The ghost and the machine

It’s all about your perspective – “Ghost in the Machine” by linnsetane

I had a pretty good weekend — no, I had a pretty phenomenal weekend. I had an exquisite balance between body, mind, heart, and spirit, that I haven’t felt in some time, and I actually felt like myself.

Again.

It’s been a long time, since I truly felt like myself. I was reading and studying again, doing some journaling. I did chores around the house and cleaned up outside. And I was out in the woods a whole lot, with naps in between.

I didn’t “accomplish” some of the goals I set out to do, but you know what? I don’t care. I feel really solid, and that matters more than any external goals I set for myself. On Fridays, my weekend goals seem so terribly important. But by Sunday morning, I’ve “rearranged the furniture of my interior life” and a whole new set of priorities come out, which are a lot more life-giving than the ones I identified on Friday last.

It has taken me a long, long time to get to this place. I have been “in the woods” in a not-so-good way for many years, and at last I’m at a really stable place, where I’m not all over the map for no good reason.

Now, in some ways, I still feel strange to myself. But that strangeness has actually become an integrated part of my life now. See, the thing is, I don’t just see myself as a person whose character is set in stone — and that’s it. I see myself now as more of a person whose character is constantly developing along certain lines that are “me” — it’s not the particular details of how I’m feeling and what I’m doing, that make “me” the person I am. It’s actually the process I go through to get where I’m going, that makes “me” the person I am.

For example, I am usually in pain of some kind or another. Either I have a pulled muscle or I have a headache or a backache or joint pain. I literally can’t remember the last time I did not have some kind of pain — and this goes back to my childhood, when I had a very rough-and-tumble kind of life and I was usually getting scuffed up or knocked around by someone or something or other. I was extremely sensitive as a kid, and a lot of times, if someone touched my arm or my back, it felt like I was being hit. It stung like fire ants or burned like fire or it felt like someone had me in a vice and was twisting. Being young, I couldn’t really explain it. That’s just how it was.

And when I was younger, because of that, I felt like I was always being punished. Because when you were really bad, you got hit or paddled or yanked around by an adult. And that hurt. But I wasn’t being constantly punished — I was just having that kind of experience without any connection with reality. My body didn’t realize it, and my mind couldn’t process that.

So, I’ve had this complex — pretty much my entire life — about being a bad person who needed to be punished.

Well, now that I know more about my situation, that’s not burdening me anymore. I know that my sensitivities are connected with how much tension I’m feeling — when I’m tired or stressed or upset — and they’re not about me being a bad person who should be punished. Pain is happening because I’m doing good things — not bad things. Pain is a sign that I am genuinely trying to do better and be better.

It’s like after a hard workout. Your body is absolutely wracked for days on end, while it recovers and gets used to the “new you”. It’s not a bad thing — it’s a by-product of a good thing, and it will totally be worth it in the long run.

So, I have a completely different view of my pain, these days. And I have a very different attitude towards my experience. Thinking of my pain as the result of me pushing harder to be better, makes the pain about me being driven to be better. That’s a far cry from the old way of thinking and feeling — which was all about me being bad and deserving to be punished.

It’s kind of a “no pain no gain” mentality — “pain is weakness leaving the body” and all that.

So, while I don’t feel physically peachy-keen, most of the time, which at times makes me feel really terrible about being in my own skin, the way I think about feeling crappy has actually restored some of my sense of self. Rather than the pain meaning that I’m deficient, it means that I’m genuinely trying to do better, that I’m motivated and really trying. Waking up today with a headache and fatigue means that yesterday I wanted to be better, and I did something about it.

It’s not about me being in an ideal state at any given point in time. It’s about me being in the middle of a process of improvement that is taking me towards a variety of ideals which I can experience at different points in time. Life isn’t always going to be perfect. Where would be the challenge in that? In fact, it seems to me that the more “yourself” you are, the most challenges you’re going to face, because life likes to keep us guessing — and so do we. I have seen so many people unconsciously create situations that get them in trouble, and I’ve seen so many “good” people dragged into complicated messes, that after close to 50 years of wondering “WHY?!” it’s all I can figure.

Being a good person doesn’t mean I’m going to have all good things happen in my life. It means I’m going to have plenty of opportunities to create more good in the lives of myself and everyone around me, no matter what the circumstances.

And that goes for TBI. Lemme tell you, it has been one tough motherf*cker, getting through this, and in a lot of ways, I feel like the “old me” is gone for good. But the “new me” — or maybe the “real me” that I never recognized before — is not so much about being a certain way in certain circumstances, thinking certain thoughts and having certain feelings about things. Maybe the “real me” is actually a dynamic personality who is constantly learning, constantly changing, constantly leaving the old behind.

