Into the bleak mid-winter

winter sunset with geese flyingI have a confession to make. I love the bleak mid-winter. There’s a hymn about it, that sounds like a funeral dirge. The first verse starts off with a not-so-perky extended complaint:

In the bleak midwinter, frosty wind made moan,
earth stood hard as iron, water like a stone;
snow had fallen, snow on snow, snow on snow…

It’s actually a religious hymn about the birth of Jesus Christ, and I don’t want to get too faith-based here, but the bottom line is, the start of the song sounds pretty dire, but it ends up in a happy, light-filled place. If, that is, you’re a Christian believer. Everybody else will probably be left as cold as the first verse sounds.

Regardless of religious conviction, however, the point of the song is that despite the cold and gloom of the winter months, a light comes into the world. And that transcends it all.

Personally, I like the bleak mid-winter, because it slows everyone down. All the running around and chasing after things during the spring, summer, and fall… well, it all gets a little tiresome, after a while. Our systems aren’t really built to keep going at top speed, all year long. Or even all day long. We need our sleep. It cleans out the gunk that builds up in our brains, and it helps our systems restore their balance.

The idea that you can get up at 4 a.m. and push-push-push for 18 hours, till you collapse, and then get up and do it all over again, is a dangerous concept. Some people can do it, sure. But they’re the exception. The vast majority of us really need our sleep to function. And that includes me. A lot of us could also use a nap, each afternoon. That includes me, also. But I only get that on weekends and my days off. All the other days, I have to keep up with others.

Of course, getting enough sleep is more easily said than done for me. Lately, I’ve been pretty anxious about some work issues, and I’ve been waking up at 5 a.m. instead of 6:30 or 7:00. So, I’ve been losing sleep. I’ve also been staying up later than I should, watching the tail-end of movies that I really like. It’s irresponsible, I know, and I need to stop it. And I will. But right now, my focus is on making sure I’m functional for today… not focusing on the evening at the end of my day.

But I’ve digressed. I love the bleak mid-winter for its cold, which slows us all down, as we have to deal with more layers of clothing. I love it for its long nights, which help me rest and relax. I love it for its crazy weather that keeps me on my toes. I don’t even mind the snow so much, because it gets me active and out and about. And I love how other people slowing down makes it easier to shop and go to the gym, because people are not feeling up to working out (especially after the initial rush over their New Year’s Resolutions has passed), or going to the store at early/late hours of the day.

The bleak mid-winter solves a lot of logistical issues for me, slows things down, gives me a break from the onslaught of constant go-go-go, and it gives me space to move and think instead of having to constantly negotiate the world around me.

And that’s fine. It’s just fine with me. So… onward.

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One concussion, two concussions, three concussions, four…

I had a meeting with my neuropsych last week, when we talked about my concussive history. I had read the article by Malcom Gladwell in the New Yorker called Offensive Play, and I had some questions about how my past might have made me more susceptible to tbi, later in life.

I was wondering aloud if my rough-and-tumble childhood (when falling and hitting my head and getting up and getting back in the game ASAP were regular parts of play), might have brought me lots of subconcussive events, like so many impacts on the football field. I checked in with my neuropsych, and they had me recap from the top, all the head injuries I could recall. My recollection and understanding of them was considerably better than it was, just six months ago. What came out of it was the determination that I’d had enough genuine concussions to do a fair amount of damage to myself. Forget about subconcussive events; the concussive events sufficed to cause plenty of problems, on their own.

It kind of threw me off for a day or two, and I got pretty stressed out and ended up pushing myself too hard, and then melted down in the evening. Not good. It’s hard, to hear that you’re brain damaged. It’s not much fun, realizing — yet again — that you haven’t had “just” one concussion, but a slew of them. And considering that I’m in this new job where I have to perform at my best, it really got under my skin. It’s taken me a few days to catch up on my sleep and settle myself down, after the fact. But I’m getting there. My past hasn’t changed, nor has my history. I’m just reminded of it all over again…

All told, I’ve sustained about eight concussions (or concussive events) that I can remember. Possible signs of concussion (per the Mayo Clinic website) are:

  • Confusion
  • Amnesia
  • Headache
  • Dizziness
  • Ringing in the ears
  • Nausea or vomiting
  • Slurred speech
  • Fatigue

Some symptoms of concussions are not apparent until hours or days later. They include:

  • Memory or concentration problems
  • Sensitivity to light and noise
  • Sleep disturbances
  • Irritability
  • Depression

I experienced most of these (except for nausea and vomiting, and not so much slurred speech, that I can remember) during my childhood and teen years. Not surprising, considering that I had a number of falls and accidents and sports injuries over the course of my childhood.

It’s pretty wild, really, how those experiences of my childhood contributed to my difficulties in adulthood — especially around TBI. I’ve been in accidents with other people who had the same experience I did, but didn’t have nearly the after-effects that I suffered. For them, the incident was a minor annoyance. For me, it was a life-changing concussion. A head injury. TBI. Brain damage. Geeze…

Thinking back on the course of my life, beyond my experiences with the accidents that didn’t phaze others but totally knocked me for a loop, I can see how the after-effects like fatigue and sensitivity to light and noise, really contributed to my difficulties in life. It’s hard to be social and develop socially, when you can’t stand being around noisy peers (and who is as noisy as a gaggle of teens?). It’s hard to learn to forge friendships with girls — who always seemed so LOUD to me(!) — or hang with the guys — who were always making loud noises, like blowing things up and breaking stuff — when you can’t tolerate loudness.

