Brighter on the outside.

A few people once told me I looked, and acted, confident. When I’ve heard this, I had to wonder – what the fuck is it they think they are seeing? It can’t possibly be me, because that’s an incredible leap from the truth.

This is going to end up being overly personal, so abandon thread if you don’t want that.

I sit awake most nights going through the same routine. Not the usual “remember that awful thing you did 20 years ago?” Instead, they are thoughts of death. Horrors. Tragedy. What if someone breaks in with intent to kill? What if the car crashes and I’m left mangled? What if …? And on and on it goes, for hours, until I realize I’ve got maybe 3 hours of sleep ahead of me. On and on.

There’s no confidence here. Just jokes and a facade of immature humor. It’s easier to get by if people are laughing, right? Smiles keep people from asking questions you never want to answer.

“How are you?” … “Alive!”

Walk though a store and imagine every single person there is dangerous. They’re all itching to do harm, cause chaos, set the world on fire. That’s how my mind wants to view it. Like you’re perpetually stuck in those microseconds before a car crash – the rush of panic mixed with slowing time. Everything drags on, and everything is terrifying.

Yeah, big time confidence.

It’s often considered too much to speak about your own demons. Nobody wants to hear that shit, the crazy people should just keep their ways to themselves. Too bad, here it is. Just a bit of it, but here it is.

It shouldn’t be such a taboo subject. Plenty of your friends and relatives are going through something. Anything. And a fair number say nothing out of fear of looking insane, or pathetic, or useless.

I’ve been slapped with an array of diagnoses that have left my mental health specialist certain I’m incapable of functioning in any sort of normal setting. And I’ve always been this way. (Note: No, I’m not a psychopath. Give me time.)

Every day I walk around in a state of neutral absence. I’ve never quite existed fully, being too lost in my head to be present for anyone. Never call back. Never reach out. Never keep connections. I’m a pretty shit friend, with that.

I’m not special. Everyone has layers upon layers inside that nobody ever experiences. Everyone is somehow a special snowflake, or so they think.

Or, more succinctly…

The only point to this is pretty simple: remember that everyone around you is a little fucked up, and that’s okay. They might need you to just sit back and listen sometimes.

Mental illness shouldn’t be shameful, period. It can happen to anyone, anytime, no matter how good life is.

 

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NEW AND IMPROVED PILE OF SHIT!

Here’s the deal. I got my head sliced open. I’m a little bit off lately, for obvious reasons. However, the writing bug bit me again and I want to get right back where I left off. Where that was, I can only guess, because it’s been a long damn time since I have done this. Please hold while I reboot.

So. First off, I’m terrible at following directions. I wasn’t supposed to go wandering like I did after surgery. Not supposed to do this, do that, the other thing(s). Again, terrible. I did all of those things and more – I still am. However, I’ve healed up nicely. But the thing about surgery like this is that it takes way longer to heal inside than you’d think. People can be “off” for over a year after you poke the brain. And I certainly am. As my doctor said yesterday, “it looks like a war zone in there.”

Inspiring.

I’m not 100% positive on how it’s different. I have a skewed perspective, being me. All I know is that my head still hurts, as usual, and I can’t lift my right eyebrow properly, and other strange little quirks. So there’s your fancy update on that.

This may end up basically a “how my body is attempting to kill me today!” blog with random pictures and posts about cool shit I’ve seen. And out here, there’s a LOT of cool shit. I don’t know yet. I may put the previous format to rest, since it’s a whole other life now out here.img_20161013_125709

Things are far different now than they ever were in Florida. That’s not a bad thing.

Coffee, tumors, and brown chicks. Yup.

Here’s a tiny little update.

