For the curious, and my hatred for “sorry.”

A lot of people, on a daily basis, ask me how I’m feeling. Some even treat me like I’m on my deathbed, which makes me feel all kinds of special. It gets a bit daunting reciting the same thing every day, especially since a good portion of people know I have multiple systems working against me at once, and they want details. I’m writing this up as a small guide to How I Feel™, and a bit of the why. I skipped the smaller stuff, because these are the main concerns out to suck my life force.

Let’s start with the big dog everyone is worried about: The thing in my head.

The first culprit:

First, some perspective. Here’s the area the thing is, called the petrous apex:

Image

And this is what it looks like when there’s a thingy in there (this is not my head): Image

Not pretty, eh? Doesn’t feel pretty either. It doesn’t have very far to go when it grows, so it pushes on the facial nerves. Or the carotid artery, your inner ear canal and various innards. Eventually it will wreck all your shit in there and start eroding the bone keeping it out of your brain. That’s not good either, I think you can guess why… we like having brains They’re good for us! Best left uneroded.

So due to this happy little bastard in the right side of my skull (bonus: while looking for this, they found my sinus cavity has cysts. Explains the sinus infections!)  I am usually trying my best not to fall to the right (balance and all that, dizziness) I always have a headache, I can’t hear terribly well, sometimes my ear bleeds. My face will go numb and become difficult to speak with, or just tingle til I want to remove the skin. The pain will go down the back of my neck into my shoulder, and radiate as far down as it likes. Couple this with my previous issues from too many concussions and I’m a speechless, slurring, hard of hearing, forgetful idiot sometimes. I’ve become a professional at hiding it, however, so most people just think I’m drunk. It’s fun to play with.

What we have learned:

I still am not sure what it is. They just keep referring to it as a granuloma, which is slang for we don’t fucking know. It isn’t fun, and makes my head all stupid. I cannot afford treatment so I just deal with it.

The second culprit:

Next up, most of you are aware I have Crohn’s. I will not provide any pictures with this one because asses and poop. So this one is actually a bastard, since it’s been with me for the last twenty-five years. It never gets better, and I certainly cannot afford the medications for it, so I just go about my day til I end up in the hospital for it eventually.

What this one does is simple in some respects. It is an autoimmune disease, and it attacks (mainly) part of your digestive tract. Any part it pleases really, so it could be a surprise! Mine has no specific place, so it’s always a gamble when I go in and wave my hand absently around my stomach at the doctor when he asks where it hurts.

“It hurts about from the everything here to all my everything. Please fix k.”

But! It doesn’t just hurt your tummy and make eating a chore. It can wreck your eyesight from inflammation, cause nasty arthritis, skin problems, various body pains and all around ick. Everywhere. Kinda like the idea of lupus but with more crapping. That’s only in the more hardcore cases on the moderate to severe scale, though, and most people get remissions.

I have it moderate to severe and I’ve not had a remission for more than a a couple months in ten years. So you can guess how I feel, usually.

What we have learned:

Shit sucks, yo. Nah seriously, those times I rapidly lose weight, saying “you should eat more” is a fine way to get a big fat shut the fuck up your ass. I have no qualms about putting things in your ass, either– I’ve had it done to me often enough, and the bastard made me pay him.

The third culprit:

And last but not least, the kidneys! How could we forget the kidneys? Most of you probably don’t know that in my family, we have a nifty guy hitching about in our DNA called PKD, or polycystic-kidney disease. It looks like (fair warning, ick) this:

Image

Also not pretty stuff. This one tends to shut down the kidneys and put you on the everlasting list of doom awaiting another from a donor, while little machines pump fluids in and out of you so you don’t die. Mine haven’t failed as of yet, but this still comes with bonuses.

I found out very much by accident after having some scans taken when I injured myself a few times in one year (I got hit by a moving van, later fell and wrecked my knee, etc. Good year!) the doctor pulled me aside and asked me very calmly, yet distressed, “did you know about this before, or am I the unlucky one to tell you?” I sort of looked at it a while. I was sinking inside. I knew it ran in the family, but I had no idea it was in me already. The scan said, too many cysts to count. I lied to that doctor, sort of. I said I knew. Didn’t want to bring him down a bit too, y’know.