And when you don’t have the stamina to stay out all night… It’s a wonder I did as well as I did, as a kid. Of course, I was always up for trying to keep up – I was always game. And I wanted so very, very badly to participate, to not get left behind, to be part of something… That kept me going. I was just lucky to have people around me who were kind-hearted and intelligent and tolerant of my faults and limitations.

Anyway, I did survive, and I did make it through the concussions of my childhood. I have even made it through the concussions of my adulthood.  And I’m still standing. I didn’t get any medical treatment for any of these events, and the most help I ever got was being pulled from the games where I was obviously worse off after my fall or the hard tackle, than I’d been before.

But one thing still bugs me, and it’s been on my mind. During my high school sports “career, ” I was a varsity letter-winning athlete who started winning awards my freshman year. I was a kick-ass runner, and I won lots of trophies. I also threw javelin in track, and by senior year, I was good enough to place first and win a blue ribbon in the Junior Olympics. Which is great! I still have the blue ribbon to prove it, complete with my distance and the date. But I have no recollection of actually being awarded the ribbon, and I barely remember the throw. I’m not even sure I can remember the event or the throw. It’s just not there. It’s gone. And it’s not coming back. Because it was probably never firmly etched in my memory to ever be retreivable.

I’ve never thought of myself as an amnesiac, but when it comes to my illustrious high school sports career, when I was a team captain and I led my teams to win after win, I have all these ribbons and medals and trophies, but almost no memory of having earned them.

Which really bums me out. What a loss that is. When I hear Bruce Springsteen’s song “Glory Days” I feel a tinge of jealousy that the guy he’s singing about can actually recall his glory days. I can’t. And that’s a loss I deeply feel, mourn… and resent. Seriously. It sucks.

This could seriously mess with my head. And sometimes it does. But on the “up” side, it might also possibly explain why I’ve been such a solid performer over the years, in so many areas, yet I can’t seem to get it into my head that I am a solid performer. My memory of having done the things I did, in the way I did them, is piecemeal at best, and utterly lacking at worst. So, even if I did do  well, how would I know it, months and years on down the line? How would I manage to form a concept of myself as successful and good and productive and inventive and trustworthy, if I have little or no recollection of having been that way in the past?

It’s a conundrum.

But I think I have an answer — keeping a journal. Keeping a record of my days, as they happen, and really getting into reliving my experiences, while they are still fresh in my mind. If I can sit down with myself at the end of a day or a week, and recap not only the events of the past hours and days, but also re-experience the successes and challenges I encountered, then I might be able to forge memories that will stay with me over time. If nothing else, at least I’ll be making a record for myself that I can look back to later. And I need to use colors to call out the good and the not-so-good, so I can easily refer back to the date and see where I had successes and failures along the way.

Most important, is my recording of successes. I’m so quick to second-guess myself and assume that I don’t know what the hell I’m doing. And when I think back to the times when I overcame significant difficulties, I often lose track of the memory before I get to the end of the sequence I followed to succeed.

But I cannot let that situation persist. I need a strategy and a practice to reclaim my life from the after-effects of way too many concussions. I’m sure there are others in life who have had it far worse than me, but some of my  most valuable and possibly most treasured experiences are lost to me for all time, because I have no recollection of them.

No wonder my parents often start a conversation with me with the sentence, “Do you remember ________?”

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.

Blah… blah… blah…

Maybe it’s just the summer, but I haven’t been getting much of anything done, lately. My fire to accomplish at work has faded considerably, and I’m sort of slipping into the doldrums. I’ve been starting out the day with exercise, which is good… but a funny thing is happening, now that I’m waking up more in the a.m.  It seems that that old edgy drive has dulled considerably, and while I’m not as prone to hounding myself over every little detail, I also don’t feel particularly called to Get Things Done.

Is this what it feels like to be “normal?” To not have constant agitation? To not be perpetually on edge over some indeterminate goal? I wonder…

Well, anyway, at least I have been sleeping more, lately. I’m learning how to relax. It sounds odd to me, to say it, but I have had to learn how to relax — doing deep breathing, teaching my body to let go of the tension it’s holding, counting breaths, letting my muscles relax, allowing my body to be supported by the bed, when I lie down to sleep. Such a simple, elementary thing… that I couldn’t do very well at all, until a few months ago.

Well, at least there’s progress…

Actually, come to think of it, I have been getting a lot done — just not in that old frantic-stressed-harried way that used to drive everyone around me nuts. I’ve been doing some reading on neurofeedback therapy, trying to get it straight in my head — the different brain wave patterns, etc. I suspect there may be ways to do this on my own, without needing to seek out expensive therapists who don’t take my insurance. Well, we’ll see.

I’m not feeling particularly driven to pursue it. It would be interesting to know more, but I can wait. There are lots of other things I can do to occupy my attention quite well — some of them having to do with making a living, which is something I mustn’t neglect, no matter now relaxed and un-motivated I am.

Now, if I can just find a way to get the intense ringing in my ears to stop. It’s been particularly loud and obnoxious, and it’s been going on for days, and it’s driving me nuts.

I probably just need to sleep.

I’ll see….

Sleep mask + earplugs = magic

I actually slept for seven hours last night.

Amazing.  I haven’t slept that long without being completely and totally exhausted/depleted/at the end of my rope in quite some time.

