I want to start out by explaining what this is, and what this is not. Blog carnivals tend to bring in unfamiliar readers. People tend to misunderstand topics like this one. So here goes:
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.
Ballastexistenz 
It’s important to have that frame of reference.
No wonder pain is a four-letter word.
I find it [can’t find word here] that people said you dissociated, and that you were biologically predisposed to dissociate. When the summer thing meant you could not escape your body.
And resonance is a big thing. It is connected to sound and feeling.
And the scrapey hands.
I remember you wrote an earlier post called Forgetting something is ongoing.
Once again I am really struck by how much I appreciate your writing. I have no experience even in the same universe as this, but you write in such a way that I can begin to understand something totally outside of my own experience (I suppose being in labor is the closest I’ve gotten to this kind of pain, but it still is nothing like this as I knew why I was feeling the pain and it had a known end and a good purpose). Thank you so much for writing about these experiences. That resonance you write of is so important, and I love that you are creating space for others who may not yet have the words you do to recognize themselves and their experience–to know they are not “bad” or alone or pathological–and that you create space for those of us who would otherwise have no way of understanding to understand a bit more and thus to seek to create a world that does not pathologize and punish those who seem different or outside of our limited understanding.
I’ve been wrestling lately with the same question of how to see and respond to what has always been there. It’s come up for me lately around the issue of speaking. A few weeks back, I made the mistake of trying to have a couple of 5-10 minute conversations at my volunteer job and came home with every joint and muscle in my body hurting like hell. It was like having a really, really bad flu. I now talk only to members of my family, my autistic friends, and NT friends who are willing to slow down and follow my thought/speech patterns. When I go out into the world, I block my hearing almost completely and speak as little as possible.
My therapist, in good therapist fashion, keeps trying to get me to “modulate” and keep track of when I can talk more to people, and when I can talk less, all with the aim of decreasing my sense of isolation. What he doesn’t seem to understand is that I have no idea of when I am overdoing it until it’s way, way, way too late. In fact, until this week, I had never seen what a strain it has always been to speak. The minute I open my mouth, I’m already overextended. I’ve just gotten so acclimated to the strain over the course of 49 years or so that it feels perfectly natural and entirely familiar to push myself past my limits in order to talk.
I’ve started to wonder whether I speak out of habit or because I really want to. Like a lot of us, my speech was delayed when I was a child, but when I started speaking, I burst into hyperlexia. It’s pretty apparent to me that I have an “off” and an “on” setting, and nothing much in between.
I remember the pain. Not the same as yours but the feeling like I was swelling, pushed outward to the limits and I would burst open any second. I too hid from it, walled off my mind from it. It made me the “good child”,the quiet child, the child who never caused trouble, who never annoyed the grown-ups, the example for the other children. I try to explain what it was like to other peaople, the constant pain for the first 10 years, but it mystifies them. My mother shakes her head and keeps saying what a happy child I was because I never cried. I still feel it, but it is background now, more like a buzzing in my ear than my primary sensory reality. But it means that where I stored all the other pain too. I don’t know when I am sick. I have to think hard about describing pain to doctors and nurses when I my symptoms indicate there should be pain, because first I have to remember what that feels like and connect to it, then I have to peel off the layers of pain like those anatomy diagrams with the plastic pages to find the one they’re asking about and analyze the quality, level, etc. I’m glad your pain is better. Thank you for sharing your experience.
What you describe sounds quite a bit like something I go through. Mine is not as disabling – I “press on” always, though I keep expecting that one day that ability will break down (it has not yet so maybe it won’t ever). But I once described the physical sensations I go through as “cool fire” on my skin. “Sandpaper” and “sunburn” are also accurate. However, compared to typical pain, the physical sensations are more ghost images.
When I get what the occupational therapist refer to as “deep pressure”, it helps a lot, especially if it’s from someone I trust. But then that tends to lead to more sexual situations, which I don’t mind except that I do tend to have the “usual orifice” problem. I keep trying to find a way to explain to guys what I experience, but it’s not possible when someone doesn’t go through it and they’re not interested in understanding anyway. I’ve been in many situations where I was told “it ok if we just cuddle” but it’s just an excuse to try to get me to have sex with the person…There is just such a *huge* difference between the way I process general pressure and point pressure. I’m a compulsive petter of pets, since they are “safe”.
I don’t think I’ve experienced a chronic version of what you are describing here but my relationship/experience with pain in general is kind of similar. In that I have never really been able to tell that pain is pain from the immediate subjective feeling of it, unless I’ve literally seen the cause of it (like, say, getting my fingers slammed in a door). My best friend from high school still remembers when I used to go around saying that I “never got headaches”, which she and others thought was strange. Only as it turns out I DID get headaches, I just didn’t (for years) know how to recognize them.
Whenever something IN my body did something to cause pain, my “experience” of this was usually a combination of a vague “bad” feeling that I generally attributed to something else (such as “stress” or “psychological problems”), and finding myself *doing* (or not doing) things that I could not explain or understand.
