04 January, 2012

Wet


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Wet
1.4.12

First blog of the new year. Let’s make it as close to not lousy as we can. That’s the kind of pep talk I give myself when I sit down to write. I should probably find a more motivating way of getting myself in the writing gear. Which reminds me (it really doesn’t, but I’m too lazy to write a segue), I have a reader from Latvia, according to the blog stat page that I look at obsessively. I think that’s the tops. I also think that’s super weird, and if you’re that Latvian reader, this is my hello and thank you to you. Those nine reads I got from France last week are pretty awesome too, and I’m not forgetting you, three reads from Russia. You guys are all great in whatever language you choose to say great in. I only know it in English because I’m American. And I really don’t have that much of a need to speak Latvian. Is that the language of Latvia? Let’s move on before I expose my ignorance even more.
I’m going to talk about a person thing here to start the year off. Some of my readers have been mailing me about how they more enjoy the more personal ones, so I will indulge them with the most personal story I can think of. Just a heads up; if this blog sucks, it’s not because the blog sucks, it’s because the stories of my personal life are super lame, which should tell me something, I suppose. 
I gigged at a big club in Philadelphia on New Year’s Eve this year. A great club that treats us very well. The joint was filled with drunk woo girls, sexually frustrated bros, bad shoes, and some friends of mine. The ticket price was seventy-five beans, and not only came with my band (the best in the business, by the way), but with an open bar and a buffet. A good deal all around, and a petri dish for mad drinking. Which, I suppose, is what the new year thing is all about. We played well, I think, and everyone seemed to have a good time. It was a good way for me to end a pretty shitty week. We’ll get back to that, but for now, I want to tell you that I stood up for the entire show. And that’s a big deal.
You cats and kittens who read me frequently know that I have bad legs. Lots of pain, lots of gimping around on a cane. The guys in my band are cool with my sitting down every night at shows, and I do. But this gig was special. And not because it was New Year’s Eve. Well, that was a small part of it. What was special about it was that this is likely the last New Year’s gig that my singer and best friend Dan and I will have together. He’s moving away from the scene into real job land. We’ve been playing together for twelve years (not as long in this band), and I wanted it to be special. So I stood up for three fifty minute sets.
That was part of the reason. I wanted to have a special gig with Dan in the way that we used to play before my legs got bad. They were always achy and shitty, but over the years, they’ve gotten bad. Very bad. Throwing up from pain every night kind of bad. Not being able to do what I want to do kind of bad. Disappointing people with saying, ‘I can’t do that tonight,’ kind of bad. I have an entire photo album of Dan and my first band where you can see photos of me, shirtless, playing bass up on tables and jumping around like a loon. Those days are gone, but for this New Year’s gig, I wanted to recapture that a little bit. So I played standing up. We’ll get back to my leg history in a minute. 
A super quick aside. I just now got this text from my sister: “Hey r u ok? Just wonderinf because I got a vm today from camden co correctional facility collect call WTF?! Lol” I’m not in prison, Nancy. I’m a free man. No worries.
Another reason why I wanted to stand up at the show is because of my band. I’m not a leader. I’m a doer. You tell me what to do, where to be, what to know; and I do it, know it, or am there. And I do it well. I expect nothing less from anyone else on any team I am a part of. Full or zero, that’s how I think of work. Because of my disability, this passed year has been made more difficult for the guys in my band. They have to move my amp. They have to make certain considerations that they’d normally not make were I able. I do as much as I can, and often times my guys tell me to stop and take it easy. I have a giant stone of guilt on my shoulders about that. They are considerate and kind. They are my friends. Jay, Q, Mike, sometimes Sam, and of course Dan. And whoever the horn guy is for that gig. We have two Chris’ so it’s safe to just say Chris and they’ll each think it is he. Easy win there. I wanted to show them they mean something to me, that I am willing to sell out, go all out, whatever euphemism plus out I can think of for them and the show. It is my way of showing appreciation for what they’ve done for me. It’s my thank you, my love for them for this year of difficulty to them. It’s my leading from the front by example. If Andy can do this, so can I. That’s my theory.
This all comes at great cost to me. The pain during, after, and still nearly a week later is unreasonable. But it’s worth it to have a slice of normal. It’s a taste of beauty the way beauty is unrecognizably enjoyed by those around me. I’ve taken a thousand words to set this up to make this point: I (and less I than some of those close to me) have gotten shit for this. The shittalkers have questioned the truth of my disability, the severity of it, and in turn, the legitimacy of it. Because of the way I play, the effort I put in, and the intensity and fortitude with which I handle the pain. I want to respond with anger, but I don’t. And this is why. (This is the very personal part mentioned earlier, and this blog is probably going to be longer than most. Top of the year, it’s OK, right?)
I can’t be angry because I guard how I really feel about my disability because I don’t want pity. Anyone who searches for pity in regard to anything is someone who will never suture the wound of their strife. Pity perpetuates the infection, and ever prevents it from healing. So I haven’t told most about the pain and I’ve tried to assimilate as strongly and actually as I can without drawing attention to the reality of it. It’s no one’s problem but my own, and I’d rather the elephant in the room be shrunken by jokes and off color humor than by analytical attention to the woe of it. Here is some of the analysis that has been missing. This’ll probably be the last time I talk about this, so I hope the naysayers are reading.