I’ve been sleeping in the guest bedroom for the past few nights, so I can sleep through the night without being woken by my partner sitting up late reading, snoring, coughing, or otherwise being human. The only problem is, the guest bedroom has a great view of the back yard, and the back yard is surrounded by trees, and those trees are filled with lively birds that love to awake and sing-sing-sing at 4 a.m. I typically wake up around 4:30, when I sleep back there. I may be able to sleep uninterrupted all night, but the morning is a problem.

So, sleeping in the guest room isn’t necessarily the most sleep-conducive thing to do, unless I go to bed at 8 the night before, which is out of the question. My body just won’t do it. Nor will my mind.

But last night, I had to do something to take the edge off my exhaustion. I haven’t been sleeping very well at all for weeks, now. I have been getting 5-6 hours a night, which is just murder on me, because it coincides with some intense deadlines at work. Not only does the exhaustion take a toll on my cognitive functioning, but it also erodes my mood. Whereas I’m usually pretty “up” and can-do, and my outlook on life is quite open and ready for just about anything (within reason), when I’m over-tired, my mood just spirals down, and I end up in very, very bad places, where no amount of reason or motivation will drag me out.

I noticed it especially last night

I was really feeling good all day, until late in the evening, when I was going to bed. All of a sudden, I was melancholy and blue, feeling sorry for myself and feeling lonely and afraid and overwhelmed. I just couldn’t handle much of anything, and I started to get mired in that sad-sack poor-me swamp from which no good things come. I was starting to get intensely depressed and feel like there was no hope for me at all.

I started to think about my family and how we just don’t connect. I started to think about my new therapist and get down about how the relationship I have with them is an artificial one and no matter how I may feel we’re connecting, they are essentially a professional consultant, and — for my own sake — I need to keep the relationship somewhat arms-length. I started to think about my old therapist, and wonder how they’re doing.

I was spiraling down into that place I’ve often “gone” in therapy… that place where my old therapist loved to “camp out” and plumb the depths of my past, to see what terrible hurt had been done to me. And just as it used to make me really uncomfortable to delve into all that — not because I’m afraid to explore the places where I’ve been hurt (I’m only too happy to do that at times), but because they were making flawed assumptions and reaching inaccurate conclusions about what caused that depression, what was pulling me down, what I needed to deal with.

I can think of many, many instances where I spent a whole hour hashing and rehashing crap that was dragging me down, only to get all turned around and more frustrated… then I had a good night’s sleep, and everything was miraculously all better.

Seriously. I’m not just making this up to make the psychotherapists of  the world feel inadequate. The main problem wasn’t that someone was mean to me when I was ten. It was that I hadn’t been sleeping.

Fortunately, I recognized that I was going there, last night, as all the thoughts and fears and regrets tumbled around in my head like puppies in a basket.

Thankfully I had the presence of mind to notice it AND do something about it

“This is ridiculous,” I said to myself, as I sat in the bed with my journal, ready to write some maudlin entry about the day. I had had such a great day — clipping along, getting things done, making good progress… only to crash at the end. I could tell very clearly that I needed to sleep, and I knew that I needed to do something about being woken at 4 a.m. by exuberant birds.

So, I pulled out a sleep mask and earplugs I picked up a couple of months ago. I had tried to use the earplugs before, but they felt strange in my ears, and I hadn’t tried again. Last night, I was beyond caring how they felt in my ears, and I fit them in as far as they could go. I also found an extra fan and turned it on low — to circulate the air in the room and to drown out background noise. Then I pulled on the sleep mask, laid back, and counted my breaths that were echoing loud in my ears.

One of the problems with wearing earplugs with me, is that it makes the tinnitus louder. I have constant ringing in my ears, which gets almost deafening when I stop up my ears. It’s the craziest thing, and it drives me nuts. But last night, I was in no mood to care. I just laid back, focused on my breath, and dropped off to sleep.

And wonder of wonders, I actually slept till nearly 6 a.m. A record for me lately.

And I’m feeling great. Really ready to take on the tasks ahead of me today and make some good progress. That’s a good thing. Because today is D-Day for this project. Deadline Day. And I have to be sharp. Dullness is not an option.

Tomorrow I’m going to try the sleep mask and earplugs again. Little by little, I’ll work my way back to being able to sleep. And take care of all these little niggling sleep-related problems as I go. It just amazes me, how much a good night’s sleep does for my mental health and overall performance. It’s like night and day.

Sleep matters

When I’m overtired, I become moody, can’t focus, have problems with thinking tasks, become over-reactive, and I have a tendency to melt down. It gets ugly pretty quickly, and then I have to work double-time to make up for what I’ve said and done and try to repair the havoc I’ve created around me.

But when I’m rested, I’m happy, hearty and whole, and no matter what life throws at me, I can handle it. I’m a productive, positive partner and team member, and people love to be around me. No obstacle is too much for me, when I’m rested. And no event I’ve experienced is too big to overcome.

Which makes me wonder how much unwarranted exploration I’ve indulged in, during past therapy sessions, when I was trying like crazy to understand why I was so depressed and down… why I was struggling so. I overturned all kinds of rocks and plumbed the depths of my aching soul… and was unable to come to terms with just about anything I found there.

But magically, when I slept and had enough rest, suddenly it all became clear. And I could not only deal with what I found, I was also able to use it and change it and shift it and have it be an asset, not a liability in my life.

And I wonder how many other folks have similar issues to mine — psychotherapy clients struggling with lots of stuff not just because of the nature of the events, but because they haven’t slept well in weeks, if not months and years… and psychotherapists themselves being thwarted in their work because the person across from them is physically incapable of a positive, healthy outlook on life.

