Finding “normal” again, after all the … TBI “stuff”

So much depends on our view point

Okay, I know that when it comes to recovering from traumatic brain injury, the concept of “new normal” is not my favorite. I have heard so much advice from well-meaning individuals to “accept your limitations” and “get used to things not being as good as they used to be”.

Please. I’m not saying anything more than that, other than that.

Please.

Even the concept of “normal” is not my favorite. I think especially when it’s defined by others, it can be a trap that’s almost impossible to get out of. So, let me define “normal” for these purposes as being a state of mind and body and spirit that is balanced and feels usual — a way of experiencing and being in the world that doesn’t freak you out and put you on edge and make you miserable or anxious… but is part of your regular everyday life. It doesn’t have to do with others’ definitions of how you should being, but rather it’s about how you know yourself to be — and accept yourself. “Normal” life can include stresses that are customary and expected in the course of your everyday life. It can also include an incredible sense of well-being, in spite of all obstacles or difficulties you must overcome.

That’s where I’m at today — it’s not a “new normal” for me. It’s a new take on the old “normal” that used to be part of my everyday world. It’s taken a lot of work and time and energy, but it’s happening for me.

I wish it could happen for more people. Too many individuals give up too quickly, too soon, in the face of seemingly “permanent” conditions — those supposedly “it is what it is” circumstances are anything but permanent. But life is impermanent by nature. Nothing stays the same. And the only reason things remain permanently “effed up”, is if we just stop trying to turn them around.

That’s what so many of us do after a hard loss — whether it be the loss of a loved one, a job, a home, a planned future, and yes, the “normal” life we had before TBI. We just give up. Or we decide that we’re not really cut out for a regular life anymore, because either we don’t deserve it, or we don’t think we can deal with it, or we can’t see our way through to the other side, or we simply run out of steam and get way too tired to deal with much of anything.

And then we adjust to our “new normal” and hope for the best. As though that will help anything.

To me, that kind of acceptance is murderous. It is the exact opposite of what we should be doing after TBI, or any other kind of hard loss. The brain is “plastic” — it adapts and changes based on our surroundings and what we demand of it, and it needs to be retrained. It needs a lot of rest and water and glucose (and I suspect that the main reason for my splitting headache this morning, is because I didn’t give it enough of any of those three things all day yesterday), but if it receives the right TLC, it can — and will — learn to do new things in new ways — or learn to do old things in new ways.

See, that’s the thing — with TBI your thinking can get very rigid and literal and stubborn, and your brain can start telling you that there is ONE WAY AND ONLY ONE WAY TO DO THINGS (and yes, it will tell you that in a very loud voice). The old ways were “right” and the new ways are “wrong”. The old ways were the “only” way, and the new ways will “never work”.

Silly. There is never only one way to do things. There is never only one right way to get from Point A to Point B. There are lots of different ways — we just need to take it upon ourselves to find those different ways, and train our brains to handle life in a slightly different way.

Of course, you tend to get tired, in the midst of all of this. And when you get tired, your brain tends to work less well. That’s a struggle I’ve had for years. However recently, I’ve discovered a way to mitigate the effect of fatigue. It’s not that I’m less tired — I’m pretty wiped out, right now. But I don’t get as bent out of shape over being tired, as I used to. I recognize it, I take it in stride, and I get on with my life anyway. I do what I can, when I can, and I don’t worry about the supposed disaster that may come on the heels of being wiped out and mentally out of it.

I just accept the fact that I’m dog-tired, and I deal with it. I live my life anyway. If I can catch up on my sleep, then great. If I can’t, I don’t worry about it. I factor in the fatigue in my daily life, and I make the necessary adjustments.  I can tell that things aren’t nearly as peachy as they used to be for me. I can tell when I’m a lot less sharp than when I’m rested. And I can really tell when fatigue is really chipping away at my patience, my self-control, my manners. But I don’t let it derail me like I used to. It’s not a tragedy anymore. It’s a pain in my ass that I just need to recognize and deal with, and do the best I can in spite of it all.

This is a monster change for me. The whole realm of physiological after-effects of TBI really threw me for a loop for a long time. I have been hung up on how much my cognitive state suffers from fatigue and stress and anxiety and physical pain. I guess it was pride, really — I don’t want to seem stupid or be the brunt of others’ jokes and ridicule, and when I’m tired and in pain and not doing well, I’ve not been able to handle myself well in the past, so I’ve ended up taking a lot of sh*t from people who didn’t know better. And so, when I would be over-tired, or in pain, or practically deaf from the ringing in my ears, or dealing with some other TBI-related problem, it would make me really anxious and upset… which made everything worse.

In the past months, however, I’ve let a lot of that go. Maybe I just let the whole pride thing go, because I realized it wasn’t worth it, and the only one who has really been keeping tabs has been me. I think that stretching my back and neck on a regular basis has been very good for me. When I crack my back or neck (and it doesn’t take much – I just need to bend or lean in different directions), I get this rush of really great energy and relief, like my brain is actually able to communicate with the rest of my body through my spine. And my head clears, I’m less foggy, and suddenly the colors are a lot brighter than they used to be.

Nice.

Also, I shifted my focus away from remediation of my issues (like trying to catch up on my sleep after the fact), to the Bigger Picture — just living my life the best I can, under all conditions, good or bad. I’ve gone from managing every single aspect of my day…. to letting it all just fly free… to learning how to pick and choose the things I’m going to concentrate on each day. I’ve trained myself pretty well to do the basics again. I can get myself out of bed, have my breakfast, and get ready for work without losing my temper or forgetting if I’ve washed my hair. I’ve figured out how to get myself to work without incidents from my light and noise sensitivities, and I’ve figured out how to structure my days so that I’m doing the things I care most about when I’m the freshest and most with-it.

Now that I’ve got that basic functionality down, I’ve been focusing on relaxing and getting myself in a good space… or, if I’m not in a good space, realizing it and training myself to just deal with it. I used to be pretty good at keeping it together under 85% of difficult conditions. Then, after my TBI in 2004, that slipped to about 15% of difficult conditions, and that’s when my life started to fall apart.

I would say now that I’m getting closer to that 85% I used to be at. I’d say I’m probably doing pretty well under about 75-80% of difficult conditions — I’m not yet performing at my peak, but I’m holding it together and keeping my sh*t together much better than in recent memory, and I’m not having hardly any of the meltdowns that I was having, only a few years ago.