I have spina bifida. Admittedly, I have it as well as one can have it. My legs hurt. Bad. It’s like when you reach the top of a stretch when it begins to hurt. Theres a nice feeling while you’re stretching. That ‘ahh, that’s what I needed.’ Then, suddenly, ‘Jesus that’s awful. I ought to stop stretching before my body falls apart.’ That last part. That’s what my legs, spine, and hips feel like all the time. That’s not big news. That’s life. Life is pain and discomfort, and that’s no one’s problem but my own. Context, however, is an important ingredient in order to perfectly make the recipe of understanding. Here’s some context. When I was four or five, I wasn’t yet potty trained. I understood the concepts. I understood that this yellow nastiness comes out of this little thing between my legs that I seem to want to hold on to as if someone is going to come steal it, and that nastiness goes into that chair with a puddle in the middle. I got all that, but I still pissed while sleeping. I still pissed while playing. I still pissed while doing nothing. For no reason whatsoever. I still felt guilty and ashamed. I still do now thinking about it happening then. We started to see doctors who embarrassed and molested me with plastic hands and sharp tools. Bloody spine and penis, MRI’s and injections and plastic tubes shoved into out holes. They said spina bifida. And still, through my teens, I’d wake up wet with piss and shame in concert with legs that couldn’t hold me up while waiting five minutes in line for a cup of coffee or a high school lunchroom hot dog. And everyday, the legs get worse.
It had been a couple years (I’m thirty-one) since I’d woken up wet. Until last week. I haven’t told anyone, and now I’m telling you. Talk about trust, huh kids? You know before my therapist does. I woke up wet last week. It was a difficult week, to be fair, but I doubt that has much to do with it. I’ve been worried about money. My insurance dropped me for a payment that was three days late (don’t worry, mom; I took care of it), my best friend’s father has been in ill health, my grandmother is dying. Things like that. They take your mind into place that are very much not about you, and then your body becomes jealous of your mind and likes to remind you that you have a problem that most thirty-one year olds don’t have. Your body makes you wake up wet with piss and in pain. When you’re a thirty-one year old handicap in physical pain enough to prevent you from standing and you’re living with your parents who love you very much but likely don’t realize how severe the handicap is and you wake up soaked with piss, how do you react? What’s interesting about that question is twofold. One, no one has ever asked you that before. And two, you never have to consider the answer.
I’m ending the personal story time there. The point is this: I can’t be angry at the assumption that my handicap isn’t as severe as it actually is. I don’t share these types of stories with people. They don’t need to know them, and if certain naysayers wish to question the severity of my handicap, I can take a certain simple solace. This is the solace: they have to make assumptions because they have no idea what it’s like. And I am glad for that. That is a blessed ignorance. The Big Guy decided that my shoulders were broad enough to accept this, and not the other people around me. I’m glad they will never know about waking up wet or saying no to my girlfriend because of leg pain. I’m glad that people think I am a liar or a fake because that means they don’t understand how bad it is, and that means that I am doing a good job of protecting them from the nasty truth. If someone calls you a liar it is because what you’re saying seems unreasonable and illegitimate. It seems as if the truth must be opposite to what is being presented because what is being presented is contrary to the information the person is gathering. If I am being called a liar it means that my words cannot be believed as evidenced by my behavior. And that means I’m winning because the end goal is to protect those around me from what is actually true. Being called a liar is an interesting compliment. Still, it rubs me coarsely a little because I am a human being at my core and being understood is important to me. I suppose that contradicts everything I just said, but I think you cats and kittens are smart enough to follow my line.
There’s the personal story time that has been requested by some of you. (Happy Becks? I know you like the personal ones.) Yeah, I know; this one is very long, but it follows the logic because at the centre of the entire idea here is the sense of beauty and how we retain it despite the acids that try to corrode it away. Waking up wet, mortgaging two weeks of recovery for one night of standing while gigging, needing to sit down everywhere I go are all acids. But my beauty is still there, isn’t it kids. Especially if there are those shittalkers who think my handicap is more farce than reality. I’m going to stop now because, believe it or not, sharing that shit with you guys has been very emotionally exhausting. Stay beautiful, kids. 


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2 comments:

  1. Your stomach tenses. Eyes well up. Heart surges. That's what it feels like to be connected. You are so incredible. I'm grateful to have the opportunity to get a glimpse of you behind it all. That was incredibly beautiful. Just like you.

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  2. I admire the way you look at life living with a disability. It is almost impossible for an outsider to understand pain or feeling that they themselves do not deal with. My heart goes out to you and I respect you for living life to the fullest instead of trying to gain pity.

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