If I were a psychotherapist…

One of the first things I’d do in dealing with my clients, is find out how they’re doing physically. I’d find out of they’ve been sleeping, how they’ve been eating, if they’ve had much exercise. I’d find out what their physical health is like, find out when they’re at their best and when they’re at their worst, and try to schedule time with them when they were at (or near) their cognitive peak — or at the very least, avoid seeing them when they were at a low point.

I wouldn’t waste anyone’s precious time, processing their “stuff” when they were over-tired or hadn’t been eating or exercising regularly. And I wouldn’t agree to see someone who wasn’t taking care of themself. I suppose I would start out with a new client who wasn’t in the best of condition, but if they persisted in neglecting their bodies and not getting enough sleep, I would drop them like a hot potato. Sure, they would be a natural source of unending revenue, but if I only took clients who were likely to need my help till the end of their born days, I’d be a pretty crappy therapist.

Most of all, I’d focus on the sleep thing. Especially if someone had sustained a TBI. Sleep deprivation makes you crazy, overly suggestible, unpredictable, and easily manipulated. Spy/intelligence agencies have known that for years, and they’ve used it to their advantage. But getting enough rest each night is one of the primarly building blocks of good health. If you don’t care about your health — mental or physical — then how much you sleep shouldn’t matter. But for me, it matters a whole lot.

And I look forward to getting more of it.

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

Life – the best therapy of all

I’ve been checking my stats, lately, and they’ve really taken a nosedive. From 2,555 on a peak day a few weeks back, to 67 yesterday.  I’m not sure why my stats peaked over 2,000 several days in a row. A fluke, I guess. A heady one, too.

Anyway, I was getting a little bummed out about the drop, but then I looked at the weather outside and realized that it’s probably a really good sign, that people are not reading this blog. Chances are, they’re out and about, living their lives, experiencing spring, and really getting into life. That’s a good thing. In fact the fewer people who read this — who spend less and less time noodling over all this bla-bla-bla — the better the indication may be that they’re out living their lives.

And so should I. Over the past several years, I’ve spent altogether too much time inside. I’ve spent too much time being turned around. I’ve spent too much time doing… nothing. Because doing something was confusing, frightening, frustrating, and exasperating for me, and being involved in life as a regular human being was, frankly, too much for me. I’ve invested a fair amount of time, over the course of my life, trying to figure out what was “up” with me. I’ve filled countless notebooks with my journal thoughts — the other day, I just unearthed another 6 notebooks I’d put in the bottom of a drawer. I’ve written and written and written some more about what my experiences were, all the time missing some of the most central, core issues — my cognitive/behavioral problems, my physical issues, etc. And I thought I was doing myself some good, but in fact, I was doing the opposite — slowing my progress and stunting my recovery by refusing to engage with them on a practical, everyday level.

Now, it’s all very well and good for me to have some level of self-awareness.  It’s all very well and good to grasp the inner workings of my psyche. And it’s a good idea for me to be learning about my brain and how it works. But in the end, life is waiting. I can’t sit around in my house, hiding from the rest of the world. I can’t sit around contemplating my belly button for weeks, months, years on end. Well, I suppose I could, but what would be the point? 😉 I need to take what I learn inside my head, inside my journals, inside my house, and translate it all into a life outside, a life beyond, a life engaged in… life.

Because like it or not, life has a way of rehabbing us. It has a way of teaching us what we need to learn, even when we’re not paying attention. It has a way of refining us and adjusting us and remaking us, a million times over in the course of a lifetime. And when I don’t fully get involved in my own life, I miss a lot of chances to see where life is taking me — and enjoy the ride in the process.

It’s true, I do have a whole raft of issues I need to deal with each day. But don’t we all? Just ’cause my issues have showed up somewhat abruptly over the years, and they’ve thrown a wrench in my works, doesn’t mean I have to let them stop me. Plenty of people have woes and troubles and issues, and I am one of the lucky ones who has real information about what the nature of my troubles are, and I have the drive and desire to do something about them. I will do something about them, too. I AM doing something about them. I have to. I can’t sit around and wait for the insurance company to approve my request for assistance, and I can’t keep spending countless hours looking for who can help me in a timely manner. It takes me forever to do really basic things, like get on with my day. What time do I have to chase my way through a medical and insurance system that doesn’t see me on its radar, unless I go out of my way to get in their face 24/7? Like I have nothing better to do with my time, than navigate that maze that may lead nowhere, anyway?

I mean, come on… Whoever came up with this system clearly has no life of their own that they value beyond words. Else they wouldn’t expect others to sink countless hours of precious life force in hassling their way through it all.

So, I”m kind of doing a “sour grapes” thing here, telling myself that I don’t really need or want cognitive rehabilitation or occupational/speech therapy, since it seems so out of reach. But in a way, I’m also simply prioritizing my efforts — do I..

  • sink the time and energy and hope and optimism into a woefully inadequate and bureaucratic system that’s seemingly designed to discourage me from seeking help in the first place, turning my schedule upside-down and wearing myself out for the questionable benefit of meeting with someone with whom I may or may not be able to communicate, and who may or may not be able to help me,

or do I

  • tend to my own issues on my own, in my own way, on my own time, learning everything I can about how my brain works and what my core issues are, and how I can possibly address them with certain modifications, using my life as a great laboratory where I’m the one who designs the tests and experiments and therapies, based on what I know about myself and what I want to accomplish in the world?

Some might say I’m walking an iffy line, taking matters into my own hands, but what’s the alternative? Sit around immobilized by my difficulties? Hide in the house and never go out, ’cause I’m not sure what will happen? Keep avoiding my issues and covering them up, never confronting them head-on? That’s just not an option for me.