I think that once upon a time, I knew this. I cleaned out my study, over the weekend and found some old journals from 20+ years ago. Back when I was still wet behind the ears, I had this amazing capacity for fluid adjustment. I think because everything around me was changing all the time, and the multiple TBIs messed with my head so much, I realized that it was pointless for me to try to hang onto anything for long. But then I “grew up” and got all adult-like and what-not, and for some reason, I had it in my head that “I” was a certain way, and that “I” wasn’t going to change.

How strange.

It got worse after my 2004 injury — my thinking just got so rigid and fixed and brittle. And now that I think about it, that “self” that I felt I had lost… that “self” may have never even existed, because my thinking was so one-dimensional and fixed. I had this vision of myself in my head that was distorted and confused, and for some reason, I thought that was “me”.

It was like going into a funhouse and looking at all the mirrors, and then deciding that one image of myself I saw was THE REAL ME, and I invested all kinds of energy in hanging onto that distorted image of myself. Even though it was as far from “me” as you can get.

So, this weekend, it was all about the process. All about loosening up, all about cleaning out dusty spaces and getting things in order. My study is still in some disarray, but that will change. Gradually, I’ll work my way through — one shelf at a time. And by this time next year, there’s no reason to think that it won’t be in decent shape.

Truly.

So, that’s the result of my great weekend. It felt so good to just let go of the Friday-fatigue-flavored expectations of last week and just let things flow. Letting things flow didn’t get me “off course” – if anything, it let me get some rest and more inspiration for the coming week. Now I’m coming back to my work week with a renewed energy and a better understanding — the machine of my life is just that: a machine. But it’s the ghost that does all the driving.

Can you tell Halloween is coming? 😉

Onward.

Don’t forget your sunglasses

Summer is here. That means the days are getting longer and the sun is getting brighter. It also means you may be getting less sleep than you did over the winter, so you might be more susceptible to stress.

If you’re like me, really bright light for a really long time is very stressful. And if you’re like me, the more tired you get, the more you’re affected by that stressor. And that makes me anxious. Agitated. Prone to freak out. Not good.

If you’re like me, you’ll make sure you always have your sunglasses with you. Even if I’m just stepping out for a quick errand, I try to always put on my sunglasses, because I’m never sure what I’m going to encounter along the way — bad traffic, mean people, unforeseen events — that might throw me into a tailspin.

The last thing I need, is being unnecessarily stressed by the bright light.

So, I make sure I wear my sunglasses.

The perils of pseudo-psychological problems

Something has occurred to me repeatedly, over the past month, as my sleeping habits have improved. Namely, that many of the “mental health” issues I’ve been experiencing over the past several years, have had a distinctly physiological component to them. In fact, at the risk of sounding radical, presumptuous, and heretical – though I’m seldom reluctant to be just that 😉 – I suspect that a ton of my “psychological” issues have actually been physical ones.

I’m sure I’m going to really piss off some of the psychotherapists in the room by saying this, but I have to say that catching up on my sleep and figuring out how to get a full night’s sleep more than one night in a row, has done more for my mental health than two years of therapy.

And no, I did not have a bad therapist. They were great – awesome – and they really helped me a great deal, if only by sitting there and not making fun of me when I talked about this and that.

But let me tell you – as a TBI survivor who had/has a whole raft of physical ailments (chronic pain, insomnia, sensory hypersensitivities, weight fluctuations, heart palpitations, vertigo, tinnitus, and more…), just living with all those issues can really mess with your head. And as long as only the symptoms of my physical distress were being addressed, not much moved.

I did get in touch with my feelings. That’s for sure. I figured out that I actually mattered, and that it was important for me to take care of my own health and well-being, not constantly do the martyr-hero thing and sacrifice my own safety for the sake of others. I had space to learn to look at myself and my life through a less negatively critical eye and consider that maybe, just maybe, I had a right to do more that survive in life. I had/have a right to thrive.

But one of the things I really got in touch with was the fact that my physical well-being is a huge contributor to (and predictor of) how well my mental well-being holds up. When I’m tired and in pain and weak, my ears are ringing like the dickens, and my head spins wildly and I feel like I’m going to fall over every time I move, it’s pretty damned difficult to maintain a positive mental outlook and count my blessings. When I’m not feeling well physically, the chances of me feeling well mentally and emotionally decrease exponentially.

There are some people who manage to keep a cheery, chipper outlook, despite significant physical issues. I’m usually one of those  people, and I usually manage to not let my physical problems bother me. But when I haven’t had enough sleep for weeks and months on end, chances are pretty good that I’m going to feel depressed, anxious, irritable, low — and show other signs of clinical depression.

