It's hard to believe its been a week since I had my first brain surgery. I saw some video of me, just before I went in, a bit doped up and talking to Trudi. I have this sneaking, bad feeling that I'm gathering some last moments before I die. It's hard to block out morbid thoughts like this--it's like the water that builds up around my foundation when we get hit with a Lousiville rain flash--it always finds its way in.
In the video I joked about how the doctors kept coming in and asking me who the president was every ten minutes. Where am I? They asked me. Who is the president? "Was this a red-state or what?" I asked Trudi. "I can't tell if they're pissed about this or not. Are they blaming me? Are they expecting an apology? Or are they waiting for the fucker to be impeached? Tell them not to ask me anymore."
I wasn't trying to be funny. I was just trying to say whatever things in my mind that I could. I wanted to use my brain in whatever way it would work, and I didn't care what came out of it. Cause for the first time I was afraid I might not get to use it anymore. If they said, what's two plus two-I would have said four but four plus four is eight, so there's four, there's eight, and then there's sixteen--so which were you interested in again?
It's all becoming normal now, though. I keep coming back to the same conversation Trudi and I had in the car just before we got the results. A brain tumor will change you--a brain tumor will not change you. It's two in the morning, and things are the same. I have a bottle of Percocets that I can keep taking. What's the point though? My eyes start flipping out and I can't write and I feel too numb to even notice I'm feeling good. But it's so easy just to pop one, to pop one, but when I don't?
Everything just slows down. Everything is just normal. I have a brain tumor, but I haven't changed, and that is just depressing. I've hit the bad news lotto here, and I'm supposed to get something in return--magic. I'm guaranteed a magic life, a magic sequence of events. That's why they make movies about this stuff and write books about it. It's un-boring. Right?
Well, it started that way. I thought I was going to die, and things started flying real quick. The hospital, the surgery, parental visitations. All these things were way, way out of the norm. And hard not to feel special just then.
But now I'm home. I'm writing and anxious about it and how is that new? I still struggle in the same ways--I'm tired of my voice, tired of having nothing to say, tired of my jealousy, tired of my desire for recognition. When will I transcend all that? Isn't that what brain tumors are for? To gift me some magic writing power? To make everything I think and write suddenly miraculous and instantly everyone should care what I think? So when does that start?
I'm going to take a perc now.
Sometime during the first week, Trudi said, "Good--now you have an excuse to get rid of that editor voice in your head and just write."
"What?" I said. This was madness. "Are you crazy? I can't do that." Indeed, that little editor demon took some speed. His balls are on fire and he won't let a single word, a single connotation pass. (I never said he was particularly smart--he makes lots of errors, especially technical stuff. It's not my fault, this barrage of errors you may find here. Clearly, sue him.)
But tonight? I've passed him a rouffie. I have no intention of fondling him, don't worry. But I might kick him.
My head scar is itchy. I want to pull off the dead skin and eat it.
I was afraid of going back in for open skull surgery. Now I want it. I want open skull, I want chemo, radiation. I want them to make me as sick as they can. I want to be laid out on the table. I do not know why I want this. I probably only want it right now at two am. Ask me tomorrow and I'll tell them all to fuck off.
Why do I want this? Because I want what I've always wanted--to feel special. (A brain tumor will not change you.) Tumors are pretty special. Chemo is special. Open skull surgery is special. The pain, is beyond special. I'm afraid of it. I hate pain. I'm a pain pussy.
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I just wrote something extended, and I guess I deleted it by accident, so the abridged wisbit version is:
ReplyDeleteI'm pretty certain you have always been special. I honestly don't think I only think so because you're mine. It's painful to think that you haven't felt so and also painful to think that you imagine that you only feel so now because of the golfball.
I think part of what you (we) are coping with is this wild, unbelievable outpouring of love and generosity from everyone we know, which we couldn't possibly have predicted and can't completely understand and parse. Some of it is I think just that we horrendously underestimate the world's willingness to give love and compassion, tout simple; some of it is that you wonder if being ill (especially with something rare and painful) actually does MAKE you rare (if it doesn't, goes the logic, then what right to I have to all this love?); and some of it is that you were always loved but everyone has stopped putting off saying so (i.e. that seeing pain somehow liberates our quiet, polite tongues.)
Anyway, the wisbit is that I think you have always been this special, this loved, and that that has nothing to do with being sick. People are just saying it more often now.
The people who love Only when faced with pain are those who watch soap operas, read Chicken Soup for the Soul, etc. And that obviously isn't your audience.
ReplyDeleteI think you once said that from childhood you felt different from the people around you. Perhaps you knew you were special, but being unusual wasn't valued, so you set that feeling aside and ignored it. In any event, your particularity, your singularity have been evident, valuable and lovable to us from first we met. We don't these things often enough-life is busy and it seems weird--we wait for a crisis, which can make it seem that we didn't feel them before the crisis hit. But we did and do.
ReplyDeleteThe love and caring has always been there, It just is amazing that we don't see it until life has a way of throwing it in our face. It is saying-"Look what you have been missing" just make sure you hold on to it. It is human nature to keep the distance, don't wander to far from it.
ReplyDeleteBeen there! and on my way again. Think of it this way, "MANY ARE CALLED BUT FEW ARE CHOSEN".
ReplyDeleteBeleive it or not everyone learns from the Chosen Ones. Being blessed is how I look at it.
...this has nothing to do with you, but at this same time when this was happening to you I had just given birth to a child, which was a great relief to me, I don't think I had ever been happier, but I received a violent expectorant which was nothing, a Chinese doctor, a thousand and one gifts of any nature, q-tips, (not to talk about what people call here the vajayjay,) some intense surgery happened to my aunt, both of my child's then living great-grandmothers died, a cousin was also born. Sorry to tell you because I know there are a hundred other people who've had a series of like events.
ReplyDeleteA lot of what you are saying in here is so utterly personal, I am sad to miss the references--- The way a phrases echo based on what has been said to us and our desires or need to understand; in contrast, I wanting to love, wanting to have passion, for life, having to feel grateful and blessed etc. I don't want what I wanted yesterday in general, happy to have a body at all, happy to be able to wash my feet and not have to trouble people intimately; for me it is a great today. But to others I understand it to be a great joy; and I pray for you that the divine being of heaven will bring to you what he can as you are given and also seek, (not sick or psyche) unless that is a part of it.
When I am writing here and thinking about you specifically, I want for you whatever it is I want for myself or think valuable, (in the abstract.) aka always marriage, marriage, marriage...but that is not really it totally to put it in a word. This may not be in line w/ what you want for yourself, or need and since I can't even describe it in so many words here, it meaning is lost to the rain or sky or just lost