I do know I have certain issues I need to address. They’re all right there on my self-assessment forms — verbal aggressiveness, temper flares, emotional volatility, chronic pain, confusion, difficulty communicating, trouble sleeping, light sensitivity, sound sensitivity, possible seizures (the jury’s still out on that one, but if certain experiences I’ve had since childhood have been seizures, it would explain a whole lot), trouble reading and concentrating and learning… the list goes on. And each and every one of these things gets in my way, in one way or another, in the course of each day, so I have to deal with them.

Even if I can’t get help from another live person.

So, it’s DIY rehab time. Just because I can’t seem to connect with the right kind of trained professionals or afford to pay for their services, doesn’t mean I have to go without rehab. There are books out there I can read. And I have my self-assessments I can do on a regular basis to track my progress. I have my standards and my ideals I hold up as goals. And I can monitor my daily experiences to see how well I’m achieving those goals.

It’s a daily practice, this. And little by little, I make progress. I slowly acclimate myself to the things that make daily life difficult for me — things like textures and sensations that distract me and bother me, which I need to just get over. I also find out where I can’t expect to change my experience — when I’m overtired, it’s pretty pointless to try to acclimate my eyes to bright sunlight, because my brain is too tired to know what to do with it. I find the places where I can reasonably expect to toughen myself up, and I identify the areas where I’d best steer clear of irritants. It’s a daily process, a part of my everyday life, and it’s probably going to be this way for the rest of my born days.

And that’s fine with me. Because in the end, at least I have some understanding of where I’m at, and I can see from my self-assessments how I’m doing with it all. And all this examination and active involvement in my life actually gives me more of a connection with my own experience, and it adds meaning to it all. I have to be more involved in my own experience, and it’s actually a benefit to me.

Now, even if I hadn’t had all those MTBIs over the years, I’d probably still be into this. Because I’m fond of making sense of it all — even the senseless stuff. Having head injuries has NOT been “the best thing that ever happened to me”. It has sucked. Big time. But in the end, the practices that my little brain require in order to just get on with it, do have a deeper benefit and meaning, than pure functionality. In the end, there is depth and breadth and wonder to it all.

There is mystery in the mechanics. And that’s what keeps me interested, as well as occupied.

An answer right under my nose

Crazy me… Here I sit in my study, periodically looking up at my calendar, now and then, to remind myself what the date is… I have a “zen art” calendar that has pictures and sayings on it, and I have tended to contemplate those sayings to help keep me on track. But in the past month, for some strange reason, I haven’t looked that closely at the saying on my calendar.

It is:

So whatever you do, just do it, without expecting anyone’s help. Don’t spoil your effort by seeking for shelter. Protect yourself and grow upright to the sky; that is all.

Yeah, that.

Just the answer I’ve needed over the past months, as I’ve been struggling with my brain’s limitations. Hidden disabilities… Invisible problems… Issues that I never had to worry about before… Difficulties others do not know I have and don’t expect me to have… Falling behind and forgetting to keep on top of myself and my activities and my state of mind and heart and soul, not to mention body… I’ve hassled and hassled over a lot of stuff, especially as it’s become more and more apparent to me.

I’ve been getting some help from folks along the way who supported me the best way they knew how — by offering me their sympathies and lending me their ear. And it’s helped to know my difficulties were not only in my head, and that someone else could recognize them and offer me encouragement — as well as correction.

But I had a revelation while I was out working in my yard this morning. I was raking up deadfall from the winter, spreading organic fertilizer (it’s dried chicken manure, but ‘organic fertilizer’ sounds so much more glamorous) on my grass, and uncovering the shoots and leaves of tiny plants looking for the sun, and it occurred to me that something was shifting with me. Something was changing. Along with spring. Along with this new job I have. Along with all the changes going on in the world. Something in me had shifted.

Suddenly, I felt ready to fight on.

Maybe it was watching HBO’s special PACQUIAO/HATTON 24/7, last night, which follows two boxers training and living their lives, leading up to their boxing match next month that reminded me what I fighter I really am. Maybe it was seeing the “old dawgs” who had been fighters and were now trainers, who were living their lives just as they were, pugilistic damage notwithstanding. Maybe it was watching the training, seeing the fighters and all the others around them going through the motions of preparing for the face-off.

Maybe it was the last three weeks I’ve had on the job, finding out just how much harder I have to work at this learning business. Maybe it was figuring out (yet again) that I need to not focus just on job security, but on employment security, and not let the political scene at work distract me from my skill-building and practice. Maybe it was getting to a point at work, where the folks I work with, side-by-side each day are starting to include me in their conversations. Maybe it was being told that my contract may be up sooner than I expected, so I may have to go out looking for a new job, sooner rather than later.

Maybe it was the unseasonally hot spring morning. And the mayflies swarming me. And the physical labor of raking and lifting and hauling and pushing and wheeling. And the stink of chicken manure dust on my jeans and the sweat streaming down my back. And the realization that I haven’t taken nearly as good care of my house and my yard, as I should in the past few years, and that sustaining a mild TBI that threw me for a loop is no longer a viable excuse, now that I know about it, I know about my issues, and I am able to do something about them.