So with this one you get lots of goodies. Cysts can show up where they damn well please. I have them all over my ovaries, one or two on the liver, and who knows where else by now. The kidneys just keep getting larger and larger, so the other organs get squished about. It does a bunch of other awful things but we’ll skip those for now. This compliments Crohn’s nicely, since things get inflamed and also grow about. If I look a bit chubby for a week, it’s because my organs are fighting for space, now go away and let me eat cookies while I cry.

What have we learned:

Coupled with my spinal injuries from the van incident, along with scoliosis, I’m a back pain masterpiece. Kidney disease hurts. And if there’s a new way for me to sit uncomfortably, I’ll find it. I’m that good. 

So the main thing to take from this is: I’m always in a wide variety of pain, all of the time. It doesn’t stop, no matter what. It changes in ferocity but never goes away. It has been this way for a long time, and it won’t stop, either. So when you ask me how I feel, if I say I’m fine, I’m fine. My fine may be a bit different from your definition of fine (my ear only bled ONCE today and I ate a whole sandwich! I AM GOD) but seriously, it’s cool.

Don’t tell me “I’m so sorry.” I don’t like sorry. You didn’t make me sick, why the hell are you saying sorry?! There’s nothing to be sorry for, I’m fine. Do I have bad days and want to shoot the offending areas? Of course. Add to it having no insurance to get help with any of this, and I’m just a pleasant fucker all the time.

But, I don’t care. I still make sure I do what the hell I want to, when I want to. Go out and climb a tree? Damn right. See my friends until 6 am for the fuck of it? Yes please. My body may fight it, but there’s no joy in hiding from life. There are times I don’t want to run about, so I play video games and eat pizza. Nothing wrong with that! Why? I’m not dead. I’m not dead, I should have been a number of times, but I’m not. So I’d say that’s doing pretty damn ok. I’m not sorry for that.

“Oh how awful for you, gosh you’re so brave.” Greatest line of crap slung about. I won’t get better. It’s just how shit is. I’m not “so brave” as people love to throw around at sick people, or people who deal with shit that lots of people deal with. I’m not special, bravery and heroics are for people who do something extraordinary in the face of danger or self destruction. Example: nobody decides to get ill and beat it, they just either do or don’t, depending on how awful it is. I have friends that survived cancer and scoff every time someone calls them brave. It’s not easy, it’s impressive, and it’s a fine show of their strength. But calling me brave because I put up with something I don’t have a choice in is silly. When you’re sick you just do what you have to in order to survive. It’s not brave, it’s normal survival instinct. 

There is nothing to feel bad about in being strong. There is also nothing to feel bad about for not being “brave.” I never ran into a burning building to save orphans, I haven’t stood in the face of my mortal enemy and taken a bullet for my comrades. That’s bravery. Survival instinct is a nice primal attribute to have. If you don’t blow your brains out when shit gets bad, good for you! You’re like most people.

We’re all just living, and trying to keep from dying. It’s natural.

You either keep moving with what bullshit you’ve been handed, or you lay down and rot while people pet you with meaningless words. It’s strength of your own will, the strength of your body, the people and doctors around you pushing for more. You’re just surviving. Other people help, as well as their love and affection, but in the end there’s still just you when it’s time for bed and the anxious thoughts creep in as the light goes out. When the fear slips in, how it gets handled is up to you.

Am I happy? Not really. Pain is, well, a pain, and it drags you down. Sometimes I get extremely mad, but that’s just me being a pussy. Everybody gets to be a pussy sometimes! However, I am not UNhappy. I’m alright, nice and middle of the road.

Alright is good enough for me.

So next time you ask, no, I am not feeling well. Just don’t feed me lines about how bad you feel for me. I don’t feel bad for me. I feel bad for those that let these things hold them down, or define themselves by it. So what if I’m sick? Everyone gets sick, feels bad, has a hard life. People die, people get injured. It may not make it seem fair or good, but it happens to us all.