So this tumor thing, right. Let’s get that out of the way. 99% positive on all fronts from doctors it is benign. It’s still not a GOOD thing to have in your head, and if it’s what they think it is, it’ll come back. But my brain isn’t cancer’d. We don’t know if the problems I’ve already had will get fixed by the removal. I’m still not terribly good at hearing things, but hey. Could be worse. Problematically, some jackoff of a neurological radiologist decided to make my life hell and proclaim I shouldn’t get surgery, thus setting me back a lot in this attempt to get myself fixed, despite every other doctor and test speaking to the contrary. He had them cancel other tests, just as I was a month away from going to UW for some skull splittin’. I’ll be grabbing up a second, third, tenth opinion just to prove him wrong and get my shit handled. I do not like that man, he is not fun and I will not invite him over for tea.

My doctor put me on some form of beta blocker for these crazy heartbeats I’ve had for years. They came with a warning: Don’t miss your doses, and don’t take any stimulants. Coffee included.

Oh. Coffee. No… coffee.

This won’t do. At all. I. Can’t. Help. Myself.

Now, I know, I know. I should listen to the doctor. But it’s coffee. Coffee has been my perfect friend for most of my life, spawning many nights wide awake and tap-tap-taping away at a computer, doing just this. I would marry, make love to, bear the children of coffee, and always swallow.  Okay, maybe not. But you get the idea.

Hell, I’m in a coffee shop right now (I’m in Washington, for fuck’s sake, what else am I going to do with myself?) and it seems to be the only way I can keep myself sitting still for more than five minutes at a time. I’m a jumpy bastard, but somehow the coffee stops me in my tracks. It calms me, forces focus, gives me an excuse to do what I love.

I am trying the half-caf route. It’s going okay. I am not happy about this, of course. I want to buzz around all day wide-eyed and cracked out. It’s what I do! Instead, I have to stick with my run of the mill insomnia, with a dash of caffeine to keep it in check.

When they asked me how much coffee I drink in a day, I was given a look of “really?” Yes, really. I assured them I’ve even quit before to make sure it wasn’t the cause of the palpitations, under cardiologists orders. I just have a fucky heart. It does what it wants and doesn’t like to be told what to do, so sue me.

So for now I’ll have to take my brown death water at half mast. But I’ll shake a fist at the sky every damn time I order it like that, dammit. This is injustice.

And with that bitter little rant out of the way (not a pun, go away,) here’s the least fun thing I’ve noticed this week: Apparently when you’re surrounded by very, very pale people, you become an alien. I’ve been treated like some exotic creature from another world, and it’s very confusing. In Florida, there are brown chicks everywhere. Thanks to this, I am now some sort of token. Whatever works, I guess. I’m going to start using “is this because I’m black” for anything and everything due to these people.

I have some very neat people sitting down with me for stories soon. Until then, have this lovely song I’ve been obsessed with.

Living the American dream, one arrest at a time.

Just another day. I was headed in to work, and due to my impeccable timing, missed the bus. No problem– cabs exist for a reason.

Shortly after calling a driver pulls up to me, smiling.

“Oh, I am very sorry, do you want me to open the trunk for your bag?”

“No, no! I’ve got it, I’m ok.”

He was so cheerful. He had a great big smile on his face, and asked where I was headed. I told him my theater, and he became excited and animated. “Are you a musician!?” No, no. I am not. I told him about my job, and Kamran whipped out his phone.

“I was in a band! Would you like to see?”

The rest that followed simply blew me away.

Kamran came to the United States permanently in 1996, he said. Most of his musical success came in the early to mid 80s.

 

“It doesn’t look or sound as good as I’d like. It is fifth generation video you’re watching. There! That’s me, on the keyboards!”

We talked shop for a while. He told me of the songs they would play, and how he set up a camera system to show video and the crowd at their shows, “which in Pakistan, nobody really had done that before. We played a kind of music and put on shows that were special. We were number one in my country, can you believe that?”

It’s when I dug a bit deeper that the conversation steered to a darker tone.

“So what made you stop playing?”

