then he fingered around in my ass, pulled off his gloves, and sent us to Children's Hospital of Philadelphia.

This is when I learned the word neurology. To a five or six year old, the simple definition was a guy finding out why you hurt. That guy was Dr. Brill. An older man, probably dead now, with a constant five o'clock shadow, white receding hair, long wrinkled fingers, and a musk of spiced cologne that comes from a bottle with a ship on it. I disliked him at the time, and hate him now. Starting with the 'can you feel this' test except this time he had a tool designed specifically for it. It was a surgical steel handle with a fulcrum and an axle on the end through which a wheel with sharp spines around its circumference spun freely. Think of a spoked wheel where the ends of the spokes are free and sharp. Dr. Brill used this thing on every inch of my body many, many times. Some blood, quite a bit of pain, and scads of shame and embarrassment. This was the mid eighties, probably '86, '87, '88 area, so when we were sent to have MRI's, that shit sounded like science fiction. And it nearly was. If you think about it, human testing with the MRI machine was still happening in the late seventies, and the patent wasn't acquired until 1979 (even though the theoretical technology was discovered in the 30's). In the medical timeline, this was brand new technology. So they drugged me up (because I wouldn't get into the scary tube sober), and took photos of my brain and spine. MRI's are a bit different now. Then, I remember their being very loud, very cold, and very long. (Like this blog is getting to be.)

Flash forward to my teens. I'm still pissing the bed. I'm still in leg pain. I'm still in and out of hospitals for tests and treatments, nearly every weekend. Life became hospitals and treatments. Everything else was inconsequential. Schoolwork, relationships, hobbies. Didn't matter. I was focused on photos of my brain, of which I have more than photos of my face. I was focused on epidural injections, EMG tests, myelograms. A quick aside here worth telling. We tried a method to stop the bed piss once and for all. Spoiler: It didn't work. I don't remember what it was called, but the process was this. An electronic device was clipped to my shirt near my head. Attached to it a wire which lead to another device attached to my pants. When the lead on my pants sensed moisture, the shirt device would bellow an electronic noise that could wake the seven trumpeters of the apocalypse. I'd wake. My parents would wake. And I would have to change my clothes and sheets without my folks' help as they watched. For each day I woke up dry, I'd get a gold star on the calendar. After a full month of stars, the calendar is sent to the company who then sends back a pillow shaped like their mascot, a yellow star similar to an invincibility star in Super Mario Brothers. We sent my calendar after many, many, many months of trying and never got the star. Talk about a soul destroying process exemplifying the futility of hard work and trust. I laugh about it now, but Jesus. If I knew the name of the company, I'd send them a sternly worded letter.

Anywho, Dr. Brill was the guy who first said spina bifida. There was a woman neurologist in there somewhere too whose name escapes me who said I'd be in a chair by thirty years old. (I was about six at the time.) Surgeries, tests, embarrassing naked things with old men and nurses. Catheter bladder stretching was another method to get me to stop the night piss. That's when they fished a tube up my dickhole and filled it with water until my bladder was stretched and I couldn't hold any more. I think my mom fainted over that one. Too many tests to fit into this little 1500 word rant. But it continued on and on and on, and on even still when I can set some of the anger aside and head back to the neurologists. But that's the residual. The anger, the depression, the sense of self, the guilt of putting my folks through this; forcing them to make horrendous decisions that no parent ought to make. Go ahead; send your kid to a frightening old man whom you know will hurt your little baby. Can you do it? For the good of... What? Could you send your little one to a place that will be burned into his mind for all of forever after hearing him plead not to go? This spina bifida journey has affected more than just my ability to piss properly. Which I can do now, thanks for asking. Next week we'll talk more about that, and you can be thankful that it'll be the last spina bifida blog until next October.

But sharing these things is important for a number of reasons. I think that after reading about my life with the birth defect, you cats and kittens can more closely see the value in my mantra of beauty. If I can stay beautiful through my spina bifida, we can find the beauty in you and that stranger and that stranger and that stranger too. Simple enough, right? Ignoring that unintentional rhyme in that sentence, I think you can see the point. As much as Dr. Brill was a (unintentional, likely) beauty thief, he left some for me. I have to nurture that small plant potted in an old boot (Wall-E comes back for you there), but don't we all? Stay beautiful, kids.

Spina Bifida Association of America




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