Okay, so here’s the thing — when I was in therapy with my prior therapist, they repeatedly came back to the suspicion that I was depressed. They asked me a number of times if I thought I was depressed, and if I’d said “Yes,” I’m sure they would have followed up on that, however a therapist does that. And they probably would have plumbed the depths, looking for what it was that made me depressed — some repressed past trauma, some childhood violation, some incident that I’d blocked out to keep from being unhappy.

And lots of talk would probably have ensued. Talk, talk, and more talk.

Now, talking is all very well and good, but as Belleruth Naparstek said at a conference I once attended (and I believe she’s said in her book “Invisible Heroes”), sometimes talking does more harm than good, by dredging up old traumas and forcing you to relive them. That can be very unpleasant, as I’m sure everyone is aware. And for me it’s really problematic, because I prefer to dwell on problems with a solution in mind, and if I’m dwelling on a past incident which cannot be changed (it’s already over and done), I get even more agitated and irate over it.

Some people might say that I’m just not willing to deal with the emotional fallout of misfortune, but I say I’m a solutions-oriented individual and the main reason I think about things, is so that I can change them, so why in the hell would I spend all this time thinking about stuff that cannot be changed? The therapists in the room who would say I’m emotionally “blocked” would probably try to treat me… with more talking about shit that makes no sense for me to talk about.

Make no mistake — I’m not at all reluctant to discuss misfortunes I’ve experienced in the past. But any discussion that takes place with me, has to be about devising solutions and coping mechanisms for the problems I have as a result. I’ve had some really shitty things happen to me, but you know what? It’s over, and I’ve managed to forgive just about everybody in my past for their shortcomings… even myself. The problem is not that I’m represssed. It’s that people want to process the wrong type of stuff with me — problems, problems, and more problems — and my reluctance to discuss stuff I’ve already been through a thousand times in my head is interpreted as repression or avoidance or some other psychological/emotional impairment.

What’s more, when pressed to explore the nether regions of my soul with talk therapy, I tend to get turned around. As good as I am at writing, I’m can be kind of pathetic when it comes to spoken conversation. I have an intensely visual mind, which follows conversations and spoken communication with series’ of images that are like an associational, disjointed movie in my head. I literally see pictures of what people are talking about, and when people start talking about things for which I have no picture — or I have several of them to choose from — it takes me a while to catch up and keep up. It’s not that I’m stupid. Or that I’m slow. I’m just incredibly visual in my own mind, when it comes to spoken language, and visual processing doesn’t lend itself as well to spontaneous conversation.

So, when I’m talking to someone about what’s going on with me, and they start talking about things that aren’t immediately famliar to me — or that I’m not expecting them to talk about — it’s really easy for me to get agitated and introveted. I need time to catch up. I need time to keep up. I need time to translate their words into pictures and process the information visually, so that I can make sense of what they’re saying to me. But I don’t always have that much time, and over the course of my life, I’ve gotten into the bad-but-pragmatic habit of just pretending I know what’s going on, while making mental notes in the back of my mind about what was just said, so I can go back to it later and rethink it all and hopefully make sense of things.

The problem is, in a therapeutic situation where I’m supposed to be making some sort of progress and addressing issues, this really works against me. It tends to make me look reticent and/or like I’m deliberately withholding. I’m not — I’m just trying to process the information and make sense of it. Believe me, if I could answer immediately like other people, I would. But my brain just doesn’t work that way.

I also tend to get really frustrated with myself and get agitated, which looks like I’m uncomfortable talking about certain things. It’s not that  I don’t want to let other people in. I do — more than I can say. But I get so turned around in my head, and I get so upset with myself for not being able to follow, that I start to flail and spin and then shut down. I feel like I’m getting backed into a corner, and I get revved… and by the end of the session, I look like a totally basket case who needs to spend years sitting across the room from someone, before I can get in touch with my feelings.

This sucks on so many levels, I can’t even begin to tell you. The worst thing of all is having someone who is supposedly trained and experienced in these matters misunderstanding, miscalculating, misdiagnosing, and mis-treating conditions which don’t even exist the way they think they do. On the surface, you’re exhibiting classic signs of clinical depression and post-traumatic stress disorder, but underneath it all you’re struggling for words that will explain exactly what is going on with you, and why you’re acting the way you do. And the bitch of it is, because you’re the (sick) client and they are the (trained, experienced, licensed) therapist, you’re not in a position to be taken totally seriously when you do manage to tell them a little bit about what’s up with you. ‘Cause they think you’re seriously mentally ill and you can’t possibly know what your real problems are.