Which is good. I had a bit of a blow-up, the other night when I grilled up some killer steaks, and my spouse decided to take a shower just when all the food was ready to be served. I ended up with a tough piece of meat, because they waited till the last minute to do something they could have done all day, and I lost it. I lost it even more when they acted like I had no reason or right to be upset. I had a long day at work. I was hungry. It was late. I just wanted to enjoy my steak. But no… Oh, never mind. What’s done is done. The thing I need to realize and remember is that sometimes I have every right to be upset, and sometimes I am going to get upset. It’s just that I can’t let it take over and run me the way it used to. I need to let it be about being upset — not being upset about being upset, which is what gets me. And after all is said and done, I definitely have to let it go. And see how I can possibly avoid that next time.

Management issues. Hm.

Well, speaking of management issues, I’ve got to get going and get into my day. I’ve been working on my “stress hardiness” training — consciously trying to toughen myself up and not be so sensitive to the ups and downs of the everyday. I’ve got to get tougher, that’s for sure. Not “ram tough” and all aggressive and over-the-top, but resilient and able to take a hit without collapsing into a heap. I need to get a thicker skin and do better about just dealing with stuff, instead of letting it take over my head and make me crazy. I used to be like that — as I said, 85% of the time. And I am getting better at it.

It’s all about conscious practice — training myself to deal. In some ways, I feel like when I was a kid, and I was learning to do all kinds of things, like handle myself in the adult world. That’s how it feels right now, and while it is kind of strange and deja-vu, it’s like I get a second chance to learn how to do all this stuff. The “first time around”, when I was dealing with TBI stuff and didn’t realize it, so much of what I learned was inaccurate or just plain wrong.

Now I get a “do-over” and I can get my act together in ways that I thought I was before, but actually wasn’t. I can take a new shot at things and lay another foundation for myself, starting from scratch in many ways. It sounds strange to me — I’m nearly 50 years old, and I feel like a 10-year-old kid. But in so many ways, all of us needs to reinvent ourself in one way or another over the course of our lives. Some of us have to do it many times over. So, it’s not so strange or unusual. It’s actually pretty normal — perhaps the most normal thing of all, when it comes to being human.

I think maybe this is what my neuropsych has been trying to explain to me for years, now — that it’s in the nature of human beings to change and grow over time. We don’t always have a say in the areas where we need to change and grow, but we do have a say in how much we accept and adapt to that need for change, and the energy and determination we bring to that change.

How we define “normal” is up to us — if we don’t do it ourselves, someone else’s “normal” can end up defining us.

Onward…

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SO good to be home, for good

It surely is. After traveling overseas in December, and then again in February, I have to say it is pretty awesome to be home for the foreseeable future. They may ask me to travel again in a few months, but I need to pace myself and make sure I don’t overdo it. ‘Cause man, I am wiped.

It’s funny — I didn’t have as much trouble with being tired, when I was over there. I was able to regulate my sleep and I felt pretty functional, overall. But coming back, my sleeping has been all screwed up, and I am having a hard time getting back on track. Add to that the drama at work around the re-org, and all the uncertainties and insecurities, and you end up with a lot of reasons NOT to come to work.

But hey, at least I got a promotion out of it — at least, I think that’s what happened. My title changed to something pretty respectable, which is good. It gives me something to work with, when it comes to politics. It also gets me out of the trenches, which is nice, and puts me on par with managers. Actually “Manager” is part of my new title, which is nice. And it gives me something to parlay into something even better, when I start talking to headhunters again.

In any case, it’s all a grand theater production, when you get down to it, so I can’t get to attached to much of anything. Things change daily, and it’s maddening, if you get your heart set on much of anything. Me? I’m just taking it as it comes and treating it like experience. Because in the end, that’s the only thing I really “own” — not my title, not my job, just my experience. And I can do with it whatever I choose.

It’s funny, while I was traveling, I discovered that there was an awful lot I did not notice, even though my colleague did. I didn’t see a lot of things that they called to my attention, while we were going back and forth to the office (our hotel was about a mile from the office, and we walked to work and back each day, which was good exercise). I was so focused on just making my way from Point A to Point B and beyond… so intent on not getting pulled in different directions… not getting run down by the local drivers… not losing my orientation and getting completely overwhelmed to the point where I’d shut down… that I didn’t see a lot of things that my colleague saw and commented on.

At first it bothered me a little bit. I didn’t want to be so affected by the noise and the lights and the cold and the heat. I didn’t want to have to focus so intently on what was in front of me, that I missed the things around me. I didn’t want to have a limited experience because of my hyper-sensitivities. But that’s how it was.

Then I got to thinking that being that focused was not a bad thing — it kept me from wandering in circles. And when you think about it, there’s no sense in experiencing everything all at once. Where’s the sense of discovery then? Where’s the adventure? It would all become too familiar too soon, too easy, too bland, if I took in everything right from the start.

The way I was, missing so much, the first few times, it left a lot for me to discover later, and I did — with a true sense of newness each time. Because it was new to me.

The other thing about being so focused, was that it blocked out a lot of things that could have been upsetting and could have thrown me off, on what was a very important trip… namely, that my father nearly died two days before I flew out, and they did a pretty significant medical procedure on him, and I still managed to “stay in the game” while maintaining good contact with him and my mother and the rest of my family in the hours leading up to my departure. All the focus kept me on track. My father is fine. He’s on the mend. So, I wasn’t being a “bad child” and neglectful, because I wasn’t thrown by his illness. And that’s a good feeling.

The other thing about the focus, though, is that I completely forgot about him being sick, much of the time I was there — and even when I talked with my neuropsych on Monday. You’d think that I’d remember that and discuss the situation, but I completely forgot about it. Jet lag… yeah. And such intent focus on what was in front of me, that I overlooked that important event. Completely forgot it had ever happened.

Whoever said “Happiness is good health and a bad memory,” was right.

And now I am exhausted. It’s time to go to bed. I am so done, it’s not even funny.

So, off I go.

Till later…

Ah, Groundhog Day…

I have a feeling I’ve been here before…

I’m not talking about the recent event when the behavior of a groundhog (or groundhogs, depending on your regional preference) determines our future. I’m talking about the movie,”Groundhog Day”  where Bill Murray’s character goes through the same day over and over and over again.

This is my life in a nutshell. I cycle through the same experiences / crap / joys / sorrows on a regular basis, each time without much active recollection of how it was before and what my experience was then. It applies to the good things, as well as the bad things, and my neuropsych is repeatedly surprised that I’m wrangling with the same issues that I was wrangling with, several weeks, months, or even years ago. Sometimes I have “new” experiences that are repeats of what I experienced only the day before, and I have to go through the whole learning process all over again.

One example I can think of was back in December, when I had that business trip overseas. Each day, I got up with this terrible, terrible dread — almost crippling anxiety over what was going to happen that day. It was awful, and I literally did not want to leave my room. I just wanted to stay behind closed doors, where I had no interaction with anyone, where I couldn’t possibly screw things up, and where I could move at my own pace and not adapt to anything new or different around me.