“Ah. Well, I was kidnapped…”

He didn’t say anything else about that for a while. We continued along the road, exchanging videos of music and discussing his adoration for playing. Kamran explained how after a while, his band broke up, so he started a solo career.

“I couldn’t sing! I didn’t care. They loved me, on TV. So I wrote a song, made this music, shot a video… all in one day. They put it on the TV. They did love me very much, there.” He dug around in his center console and pulled out a tape.

“This was us! I like to show this to people and play it for them. The memories make me so happy. It’s sad but happy.”

The Arid Zone tape

After a while we came up on my work, but I couldn’t leave it at that. He seemed to dance around the subject of why he came to the US, but I could tell he wanted to approach it. “So… what’s your story then? Why are you here?”

“I came here at first to learn English in 1991. That’s why I come, I wanted to know! I liked it here, too.”

I started unloading my bag, but I had to hear more. I told him I was planning on writing this out, telling his story, even if I only had minimal details. “I’d really love to hear more about what happened to you, if that’s ok.”

“Sure! But it will make you cry.”

“I was so big in Pakistan. I was a model, too! Here!” He shows me TV ads with him selling products, posing for the camera, taking a well timed sip of coffee for the advertisement. It is all very 80s kitsch, and it is awesome for that.

“I had money. So, of course, I was kidnapped. They only wanted money from us. The bad thing, I was dating a woman who had a father involved in the US military or… I think security company from US? And her father sent men to intimidate and hurt the ones that captured me. My father, he told them what a horrible idea. Now I could be killed. He sent me away to the states, afraid for my life. That was in 1996. I lived here, I got my degree, everything was fine. I have degree in business and management, I knew what I was doing. But then…”

He got a bit quieter. My time was running short to make it into work on time. We had long since turned off the meter in the cab, and I hadn’t even paid yet… but I couldn’t leave.

“Then 9/11 happened. I was married by then, but my wife, she didn’t want me anymore. So she reported me as a terrorist. I was taken away by the FBI. She took it all… my house, my money, my life. She left our son in foster care, she never wanted him. After a while they realized I wasn’t a bad man and they let me go, but it was too late. She got everything and now I had a record as being arrested for terrorism. I was never convicted, but it didn’t matter. I can’t get a job except this. I even asked the FBI, please… this is my life, just remove this from my record, it’s ruining everything. But no. even though I am innocent it is still there, and always will be.”

He pulled out his phone and showed me the background image of a smiling, handsome young man.

“My son! This is my baby. It took me two years to find him again in the foster system. Two years to get him back. I told them, this is my son, get your own. This is my baby. They fought me so hard, but he is my boy. I couldn’t lose my baby.”

“I lost everything, but it is good. God does this… how is it? He gives you the world, but then he tests you. He takes it all away from you as a test. And it was good… before I was just too greedy. So much money, money money money. Now, after I had nothing, I can smile. Little things, you know? I am happy, God has been so good to me. I am alive! You just… just stay happy, and realize what you do have.”

I couldn’t stay any longer and I told him as much. I hated to leave, but I had work to do. He gave me his card with his number, and I asked him to turn and smile for the camera for me so that I wouldn’t forget his face or his story.

“Oh, don’t worry. You will never forget.”

I won't forget Kamran.

I won’t forget, Kamran.

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.

Look how dusty this poor thing is.

It’s amazing the things you tend to set aside when all else starts falling on your head.

This year– oh, 2013. What a monster you turned out to be. It seemed like every single week was rife with some new ailment, a new problem that seemed impossible to fix, or a person standing in my way.

I travelled across the country and back, flew up the country and invaded the nation’s capitol for a moment, gained and lost friends, started losing my hearing, discovered invading brain balls in me, became a recluse and back again. It’s been very strange. As I sit here easing myself back out of hiding (slowly now, I don’t want to get provoked and pee out of fear) I noticed I’ve missed quite a bit. Not intentional– I didn’t have a lot of say in the matter. But here I am, and the first thing I want to do is write. And write. I haven’t stopped since I started.