I prefer to empathize with others instead of feel awful for them. A simple, “hey, I understand life sucks, I too am a living creature. Need a hand?” Words of care are more effective if they go beyond “sorry.” Tell someone who is sick you’re there if they need you, and mean it if you do. Bring them a damn cookie or something if you feel bad! Saying sorry is an easy way to think “my job here is done, I felt bad for the unfortunate today!” Give ’em a hug or some shit. Sickness can be isolating, and knowing everyone just pities you for somehow being unhealthy can make it worse.

Treating people like they’re nothing but an illness and deserve to be coddled helps no one. If they literally need to be taken care of because their body gave out, by all means. Don’t abandon someone because they have become infirm! But otherwise, encourage them to do the things they love if they are capable, help keep them from sinking into the easy out: the little depressive hole. If they do fall into it, just talk to them. Reinforcing to someone who feels terrible that everyone else just pities them is helping it continue. Give a depressed person reason to think everything really is that awful solidifies their reasoning. You may not be able to fix anyone, but you can at least not contribute to the problem. Remember that they are still people, and deserve to be treated as such.  I get tired of being seen as some sick person, and not me. 

I don’t feel sorry for myself. Why should anyone else? I reserve my feelings of pity for hurt animals, small children, and men with small penises. As far as I know my penis is huge.

However, I do like cookies, so that’s pretty ok.

Advertisements

The best mistake I’ve made in years.

I suppose it was inevitable that I’d eventually come right out and pull a dick move on myself. I’m really good at them, and I know so many ways to piss myself off.

A few nights ago I made what seemed to be a very wise decision.

I was to quit writing and focus on what seemed far more important at the time– everything else. I am not even entirely sure what that meant, and how I could refocus creative energy outside of what I am doing now. I was getting to the point where I wanted to free my mind of the constant need to commit things to paper or text.

At least the fire was pretty.

This was the result:  My firepit filled with every notebook I could find, every scribble of a story, and all the writing from probably the last three years. A mistake? I thought so, at first. Now, I think it was probably the best thing I could have done for myself.

In those books sat a lot of awful things I thought about far too often. I filled them with great ideas, yes, but sometimes it was just a venting spot for all the stuff I could never find myself getting over.

Now, they’re gone. I intended to stop writing, ended up feeling more of a desire to do so, and removed unneeded stress from myself all at once. When I realized that I had done something I needed to do unintentionally, I was relieved. I spent perhaps only an hour upset with the loss. I don’t regret anything.

So, like most people, I found something different to do with myself this year. Instead of the usual ideas of quitting smoking or eating less, I’ll write more. I will stop keeping myself away from the situations I should be in in order to get it done properly. Needing to go out and find inspiration isn’t as dangerous to my lifestyle as I originally thought. There is so much I feel a need to say and do that denying it would be very cruel to myself. I have no right to do that to myself.

Just as much as I would hate it if someone held me back, why should I do it? I thought I was acting out of self-preservation in the burning of what seemed like an unhealthy desire. Losing something is a great way to learn the difference between a need and a want. I don’t want to write like I need to write. Not for anyone else, not for some weird desire to be seen around the world for some book I’ll never write.

Nah. It’s just there, sitting in my mind, ruling over me. I can’t quiet it, and I shouldn’t have a desire to.

All of those little overlooked details belong to me for tomorrow’s writing. Every conversation I hear becomes part of me. I watch people interact and find a source for something new in it. Everyone is my muse, and I refuse to let that die off.

It would be too much to try and silence my own mind. I’d probably go mad (more than I already am?)

I’ve run out of excuses.

I even broke my own supposed end of writing mere hours after the fact, and this was the result of it.

 

It’s 5am. The 30th. Very close to New Year’s Eve. I’ve just come out of a cluster headache haze, making it the perfect time to sit and think.

I burned the notebooks yesterday. I had a plan, then.

I was told by someone once that you may have to pretend you never wrote before to learn how to do it all over again. I had no intention of writing again, though– which lasted less than 24 hours– since I was hit with a barrage of “WHAT THE FUCK MORON NO” messages from all sides.

Alright, I get it. I was an idiot.

It occurred to me that, despite my best interests, I can’t stop. My mind was writing for me the moment I decided I had to quit. I realized why a bit after: I am useless otherwise. Extremely.

Not in that I can’t work or breathe or walk or shit.

I can certainly keep those things going.

Especially shitting.

Yes.

