I write about things like this mostly because nobody was talking about these things when they happened to me. I want people who are going through similar things, and those around them, to have a frame of reference I never had. I also want to end the taboo that says only bad disabled people talk about our bodies and the things that have happened to us. The one that says all such discussions must be a plea for pity or attention. So if you get only one thing straight, it’s that this isn’t about getting sympathy, it’s about describing a piece of reality.

This is for the disability blog carnival. The theme is relationships. It might take awhile to explain how it fits into this theme, but I’ll get there in the end.

I have always experienced the world in ways that mesh up with neither language nor most people around me.

Body perception is one of those things. Internal sensations feel external. My brain also doesn’t prioritize them in the usual way. Once, when on neuroleptic drugs that only amplify this problem, this happened:

I was pouring water from a large bucket, onto an electric fence. I slowly realized something was different — no, bad — no, very bad — and hang on, it seems to be in the vicinity. And colored bright white, and… oh yeah, painful, and pain has something to do with my body (???), yeah it does, but where on my body, …, …, …, …, …, arm. My arm is a part of me. Let me turn my eyes on. Now look at my arm. Stuff on my arm. Stuff… water. Where is the water going? Fence. Electric… oh. Better stop this. Where’s the arm again? Got to move it. (Wait for those instructions to mosey down into my arm.) There. Phew.

But even without neuroleptics, connections like that can take even longer. I was lucky I was old enough to make such connections on my own at that point.
 
That level of detachment from one’s body can happen in autistic people and can happen as a neurological response to a kind of pain that’s existed as far back as I can remember feeling my body at all. So it’s hard to say if it’s one or both that caused that kind of thing.

So I am trying to give enough background information that when I start describing certain kinds of childhood experiences it will make sense. It’s hard because as usual the English language wasn’t built for the sorts of things I’m trying to do to it.

When I was a kid, I sometimes considered myself bad. Other kids didn’t scream, cry (the noisy out of control kind), or lash out when cornered by bullies. I felt like I was always in trouble. Even bullies got higher grades (and even sometimes awards) in citizenship. There was something about this that had little to do with social skills, though. I had no words for it, but in my head it was always connected to summer.

I experienced it as external. The sky existed, the black stuff on the ground existed, and the summer thing existed. Like the sky and the black stuff on the ground, the summer thing covered a wide area. But unlike them, it truly seemed to be everywhere.

It got a little less if I pressed body parts into cold, smooth surfaces. It got a little more if I was stressed out or having to process more information. But otherwise, the summer thing changed in ways I could never predict or explain. The worse the summer thing was, the more “bad” I was, and the less I could relate to people (including myself).

When the summer thing got bad enough, all I could do was cry or scream, or sometimes just sit there encased by it. My dad told me later that I used to scream or cry for no reason. My dad didn’t know about the summer thing.

Nearly always, I felt like I was cut in half. Half of me was in the clutches of the summer thing. The other half floated somewhere distant and numb. I tried my best to increase the numbness however I could. Half numb was better than none of me numb. I spent a lot of my “free” time finding ways to distance myself from the summer thing. When I had to use the most effective of those techniques in public, people accused me of having a creepy thousand-yard stare.

Not surprisingly, when I ended up in the hands of psych professionals they saw “severe dissociation”. They spent lots of time trying to connect it to physical abuse and molestation, but those things were barely a blip on my radar compared to the summer thing. Eventually they decided I was just biologically set up to dissociate easily and that I used it to deal with boredom. Even though in reality I was almost never bored and almost always the opposite — overstimulated and overworked.

The funny thing is that pain psychologists teach patients with severe pain the same techniques I discovered on my own. But when they teach it they call it adaptive. Every time I go for a nerve block, they have someone there to walk me through the same techniques my body discovered before I knew I had a body. Because severe pain is exactly what the summer thing is, and professionals consider dissociation under those circumstances more adaptive than pathological.

When I was 15, the doctors put me on Neurontin for seizures. This made the summer thing fade a fair bit. Either I couldn’t describe it well, or they didn’t know Neurontin treats several kinds of nerve pain. Because they told me if something went away on Neurontin it must be a seizure.

When I got off Neurontin, the summer thing came back and pretty much stuck around until my early twenties. At that point I’d spent three months mostly writhing around on the couch before a friend said “This is how pain makes a body act, go to a doctor.”. I went to the doctor and she put me on Neurontin pretty fast, which helped both the pain and the seizures. I’m now on a Lyrica/Trileptal combination that deals with the summer thing, the seizures, and trigeminal neuralgia all at once. But even once I first got on meds, the spot that had formerly occupied “1” on the 1-10 pain scale now occupied a “6”. Which is a huge change.