And each day, I literally forced myself to get dressed and go out into the world. Each day, I rediscovered that I was able to communicate, that I was capable of understanding what others were saying, even if I didn’t get every single word, and that the world outside was something to be explored and discovered, not dreaded and avoided.

Then the next day when I got up again, it was back to battling the crippling dread, the fear, the anxiety… the monumental effort of getting myself OUT the door… and the happy discovery that I could indeed handle myself well in the world beyond the hotel room. And at the end of each day, I was able to kick back and really enjoy myself in that space, just reveling — all over again — in the “discovery” that I was really going to be okay.

Now I have another business trip coming up that will take me overseas. This time I am going to a country where I do not speak the language. I have been studying a bit, which has been kind of funny — I found some audio files to learn from, but when I started to listen to them, it turned out to be all “Stop or I’ll shoot!” and “Put down your weapon!” and “How many armed men are there?” — apparently a law enforcement or military training course. At least I know how to say “Don’t shoot!” if I get into any trouble while I’m on my trip. You never know… there are some pretty rough neighborhoods where I’m going.

Anyway, the point I’m making is that for some reason, I seem to have just a terrible, terrible memory for things that have happened to me before. This is true of good things… and bad things. I seem to get myself into situations, over and over again, doing the same thing and expecting different results, and then I suffer and chafe when things don’t turn out like I think they’re going to.

Like trying to get out of the house to get to work… Time and time again, I get up thinking that I can just take a little time to check my email and/or do some little things around the house, and then I’ll be able to get to work on time. And time and time again, I get sidetracked on one thing or another… and I end up rushing and being later than I wanted to be. I make up the difference at the back end, of course, staying late — even later than I would have to, actually, because I start to warm up around 6 p.m., and it’s hard for me to take a break when I’m finally making good progress. Even so, even if I do make up the difference in the hours, the simple fact is that I do this over and over again, thinking that this time it will be different.

Insane? Well, according to some, it is. Whatever you call it, it gets frustrating, and I feel like a complete idiot.

I guess part of the equation of this apparent failure to learn, is the fact that I have to stay very present in the current moment, or I can really lose my bearings. I think this 100% here-and-now mindset has developed over years of having to navigate so many issues — light sensitivity, noise sensitivity, exhaustion, vertigo, nausea, pain of all kinds, headache, distractability, and more — but still needing to be functional. I think I just developed the habit of focusing so completely on the present so that I could function in that moment, that everything else — before and after — just disappears. Or it never has a chance to get set in my mind.

I think also the stress of daily living over the years has impaired my ability to learn. Just having to deal with all the sh*t of my issues and symptoms and the screw-ups and the adjustments and the confusions and distractions… it can get pretty stressful, and I’m sure it’s had some impact on my ability to learn.

Then again, in other areas I learn extremely well — like this language thing. I’m actually picking up a lot of good stuff, and I think I’ll be able to at least ask people for help and understand basic numbers and directions, and be able to thank people for their help, without too much struggle. Languages seem to come pretty naturally to me, and it surprises me how much sense they make to me after a relatively short period of time.

So, it’s not like I’m completely disabled with my learning. But experiential learning? There, again and again, I end up going through the same things, as though it were the first time ever.

Well, I can’t worry about it. If I approach it like it’s a grand adventure of constant discovery, and I treat each situation like a fun opportunity to have a “new” experience, it’s fine. It keeps me fresh, actually. It keeps me interested in my life. It’s never boring — that’s for sure. The worst thing I can do, is treat myself this means there’s something wrong with me, that it means I’m somehow damaged. If I don’t judge myself and I just accept that about myself — and come up with ways to work with/around my very limited memory… and I don’t get it in my head that this means I have early-onset dementia and I’m losing my mind…. I can work with this.

Hell, I’ve been working with it for as long as I can remember. I just “get lost” sometimes and I have to find my way out of the shadows and dead-ends… which I can do pretty well. I’ve had plenty of practice, you see.

Anyway, life goes on. I have a number of very interesting projects I am working on, and that’s keeping me interested and engaged in my life. I’m learning new things pretty well, and I feel good. I also got a lot of sleep yesterday afternoon, after I was done with my work. I worked from home, so I was able to just crawl into bed when I was done for the day. That was nice. I got about 7 hours of sleep last night, so that’s good, too. And I have all day today and all day tomorrow to kick back and take care of myself. Because I’m flying out in another week, and I need to be healthy and whole to make this trip.

So it goes. Part of me would like to have a better recollection of the things that I have experienced in the past, so that I don’t keep making the same mistakes, and I don’t keep pushing myself and wearing myself out. And I’m thinking about ways I could do that — maybe keep a log of what works for me in different situations, so I can draw on what has worked for me in the past… I had that kind of a log going, about 3 years ago, and it was working well for me. I think maybe I need to resurrect it, so I can continue to draw on my experiences and get my sh*t together better than I currently am. It’s an idea….

Anyway, the day is waiting, and I’ve got to get a move on. It’s always interesting and never boring… and I need to remind myself of how things have been in the past, as I work through my present and into my future.

I’ve been here before, I’m sure… now I need to figure out how to make the best of it.

 

TBI Recovery – like life on the high seas

Avast there…

I’ve heard it said that it takes about seven years of recovery for a person to start feeling “like themself” again after traumatic brain injury. That sounds about right to me. And now that I’ve been at it (actively) since 2007, I’m coming up on seven years — next year.

What a long, strange trip it’s been. From nearly losing everything, to sabotaging job after job, to watching my friends go away, to the relationship/marriage troubles and health issues, to slowly building myself back… it has been a trip. But it’s finally starting to feel like things are stabilizing for me.

When I say “things” I mean internal things. Not external things. Learning to live with TBI is like going to sea and learning to walk across the deck of a ship that’s rolling through all sorts of seas. Between the sensory issues, the focusing issues, the distraction problems, the mood swings, the irrational and literal and rigid thinking issues… if it’s not one thing, it’s another, and just getting used to the idea that this is just how things are, has been a battle in itself.

But that’s the deal. This is how things are. And there’s no sense in trying to tamp it all down and get things to chill, because no sooner does one wave pass, than another comes along.