I’m not myself without it. I don’t care if it doesn’t always make sense, or if my sentence structure doesn’t fit perfectly, or even if the subject matter is nothing anyone cares to read. I do, and that’s why I started in the first place. It is as much a part of me as thinking. I felt liberated at the idea of stopping, but I quickly realized that liberation fed straight to a void.

My ultimate partner in all things writing is gone. His creator is, too. Yet still he pesters me relentlessly, just as he used to between 2 and 5 am when neither of us could sleep. We passed the time playing Wordscraper and bullshitting, often just needing to vent. It would turn to writing on a regular basis, as that was his sort of thing.

All the little trivial things I tried to ignore– nope, parts of a story. He’d insist.

It’s his fault I can’t stop. I can truly blame him for getting me out of a rut where I refused to believe my writing was going to do anything for me. He is at fault for being the ultimate mentor and even the occasional muse. He is the reason I am a ruined person– in the best possible ways. It took having it utterly beaten into me for the truth of it to sink in.

I blame him, and it’s wonderful.

He’s gone, but not really. It’s like a replaying audio file stuck in my head.

“You’re a writer, so act like it.”

“I bet I have more empty notebooks than you.”

The list goes on, because he could talk. A lot, and then some.

I spent nights proofreading. Debating. Cursing. Not my own things, but his. I helped to go over student papers when he felt like his mind had exploded. Thinking on all of this made me go over other memories, mostly recent ones.

I realized something.

This year brought forth so many odd turns and alterations, things falling apart and perfectly falling into place.

I aided some in betterment, probably led a few to damnation.

I managed to marry someone terribly beautiful and intelligent.

I traveled up the country to see the most amazing people in the world.

I stuck by my morals and self-preservation abilities to a fault.

I watched as people suffered, wishing I could do more.

I lost and won and failed and got my ass back up again.

All of this caused by pointless decisions of mine or others that didn’t matter at the time.

Every. Single. Little. Damn. Thing.

All of the life events you wish didn’t happen, wish could happen again, wish for them to disappear– they happened. If not to me, to someone close enough that I could feel it. Experience it by proxy.

Oddly enough, I can trace so much of it back to a few (seemingly) small decisions I made along the way.

Seeing how those events intertwine and undulate along through time to create where we are now astounds me.

I am not the kind to pray, but I pray to never lose my memory, so that I can always recall how I shape my own world through every single step. I watch people enough to see how they got there, too.

In the last few years, a five minute decision to take a weekend trip gave me a husband.

One poor choice of food landed me in the hospital in time to walk out hours before my friend never did.

One conversation cost me a friendship, and they still don’t know it.

One thought caused me to question everything I know, but especially what I don’t know, reshaping my mind.

One person moving across the country gave me peace.

One person moving across the country destroyed my peace.

One idea became a life goal.

Deciding to talk to someone I always intended to but never had the chance to led me into cultivating a relationship for them.

One person I’ve met but once changed how I view myself completely.

All the small, supposedly benign things that people overlook are more important than we give them credit for.

That stupid thing I said could come back in five years. Ten.

One false move, or one wise move, can make or break everything.

2012 is rapidly approaching me. Us. Everyone.

I decided I can:

Consider those steps. Rationalize them. Forget rationality, throw it away. Do what feels good. Rationalize them again.

Agonize over it, every single thing. Every detail. Feel miserable. Get emotional. Never do anything.

or.

Know that each and every minute detail makes a difference at some point. From the food you eat now to where you go to buy that shirt, it can do something to you. For you… or maybe even against you. Think, but don’t stop.

Never stop. When life becomes to terrifying to try something new, it’s lost the magic. Bad things happen, and always will. You can’t know what they’ll be until you get there.

Don’t let the horrible things fool you. There’s a fine chance that the risk you’re afraid to take might be the best thing you’ve ever done. Maybe it’s the worst for a while. It doesn’t matter. It all leads somewhere, and that place is filled with options. Even the threat of death.

It’s cold out here, so early. Quiet. In my head I am holding court with a dead man, and still his advice stands strong.  I think of what I never would have had if I never took those carefully executed, or hastily thrown together, risks.

If not for myself, but for those that rely on me in some way, I’ll keep listening to those mental recordings.