It was only after treatment I could begin to either describe the summer thing itself, or differentiate lots of smaller pains that it blocked and distorted. Synesthetically it’s dots and streaks of brown, orange, yellow, and white. And what it feels like? Burning, both burning hot and burning cold (like I’ve been told liquid nitrogen feels like). And prickly. And like my skin has been scraped raw, gone over with sandpaper, and then sunburned. Hence “summer”. And like… if I had heartburn, for instance, instead of feeling just the heartburn in one spot, I would feel like someone had put an iron on my entire upper back that was red-hot and ice-cold at once. I only got treated for a lot of other lifelong conditions after the summer thing had been treated enough to feel them.

From what I’ve heard, even people who never had pain or communication problems before developing something like this can find it hard to describe. They’ll end up describing limitations on their functioning, or use torture metaphors, instead of describing pain. Because pain that they are used to feels like a whole nother category than this. It just doesn’t feel like it ought to have the same word. So maybe as a person who never knew life without it and who had communication problems I can be excused for not even knowing I should describe it, let alone knowing how, until that first dose of Neurontin made it lessen.

What’s the actual name for the summer thing? From my descriptions, people have told me it’s some kind of neuropathic (nerve-related) pain. But whether it’s originating in my brain or somewhere further down the line isn’t something they can tell with current tests. And since it began so long ago, nobody knows if it’s a function of an injury, or the way my brain or nerves happened to grow, or some early neurological response to overload, or what. It’s also important to realize it’s not gone. It’s just less than it used to be.

Now there’s enough background laid out that I can talk about how this thing has affected relationships, which is the whole point of this blog entry in the first place.

The first relationship the summer thing interfered with is my relationship with myself. On both a psychological and physical level. How do you form a relationship with yourself when the more connected you get the more it hurts? I spent most of my time trying to edge as far away from myself as possible. One of my early memories involves trying to imagine the world without me in it, and getting aggravated that no matter what I imagined I was always the one imagining it. If I got anywhere near my body or mind I would get overwhelmed by this blast of pain and retreat if at all possible.

If I picked up a Lego block, my hand felt a burning, scraping afterimage for hours. Touch from humans created a different afterimage. Sometimes I would put up with these things and sometimes I wouldn’t but it was never without a price.

When pain gets severe enough, it does weird things to your thoughts and feelings. A lot of the anger and fear that made me “bad”, stemmed from the summer thing. The only way I could get calm was by identifying with my numb side. And the problem with the numbness was that it went away the moment I felt into my body to either move it or interpret what was coming through its senses.

So imagine I am lying curled up in bed, losing myself in the dark brown bedrail. Then someone comes in and wants a response. If it’s a good day, I may be able to imagine the response without any unpleasant feelings attached. But even then, most of the time I ended up snapping at the person for no good reason they can see, and for no reason that I can understand. Predict, yes, but understand, no. I often did an aggravated hiss my mom called “lizard breath”, but I wasn’t in much position to understand or explain the irritability. (And pathologized as I was sometimes, I shudder to think what a modern therapist would have diagnosed the irritability as part of, or treated it with. I have some good guesses.)

So I end up becoming a really grouchy person with no idea how to avoid being grouchy, and this becomes one more thing to hate about myself. As usual at that point, I had no idea how other people avoided snapping, stomping, hissing, growling, and generally being disagreeable. And knowing I was. And not knowing why, or how to avoid it.

I also learned an awful kind of strength. I was always expected to do things people in that level of pain don’t normally do. And even if I did not learn to do those things, I learned to exceed the expectations of someone in that kind of pain. I didn’t think I had a choice. When I failed, I beat myself up harder than anyone. I learned to push myself until collapse.

To this day, this makes it hard to admit when something is wrong, pain or otherwise. The stuff I do admit to is the tip of a large iceberg. I try to talk about these things because I believe it is very wrong to teach people it’s wrong to discuss them. But I am fighting the training that taught me to press on no matter the difficulty. Because the result of pressing on is almost always dangerous, sometimes deadly. Even though I know this, it is almost always other people who threaten and cajole and drag me to the doctor or hospital when something is wrong. Because growing up this way has also messed up my relationship to my health.