After all, you probably have no recollection of what that nasty-ass uncle did to you as a toddler when your mother’s back was turned.

It’s a problem. I hear plenty of stories about therapists who don’t know  what they’re doing… as well as those who know very well what they’re up to but have no scruples or morals. I hear plenty of tales about over-prescription of medications, as well as  misdiagnosis of mental health issues that have more to do with fundamental differences of information processing, than pathology. The mental health profession has been pathologizing the diversity of human experience for as long as it’s been around — perhaps that’s a hallmark of any helping/caring profession that’s trying to get on its feet. Applying labels like “hysterical” or “deviant” or “sick” to people who are just different from the norm is a time-honored tradition in the mental health field, so there are no surprises there. But it’s a problem that’s been shifting and changing over the past 30 years, and that’s a good thing.

Now, if I can figure out a way to explain to my new therapist the nature and degree of my physical issues, so they can see my issues in light of my insomnia, pain, and physical sensitivities… and not spend an inordinate amount of time focusing exclusively on my past emotional trauma, that will be a good thing.

A Perilous Relief – The Physical Backdrop(s) of My Risk-Taking Behavior(s)

At the risk of sounding like I’m sitting around feeling sorry for myself, let me tell you about my physical experience. I don’t want pity, I don’t want clucking of tongues, I don’t want you to feel sorry for me. This is just my experience, and I’ve acclimated to it over the years. But I’d be lying, if I told you it’s easy…

To fully appreciate just how my risk-taking and danger-seeking constitute attempts to soothe my overworked physical/mental/emotional system, you’d have to understand just how anxious, sensorily overloaded, and painfully sensitive I tend to be. And you’d have to understand the impact that repeated injuries, including head injuries, have had on my everyday life. I have, in fact, sustained numerous mild traumatic brain injuries since age 7, the experience of which is consistent with my sensory and other physical issues. (See http://www.traumaticbraininjury.com/content/symptoms/mildtbisymptoms.html for a list of mild tbi symptoms.)

All my life, I have had issues with pain and handling sensory input. As a child, I had a hard time differentiating between different sounds, but at the same time, my hearing was very sensitive. I was very attuned to fine details, and I was highly distractable. I experienced touch as pain, which caused many forms of regular human contact to be uncomfortable, even painful for me. I was not very limber, I had trouble touching my toes, and doing exercises like somersaults was difficult. Cartwheels were out of the question. I was an active child, and I loved to climb and play and join in with games, but my coordination wasn’t always the best, and I was often picked last for team games in school.

I loved to play sports, but I didn’t have a very broad range of abilities. For example, I loved to play softball. I loved it so much, that I wanted to become a professional softball player, when I grew up. Baseball didn’t appeal to me, because having a small, white object hurled at me scared the bejesus out of me. I had a hard time judging distance and speed, and the larger, softer softball wasn’t nearly as frightening to me.

There were a couple of problems with my pro ballplayer aspirations, though. The first was, I had a hard time catching fly balls. When my dad would practice with me and hit flies to me, I couldn’t judge the distance to the ball, or I shrank away from it in fear. My preference was to let the ball drop and then pick it up and throw it to another player. But that kind of choice-making in a serious ball game would have cost my team dearly.

Playing the outfield was not an option for me.

Sliding was out of the question. I was to hesitant and too gawky to do it very well. And the pain that came afterwards was inhibitive, whenever I considered sliding.

I couldn’t react quickly enough on the spot to play shortstop.

My coordination issues kept me from being a very good baseman. My reaction time wasn’t consistent, and my ability to catch and tag wasn’t very good. I wanted to play shortstop, but it made me too nervous, and I couldn’t think and react quickly enough to make a very good player at that position.

I made up for all this by throwing myself wholeheartedly into the small range of activities I could do well. I had too much trouble with fielding and reacting quickly to be an all-round good player. What I could do, was play third base, hit, and be a good team captain. Third base was a kind of in-between position that was half-baseman and half shortstop, that let me be in the infield, but in a more marginal position. I was a pretty decent batter, and I also learned I could switch hit. I’m right-handed, so I always thought that I should bat right-handed. But I actually found that I was better able to bat left-handed. It just felt so much more natural to me. Most of all, I was a good team leader — a captain who led by the example of just throwing myself into the game and doing my best at any and all times, even if I messed up, now and then. I think, if anything, my spirit helped the team more than any amount of technical skill.

But still, it wasn’t easy to come to terms with the fact that I just didn’t have what it took to become a professional softball player.

When I was young, there wasn’t really anything like a diagnosis of sensory integration dysfunction or sensory perception disorders, and attentional challenges weren’t yet on the radar. All I know/knew was, I was immersed in a seething cauldron of sensory input and there was really no escape.