Maybe it was the acceptance of the fact that I’m probably going to be really, really tired much of the time I’m awake… and reaching a conscious decision to just learn to live with that and not let it stop me. I want to live my life. I want to have a full and complete life, and I’m not going to get that lying in bed. I am usually fatigued. Even if I do take two-hour naps on my days I’m at home, I am once again fatigued in a matter of hours after I wake up. That’s just how it is. Of course, I need to not endanger myself in the process and end up asleep at the wheel or convulsing with stress/exhaustion-induced seizures, but underlying fatigue is something I’ll likely just have to live with, the rest of my born days.

The headaches and general body pains and joint issues and ringing in my ears will likely be with me the rest of my born days, too. Nobody I’ve talked to has been able to figure them out or give me anything to ease them, and I just don’t have time to accommodate modern medicine’s enthusiastic cluelessness and get on with my life. None of my doctors have time for me. They literally don’t. They won’t take more than 20-30 minutes talking to me, and they sure as heck aren’t going to invest more time in understanding my underlying condition(s) from a wholistic standpoint. That’s not their thing, and I can no sooner expect them to change their ways, than I can expect the deer to stop eating my shrubbery towards the end of a deeply harsh winter.

I’m perfectly capable of functioning, even if I’m exhausted. And have a blazing headache. And creak and groan with every movement. And am having trouble keeping my balance. And can barely hear what’s going on around me for the whining roar in my ers. Heck, I’ve been doing it for years — and a lot longer than since my fall in 2004. I’ve been dog-tired, hounded by auditory static, and wracked by pain and for years. And yet I fight on.

Yes, I fight on. It’s what I do. It’s who I am. It’s what I’m about. I have friends who are all into peace and love, and that’s fine. I value their friendship, and they’re good people. But I’m a fighter. And while peace and love are wonderful, I’m not the kind of person who lets the absence of peace and love just stop me. If I did, I wouldn’t be where I am today. And I wouldn’t have been out today, working on my yard and my house on my day off work. I might have been out and about, but I would have been working on something that was the property of someone else. And probably feeling pretty sorry for myself, too.

Working up a sweat today, I realized that in the past several weeks — especially in the past few days — I’ve cycled around again to a point where I am looking less and less for sympathy regarding my condition; less and less, I am seeking assistance from others. Less and less, I’m asking my partner to pick up slack for me. Less and less, I’m looking to my co-workers to cut me slack. Less and less, I’m expecting my job to be secure and my work situation to be ideal. Less and less, I am in need of perfection — or accommodation, in order to succeed.

More and more, I’m looking more within for what I need. More and more, I am starting to look within for my own resources to see where and how I can help myself. More and more, I’m “giving up” on the medical establishment in a fairly good-natured way, allowing them their limitations, while not letting them hold me back or get me down. More and more, I’m just buckling down and doing the job in front of me, and it feels pretty good.

Now, on and off for about a year, I’ve been on a kind of quest to find out what issues I have and figure out what they mean to me. It’s been disconcerting and upsetting and unsettling to find out that in some ways I’m a lot worse off than I ever guessed. And it’s put me in a more vulnerable place than I care to be. I’ve been learning to reach out and ask for help. I’m also learning to see where and when I actually need help. That might not seem like such a huge deal, but for me it is.

But I have to say that trying to get others to help me is a bit of a losing proposition for me. I have a heck of a time articulating what I need, and frankly, I’d rather do a lot of things myself, than look to others. I have a hard time not only figuring out what I need from others, but also telling them what that is. And then I have an even harder time making sure they get it right. It’s just not where my skills lie.

And seeking for shelter in the face of adversity is also not in my nature. The “shelter” that others offer me is all too often not suited to me — it treats me like a victim, a hapless individual who has been acted-upon, rather than someone who acts upon my world. I have tried to find shelter with friends and therapists and family members and co-workers for much of the past year, and it’s just not working anymore. Not anymore.

So, I’m sorta kinda giving up on that. Doing for myself is really my first nature, and I need to get back to that. Blazing a trail through the jungles of my life is also innately me, and I need to get back to doing that with gusto. Yes, I have sustained multiple mild traumatic brain injuries over the course of my life. Yes, my difficulties have wreaked havoc with a lot of aspects of my life. Yes, things that others find really easy are very difficult for me, and things that others find difficult are quite easy for me. I’m at odds with the world. Always have been, most likely always will be.

And I’m okay with it. It’s just who I am. And I’ve been separated from that truth about myself for too long.

Now, I’m doing something about that. I’m getting back to just being who and what I am. I’m getting back to doing by just doing, rather than noodling everything through, up-down-left-right-inside-out, and mucking it all up in the process. I’m getting back to being okay in some ways and not-okay in others, and allowing that to be what is. I’m getting back to doing what I do, exactly the way I do it, and just letting myself be.

So whatever I do, I’ll just do it, without expecting anyone’s help. I won’t spoil my effort by seeking for shelter. I’ll protect myself and grow upright to the sky; that is all.

Yeah, that.

TBI Survivor Loved Ones – Don’t Put Up With Our Crap!

If you are a friend or family member or a significant other of someone who has sustained a head injury, you definitely have a unique set of challenges. Head injury is a terribly intrusive and disruptive condition to deal with — it can be extremely difficult for the survivor to deal with, and it can be utterly maddening for the people around the TBI survivor.

They got hit on the head, sure, but it wasn’t a bad injury, from what the doctor said. They weren’t even admitted to the hospital! They were foggy and groggy for a little while, but that passed. As far as anyone can tell, they should be back to normal, no problem. But all of a sudden, the person you once knew and loved — who may seem perfectly fine on the outside — is changed. Their temper is shorter. They forget things. They make stupid decisions and don’t even seem to understand how dense they’re being.