The summer thing also sometimes has made me seem weak, not strong. Those times when I could do nothing other than curl up and cry, or hit myself, or zone out as far as I could. Try explaining that when you don’t know what’s going on, and don’t know fully how to connect words to experiences. That one affects relationships by convincing people you are weak-willed or bad somehow. And so do you because you don’t understand the forces behind these problems. Especially when it’s always been there so it’s just scenery.

“Answer me. Why is she lying there on the ground? I’m serious. What are you two up to? I need an explanation,”

(My body had taken over and I was pressing my face and arms into the cold concrete. I kept hearing these high pitched sounds that turned out to be my own voice sort of wailing. And I wouldn’t have had an explanation that would satisfy those guys even on my best day. And how was the person with me supposed to handle always being called upon to explain me? He reads this blog sometimes, so at least he can find out.)

Years after that, I was in a similar situation and eventually asked a friend why my body kept acting like it was in pain. She responded that my body was in fact in pain, and that the reason I didn’t understand my own reactions was the dissociation that goes with severe chronic pain. And that nobody who wasn’t in pain would ask that question. Wish I had had people like that around as a kid.

This of course affected sexual relationships as well. Touch in sexual contexts can temporarily diminish the pain a bit (and a lot of other things, according to a book I’ve read on the science of sex), but only to a point. Try to push anything into the usual orifice, and my reaction is more like a scared wild animal than a sex partner. As my only sex partner found out the hard way.

It’s affected my relationship to any activity I do with my hands. Many activities I used to think I just didn’t like, were things that made my hands feel scrapey for the whole day afterward. Lego blocks are only the first of a long list of things that seemed great until I touched them. It’s why I never use my Zometool set unless company wants to, why I finally got rid of the things.

The summer thing has also created a certain kind of distance in all my relationships. When I am in the part of myself that feels more pain, the pain fills up my head and creates a wall between me and whoever I relate to. When I am in the part of myself that floats at a distance, the floating creates its own distance. This effect has lessened with medication, but it’s still there in some amount no matter what is going on.

Many of the effects on my life I have talked about, are things that other conditions have affected as well. It’s impossible to know which has contributed how much to what, and I have not even tried to work it out. And while I cam sit here and list off things it’s affected, I don’t generally sit around feeling morbid or morose or melodramatic about it. Everyone’s life has constraints on it, mine are just not the same as the usual ones. It doesn’t make me pathetic or pitiful. It just exists and always has. I don’t have to like it, but life’s too short to wallow in misery about it, so don’t get me wrong about my reasons for writing about it.

When I think of relationships the summer thing has affected, it’s hard to think of anything it hasn’t affected. It’s affected my relationships to my mind, my body, my emotions, my family, my friends, people in general, anything or anyone at all in my environment. It’s made it so that my two main vantage points in life have been either scraped raw and affected painfully by any sensation, or else floating numb but too far distanced for direct interaction. It’s a good example of how a condition that isn’t technically supposed to be pervasive, can affect just about every conceivable part of my life. Even though I take every effort possible to diminish this kind of pain, like all events that have left such an intense mark on my past it is something that I have a hard time knowing who I would be now if I hadn’t grown up with it. Life is too complicated to know things like that, and it doesn’t make much sense to ponder an unreality that much.

So that is more of the history of the summer thing than I have ever written. I have gone into pieces of it here and there, but never gotten as much detail as I have just now. And it reminds me all over again how complicated life is, because there is no way to write about everything on even a topic so narrow as nearly thirty years of a very particular condition, let alone any other topic a person might write about. Experience always has more depth than words can (if they are used in even the best way) just point at, even a few seconds of experience. Not that I ever really forget this, but tasks like this one bring it home. And finding anyone with similar experiences (not just to this, but to anything) can create a level of intense resonance that renders words unnecessary after a point. Having almost no such resonance until I was an adult, is why I bother with the task of pointing at experiences in words, and working for years just to get some of them out at all — so that anyone with similar experiences might find such kinds of resonance (or find the words and tools to express it to others), and anyone who knows anyone with such experiences can understand them a bit better. And it works even though no two people can have the exact same experiences. And things like this are how I have formed some of my most rewarding relationships despite the distancing effect of the summer thing. It’s like even if pain sometimes forms a wall, this kind of resonance makes it possible to perceive the other person without having to scale the wall itself. And having those few but invaluable relationships gives me the will to scale that wall in relationships where there is no such shortcut.