Walking across the deck… yeah. That’s about the best metaphor I can think of. And it puts me in the mood to read some seafaring adventure stories – Captains Courageous, Treasure Island, Two Years Before The Mast… stories I remember from when I was younger, that I really loved and enjoyed. It kinda puts me in the mood to tie knots with heavy rope… 🙂

And that’s one thing that the seafaring metaphor does for me — it raises dealing with TBI issues from a hindrance and an inconvenience and a problem, to being just part of what I have to deal with on the “high seas” of life. Rather than turning the issues into problems and vexations, it turns my ability to deal with them into strengths and abilities that I didn’t have before. I’ve been deep sea fishing a few times, and I know from personal experience that “sea legs” don’t just happen overnight. It takes time. You have to learn to roll with it. I’ve never been out to sea long enough for this to “take” with me, but I would imagine that I could learn to do just about anything, given the opportunity and time.

And opportunity and time are just what I have, with regard to this stuff.

Today, I’m pretty dizzy and off-balance. I’m also having trouble keeping focused on one thing at a time. I’m working from home today, giving myself one more day to recoup before I go back into the office, and I still don’t have my full strength back. No surprises there – I was flat on my back for a week, and this won’t fix itself overnight. I just feel “off” today — spacey and tired and weakened. I’ll see how it goes, with getting my work done. And I’ll see how it goes, taking frequent breaks to just get my head settled again.

It’s not so very different from some days when I wake up after days and weeks of not getting enough sleep, and I have to work at my peak level. It’s not so very different from some days when I’m off balance and foggy for no reason that I can tell at all. It’s not so very different from dealing with the light and noise sensitivities, the headaches, the malaise… it’s not very different from that at all. And the emotional impact it has — the frustration, the short temper, the anger, the temper flashes from a very short fuse — that’s very similar, as well.

It’s all part of life on the high seas.

Of course, it’s easy for me to say all this, years on down the line after my latest concussion injury in 2004. At the very start, when nothing made sense and I was dealing with so many, many issues that I didn’t recognize and didn’t realize were a problem, the whole business made me sick. Literally. Like being out at sea for the first time, I was in a constant state of nausea and disequilibrium. I felt stupid, I felt like an idiot, and I felt so incredibly defective because I couldn’t regulate my emotions or my behavior. Everything was falling apart around me, and I didn’t know why. And not knowing made it even worse. Not knowing that I didn’t know…  that was the worst thing of all.

So many times, I look at the stats for this blog and I see people searching for “concussion now I’m dumb” or “does concussion make you stupid”. And I remember so well what it was like to feel so stupid, all of a sudden, and not know why nothing was working for me anymore. I seriously didn’t have a clue. I knew I had hit my head. I knew I had gotten hurt. But I had no idea the effects could be as big and impactful as they turned out to be. I thought it would all clear up in a matter of a few days.

How wrong I was.

What I didn’t realize was that each time my head bounced off those stairs, connections in my brain got twisted and frayed, possibly even severed. What I didn’t realize was that those connections had taken a lifetime to put in place, and now that they were disrupted, I was going to need to practice and practice and practice, rehearse and rehearse and rehearse… doing many of the things I used to do so easily, but now had to learn to do in a slightly different way. I almost wish that the differences had been obvious — things like walking and talking. But it was really the little things, like learning and managing emotions and remembering details, that had been disrupted. And those disruptions were even more upsetting, because they weren’t something that others could see or often even detect. The only one who could tell a real difference was me… And inside, I was a torn-up mess.

Of course, years on down the line, I can look back with some perspective and understand what was going on. But at the time, before I learned all I have in the past 6-7 years, I had no perspective. I had no information. And I was going nowhere fast. No, correction — I was going somewhere fast — down, down, down. I’m just lucky that I noticed something was wrong before I went over the edge and lost everything.

Not everyone is as fortunate as I am. Not everyone manages to get it as quickly as I did. A whole lot of people struggle in silence and tell themselves to just push on through… never getting the help they need. And that’s a terrible, awful waste. Not everyone understands that the high seas they are on, are going to always be there… that once you’re on the TBI / PCS  ship, you’re not getting off. You may have some calm days, you may have some serene days, but you’ll also have fog and shoals and doldrums… and the storms will always come up again — you can bank on that.

Not everyone is stuck for all time with post-concussive issues, and thank God for that. But for those of us who are, probably the best thing to do is just settle into the daily routine of sailing the high seas… get your sea legs… and get ready for adventure. You never know, you might just come across some treasure, along the way.

Ahoy….

TBI Heroes – ‘Cause that’s how everyone wants it

Junior went too soon. Buddy, you are missed.

As I sit here in bed, surrounded by my flu meds and fluids, I have plenty of time to think about things I normally don’t, in the course of my busy everyday life. The (not unexpected) news that Junior Seau had CTE at the time he shot himself in the chest, last May, has been on my mind. A lot.

And as I’ve been weighing the pros and cons of going back to work in time to work a professional conference (we’re talking about 5 solid days of being on my feet, running and working and also doing a presentation for a colleague who can’t make it), I have to wonder what in hell’s name makes me think I should even consider doing this?!

Seriously, it would be madness for me to dive right into that. See, the whole conference thing also includes air travel. In an enclosed aircraft. During one of the worst flu outbreaks in something like 10 years. And it includes being surrounded by thousands of people from all over the country, some of whom may be sick, themselves. And it includes going-going-going for 12-14 hours a day, for 5 days straight. I’ve worked this event twice before, and even when I was hale and hearty and feeling fine, I was completely wiped out by the end. If I push it, this time, then what? I end up back in the hospital?

For what?

Am I insane?

Actually, no. I’m just in the habit of pushing myself. Because unless I push, nothing gets done. See, this is what most people don’t get about me and my situation. I cover things up really well. I mean really well.

Who would ever guess that on any given day I could wake up being so wobbly and off-balance, that if I don’t maintain some contact with an upright surface, such as a wall or a piece of furniture, I’m going to fall over? I’ve learned to mask that extremely well, being ultra nonchalant as I stroll along at a “leisurely” pace. I’ve learned, over the years, how to keep myself upright by keeping a very straight posture – which is probably why some people assume I have a military background – I don’t, they just seem to assume that if I stand up straight I must have been trained. Actually, I have been trained – by life. Because I’ve learned the consequences of not keeping my posture aligned, and it’s no damn’ fun.

And who would ever guess that the “cool shades” I wear are not at all for style’s sake, but to keep myself from losing it over the bright lights all around me? I wear sunglasses in the winter as well as the summer, because the snow is even more glaring on me than summer sunlight. Some days, when I am really tired, any variation in light – a sudden flash or a bright piercing sunbeam – can set off klaxon alarms in my head.

Noise, too — there’s nothing like having the voices of your loved ones turned into spikes driven into your brain, because you’ve reached just the right level of fatigue and sensory overload. Not being able to listen to the songs sung by one of your sibling’s kids, when they just put something on YouTube and they want to sing it for you in person… that’s a pretty lousy way to spend a Christmas afternoon.  Of course, you can’t let on that you’re baked, you can’t tolerate any more noise, and if anyone says one more thing to you, your head is going to implode. You just suck it up and move on. You think of other things. You put on a happy face. You keep going and keep smiling.