I’d like to say things got better when I grew up, but I can’t say that’s so. All I can say is, I’ve gotten used to these problems, which doesn’t make me very happy, actually. But there it is.

Below is a run-down of the persistent physical issues I’ve had to deal with most of my life, and that still plague me intermittently. I’ve tried to be as thorough as possible, so you can get an idea of the scope and intensity of my “sensory landscape.” These issues can range from mild to extreme, and they manifest with varying degrees of frequency. I do not experience all of them simultaneously, but many can appear concurrent with others.

Ringing in my ears (tinnitus)

I have a constant ringing in my ears. I’ve had this as long as I can remember. It used to drive me crazy as a teenager, but eventually I got used to it. It’s a high-pitched whine, not so much ringing — a very thin, reedy, penetrating whine “over” several other deeper tones. It rarely goes away. If there’s no ringing when I wake up, it usually starts by mid-morning. It’s worse when I’m tired and/or stressed and/or have allergies. It’s better when I’m rested.

Vertigo, Dizzy-ness, Light-headedness

I have occasional feelings of being “woozy” and/or losing my balance suddenly. Sometimes it can last for a day or more. Sometimes, when it’s really bad, it lasts for days — nearly a week, in the past. I have to be very careful that I don’t fall, when it’s particularly bad. Holding onto things, keeping myself rigidly upright and intently focusing my attention on something in front of me helps. Tactile activities help me focus — holding onto things, making contact with things around me, like fabrics and curtains, arms of chair, objects held in my hand. It’s much worse when I am tired, and when I have allergies, it’s worse. It gets better when I’m rested, but it usually takes at least a day or so to clear up, even when I am rested.

Balance (Vestibular) details (when they’re at their most extreme)

When I’m experiencing “vestibular challenges,” the whole world spins wildly around me… swaying and shifting. Every time I move, no matter how small the motion, I feel like I’m going to fall over. I cannot move my head without being overwhelmed by waves of nausea that wash over me in progressive swells. When I turn my head this way or that — I never know when, or which way — there is a swooshing sound in my ears that is sometimes accompanied by pressure and pain. My ears hurt me with a dull ache that’s sharp at the center… like thick sticks that have small points being pressed into my eardrums. My stomach lurches, and my head pounds with a sick headache. A whining, whistling, high-pitched roar fills my ears, and through the intense ringing, I hear muffled sounds that annoy me with distraction. Even when I stop and hold still, the sense of imbalance continues, like a bucket of water that’s been swung to and fro, sloshing back and forth for a while, even after it’s set down on a level surface.

Going about my everyday business, I sometimes have a sudden sense of falling that eclipses and overrides all other sensory input in my system. The room spins, my legs become weak, and my head swirls in sickening waves of disequilibrium. The walls seem to move before my very eyes, the floor rolls beneath me, and my body feels like it’s swaying. For as long as the feeling lasts, I cannot think, I cannot talk, I cannot react to anything around me. I cannot hear or see much of anything around me. I’m dimly aware that there are objects or people nearby, but they don’t register. I’m faintly aware that people are talking to me, but I cannot respond immediately. All I can do, is try to right myself, try not to fall, try to fight back the waves of sickening vertigo, and hang on, till the nausea passes.

My condition does not seem to respond to “standard treatments”. I’ve tried ear drops and anti-vertigo medications, and they did nothing for me. I also wish I could just write this off as a simple balance issue and have that suffice. But there’s a whole lot more to my situation, than being off-balance. Vestibular issues are just the beginning.

Coordinated Balance (“Proprioceptive?”) Issues

I also have issues with sensing where my body is in relation to the world around me (“proprioceptive” issues). These tend to kick in most intensely when I’m off-balance. I cannot feel where my body is in relation to things around me, and I bump into objects all the time — corners of tables, sides of counters, chairs I’m passing… I also knock things off flat surfaces, if they are too close to the edge. I have a hard time gauging how quickly my body is moving in any one direction, which can cause me to misjudge distances and be uncoordinated. I fumble at picking up objects, I drop things I’m holding, and I tend to have trouble judging distances between myself and others. I also inadvertently bump or hit people when I’m just trying to reach out to them or move past them. When I’m trying to keep my balance, I tend to (for lack of a better word) “proprioceptively overreact,” which makes me either bump into things and people around me or shy away from them abruptly, neither of which is interpersonally optimal.