There’s no longer room for the what if or fear of getting in too deep.

I accept my little details, from their inception to the moment they change my life.

am a writer, good or bad.

am myself, good or bad.

This last year tried to take that from me.

This new year I’ll take for myself, for those I love, and for what I believe in.

All because I listened to one man living only among memories.

 

I’m glad I only lost myself for a short time.

 

The mind is a terrible thing.

Around me, every single night, I watch the minor collapses in people as they struggle to keep up with themselves and everyone else. Relationships have crumbled, minds have caved and individuals have snapped from existence. I hear what they have to say, and I try to be as liberal as I can with assistance and advice, should they desire it. I never, ever mind listening to the problems of another, even if it’s not someone I am particularly familiar with.

This is probably a bad problem solver.

What I don’t like is seeing the same patterns repeated in different people, supposed “fixes” that don’t do anything but cause more problems.

I can hint, pester or harangue anyone about their misinformed choices, but in the end, it’s never up to me. It’s solely up to the doer, and they don’t always make the sound decision.

Take the perpetual drinkers. If they have a bad day, it must be fixed with a drink. Then another. Maybe just a few more?

Some people are truly alcoholics and need help. That much is true. Some place themselves there, finding something else to cope for them. Why develop abilities to survive when you can smoke it away? The drug-centrism of this area doesn’t help, and you end up with droves of people falling into anything but facing a problem head-on and just dealing with it.

Then you are led away and eaten.

One person jumps on a drug or drink, suggests it, and it flows through like water. Even the kava bar I posted about before has that sort of ripple effect, with people coming back night after night to just feel that calm it provides. It’s a replacement for something else, as always.

One of the routes that distresses me most is the relationship hopping. I’ve been in the situation myself, but some make a hobby out of it. It’s one thing if you were already unhappy and happen to stumble upon an individual that gives you the feelings you crave (though I never advocate cheating as an alternative) and you go from one to the other. It happens, as much as it is hurtful to the other party. But to dive from one to the next proclaiming them to be the ultimate lover, the only one, THIS IS IT! … every few months. Not a safe plan for anyone involved.

I worry often about the people I know, wondering if they will make X mistake again, or go back to X bad person. I gravitate towards people that are having a hard time– which has put me in very hurtful relationships, so avoid that much if possible– and want to see them do well. I’m tired of seeing the nearly there, the almost, the so close. I know not everyone can get their lives together, but it is a nice thought to me.

The dependence on chemicals to keep sanity is habitual. I wish that wasn’t the case, but also realize that some people just need it. Anyone that has suffered massive panic attacks or mental illness can tell you as much, and the ideas of self-control go out the window. There are some less invasive ways to go about it, but not everyone has the time or control to handle them. I know I can’t just will away a panic attack, so why should I expect anyone else to?

Underneath it all is this deep interdependence on each other, a need for approval and acknowledgement. If upon walking into a favorite place to be nobody greets you, you’d have a paranoid fit inside.  It’s a natural tendency, but harmful in large doses if it consumes you.

EVERYONE MUST LIKE ME ALL OF THE TIME FOREVER!

Not everyone gets along. In large groups, that is very obvious. You can fake it, but that will only go so far as buttons continue to be pushed. There are always limitations to a person’s ability to remain neutral.

So as I hopped from one person to the next last night, their problems amplifying in my head as they spoke, I wanted to stop time. I wished to place them in the right situations, remove the unsavory things, wipe the bad memories away. But I knew, even with that ability, I wouldn’t. Learning is the only way. They either survive and grow, or they’ll flounder. That’s never up to me, and never will be. All I can do is try to be there.

To my friends in the hard times, I’m sorry. I don’t know if it will get better. I won’t lie and just say it will, because that’s untrue. Some things can’t be fixed. I can’t stop a relative from dying, or your mental illness. Nobody can. It’s unfair to give false hope in any situation. But the only thing anyone can guarantee is that it won’t always feel the same, and things change. The way you handle it changes, and how it will impact.

Now a bad word.

I’m simply glad to have some intelligent, witty and wonderfully broken bastards around. I just wish there were less almosts, and more finally. Maybe we’ll get there someday.

Maybe.