16: A hermit with a commune kind of heart

The sky is white, but the light is yellow. I see it filtered through the towering pines in uneven patches on the ground. Somehow I got myself from inside the tiny cabin to a chair in a clearing of the woods just next to it. The yellow light lands on the chips of cedar covering the ground; Sunset light. At not even 3 pm. Sunset should be at least five hours away. 

A teenager started the fires, they say. Threw fireworks into a gorge in a national park in Oregon. Now areas impossible to comprehend are gone. 

I wonder if this is how it felt for the original folks here, when Europeans took their land and destroyed all things holy. To the point of such extreme arrogance – the faces of four middle-aged white men on a rock that once was the face of God itself. Every time I get to a new place here, I am shocked by the insistence that this happened a long time ago. It didn't. It's happening still, this very minute - the denial of mere existence of a people. I find it erie.

I wonder how it felt - and still feels - to see those same people who gave you disease-infested blankets on purpose, now on every street corner – of streets they paved over the land – claiming this is 'our' land? While really saying 'well, but not *your* land'. Knowing that this ‘our’ land is really only for the select few? Certainly not for the first? 

And yet they still wonder why suicide rates are high? Like. Are you fucking kidding? 

My body is in such pain. When it is, my filters fall all away. I just don't care anymore about saying the things that offend, but that - let's face it - are real. Maybe that is the reason for pain? To speak up, when everybody else worry about keeping it civil. Pain is not civil. Pain doesn't care about being nice.

I remember my own Father cutting up every single tree and bush on the tiny parcel he wanted to built his home on. The shock at the annihilation of all things wild was too great for me to take in. To this day it still is. And that was just one tiny parcel on a street in the city. A majestic tree was killed there. How did she hurt anyone? Now a house of strict lines stands on that parcel with an utterly domesticated garden; grass and a bed of hydrangeas in the corner, a bed of roses in the dry soil under the kitchen window. Nothing else. 

It feels like even the fibers of muscle in my heart are fighting gravity. But a gravity on one of Jupiter’s moons. They contract, release, but never fully, like they have to fight way too hard to do their job. Like I’m carrying my own gravitational field, where even the lightest feather feels like it’s made of lead. 

I sense the blood rushing through the veins in my throat. But as if there is too much blood going through a too small vein. Like it could all burst out through my throat any minute. The same rhythm in my cheeks, my forehead, both sides of the cranium, the back of my head. My fleshy lips pulsate with pain. My forehead feels like it’s in a metal noose and someone it tightening it; all the time a little more. The viciousness of it is making me immobile.

It’s squeezing my eye balls in their sockets, squeeze, squeeze, squeeze. Rhythmic, all of it rhythmic. 

My lower back as if muscles are replaced by metal, unyielding, tight; pain. My spine crushed, again, again, again. The shoulders. 

My upper arms. Always worst in the left side. There’s a muscle there, that feels dipped in acid, and it’s making my fingers unresponsive. My skin all over my body, pulsating. Like all cells are making a run for it, away from this hell. And here comes the shaking...

How do you explain brain damage? Why is it so hard for others to know, I'm not making this up? I meet that reaction maybe more than any other. The disbelief. Until they see me like this. Then they all go 'oh'. 

I didn't make this up. Fuck, I wish I did. Here's the simple fact: A brain hit just right will have damage. Yes, they talk of how it repairs itself. They are also clear that this process is not well understood. And how in adults, with several head traumas behind them, even walking into a door might get you there. It’s not news, nor controversial. Maybe it’s just hard to take in, that life is this shitty in a person you like, who is standing right in front of you. Maybe it’s just the human tendency to deny what you wish were different. The magical thinking. Reality is gone, if you deny it’s there. At least for you. For me – I don’t have that luxury, there is literally nowhere to run, when the hell you're in is the body you're in…

It hurts so bad my eyes start to water. I hate this part. How little and weak it makes me feel. But I cry. I can’t will myself not to. It hurts so bad, the physicality of it just takes over. There is nothing I can do but wait for it to pass a little, while also knowing it will take days before even physical coordination is just a little better. Knowing even more, it is not getting all the way better at all. 

For able-bodied people, this part seems the hardest to grasp: That I am not getting better to the point of being well. 

Even when I’m better than right now, I am not getting better they way you are better. It’s not the flue. 

This my every single second of every single day of all the days in the year for 11 years now. The moments I’m better are not ‘good’. There are simply a little less pain, just enough so I can stand on my feet, shower, maybe even eat. The days I do more than that, I’m borrowing on tomorrow. 

This is the face of handicap. Did it not look the way you thought handicap looked? I know how to manage it, so people just see a body that looks normal. That doesn't mean it is not raging wild on the inside.