Subtle little differences can sneak in from out of the blue, and you sometimes can’t quite put your finger on it. They seem… different. You know they’re the same person they always were. But they’re not quite themself. And no matter how long you wait, no matter how patient you are, no matter how much you try to reason with them or walk them through things, they don’t seem to be getting any better.

Or, you can definitely see how they are different. They fly off the handle over nothing. They freak out over stupid things. They sleep all the time. Or they can’t seem to get to sleep or stay asleep more than 5 hours or so. They complain of constant headache. They complain of that blasted ringing in their ears. They suddenly grow aggressive, even violent, and they just “go off” for no good reason. They can’t seem to keep their act together and they keep getting in trouble with authorities – teachers, bosses, the police. Nothing anyone says seems to make a difference, and they don’t seem to learn from any of their mistakes.

For a loved one of a TBI survivor, standing by and watching someone seemingly self-destruct… or at least struggle terribly with things that used to be easy for them… must be terribly frustrating. And dealing with someone who used to be so sweet and loving, who’s now a pure terror when they’re tired or stressed, can be quite frightening. I, myself, have frightened lots of people I loved over the course of my life, due to my quick temper and a sometimes violent streak. I’ve never struck anyone I loved or lived with, but I have thrown and broken things and given people good reason to feel very afraid.

As a TBI survivor myself, I really feel strongly about what an important role loved ones can play in helping a head injury survivor not only recover from their physical injury, but rehabilitate behaviorally. True, the inside of our heads — our fragile, sensitive brain — has changed permanently, and some abilities we may never get back. Some of our cognitive challenges just can’t be helped. But when it comes to our behavioral issues, something can be done. I’m convinced of it. I’ve managed to overcome some really serious behavioral difficulties, and because of my relative success in this area, I’m able to find and hold down regular work. In this economy, you can’t put a pricetag on that capability. And most importantly, I haven’t done it alone.

Perhaps the number one TBI issue I have, is my temper. The inner storms that come up for no good reason really tear the crap out of me, at times. For the most part, I can keep my act together. 7 out of 10 times, nobody knows what a hard time I’m having dealing with something as simple and basic as dropping something or flubbing up. But it’s the 3 out of 10 times that get me in trouble. And it’s not good.

In my case, I am blessed to live with someone who is  pretty demanding. They are that way by nature — they have very high standards, and they expect people to live up to them. I have been constantly pushed and prodded over the years to improve myself as best I can, to not misbehave, to not be lazy, to not be lackadaisical, to not just give up. They have “ridden me” very hard, over the years, sometimes nagging and nagging and nagging until I thought my head was going to explode. But at the end of the day, when I did what I promised I was going to do, or I finished a job I’d started, or I’d done what I was supposed to do, or even when I’d tried and failed, the fact that they’d stayed on me turned out to be more good than bad.

Their encouragement has sometimes been gentle, sometimes strident, sometimes impatient, sometimes overly demanding. But even when they’ve been too hard on me and have given me all kind crap about things I couldn’t control – like my difficulties with remembering things, or hearing them when they were talking to me, or being slower on the uptake than they expecte me to be.

One of the things that’s made our life together more challenging over the years is that we didn’t factor in TBI in our interactions and my shortcomings. But when they started to learn more about TBI, they started to change the way they interacted with me, and they have been far more helpful than ever.

Once upon a time, they pushed and pushed and cajoled and nagged and cursed and hounded… with different levels of success. Now, they understand that patience and encouragement can go a long way. But they — and I — also know that sometimes I do need to be yelled at, in order to get my attention. Sometimes, I’m being so slow and dense, I can’t “get” what’s going on, unless it’s expressed at the top of someone’s lungs.

I don’t take the yelling personally, when situations are tight. I actually need to be yelled at. Or I’ll miss an important cue, I’ll run over that pothole, or I’ll do something that can get me hurt. The important distinction for me is that the yelling happens before an event, not afterwards, when it’s too late to do anything about it. If someone is yelling at me, because I am being dangerously slow and they’re trying to protect me, well then, please, by all means, yell at me.

For me, it’s important that people not handle me with kid gloves. My brain has been rattled a number of times over the course of my life, and in some ways, I’m really, really dense. I can’t be coddled and accommodated and treated like some victim by the people in my life.  And I also can’t be given carte blanche to just do and say whatever I damn well please, ’cause I’ve had bunch of brain injuries. It doesn’t help the people I love, to let me run roughshod over all of them. And it makes me feel terrible, when they let me do that.

Like it or not, there are sides of me that need to be disciplined, that need to be kept in check. And they need to be called what they are — unacceptable — by the people who are affected by them. Including myself. There are certain sides of me that need to be called out and stopped, before they do damage. My temper is hot and precipitous and often flares up with out my realizing how or why or that it’s in the process of happening. And when I’m going off over something that doesn’t warrant my level of rage, I need to be told to be quiet. I need to be told to calm down. I need to be told that my outburst is not appropriate, and I need to step away and calm myself down before I can be around other people. I need to be called on my crap, and I need the people around me to refuse to accommodate bad behavior.

There really is no excuse for bad behavior. There are plenty of reasons for it and my TBIs have not helped, but there’s no excuse for letting myself get out of hand and stay that way. Left unchecked and unstopped, temper tantrums, yelling fits, being snappy and course and crass and obnoxious is disruptive to everyone, hurtful to others, and it’s embarrassing to me. After all, I have to live with me, too. It’s not just about my loved ones. It’s about me having to look myself in the eye every morning when I get up. It’s about me being able to hold my head up, having self-confidence that comes from knowing I can manage my behavior, and having the pride of knowing I’m in charge of my own fate, even if my brain doesn’t always cooperate.