Because that’s what everyone needs.

They don’t need to know the gory details of how you haven’t been able to sleep a full night for months, now…. and how everything that touches your skin feels like it’s burning through to the bone… and how the ringing in your ears is drowning out everything, which is why you have to keep asking people to repeat themselves… and how you haven’t actually understood much of what anyone has said to you for the past two hours, and most of the stuff you did understand, you’ve since forgotten. People don’t want to know about that. They don’t want to know about the increasingly frequent memory lapses, the flawed judgment calls, the time management issues, the distractability. They don’t want to hear about how bone-tired you are, how confused you are, how frustrated you are with every damn thing that comes across your path.

They don’t want to know you’ve been simmering at a near-boil for days on end, now, blowing up at the people closest to you, because you’re so fried by all the sensory overload and the fatigue and the defeat of never being able to out-run or out-maneuver these things. They don’t want to know that as much as you might get a bit of relief, now and then, the issues will still be back later, and you can count on that. They don’t want to know about the jumpiness, the hair trigger temper, the flashes of rage that tear through your insides like fire across a dry prairie. They don’t want to know about how you’ve used just about every “tool in your toolbox” to keep it together, but things are raveling just a little bit thin, these days.

Nope. They don’t want to hear about that — any of it. Especially if they know you as a can-do type of person who always manages to figure things out. If you’re the go-to person in their life, they depend on you NOT being any of the things you actually feel like, day in and day out. And God forbid you should ever speak up and ask for some help.

Because when you do that, they either laugh at you, or they get freaked out, because nobody — but nobody — can seem to hear anything about TBI or concussion or any other sort of brain issue, without thinking about themself and questioning themself and confronting the bare-ass fact that deep down inside, the heroes are still human.

I’ve been a hero for a long, long time. At work, I’ve often had a sort of “folk hero” reputation for having accomplished the things I did. Because I never gave up. Because I looked the beast in the eye and still moved forward. Because I took on projects that others ran from, and I made it all work in the end. I’ve been a champion for as long as I can remember, and I’ve been rewarded for it, too.

So, when I fell in 2004, and that all started to unravel, the hammer came down pretty hard. I was failing. I was coming up short. I was not living up to expectations. And that was unacceptable. People talk about how you shouldn’t be afraid to fail, how you shouldn’t be afraid to come up short sometimes. Those people write books for a living, clearly, and they obviously don’t have their level of compensation and their family’s welfare on the line, every time they are tested. Those people piss me off. Because the ones who write our paychecks (and often have us by the short-n-curlies) attach a price to our performance.

Not only that, but the whole world around us attaches a price to our performance. And this is the thing that makes me absolutely nuts about the people who go on and on about how “formative” failure can be. Yeah, homelessness is formative, too. As is long-term unemployment. The price of failure in today’s world is NOT just popularity — is is your very way of life. It can even be your life. Period.

And how much moreso for someone like Junior Seau? Someone on whose shoulders so much rested — the restaurant, the foundation, the reputation…. Someone who had flown so high, and was never going to fly that high again, as far as he could tell. To grapple with the things I’ve got going on, in my low-profile life as just-about-nobody, is hard enough. But to do it in the glare of the public eye? How the hell do you do that?

Maybe, you just don’t.

And in all the talk about Junior Seau’s death and CTE and changes that need to be made to football, the thing that’s been missing for me — the big, big thing that seems like it might actually make a substantive difference in all this — is how people with brain injuries are treated… How anybody who doesn’t “measure up” is treated by once-adoring fans.  Once you set the bar high, it’s your job to keep out-doing yourself and keep it moving ever upwards, ever onwards. But that’s a fantasy and a myth born of Hollywood and personal improvement gurus. And it puts the onus of keeping your shit together on the person who might actually need the most help.

If the truth be told, we live in an exacting and unforgiving society. I have no idea how we got to this place, where everyone seems to need to believe they are invincible — or could be. And I have no idea how we have created a culture where it is perfectly okay to punish those who don’t live up to our expectations, as though they were homicidal criminals. Life is full of disappointments. And yet we carry on as though we should never, ever be disappointed, and we should always get exactly what we want, because we “deserve” it.

What exactly do we “deserve” anyway? That others meet our fantastical expectations in every way, until the end of time? Who says anyone owes us that? Who says we are entitled? The thing of it is, most of us structure our lives around the roles we play and the ways we fit into each others’ lives, within those roles. So, when our abilities change and we need to adjust our roles, it can be terribly frightening for others to deal with us. Because a change to us is a change to them. And if they’re not ready to shoulder more of the “load” of making sense of life with their own resources (rather than ours), then the loss of our presence in their lives in that certain role, can be terribly frightening, disorienting, almost incapacitating.

How very human of us.

I guess in the end, there are no easy answers, and it’s simple enough to get upset and pissed off over sad things that should never have happened, but did.

When all is said and done, the fact of the matter is, some of us are hero material. For one reason or another, we have learned how to push ourselves through thick and thin… and come out victorious on the other side. Some of us know how to put aside our own personal safety and well-being for the sake of others. And some of us are in the habit of doing that on a regular basis. Now, I’m no firefighter or first responder or doctor without borders, but I am in the habit of putting the needs of the many over my own individual wishes and needs. And it’s served others well over the years.

Now, with this flu still raging, I’m doing a reality check and seeing quite clearly that this is no time to be a hero. If can’t do the job at the conference next week, someone else is going to have to take my place. There may be others working the event who are also sick and choose to work it, anyway, but this one I’m going to have to sit out. I hate the idea and it goes against everything in me, but I’ve just got to do it, this time.

It’s not what I want. And it’s not what the folks I’m working with want. But it’s what’s got to be done. This one time, I don’t have to be a hero.

Then and Now – TBI Issue Management

Almost year ago, I published a list of 84 ways TBI can make your life really interesting, which is a list of 84 different issues that can arise as a result of a traumatic brain injury. I pulled together the list from a number of different reputable sources — books, websites, papers — and sorted them by type, from behavioral to communication to mental to emotional, etc.

The list itself actually dates back to about 2008, when I put together a list of all the issues I’d been having that I needed to manage. I’ve been using this list for several years, now, to monitor and track the things that make my life more challenging, and it’s really helped a lot — sometimes, mainly because it just reminds me that I have these issues and I need to be mindful of them.