It also doesn't mean I simply haven't done my research. That I must be mistaken about being ill, because surely I just haven't found enough material to present to the right doctor so he can see what to do and fix me. 

That is another one of the most common reactions from people: The assumption that everything can be fixed. And if you're ill, you just haven't tried hard enough. Maybe you even like being ill. Maybe you're in it for the attention. I don't even know where to begin with how patronizing that is. My brain might be damaged (yes, again, really, it is, I'm not making this up, it's not because I just haven't seen the right physician or tried the right therapy) but my intelligence is not. I know how to get second opinions. Third, fourth, you continue, if you feel like it. Assuming I don't or that I didn't? Actually, that doesn't only say so much about how most people see the infirm. The whole 'ah, but she should just be doing this thing that my cousin did that fixed him for good'. Or 'she should just be getting out more, or eating this special diet, or regimenting her sleep'. But it also says a ton about privilege. The privilege of having an able body. Now please, PLEASE, do not give me the speech about how your body also fails, you have that debilitating headache every time you eat hot peppers. I feel for you, I do. But it is nothing like being ill mothereffing constantly. Now, and now, and now, and now and. You want me to continue? 

Do I sound angry to you? I am. Actually, I am. I get it. Most people have never faced serious illness. They really have no idea. What gets to me is the assumption that neither do I. Me. Who have lived this for 11 years. What do I know, right? You can't see it on me, so the diagnosis I just gave you - with it's very real medical name in latin even - is just a thing I made up, because you never heard of it. Mostly though, I'm not angry. I'm desperate. Because this happens all the time. I cannot count how many times people have told me, that really I have a different illness than the one I just explained. Or how it's been so long since I got the illness in the first place, that a cure exists now (because what would I know right, of course I don't follow the newest research in my own illness, I must be ill still simply because I am too lazy to see a new doctor). 

At one point I stopped being surprised at how these are extremely common reactions. 

Here's a pro tip for talking with someone with chronic illness: If you feel that need to second guess their diagnosis or suggest what they should be doing to get well; don't. Just don't. Instead maybe realize they are not telling you this for sympathy. They are trying to explain a different world to you, so they don't have to once the illness take a turn for the worse and they literally can't. For me that turn can happen at any given moment, I have no way of predicting it. I talk about my illness to give people a heads-up. That's it. And to explain how being alone is as necessary as breathing.

In short: I know what I'm talking about. I know the research. I know the illness. I live it. 

I am not writing this for attention. This is not a cry for help. I write this because it is REAL. Because so often people like me with serious physical illness are met with the (possibly non-realized) expectation to be silent about this. It's not a topic for polite conversation. Who wants to hear about illness, when they can talk about the weather. If you talk about it anyway, most expect you're looking for attention. They simply can't fathom, your talking because this is IT for you, and that they are basically erasing part of you by skirting around the subject of bodily failure. And frankly I am done trying to fit into the polite little box of what abled bodied people want me to talk about so they don't feel uncomfortable. We are here, too. We have lives, too. They look different than yours. That doens't make them any less real. Actually I think abled bodied people need to be exposed to MORE illness. They need to realize that not everything can be fixed. They need to stop trying to change your reality for you so it fits better into a narrative of what life looks like; Sometimes life looks like hell. I don't benefit from you denying that to be real. I benefit from you being able to sit in it with me, realizing that right now, this is how it is. Deny it, and all you do is leave be to deal yet another day alone. Don't change, don't pretend, don't distract - just be.
 

My hand keeps going up to touch my forehead, involuntarily checking for fever. So much of this feels like fever. It’s not fever. I know it’s not fever. 

My teeth hurt. The pulse is down into their roots. 

I’m thankful no one is around. They would want to soothe me. But having them anywhere near me would mean having to do something other than trying to survive the pain. People in other rooms, who get it, I can do. But right now the voice of another human being would send me over the edge into the next, even worse, circle of hell. 

When they don’t get it, right now, just the mere presence of another body would mean the sound of heavy feet, the rustling of plastic from shopping bags, them talking to each other even in hushed voices that always get louder when they forget, the slamming of car doors, the turning on of lights, the beeping of cell phones, every single thing like taking a baseball bat and slamming it right through my scull and straight into the grey matter of my brain. Again, and again, and again. 

I hate the crying. But I hate even more how this takes me away from people.

I get how hard it is to understand that I can’t do simple everyday things. Like phone calls. How weird that must seem. It’s just the phone, right? No biggie. We do it all the time. That’s right, you do. Because you don’t have brain damage. 

How I do everything on my own. It looks like extreme independence. But really it’s just too much information for my brain to process to both relate to the person I’m with AND take in wherever we are. The movies are really bad. I need to focus so extremely much to handle that kind of information overload; the lights, the sound – always too loud, always too much, yes, even with ear plugs. Going to the movies WITH somebody? Even maybe doing something before that, like getting coffee with that person? It takes so much out of me, I have collapsed inside the movie theater. It’s not pretty. 

