Wednesday, May 19, 2010

Reasons to cancel the surgery

(via my screwed up, please let me cancel the surgery! brain)

- Because the Lost series finale is on Sunday, and it is like a total pop culture moment (that I will be totally out of it for). Also, it will make me cry, and my face will probably hurt too much for crying.

- Because 6:30 is just too damn early in the morning.

- Because I have been availing myself of Dr. Google, and neither of us are pleased with what we see there.

- Because my throat isn't even hurting right now, and that is ridiculously rare! (Also: Do not currently have sinus infection! This is beyond rare... and should be appreciated.)

- Because how the hell am I going to take my regular meds? (Note to self: call tomorrow and see if there is liquid Lyrica.)

- Because... I don't wanna do it?

No: The surgery is set (fingers crossed, and barring any news from the pre-op people who still haven't called me), for 7:30 on Friday morning. I'm the first one in, which means I should also be the first one out. Which is good, because waiting is not my strong suit. All those people who comment on my 'patience' have never had to sit in a hospital waiting room with me while my mind buzzes ahead at 732 miles an hour. (Actually, some of them have, but usually I am good at hiding the buzz from people who aren't really paying attention.)

Of course, I am now coming up with a zillion different reasons why I should not let them cut open my nose or tear out the little bumps in the back of my throat, but I realize those are just my little anxieties popping up, and I try to pop them right back down. It's like one of those Whack-a-mole games: Up - Bam! - back down. Back UP - Bam! - back Down. I just have to keep bopping them on the head long enough to get to the hospital on Friday morning, at which point Mum will make me do it whether I want to or not, because she had to leave the house at 5:45 in the fricking morning.

Although I realize that it's not - in all likelihood - a life altering procedure, I'm pretty nervous about the whole thing (in case my endless blathering on about it here hasn't made that pretty obvious), but only because ... well, if you've been reading any of the blathering over the last 4-5 years, then you know why. Because medical science and NTE's body are not friends. Because whatever reaction you say it is impossible to have, then that is the reaction I will have. Because I'm in a place right now that isn't horrid and unlivable, and I am loathe to poke the bear and wind up there. Because if I wasn't nervous, at this point in my life, with this body and all of my experiences, then I would have to be pretty ignorant.

I know there are lots of people - somewhere in the midst of all those Temporarily Able Bodied people we people with disabilities talk about - that there are people who actually get up in the morning and never give a second thought to whether or not their body will respond in the way it ought. Who never have to second (third, fourth, fifth) guess a doctor's recommendation, or worry that things might not work out for them. I don't remember it, exactly: That ignorant feeling of being in control of my own body and what it was capable of, but I know that I am not one of those people anymore.

Back when I was dancing, there came a point, in the year or two right before I got sick, where I was constantly twisting my ankles. I must have sprained the right one 4 times in the course of a year and a half. And I mean seriously sprained - and even a slight fracture once. But I was 13, 14, 15, and it meant nothing - a week, two weeks, and I would be back dancing again, good as new. It honestly didn't occur to me that there could be any other outcome.

I was more fearless then: If I sprained something now, I would probably never attempt that activity again... I avoid things that cause even the most minor of injuries, go out of my way to avoid even the tiniest bit of extra pain.

Because here's the thing: Being in pain changes who you are. It changes how you see the world, how you fit into the world, how you interact with the world. Everything is a risk now. Opening my eyes, rolling over, tying my shoe. It's all a big deal, it's all a potential threat. And that's a horrible way to live, so I suppress it as much as I can. I don't overthink the little things (at least I try not to). I try to offset the extra neck tension I'll get from sitting at the table for dinner with a little extra ice pack time, or pencil in a hot shower because I decided to sit on the floor with little girl today.

You figure most things out, because you have to live.

But asking for extra pain? Going into something that is going to hurt, no matter what - even knowing that it's probably essential in the long run, well that's just incredibly risky to me. Because I can't assume that it's going to be fine, and I can't pretend that the extra pain - and oh, boy, does everybody agree that there's going to be extra pain - isn't almost a dealbreaker for me. And I shouldn't have to pretend, but in real life, I do.

The number of people - related to me, who have been witness to my illness from the beginning people - who have played oppression Olympics with me ("It's not as if it's a tumor their taking out/you're having chemo/you're losing something important" or have asked me what the "big deal is - you'll get to have tons of ice cream"? Is frustratingly high.

"But what are your other choices?" they ask. "You're going to keep getting sick right? So just let them do the little snip here, little poke there --- maybe get your tummy tucked or your boobs shrunk a little while you're under, ha ha --- and then it'll be fine" they say. (And no: I'm not talking about you, who was actually thinking about how combining surgeries would be helpful re: not having to do anesthesia twice. I'm talking about the more thoughtless among us).

Right, because A) This is totally a joke to me. and B)You're not the one who has to live in my body, in my level of pain, now or then. So you can't really tell me whether or not it's a big deal. You just have to take my word for it - this is a big deal. I know it's not cancer or whatever the hell you think would be a big enough reason for me to worry, but I'm still worried.

Let me just say this again: Even if everything goes absolutely 100% as it should, by the book, perfect: This is still going to be a big deal for me.

Because all of those little sad faces that they give you in the ER so you can point out your pain? None of them is going to cover me anymore. Because I am already at the saddest face, I am already as high as the numbers will go, and now I'm volunteering for more: That is a hell of a big deal.

And I realize, as I am trying to find a conclusion to this very wandering post, that nobody who needs to read it will read it, because they don't know it's here. (Thank god!) But that maybe just writing it was the point, because all of the sudden I don't feel so ridiculous about being completely stressed out about this - It is a Big Deal for me, and it's something that I don't have to apologize for being a bit anxious about. So if I want to brainstorm reasons to back out of it, knowing that I won't actually back out of it, so be it.

Now, somebody give me a really good one, because "getting all the ice cream I want" is no longer on the pro side of the list: I'm an adult, and if I want ice cream, I will damn well eat it, surgery or no surgery.

Maybe I'll just add "because I'd rather go to Dairy Queen" to the list...


Laurie said...

I totally understand what you are saying. People who do not live with illness or pain can't (even those who do try) see things from the same perspective.

I will be thinking of you Friday, and hope everything goes as well as it can for you. You have every right to be nervous, scared, doubtful, etc. It's no small thing, what you're doing.

While the situations are quite different, I do know that my major sinus surgery years ago and the many smaller ENT surgeries did ultimately make a difference and decrease my infections. I only hope you are able to say the same thing when this is all over!!


Crazed Mom said...

I'm gonna assume since you left a comment on my blog you're at home and doing ok??

Never That Easy said...

Thanks Ladies: I really appreciate it. Laurie - I hope mine will be as beneficial, it's nice to hear that it worked for somebody (even if our situations are different).

Actually, my surgery is in about 4 hours, Ms J - I'm just wandering the internet because sleep is even more elusive than usual for me tonight.

Sue Jackson said...

Oh, my gosh, I've been so busy and out of touch...I had no idea you've already had your surgery!

I hope it went well and you're recovering well, but most of all, I hope you were well enough to watch the Lost finale!! We just couldn't make it till 11:30 pm - we're going to watch the last half tonight on tape.