Tomorrow is Christmas eve, and I plan on using that to my full advantage. I’ve got nothing else to do but write my ass off, and I fully intend to, including finally ripping the photos from my trip off my camera and detailing it all here.

Damn it’s nice to be back here.

In South Florida, you’re always an extra.

IGNORE ME.

“Will Corey Feldman be there?!”

That’s not a question I’ve ever heard before, but screw it. First time for everything. There were models strutting around in very little clothing, and I was helping my friend’s band load in for an odd scene with a little boy and a beer can. People were milling around, often having issues staying out of the way of the film crew. I doubt many people knew how to act during a film shoot, because they certainly liked walking in front of that camera.

We had been invited along to extra in some slasher flick that apparently stars the aforementioned Corey (hopefully not the other one… could get tricky) and some random girls that seemed confused and good at being pretty. They did that job well enough, and the muscle-bound “killer” of the film had some hard-hitting dialogue such as “What… wanna go for a ride?” and … well, that’s it. That’s all I heard him say.

One of the bar girls kept taking off and putting on her jacket, trying to determine which made her boobs look better for the shot. She was hidden behind other people anyway, but that one little possibility of her left breast being in a movie appealed to a deeper part of the brain, it seemed. I took my jacket off because I was warm after moving the equipment, which was taken as an invite to inspect my breasts. I declined.

There was nothing but beer to drink, which I hate, so I sipped on a Monster for a while and smoked more cigarettes than necessary. My friends were hyped up and excited since this was going to be exposure for them, and I was proud. I remember back as they were just getting things together, so this was a nice event for me to witness.

There was an eight year old child with fake tattoos and a cigarette wandering around, preparing for his scene where he hurls a beer can at the band. The director seemed extremely thrilled with his decision to include this scene, and everyone egged the kid on to aim for one band member or another. Kid did manage to peg the singer at one point, so I guess he took it to heart.

I eyed their lights and cameras, trying to get an idea of how it all works for them. I’m the kind of asshole that stares at the equipment during a show, losing track of the show I’m supposed to see or be part of. Bad, but tech-fueled, habit. Despite my lack of an attention span, I did as I was told and stood here or there as needed. Move to the left. No, a little less. Perfect. Ok, now, pretend to rock out. Good! Guys, keep rocking. Guys. GUYS. ROCK OUT, GUYS! … Yeah.

So as the night went on, people kept wandering off without direction as the film crew never told us when they were coming back or if not at all. Eventually about ten of us remained, and even the director stood in the background to fill in some gaps along the way. He was an odd fellow, showing us the poster options for the film and basically calling the location and the people inside the dirty aspects of South Florida, something gritty. I wasn’t sure if he was insulting or not, so I didn’t care much.

Walking. Walking. LOOK INTENSE. Walking...

There was a Bentley rushing out from behind the building numerous times for the shoot, nearly crashing into a friend’s van, then an unsuspecting car that was just trying to leave. They didn’t really have anything blocked off, so nobody knew for sure what was going on. I wandered around, talking shop with some various guys on the set. There wasn’t much else to do at the time.

Now look like bar sluts. GOOD!

I had done extra work before on small-budget flicks, so it was kind of cool to get back into it. There’s always something like this going on somewhere downtown, and that’s one of the beautiful things about my city. What got to me, though, was that some of the other extras with me had no experience and decided they had to ham it up for the camera. They missed the point that nobody is here to see them, and we’re just filler. That’s all. A few people were given dirty looks for trying too hard, and others came dressed as if they were the stars. The people that gained the most notice didn’t do much of anything at all– they just were cool. Acting natural is apparently hard for a lot of people to do, it seems.

It was pretty fun really, and doing the rest of the shoots will be cool too. I just wish more people understood the idea of acting casual in situations like this, not waving your boobs around like a crazed animal.

Then, we started a fire. Because that's normal.