It’s tough to manage things that you can’t see, after all…

But with things in plain view, I was able to manage. At first, it was tough, but eventually I learned. It took a lot of work and a willingness to be honest about what was going on with me — like any self-improvement work, I suppose. Except in my case, instead of it being “all in my head/heart”, I had some underlying neurological issues that played into the whole picture.

In a way, having the underlying neurological issues was a relief. I had felt for the longest time (30+ years) like there was something wrong with ME, for how I behaved and the ways I handled the world around me. I thought I wasn’t trying hard enough. Or I was being lazy. Or stupid. Or I was deliberately sabotaging myself. As it turns out, I was dealing with neurological issues which in and of themselves weren’t terribly severe, but which combined to exacerbate each other to the point where I was practically disabled in some ways.

I had plenty of talent and plenty of smarts, but contrary to all appearances, I couldn’t seem to get my act together. I had told myself for years that I was “choosing” to not employ my talents fully, when in fact I was constantly undermined by distractability, fatigue, anxiety, constant restlessness, agitation, chronic pain, and sensory sensitivities (to light and sound) that derailed me in times when I needed to be at my best. I was on a constant roller coaster of up and down emotions, taking two steps forward, two steps sidewards, two steps back, three steps forward, and getting all turned around in the process. Anxiety, not intention, determined my life’s direction, and I can tell you, I was going nowhere fast.

Even in those times when I was feeling like I was getting somewhere, I sometimes got hurt again, and then I had the setback of yet another tbi to deal with.

All the while, there I was, thinking there was something wrong with ME… I was a loser, I was a waste of space, I was a charter member of underachiever’s anonymous. And that sense was probably just as debilitating as any of my neurological/physical issues.

I wasn’t doing myself any favors by being so down on myself.

But when I started learning about TBI and started tracking my issues in light of my neurological situation and background, things started to really come together. I was also amazingly fortunate to connect with a neuropsychologist who believed (as I did) that the problems I had were “fixable” and they’ve been working with me to help me think differently about myself and my abilities, and see my whole life, not only my tbi’s, as an opportunity to learn and grow.

Once I quit blaming myself and being ashamed of my issues, a lot of my troubles started to clear.

But it wasn’t until I took a close look at what was going on with me and got honest about the havoc it was wreaking in my life, that I was able to DO anything about it.

I could have gone on indefinitely, telling myself — and the world — that “That’s just the way I am – you got a problem with that?!” Being constantly defensive about my limitations and difficulties and pulling out all the stops to justify them and defend my “right” to be a screw-up. It’s how I’d been living for close to 40 years, so why stop now?

Well, watching everything you hold dear go to shit, and realizing that you’ve got no foundation (financial, professional, interpersonal) to support your life has a way of forcing you to get honest. That’s why I stopped all the B.S. in my head. Plus, I was really tired of feeling like crap all the time, constantly wondering why nothing ever worked out the way I wanted/expected it to.

Anyway, I guess the bottom line is, you can’t fix something if you don’t know it’s broken. And getting past the idea that it was ME that was broken, rather than how my brain was working, was an important part of restoring my daily and long-term functionality.

Speaking of functionality, I’ve got errands to run. Have a good day, everyone. Stay strong.

 

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 problem with sunny summertime

Checking my blog stats, I see more and more people are finding their way here when searching for info about “light sensitivity”.

Well, it is getting to be summer, after all, which means bright, bright days that are getting longer and longer.

I don’t usually think of myself as being light sensitive — or “photosensitive” — but one sure way to push me over the edge, is by subjecting me to constant exposure to bright light without my sunglasses. If I spend time outside on a sunny day without wearing sunglasses, I become highly agitated and frantic and hyper-reactive. I blow up very easily and melt down easily, too. It’s embarrassing, to be so sensitive to light and not be able to “keep it together” over something as basic as a sunny day, but there we have it. I’m light-sensitive, and that’s that.

To cut down on the impact, I wear amber lenses, which block out certain spectra better than gray or green lenses. I didn’t realize that this was objectively true, till recently, when I read that amber blocks certain spectra better than others. All I knew was, amber lenses “felt better” to me.

I also wear prescription sunglasses that have larger frames than are fashionable, these days. My frames are actually about 20 years old, and I bought them when I got my first expensive eyeglass frames. I have taken really good care of them, because I paid (at that time) almost half a week’s salary for them — I didn’t have a job that paid that well, but I wanted to get a really good set of glasses frames, so I did. Needless to say, those frames are very precious to me and I go out of my way to take really good care of them.

The thing is, they’re not very fashionable. They look very 1990, being large and round, not like the current trend which is short and rectangular. If I went with smaller frames, however, I wouldn’t have the kind of protection from light that I need. I need larger frames, so I forego fashion to keep myself sane.

Light sensitivity is a crazy thing…  And — like so many other issues I have — it sneaks up on me, when I’m not paying attention to it. So, I pay attention. And it pays off.

Basic ideas behind recovery from TBI

I’m working my way through the Give Back Orlando book Teaching Yourself to Prevent Head-Injured Moments by Dr. Larry Schutz, and making mental notes as I go. I’m also highlighting. And I also need to record some of my own impressions here. So far, I really like the book, and it’s a good reminder as well as an eye-opener about dealing with TBI.

In the “whole document” version  of the ebook, on page 1, Dr. Schutz says this (and my comments are in bold):

Here are the basic ideas behind recovery from TBI:

1. Head injuries don’t heal up. The injury continues to cause problems in your life until you recognize that you have to fix it and get it done. Fixing means finding a better way to run your brain. The fix works only as long as you run it in the new way. So fixing your brain is not a job you finish doing—it’s a way of life.

True – my injuries did cause me problems in my life. A lot of problems, as I’ve had a number of TBIs. I’ve fallen down stairs, gotten knocked out by mean kids, gotten hit on the head and fallen, had sports concussions… and let’s not forget the car accidents. Problems I encountered for practically my whole life include:

  • sensory problems — painfully hypersensitive hearing, experiencing touch as pain, tactile defensiveness, crappy vestibular abilities, trouble hearing and understanding what people were saying to me
  • memory problems & learning difficulties
  • social problems — hard time deciphering what people were saying to me
  • meltdowns and spells of loss of consciousness/bodily control
  • trouble holding down jobs
  • trouble making and keeping friends
  • just trouble

It wasn’t until I started to get my head around the fact that my head injuries had led to these problems — and many more — that I started to feel like I might actually be able to have a decent life and do something about this mess I thought was all my fault.

2. Brain fixes are not obvious. The injury makes your brain send out a signal that you’re doing fine. Those who take this signal at face value don’t realize that the injury messed up their thinking skills, so they don’t learn to fix the problem no matter how many years pass. Survivors only get on top of the problem when they start to recognize that the brain injury is affecting them, and set about finding out what it has done.