Hearing

My hearing is also affected by my simply not being able to pay attention to anything but staying upright and not running into things. I can be so intent on trying to stay balanced, that I don’t hear anything around me immediately. I’ll hear things, but they don’t immediately register. And when they do register, I’m often so far behind in figuring out what’s going on, I get the message turned around and am not successful in responding to what I’m hearing right away. When I’m really struggling to navigate contact with the world around me, it can take a few minutes for sounds to sink in and be processed in my brain. I hear them, but I don’t process them immediately. This can be a problem when someone is talking to me. I won’t hear them for a few seconds, and then when I do hear them, I am so busy trying to figure out what they just said to me that I miss what I am able to hear. This is less than optimal.

One of the most annoying and disorienting auditory aspects of my bad days is the whooshing sound, which comes and goes when I’m “off” — sometimes quickly, sometimes gradually. I can rarely predict when it’s going to happen (although during allergy season it is usually more pronounced). It often takes me by surprise and thoroughly distracts me from what I’m doing. I’m usually so caught up in going about my daily business, I don’t notice the dull roar or the achy pressure or even the whooshing sound until it’s unmistakable. And when I finally hear this whooshing sound, I tend to feel nauseous and dizzy. I seem to associate it with feeling lightheaded and sick on my stomach, and whenever I hear it — whether I’m nauseous and dizzy or not — I cringe. I freeze. My rest of body seems to remember what it feels like to hear that whooshing sound, and it reacts accordingly.

Sight

My vision can be affected, too. When I’m off-balance, and I’m not well in-touch with the world around me, my vision gets “re-assigned” to the task of helping me keep my balance. It’s hard to describe, but when I’m “off,” I can visually detect things around me, but I don’t readily process what that means. It’s like with my hearing — I know I’m seeing something, but my brain is too busy trying to figure out how to just keep steady and parse out all the input coming in, to interpret what that something I’m seeing is.

Probably the best quick example I can give of this, is from a time when I was driving through a parking lot, and I literally didn’t see another driver, who nearly hit me, and I didn’t hear him honking his horn at me, until I was nearly out of the parking lot. I was at an office supplies store, and I’d just bought myself a new headset for my cell phone, so I could drive hands-free and still talk on the phone. I try to avoid talking on the cell phone while I drive, but I was hoping that a headset might let me at least be able to accept incoming calls without being a hazard to other drivers.

I sat in my parked car for a few minutes, figuring out how to put the headset together, then I placed it on my head, positioned the mic in front of my mouth, and slowly pulled out into the parking lot. As I was rolling towards the exit, I noticed that a car was pulling out of a side lane just ahead of me. The headset felt like it was slipping off my head, and the microphone wasn’t staying in front of my mouth. My attention was focused intently on the feel of the headset on my head and the mic at my mouth.

As though in slow motion, I saw the front of the other car inch out into my path. I didn’t slow down, but continued to drive towards the exit. The headset felt strange on my head, and I could hardly think of anything but keeping my head straight. The front the other car was rapidly approaching the driver’s side front fender of my own vehicle, but I continued to drive on. I didn’t veer, I didn’t slow down, I didn’t speed up. I didn’t react at all — I just drove on. Only dimly was I aware that I had barely slipped past the front of the other car and avoided a collision. It never occurred to me that I should react in some way. It never occurred to me that I should interact with the other car.

As I continued to coast towards the exit, I could hear a beeping in the distance. The headset on my head continued to bother me with its pressure on my one ear and the feel of the microphone near the side of my cheek. The mic wasn’t pressing against my skin, but I was keenly aware of its proximity. I really felt like I was losing my balance, and I held my head absolutely still to keep the apparatus properly positioned. The beeping continued, and I wondered if someone’s car alarm had gone off. But the sound wasn’t rhythmic or regular, so it must have come from somewhere else.

I looked in my rear-view mirror, and I saw driver of the car I’d narrowly missed yelling and beeping his horn at me and wildly gesticulating, pointing at his head. At first, it didn’t sink in, that he was communicating with me, but when I looked up again, I realized that his behavior was directed at me. And he was furious. The headset kept slipping off the side of my head, ever so slightly, but enough to distract me.

Realizing what was going on around me, at last, I tore it off my head and threw it on the passenger seat beside me. When the headset was off, it was as though the lights went on in a dark room, and someone suddenly turned up the volume on life all around me. I could suddenly see. I could suddenly hear. Suddenly, I wasn’t sitting in an enclosed cell with a headset on, I was driving a car in a parking lot. I got out of the parking lot as quickly as I could, merged into traffic, and went back to work, shaken but grateful that I hadn’t done any damage.

I haven’t used that headset at all, since I bought it.