Trust me. 

Other things that are bad like this: An art museum, any kind of museum, the grocery store (even small stores, the size of the store is not the point), a farmers market, any new place, getting on a plane, going to a concert, the theatre, cities of any kind, high ways, starting to catch my drift?

In short: Civilization. Or rather: Humans. My brain just can’t.

My heart, though? My heart definitely can and wants to and miss doing all of this with people I care about. My heart miss picking up the phone. My heart miss people the second they are gone. But my head needs them to go before they even came. 

I’m a hermit with a commune kind of heart. Chew on that paradox for a second.   
  

Then put PTSD on top. Yes, it is not just soldiers who get that. It has been long proven. PTSD comes from trauma. Funny how the trauma of war resembles the trauma of war that is inside the abusive family for the mind of a small child. It changes the brain. That's just science.

These days, today, I live in the woods. Well, this month at least. Most of the time I am surrounded by nothing but natural sounds and light, and my eyes rests on nothing but the deep green of pine trees, the dark brown of dry soil. 

Even here I can’t sleep. When I finally drift away in the small hours of the dawn, I wake up in a startled panic half an hour later. Nightmares haunt me like childhood trolls under bridges. I try hard to exhaust my body so it will find sleep naturally. Doesn’t work. Just leaves me physically exhausted AND sleepless. Yes, melatonin is in my bag of remedies. Gives me even worse nigh mares. Sometimes that is the price I am willing to pay just to get some brain cell downtime. 

I always place myself where I can see all places a person could appear from, and all places I myself could find an escape. Always have. Still do even here, where I am as safe as I've ever been. If anyone comes around unexpected, my heart rates flies through the roof and stays there for hours.  Interestingly some of the symptoms of ptsd resembles those of my brand of brain damage. Like the sensitivity to sensory input. Being in nature in other words, helps. 

Ever wonder why war veterans so often disappear into the woods? Because in nature – alone - the brain gets some breathing room. Out here I see it clearly; it is the man-mad sounds, the man-made light that hits me the hardest. People turn the light up in a room: 'We can't see a thing!' and they might as well have taken an ice pick and jammed it straight into my eye socket. The light of a candle, or a wood-burning fire? No problem at all. Same with sound: The radio? Music in the car? A text message coming in on a phone? Like tiny pieces of burning coal being poured into my ears. The rushing sound of leaves in an autumn wind, though? No problem at all.

In the woods it’s also easier to make a fast get away should a threat appear. But mostly no threat appears. Because there are no humans around, and the hurt always comes from other humans. The ptsd brain knows this. Humans = danger. 

Paradoxically, I do believe that healing comes from other humans as well. But not any humans; The ones who don’t get it, will make it worse. The ones who truly get it on a level way deeper than text books, might make it better. At least for a while. The sad part is that the ones who truly gets it, are often the ones afflicted themselves. At least we have a band of equals stumbling together through the undergrowth of life impaired.  

Maybe really I'm writing this for you. For us. Not to explain to others, I have begun doubting that is possible at all. But to remind us. That this IS 'just' the body. We are more than that. But sometimes this body-shit just plain flat out sucks. And that is ok, too. We don't have to be brave and strong and all of that constantly. There are people who truly wants to help us. Sometimes it takes the strongest mind to accept a hand when you really need it.  

Then put chronic depression and chronic anxiety (yes, they are real diagnosis, no, I didn’t diagnose myself, yes, people have claimed they weren’t and that I did) on top of that. 

THEN put the double whammy of two separate personality disorders on top of that; anxious-avoidant and dependent (yes, they are real diagnosis, no, I didn’t diagnose myself, yes, people have claimed they weren’t and that I did with these diagnoses as well). The criteria for both sound horrible when read on internet pages. Some seem to cancel each other out. Most seem to suggest you’re a freaking nut case ready for a strait jacket. Here is how I see them – for me at least. 

Anxious-avoidant: The simple shaping of the brain to adapt to an environment where constant vigilance equals survival. The realization that the ones who were supposed to care for you where the ones who either hurt you or didn’t protect you from harm. And that what was said did not match what was shown. When that is how you grow up – it will leave a mark. Even in those who claim to the point of becoming aggressive that THEY definitely weren’t affected. As most know, that is an understandable, although not exactly healthy, survival mechanism in itself. I have come to know, that the ones most adamant about NOT being affected, are possibly the most affected of all. They often carry abuse too horrible to even see themselves.