Yeah, I’m fine! Or so my brain tells me. This is so true. I have gotten myself into so many tough spots, just because I wasn’t processing the signals properly. I’ve nearly been shot, and I was almost abducted (twice) when I was younger, just because I “boldly” wandered into dangerous territory without guessing things were amiss. I’ve taken on jobs that I had no business doing, and I’ve pushed myself past my limits, over and over and over again, thinking that I was fine and I could take on one more thing. The “one more thing” often pushed me over the edge and ended up frying my system horribly — and sometimes putting others in danger from my meltdowns. But my brain told me I was fine, and I could handle one more big undertaking on 4 hours of sleep!

3. The only good fix for a damaged brain is self-therapy. No doctor or psychologist or therapist, or for that matter, family member or friend or priest or minister or rabbi can fix you, because what is wrong with you is happening inside your head. You are running the programs you created to run your old brain. Those programs don’t work properly on your new brain. Until you learn to re-program the things you do, you’ll go on having head-injured moments, unexpected foul-ups that make your life harder.

It’s good to hear someone say this. I know my neuropsychologist and my therapist would love me to seek as much professional help as I can, and I shall. But there’s only so much someone else can do for me, and they can’t walk around with me, every waking minute, holding my hand, making sure I’m okay. Nor should they. I need to learn to stand on my own feet. Plus, even if I did have someone to assist me at a moment’s notice, they aren’t mind-readers, and they can’t fix what’s wrong — and what only I  know is going on, in there. It’s all happening inside my head, and I usually need to adjust and fix things on a moment’s notice. Trying to explain to another person WTF is going on with me, the context, the texture, the subtleties, is just not practical — or practice-able.

4. Most survivors never figure out how to fix the injury; they go on to have the problems for the rest of their lives. Fixing a head injury is unnatural, and it’s not easy to do. It’s not a common-sense process—if it were, most people would be doing it on their own. It requires watching yourself closely, changing your habits, and developing self-discipline. However, once you set up the new habits, it’s not complicated like rocket science. Once you set up a basic program of self-therapy, recovery begins to grow from there. Your recovery gains momentum, becomes more real to you, and feels more rewarding, the more you work your program.

How true, how true! The one “fix” I’ve found for my own issues, is constant vigilance and developing the habit of paying attention to my thought processes — and my actions. It’s not a natural thing to do, and it’s not easy. But it has to be done. Or else. The good thing is, once I got in the habit of paying attention to those things that were causing me problems, and adjusting as I went, it did become habitual. And my recovery has gained momentum.

5. Most people are accustomed to looking to their doctors to fix them when the problem is an illness or an injury. That is not likely to be a good strategy when it comes to TBI. Doctors receive no training on how to fix this injury, even if they specialized in neurology, psychiatry, or rehabilitation. In the United States, only a handful of doctors and other professionals are experts on how to fix TBI. You probably don’t have any in your home town. Your best bet is to learn how to do the fix yourself, and to get your family to help.

It’s a good thing I’ve never been that dependent on doctors. I guess my long history of TBI contrived to make me too ornery and too spacey and non-compliant, to be a good patient. Which is ironically what has saved my ass, up to a couple of years ago.

But ’round about 2007, I started down this diagnostic path, and I started to really dig into the whole medical thing with TBI and other medical issues I’ve been having. I got it in my head that I needed to give doctors what they needed to help me. But they haven’t had the willingness (the training?) to be of much help to me. Mostly, what I’ve heard from them has been “It’s just stress” or “It’s psychological” or (they don’t say this, but they imply it and their actions say it loud and clear) “You’re just trying to get attention, when there’s really nothing wrong with you.” Maddening. And my little brain has ingested that input and made my failure to get adequate medical help about me, rather than about the shortcomings of the medical system and typical medical training.

I may rail and rant about the problems with doctors, but there’s a part of me that thinks the real problem is me. I’m a bad patient. I’m a head-case. I’m not really in need of help. There are many other people who have real problems, and I need to get out of the way for them to get the help they need.

Unfortunately, after dealing with doctors for the past year and a half, I’ve gotten it into my head that being a bad patient makes me a bad person, that I’m not being helpful enough, that I’m not being “good”. But I have to seriously rethink this. And I have to say that, given my ability to recover and get on with my life, it actually saved me a whole lot of pain and suffering, to avoid the medical establishment, to not expect much from doctors and avoid them like the plague (except when absolutely necessary), and to find my own way in the world.

So far, it’s enabled me to just live my life. Which is more than I can say for how I’ve been feeling (and functioning) for the past year and a half.

6. You should not believe what anyone tells you about TBI. It has become a hot topic lately, so there are now many Web sites distributing partially accurate or even totally bogus information. Everyone claims to be an expert. If you have good sense, you won’t take what I say on faith, either. There are only a few reasonable ways to put confidence in what people tell you. The first one is the approval of professional credentialing organizations. <snip for brevity’s sake> These are major league accrediting bodies in TBI. However, there are also bogus accrediting bodies, so when you check out credentials, you also need to check out the accrediting agencies. Information is also likely to be more reliable if it has been published in a major professional journal. This manual provides you with a set of articles, chapters, and books that are expert sources for the information presented. Watch for the most important journals, such as the Journal of Head Trauma Rehabilitation and Brain Injury. Getting bad advice is awfully easy to do, and it can harm your recovery.

I’ll say! I’m starting to see more and more how lucky I am that I’ve been able to build my recovery outside of the medical/rehab context. Granted, it may have been helpful for me to realize that I had serious issues going on with me as a direct result of head injuries, but I think that not growing up with the idea that I was brain damaged did me a whole lot of good. Even though my brain was telling me everything was okay, when it wasn’t, the fact that I have grown up and moved through my adulthood with this blissfully ignorant self-confidence of mine, has worked in my favor. I haven’t been in the unfortunate position of soliciting information from charlatans and snake oil salesmen. I haven’t made myself dependent on “experts” for my strategies. I’ve been a lone wolf, for the most part, and while things have NOT been easy, I’m sure they’ve been a whole lot less hard, than if I’d been seeking out help on my own resources.

One of the big problems with TBI that I see, is that it makes it all the harder for us to seek out qualified expert help. It makes it hard for us to see what our problems are, in the first place. In order to ask for help, you need to know what exactly the problem is. That’s one of the problems with TBI and the medical establishment, from where I’m sitting — they rely on us telling them what the problem is, but if you are a TBI survivor, you may not even know what the problem is. Conundrum! So you and your doctor end up sitting there looking at each other like idiots, not sure where to begin, or even how to begin.

That’s been my experience, anyway.