My vision and hearing aren’t the only senses that get “whacked” when I’m out of sync. My taste and smell do, too. My sense of smell tends to be either all-on, or all-off. It’s very rare that I smell something “normally” and can take deep breaths of scents, like perfumes or foods. If I get too strong a whiff of something, it makes my head spin and really overloads me. And if I’m already off balance, or I’m not connecting well with the world around me, my sense of smell sometimes completely turns off. My sense of taste is even less predictable. It’s muted and vague, and I often judge the foods I like more by their texture, than by their taste.

Touch – Pain

My sense of touch is quite variable — like my sense of smell, either it’s all-on, or it’s all-off. I can literally slam into things, and never feel the impact… sometimes I don’t know I slammed into something until I see the bruises on my leg the next day. But my sense of touch in my hands is very active. When I’m feeling nervous or agitated, running my hands over objects — like the interior upholstery and surfaces of my nephew’s new BMW — is very soothing for me. I’ve always loved satiny fabrics, and when I was a kid, I couldn’t fall asleep unless I rubbed the satin edge of my blanket. I rubbed that smooth, soothing edge so long and so often, I wore a hole in it!

On the other hand, I can experience a lot of tactile discomfort. A simple human touch can feel like a blow to me, and when people put their hand on my arm, sometimes it feels like they’re smacking me. Hard. It’s very strange and difficult to describe, and it makes me very uncomfortable to talk about it, but I experience pain and discomfort from things like clothing, hugs, harmless social touches, and jewelry. I don’t wear any bracelets or extra rings or necklaces, or even a watch, because the contact tends to be very uncomfortable — and distracting — for me.

There are a number of different kinds of tactile discomfort I experience. They are not like muscular pain, but are very much on the surface and localized in my skin surface. Here are some details and descriptions:

Burning – It feels like being burned with a hot coal(s), like embers are laid on top of my skin and are burning down through to the bone. This occurs often on my upper arms and across my shoulders and back. It’s usually worse when I’m tired or have a lot of stimuli coming in on me, and its origin is internal in nature (I’ll call it “autonomic”).

Twisting – It feels like I’m having my skin twisted by two hands having a firm grip on my skin, and twisting in opposite directions (like the “Indian burns” we kids used to give each other). It is mostly on my outer forearms and wrists, and it’s worse when I’m tired or stressed. (Autonomic)

Healing burn – It feels like having second-degree burns that are healing under my skin – not on the surface, not down at the bone, but just under the surface of my skin. This occurs mostly on my outer forearms and wrists, and it’s aggravated by having long sleeves. It’s usually worse when I’m tired or have a lot going on around me. (Autonomic)

Chafing – It feels like being rubbed by by a rough surface – either a piece of rough material, or in some cases, a surface that is a little sticky or ‘grippy’ and pulls my skin a little as it rubs. Some people talk about “sandpaper” type of pain, and this might be close to it, but it’s not exactly. It sometimes feels like a moist, tacky texture being rubbed across my skin. I experience this mostly on the tops of my thighs, aggravated by my slacks. Sometimes I feel it on my arms, and it’s aggravated by the touch of light clothing. (Autonomic)

Prickling – This feels like being jabbed with little tiny pins over an extended area. It’s somewhat similar to “sandpaper” type of pain, but not exactly. It sometimes feels like coarse sandpaper against my skin — not rubbed across it, but held in place, so it irritates me with its presence, but it doesn’t rake. I usually experience this when my clothing brushes my forearms and wrists, also happens without prompting on my upper arms and across my shoulders. (Autonomic)

Blistering – It feels like my skin is blistering and cracking, like paint cracking in the sun, or my lips cracking from being chapped. It usually happens when I am just lying still and trying to relax, like when I’m in bed and trying to sleep. The more I relax and just breathe, the more my skin feels like it’s blistering and cracking and peeling. It happens when my skin is exposed to the air and doesn’t have anything over top of it. It’s much worse when I am tired, but it can happen pretty much anytime. It often takes me by surprise. (Autonomic)

Brushing/Raking – This feels like having my skin brushed/raked/ stroked with a metal-bristle hair brush – the sharp ends pulled across my skin, not pressed in really deeply, but just on the surface, where it irritates and I can’t get away from it. I usually feel this on the tops of my thighs — when my pants brush against my skin lightly. It’s not startlingly painful, but it does hurt. (Autonomic)

Smacking – This feels like being hit hard with an open hand or broad surface – and then the pain scatters out across my skin, as though it were a campfire that had something land in it, and the coals and sparks scattered all around it. It usually happens when someone touches me for a few minutes (an short but extended period of time). Like when my partner put their hand on my forearm when we were driving down to visit family for Christmas. They just laid their hand on my forearm affectionately. It really hurt, and I could feel the pain spreading out around where their hand lay on my forearm. The pain continued, even after they took their hand away. (This is an interactive type of pain, brought on by human contact.)