Dependent: Where the first disorder will make you keep your distance, this one suggests extreme inability to take care of yourself. Not the case for me. Except when it comes to figures of authority. Around them I loose all sense of agency. ‘I’ am gone. Which obviously leads me to stay away from figures of authority, because around them, I do not function as an individual. Again pure logic. When you grow up like I did, a part of you simply crumble and disappear to survive when faced with the overwhelming towering demand for submissiveness from a parent. It’s a survival mechanism. Does not mean I’m crazy. The opposite – it means I lived. 

All of this together? It’s a mother effing miracle I have even minutes where I’m not completely falling apart in full blown, around the clock, panic attacks.

Call me ‘too sensitive’ or ‘weak’ or saying I ‘just need to get over it’? Respectfully: Come back when you have lived through a war. Then another. Then another. Then done it while being a child. Then another. Then another. THEN come back and speak to me about being weak. Or, you know, go fuck yourself. With all due respect. 

That I – and everybody like me – most days manage to brush my teeth and even take a shower (ok, not most days for that one) is a miracle of nature the scale of an old-growth forest. We deserve not just a medal but a monument for being heroes of survival, of being champions of life. Preferably not a monument carved, but one of deep, soothing silence in the middle of kind, gentle nature.

But maybe even more, we deserve that people around of, those who have never even been close to a reality like this one, stop assuming they know. And start respecting that we do. That they stop talking, and start listening. That they realize this is reality. Maybe they are simply scared at the discovery that it is. Maybe they can't deal with the fact that this might happen to them, too. Well, maybe not at this level, that would mean they would need to get back into their mother's womb. But that illness in general could happen at a massive scale even for them.

Now if I could only find the way to help my brain relax long enough to know the war is over. The war that tore me apart so young that it left this massive amount of damage - to be followed by so much more when I had finally managed to get away. The war that is a life up hill, dealing with things you are not equipped to deal with, even if you were a Navy Seal soldier in the trenches of yet another dirty war.

Maybe it's the body's way of whispering: Abuse is the prison, you carry with you. Except the door is always unlocked. You can swing it open and walk out any time. Although, mind you, that does NOT mean 'get over it'! That means that even when the actual abuse stopped happening, you will continue to see the world and yourself the way you were 'taught' to see it through glasses painted with the rotten color of 'survival'. Especially if that is how you grew up. You expect it, you know nothing else; You carry it with you. You become your own prison. I myself realized that I had become my own abuser at one point, expecting only ridicule, harassment and anger. And giving myself nothing but. 

It's no surprise that you land in similar situations again and again. Changing that, though, takes a force of nature. But it's possible, just like hurricanes are possible. And when you realize that - it's like the world suddenly sprung into color. You suddenly see that pain is not a necessary component of existence. Not all the time from everyone. You see that actually it's the exact opposite. You marvel when you discover that this is how other people live. That they mostly have days that are just fine. But the real breakthrough is when the realization suddenly comes into focus - that you get to live like that, too. That is when you know that the door to your prison is open. When you start to live like the war, that has been your life, is over, when you start to have days where you find yourself relaxing, even around people? That is when you know you have begun walking out of the prison all together.

It might take a life time. I am certainly not there. Maybe I never will be.

And then there is all of this on a whole other level all together. The knowing that none of this was ever real at all. The world is but a dream. How there is something else, something more, even behind the worst days. The knowing.

I knew it truly when I was around maybe 4. I was so afraid, I was not safe, I knew that if the situation I was in continued even just a few more minutes, this life for me would be over. In short: I knew I was going to die.

In that moment I also knew this: It was all ok. They could destroy this body. They could do the worst horrors to it. But they could never touch *me*. I was not my body. This was not it. I was something completely different.

Knowing *that* more and more? That is when you know, the door to the prison is not only not locked. It is not only not closed. You did not even just walk out of that door.

It never existed at all.

You were always free. You were always whole. You were always Love. The Light was always who you are and who you will always be.

Call it what you want, names really has no meaning there. God, the Source, Ba'ha'ullah, The Goodess. Whatever it is. It is all of us and none of us and everywhere. We are it. And it is beautiful.

I think pain is there to help us remember. It is a constant nudge, a constant question: Do you know? Do you remember? Are you awake?

While the fires are still burning in the forests of Oregon and hurricanes are dissimating communites the size of my entire country of origin, this is what will help us live through all of it: That one blazing light of who and what we really are, just behind all of this.

Chronic illness reminds you. Because you can't do normal life anymore. Your illness will pull you back from it. It will feel like a prison in itself - especially in the beginning. You compare your life to the abled-body ones. Until you remember, your path lies somewhere else. It's a life lesson in gratitude and happiness for what is.

That is how I survive. That is how I live. That is all that matter in the end to me: I call it God. Not the religious kind - just because it's easier to call it something. I walk with God. I want to do it more. I listen. When I do, this life becomes a dance, a song, a memory, already lived. And it is beautiful. Even when the light has the color of the apocalypse.