But I need help managing. I need help from my partner, who constantly amazes me with their patience and their intelligence and their willingness to stick with me — as well as their strength in keeping me from running roughshod over them. I need help not only with encouragement, but also being pushed to see what all I’m capable of, to see how far I can go in life, and to keep tabs on my inner situation as I go. And my partner has given me that regularly over the yeras.

Most of all, they’ve helped me by keeping me honest, by refusing to tolerate my bad behavior, my laziness, my eagerness to just give up. They have “kept on me” about so many, many things that I wanted to just let drop. They have prodded me to do right, when I wanted to just quit or do wrong. And they have flatly refused to put up with my crap, threatening many times to leave my ass if I didn’t get my act together and stop being such an a**hole.  They have told me in no uncertain terms that the tone I was taking was verbally abusive, or that I was frightening them, or I was getting out of line with my snarky comments. They have yelled at me, cussed me out, made me sleep in the guest room, refused to cook me dinner, given me the silent treatment, taken away my credit cards, and nagged-nagged-nagged me till I did what I was supposed to do, anyway. And I have never once doubted that they loved me, and they were doing all of that not because they were mean-spirited or wanted to hurt me, but because we both have standards to live up to, and they weren’t going to let me off the hook that easily.

Now, sure, there have been plenty of times when I’ve railed against their behavior. I’ve moaned and bitched and fussed over their demanding streak, and how hard on me they could be. I’ve wept bitterly and angrily over things they’ve said and done, and I’ve yelled back plenty of times. But in all honesty, I have to credit them and their unwillingness to tolerate my TBI-induced stupidity, aggression, and stinkin’ thinkin’ for much of my success.

And I also have to credit myself. Because frankly, I wouldn’t be with this person — and I wouldn’t have stuck with them for 18 years — if I didn’t have standards of my own. If I didn’t agree with them about the range of acceptable behavior, and what is and is not allowed in our marriage, I wouldn’t be able to tolerate their level of demanding-ness. Rather than finding their standards annoying and aggravating, I find them good and positive reminders of things I already know, but easily lose track of.

Of all the things that make successful TBI recovery possible for me, standards of behavior — and the enforcement of those standards — are some of the most important. Understanding that some kinds of behavior are good and allowed, while others are not, is key. Having a code to live by. Having a set of internal guidelines. Agreeing upon rules about what is and is not okay. And submitting to the discipline of being policed — both from within and without — is key.

And my partner has played a huge role in all of this. If they had been inclined to hold back and not engage with me… to be the silent suffering type who just let me go off as much as I liked, and didn’t challenge me… to put up with my crap and then go talk to friends about how hard I was to live with… to not face me down and make me behave myself — or else… to do like so many people I know, who don’t understand what’s going wrong and don’t want to make waves and piss other people off, so they do nothing besides take the brunt of their loved-ones’ anger/rage/temper/sharp tongue… If my partner had been like that, I would not be as well-off as I am today.

Now, make no mistake — my life is no bed of roses. I’m really struggling, these days, with job stuff, learning difficulties, job performance issues, and extreme fatigue. I’m almost beside myself with frustration and agitation, and I am having a hell of a time sleeping. But I have no doubt that all these things would be catastrophic for me and my career and my living situation, if I didn’t abide by very strict guidelines about what is and is not acceptable, what is and is not okay to do/say/outwardly express. If I just cut myself slack, or if I lived with someone who suffered silently while I went off on tears all the time, I probably wouldn’t be here.

I’d be in jail.

Or on the streets.

And I would be alone.

I’m not kidding, and I’m not being facetious. I don’t say any of this lightly.

So, it may sound a bit overly controlling to some, and it might sound like borderline BDSM, but discipline is one of the biggest keys to my success. I’m not advocating loved ones of TBI survivors being strident harpies who give no quarter and drive their brain-injured loved ones to the brink of madness with an unending string of impossible demands. But there is something to be said for demanding that people do/be/talk/relate better than they are at the moment — and better than they think they can.

Ultimately, I think that we are all capable of far more than we think we are. And the first step towards being/doing/living better, is refusing to be/do/live worse than you have to.

And my ears are ringing

My tinnitus has been driving me nuts, lately.

I just needed to mention that, because it’s one of the most constant aspects of my life experience, and it’s one of the most neglected.

I went to see a neuro once, in hopes of sorting some of this stuff out, and when I asked them about the ringing in my ears, they shrugged their shoulders and said they didn’t know what it might be.

This makes me crazy!!!

Isn’t tinnitus one of the biggies that go along with TBI?

Isn’t TBI a neurological condition?

Aren’t neurologists specialists in neurological conditions?

Why the shrugging of shoulders? Because it’s not posing a danger to my life and limb, or because the neuro is/was clueless about it, or because they have no “cure” for it, so they’re not interested in learning more?

I don’t get it.

I constantly come across people talking about it. Okay, so it’s not life-threatening (that I can think of), and it’s more annoying than anything else, in some cases, but it’s such a part of my life, it seems disproportionately dismisssed.

Enough cursing the darkness. Here’s a candle:

Tinnitus Evaluation and Management Considerations for Persons with Mild Traumatic Brain Injury at http://www.asha.org/members/aud/TinnitusTBI

I haven’t read the whole thing yet, but it’s a start.

And here are Google search results on head injury/brain injury/tbi and tinnitus.

Happy reading, for those afflicted like me.