Banging – This feels like being struck with a blunt instrument – and then the impact reverberates throughout my body. This usually occurs when someone touches me briefly without warning, often in casual conversation, like when my brother-in-law was talking to me at a restaurant one Christmas, and he was harmlessly touching my arm (in a friendly, appropriately affectionate way). This also happens when someone tries to hug me. I have also experienced this when my partner was checking me over for ticks, and they touched the backs of my legs, near my knees. The pressure was very light, but it felt like they were poking me very hard with a blunt object. (Interactive).

Please keep in mind that (thankfully) not all of these types of pain happen simultaneously, and they tend to vary. From one minute to the next, I can go from a relatively pain-free state, to waves of strong physical discomfort. I can be 75% fine one day, and be 15% fine, the next. One type of clothing can be unbearable for me, while others are benign, even pleasurable. And a person’s sudden touch can be excruciating one day, while the next, it can be welcome and enjoyable. “Pain” can also be relative, varying from mildly uncomfortable to downright agonizing. But I differentiate it from “discomfort” in that its degree is different.

Discomfort is something I can deal with, but pain is something that every fiber of my being seeks to escape. An itch is uncomfortable for me. Fabric sensitivity, even at its slightest, feels painful to me. It’s not just discomfort, which to me to me is just annoying and transitory. It’s pain.

My autonomic pain seems to be exacerbated by the qualities of the things I contact — the chemical makeup of fabrics, the quality of light and sound around me, the intensity of the sensation I have (such as the strength of pressure on my skin from the cell phone headset). It tends to get worse, also, when I’m over-tired or I’ve got a lot of different sensory input to process. I haven’t taken the time to figure out what kinds of textiles or materials give me the most trouble. Some days, everything gives me a lot of trouble. I just kind of go with it, and see how I’m doing, where I’m at, and I adjust accordingly.

My interactive pain tends to be exacerbated and complicated by my vestibular and proprioceptive issues. Being unable to gauge distances from people who are reaching out to touch me (no matter how appropriately), makes it difficult to A) prepare myself for their contact, or B) react appropriately. It is difficult for me to receive hugs from friends and loved-ones when my sensory issues are kicking in, and this contributes to my social awkwardness. I tend to stiffen and get tense, which actually makes the experience worse for everyone — for me, because it heightens my agitation, and for them, because they sense a reluctance from me that is physical rather than emotional or interpersonal, and their contact tends to become a bit more clumsy. Stress and strain tend to sharpen my pain, so when my vestibular and proprioceptive issues are acting up, the startling experience of a sudden physical contact can make even a simple touch extremely painful.

The different types of pain I experience can be helped by things like sleep, immobility, keeping away from the source of irritation, movement, stretching, steering clear of people and physical contact, preparing for physical contact with others, or just distracting myself from the sensation by some sort of activity. Analgesics like Advil are not very effective, although they do sometimes take the edge off things. A hot shower can be very relaxing, and swimming in a heated pool is probably the thing that helps me the most. Depending on the type of pain, and how well I’m rested, sometimes relaxing and being immobile makes it worse. Other times, it makes it better. It all depends how I’m feeling at the time, and how well I can redirect my attention to things other than the pain. I haven’t been able to figure out exactly how best to address this. I usually just think about something else and keep myself busy to keep my mind off it, as there’s really no escaping it, when the pain is in “full swing”.

Touch – Insensitivity

One of the other tactile issues I experience is on the extreme opposite end of the spectrum — lack of sensation. When I’m off balance, and my proprioceptive sense is diminished, I tend to run into things, but I often don’t feel it right away. I sometimes notice a sharp shooting pain when I bump into things, but the sensation disappears immediately, and I won’t know how badly I’ve bruised myself till later. I have also accidentally cut myself and not felt it until some time later. At times, when I have really cut myself deeply, or I’ve bumped myself hard enough to get a deep bruise, I’ve been so intensely focused on what I was doing at the time, I hardly noticed the pain and only realized I’d hurt myself when I felt the blood or saw the bruise later.

I suspect this may have something to do with adrenaline — my adrenaline is pumping so hard, at times, as I try to keep myself together, that it seems to numb me to the pain. I’m not a doctor and I don’t know nearly enough about human physiology, but my experience when I unwittingly injure myself is very similar to when I was injured while playing sports — I’d be so intent on the game and so “adrenalized” that I would hardly notice the pain. Again, I’m no doctor, but that’s how I experience it.


A Perilous Relief – Table of Contents