The worst case of this was when I injured my back in college (by carrying a too-heavy backpack over a period of months). Initially when (what I later realized was) the pain started I thought I was just in a bad mood “for no reason”. Then when I started getting muscle spasms I attributed that to “anxiety” (but also worried that it might be a brain tumor or something really serious). When I could not even sit down at work (I had a part time internship then) I went to the health center, where I proceeded to pace in circles and hyperventilate. The nurse there told me that I was “just stressed” and wrote me a “prescription” to take more breaks. It was not until a few weeks after that that I even connected any of this to anything in my back — basically one day I got off my bike, tried to pick up my backpack, and simply physically could not do it.
That clued me in to the fact that my back felt “weak”, and then it was like HOLY CRAP OW, that is PAIN! And of course it still took me weeks after that to actually go to the doctor, by which time I could barely walk without falling down. Turned out that my back muscles were swollen up and were pressing on nerves in various places, which accounted for the spasms and weakness and pain.
Anyway, all that said the thing that really stands out to me here is that the only way I found out that the pain was happening was through external things. Like I could not experience the pain as pain until I actually saw my body doing things it didn’t normally do (like twitch uncontrollably in places) and NOT doing things (like picking up backpacks) that it could normally do. And it took a whole ton of data-gathering for me to recognize that these things were both connected and significant, and only after I had “conclusive evidence” that something was indeed wrong did the recognition of pain occur. So I guess at least now I know to watch out for that kind of thing, and I wish for the sake of people whose sensory/perceptual system works this way that there was more discussion of this sort of thing. And that there was less of a push to attribute “strange” movements or lack of ability to do things to laziness or “psychological issues” or “attitude problems”.
Oh geez yeah. I had a back and neck problem around the same time period in my life. And I was doing things like writhing on the floor and moaning. And I seriously thought I was just weak-willed until the problem either recurredvor got worse a couple years ago and went “holy crap, that’s PAIN.”. I think I discussed it in a rant I wrote about both traditional and alternative doctors, because the one doctor I tried to describe it to made me bend over and told me my back was way too flexible for pain. When in fact my hyperflexibility may have been one of the causes. Facepalm.
Thanks for writing this.
The realization has recently crept up upon me that my own ability to “recognize” things like pain or other forms of physical discomfort, such as too much heat or too much cold might be slightly “off” compared to the general population. It’s not as extreme for me as it is for many of the people posting here. But I remember when I was little, I never recognized the sensation of feeling “tired.” I only started to recognize what it felt like to feel “tired” when I was in my teens or thereabouts.
One time I was in an office that was a little too cold. Except that, for days, I didn’t notice that it was too cold. I only figured it out after it dawned on me that, every time I washed my hands in the nearest bathroom, I tended to leave my hands in the running water longer than I needed to. See, this faucet was broken in a weird way that meant it kept producing warm water, never cold. And the warm water felt so good to my cold hands that I didn’t want to take them out! Then after that, I started feeling (or, more precisely, noticed or recognized my feeling) cold in my office.
My partner often keeps our bedroom warmer than I like. But it often takes me hours to notice that it has gotten too warm for my comfort.
Andrea S.: oh yeah, temperature is definitely another place where body-awareness weirdness can come into play. I used to get what I assumed were “panic attacks” every so often, up until my mid-20s. In which I would experience things like shortness of breath, sweating, rapid heartbeat, etc. But then one day when I was starting to experience one of these “attacks” my SO gave me a drink of water and had me remove my jacket. And everything went back to normal. It was then that I realized what I’d been attributing to “panic” was really just my getting overheated/dehydrated and not realizing it until it was really obvious.
I have not had a single one of those “attacks” since this was pointed out to me, which is great, but I have to wonder why it took 20+ years for anyone to figure out I was not just “randomly anxious about nothing” but actually too warm and not drinking enough water!
I have the same difficulties with noticing temperature. I was just visiting a friend and it took me over two hours to realize that she kept her apartment about 10 degrees warmer than I keep my house, and so I was overdressed and sweating. And it took me even longer to realize that I could shed layers in order to get cooler. And I didn’t, because I was afraid I’d be too cold, despite the fact that my friend was wearing a t-shirt.
I only learned the difference between hunger and thirst about 5 years ago, in my 40s. And the only way I know that I’m tired is that I lose my ability to think linearly–which is very confusing, because I don’t think linearly the majority of the time anyway!
Yeah I can reach the point of nausea from heat exhaustion without understanding what is causing it until someone let’s me know.
My internal sensory awareness is generally pretty good (I think), though sometimes I don’t know I’m cold until someone ask me if I am (b/c I’m shivering). But to took me a long time it figure out that the reason button-down shirts make me nauseated is that they poke me in the chest and it hurts. Also, took a long time to figure out that other people don’t feel pain when they are tapped.
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