I’m lost, and that’s okay.

This is the kind of chill I only experienced a few times in my life, travelling in winter. Stepping into the snow for the first time sent my skin into a frenzy– I had never known such a feeling.

Now the mornings are just as absent of the warmth I am used to. Walking down the street earlier, every shadowed area was covered in a thick frost. My breath came out of me in a fog. I’m not used to any of it, but it’s perfect. While everyone else curses and bundles up, I rush outside every morning to catch the freeze before the sun comes. I watch the rise over the mountains, see the reflection off the ocean.

“You must hate this, Florida is so beautiful!”

No. No, this is perfect. This is good.

I tell myself this every morning I wake up, or every night I can’t sleep. This is good. You need this. I pass out in a flurry of nightmares and tell myself, no, this is good. I watch people go about their days and lives, and constantly I tell myself. Every day.

It’s a funny thing that happens to you, when your brain has been so improperly wired for so long. You start to believe you are not just depressed, or anxious. You’re just like this, and that’s all there is to it. You’re not broken– you’re fine. It’s what you’re made for. It helps you create art, or words, or keep a distance from others… which keeps you safe. You’re impenetrable except from yourself.

I tried medication, years ago. Multiple kinds, various strengths. It all ended in public breakdowns, mental breakdowns, and a complete loss of identity. I tried to write and came up blank. I stared at nothing and debated the best way to throw myself from my bedroom window. My more recent attempt (many years ago, still) ended with me running from my home and job to live in the woods. I only came to my senses after nearly dying from the withdrawals after realizing I had to quit. (Never take Effexor, kids.)

Now, where am I? Across a country, exploring a world I’ve never known, trying not to let my one asset and curse get taken from me. Fucking brain has yet again turned on me, hasn’t it? Much more sinister fashion this time.

But I’m lost. And I’ve always been lost. All those days spent among friends, be it at my lover Undergrounds, or in Miami, or the streets of Fort Lauderdale… I was never there. You saw me, you spoke to me, you engaged me in various ways. But I wasn’t fucking there. Back, far away where you can’t reach, is that damn voice.

This is wrong. Why are you out here? What did she just say? I don’t feel well. Why am I angry? What the fuck am I doing here?

I’ve let people down by simply not showing up. I’ve stopped responding to calls or messages at various times in my life, only to pop back up out of nowhere. There’s no excuse for that, really — I’m a bad friend. I am, really. I don’t mean to be, and I’ve tried very hard not to. But in the end, I’m gone. I’ve up and left the state, the city, and my usual haunts without a moment’s notice. Turned down friends, missed birthdays.

I am a bad friend, and an even worse person when it comes to self-preservation. I am fully aware of this. But somehow, there are a few people that stick by my side no matter what I do. I never set out to hurt anyone, and I’d never purposefully upset anyone without cause. Maybe they see that. I will never know, because frankly, I’m afraid to even ask why the fuck anyone puts up with it.

Lately, I’ve seen some people I know admit to their problems and take control. I’m so proud of them, I really am.

I can’t do it. 

I’ve seen what happens to me when I try to “fix” things. Therapy. Medication. Special schools. My last meeting with a psychiatrist included these words from her mouth: “Why are you still alive?”

why are you still alive. 

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I went to med school to say retarded shit.

God, those words hung in the air over my head and crashed through me. Why? A therapist asking me why? I thought about all the things I had told her– I let it all out that day– and fuck, that’s what she gathered? Not long after came the press devouring the whole “depression is bad, mkay” debate that followed the death of Robin Williams, as if people didn’t notice it was bad before, and I got bitter. Really bitter. Suddenly everyone was an expert on how it felt to be that low, and “why don’t people just get over it?” flew out of the mouths of the masses.

I don’t know where I’m headed. All I can do is move around, have momentary encounters with people, and poof away into some weird little world where I only process music and words on a screen that come out of me in no real order.

I’d like to say I will make an attempt to fix myself. That nobody ever needs to worry about me, and I’ll take some pills and end up just fine.

I won’t. I won’t do it again, because this is what I do. It’s not some sad thing, it’s not defeatist. If I can’t make things, I’m unhappy. Not everyone loses that on medication. I hope everyone that tries to get help finds solace, and can end up better. For some people it’s amazingly helpful, but it isn’t for me. I’d rather be an asshole that forgets to hang out, an asshole that skips town, an asshole with a rotting brain and an uncertain future than what all those pills did to me. But it’s okay.

You can take this as some self-defeating, anti-whatever rant. Maybe it is, maybe it’s just me realizing my only hope is to exist as I see fit. I’m not a great writer, I’m not the best artist, but dammit it gives me purpose. I refuse to lose that.

In the meantime, I’m going to keep riding buses, going nowhere, and writing about it. ‘Cause that’s who I am, and what I do.  I’m sorry.

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:

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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:

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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.