So, the next problem that comes up, is that there are these charlatans and poseurs who claim to know WTF is going on with you and how to fix it. They prey on us, telling us what we want to hear, offering us what we so desperately need — “answers” of some kind about what’s going on inside our brains. They give us false hope, and/or they point us in some bogus direction, and/or they take our money, and/or they misrepresent us to insurance companies, so we can’t get coverage or additional help. And we’re screwed. Because we need help, but we don’t know how to get it. And the people who offer us the most are the ones who have the least to offer — and in fact, take away the most.

Like I said, conundrum!

7. You can get rehabilitation for TBI in almost any town in the USA, but most of it is not fully specialized. We have had effective rehabilitation in this country since 1978, and the knowledge of how to do it has spread slowly. I trained under one of designers of the original high-tech program. That approach is still the most effective method we have. If you have the $70,000, you should consider attending that program. It is located at New York University’s Rusk Institute of Rehabilitation Medicine, under the field’s founder, Dr. Yehuda Ben-Yishay. Expert programs are also offered at Barrow Neurologic Institute in Phoenix, Arizona, under Dr. George Prigatano, Robert Wood Johnson Rehabilitation Institute in Edison, New Jersey (where I trained), under Dr. Keith Cicerone, or Mount Sinai Hospital in New York, under Dr. Wayne Gordon.

This just blows my mind — as though it needs to be blown any more. We all have brains. Thousands upon thousands of people suffer brain injury each year. There are ways to fix what’s wrong. But yet, we can’t get easy access to this rehab, unless we have $70,000 and/or insurance that will cover it. Good grief. It’s so crazy and distressing, I can’t even comment on it further.

8. People who find a knowledgeable self-therapy teacher don’t always learn self-therapy. Many of them are not willing to learn. To learn self-therapy, you need to admit that you don’t know everything you need to know about your brain. Some people believe they already know themselves and reject the idea that someone else can teach them about themselves. If you believe this, self-therapy will not work for you. This guide book can help you only if you are open to learning things about yourself that you don’t already know.

Well, I am open to learning new things about myself. I am more than willing to learn. I have over 35 years of evidence that all is not right with me, and I need to make some changes. I’m not proud in this respect. I’m borderline desperate. Which makes me a pretty good candidate for this kind of work. Self-therapy is, as far as I’m concerned, just about the only viable alternative for me at this point, and I’m willing to do what needs to be done. Yes, I’ll seek out help from qualified therapists. Yes, I’ll get help from neuropsychologists. Yes, I’ll do everything I can to avail myself of the resources available to me. But at some level, I’ve got to do the work myself to fix myself. No, I’m not crazy for thinking this stuff can be fixed. It can. People do it. It’s been done. Why not me?

Indeed, why not me? I’m brain-injured, I’m in more trouble than I care to admit, I get into trouble constantly, I have plenty of head-injured moments through the course of each week, and I’m more than willing to do what needs to be done to address the situation. Most importantly, I am not prepared to live my life marginally, missing out on all the opportunities out there to learn and live and experience.

I am not prepared to be anything less than fully functional as a living, breathing, involved human being.

So, it’s time to kick it into gear and get on with the work.

Onward…

Light-sensitivity solutions

I have a friend who has an associate who has needed help for a long time, but apparently hasn’t gotten what they needed. This friend-of-a-friend (I’ll call them “Foaf”) is a very unhappy person who is just a drag, even to be anywhere near. I’ve encountered them in passing – literally – when we crossed paths in the past, and they had this really miserable vibe that totally turned me off.

My friend, who has a kind streak that’s almost super-human, has been trying to help them, with varying degrees of success.

A while back, Foaf informed my friend that they think they found out one of the things that has been making their life so hard to handle — when they were little, they got hit on the head with a baseball bat. And they think that their lifetime of problems could trace back to that experience.

My friend has been doing research about head injury, and I’ve been feeding them info as I go along. It turns out that my realizations around my own TBIs happened roughly the same time as this other person’s — was there something in the air/water? They’ve been able to pass along what I’ve given them to Foaf, and I think it’s been helping.

Now, over the course of the past months, my friend has mentioned a bunch of times that Foaf has trouble with light sensitivity. Their choices in life are actually pretty limited because of it, too. They cannot go some places because the lights are too bright. They have a hard time dealing with stuff in general, because of their light sensitivity. My friend asked, a few weeks ago, “Do you think this could have anything to do with their head injury?”

“Yes,” I responded emphatically. It hadn’t occurred to me that they might think it didn’t.

Light sensitivity is a common after-effect of head injury.

At the South Florida Psychology website, they list the following symptoms of post-concussive syndrome:

Symptoms of Postconcussion Syndrome

Symptom Percent of Patients
Poor concentration 71%
Irritability 66%
Tired a lot more 64%
Depression 63%
Memory problems 59%
Headaches 59%
Anxiety 58%
Trouble thinking 57%
Dizziness 52%
Blurry or double vision 45%
Sensitivity to bright light 40%

Even sensitivity to regular light could be a problem. And there are other issues as well, which are too many to go into at this point.

So, what can a person do about this?

Well, first of all

Understand that your vision problem may be neurological, instead of psychological. Nothing makes me crazier than thinking my head injury issues are because of some psychological problem(s) I have. I thought for years that my problems were “character defects” or evidence of mental illness that could be cured with therapy or support groups. While these things have helped me a great deal, understanding my issues as physiological ones lets me think about them differently and take steps to address them concretely, instead of trying to change my thinking or feeling about them.

Next,

See if corrective lenses help. There are a number of options you have.

Irlen Lenses can help. They “filter out the offending wave lengths of light which create [neurologically-based] stress” and givey our brain a break from dealing with crazy light frequencies that you can’t handle.

Amber sunglasses can also help — they are better at blocking certain kinds of light than the green or gray ones. I have amber sunglasses that I put on just about anytime I’m driving durin gthe day. Even when it’s cloudy, I wear them. There’s something about the wavelengths they block that is very helpful to me. In fact, when I’ve gone out on bright sunny days without them, I’ve had a tremendous amount of stress, and oneday when I was driving to work, I had a bit of a meltdown over next to nothing.

It puzzled me at the time, but when I think back, it was a bright, sunny day and I wasn’t wearing my sunglasses.

I’m not exactly sure how a person goes about getting Irlen lenses. I guess you’d talk to your doctor about it. For me, my amber-tinted sunglasses– and understanding that I have trouble with bright light — helps enough to get me through the day safely.

I told my friend about Irlen lenses and amber-tinted sunglasses. They’re going to pass the info along to Foaf. I hope it helps ease their discomfort and makes them a happier person. They deserve it.