Unless we understand #TBI / #Concussion, we can’t really treat it

I’ve been more absent from this blog, this month, than I’d intended. Life… you know? It’s been very busy at work, and things are shifting with my role. I’ve had some additional training and workshops, and I’m still trying to figure out where I fit in.

Fortunately, I have help. There are a lot of folks at work who are eager to step in and pull people up to the level they need to be at. I’m not the only one who’s having some challenges navigating the new organizational structure, but fortunately, the expectation is that each and every one of us is going to have challenges and struggle somewhat.

So, that’s helpful, overall.

Getting support at work frees me up to get back to my mission: To write about long-term recovery from concussion / mild traumatic brain injury, and show that it is possible to restore your life after you’ve sustained a brain injury. There is a real dearth of information about this out in the world, and I’m (still) on a mission to do something about that.

I realize that all my … “gyrations” at work have distracted me from this mission. It’s been siphoning off all my energy and distracting me, which is the opposite of what I want and need. So, I’m settling down in my job, chilling out, and looking to my long-term future… 10… 15… 20… 30 years in the future.

And that frees me up to concentrate on the here-and-now with greater focus. It lets me get back to my mission.

The other day, while researching a post, I came across this article:

New Advice to Move More After a Concussion

When young athletes sustain concussions, they are typically told to rest until all symptoms disappear. That means no physical activity, reading, screen time or friends, and little light exposure, for multiple days and, in severe cases, weeks.

Restricting all forms of activity after a concussion is known as “cocooning.” But now new guidelines, written by an international panel of concussion experts and published this month in The British Journal of Sports Medicine, question that practice. Instead of cocooning, the new guidelines suggest that most young athletes should be encouraged to start being physically active within a day or two after the injury.

“The brain benefits from movement and exercise, including after a concussion,” says Dr. John Leddy, a professor of orthopedics at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, and one of the co-authors of the new guidelines.

And it makes sense to me. Because when you think about concussion / TBI in terms of what it is (an injury that disrupts connections and releases a bunch of “gunk” into the brain that shouldn’t be there), and you think about the brain in terms of what it does (processes information based on connections and makes new connections where none existed before), and you think about how the body works (moves all of that information through  – mentally and physically), then cocooning probably isn’t the thing to do for long periods of time.

TBI is a tricky thing. It’s different for everyone, of course, and something that works for one person might not work for another. But we’re all walking around in human bodies, and those human bodies function pretty much the same way.

So, if we use the principles of how the body and brain work, and we understand the nature of concussion, and we understand the dynamics of the whole scenario, new treatment approaches become clearer.

It surprises me a little bit that it took till May, 2017, to figure out how to better treat concussions. Then again, until the past 10-15 years or so, people didn’t really take “mild” traumatic brain injury that seriously. Everybody just laughed it off like it was no big deal.

Then we started to realize that onetime football players were ending up in a bad way — worse than the general public. And football players and their families started going public about their struggles. And people started talking — out loud — about stuff that used to be a source of terrible shame and embarrassment. The kinds of stuff that “you just didn’t talk about”, back in the day.

A lot has changed, thanks to research and increased awareness.

And we’re making progress in many areas.

But still, it surprises me, how much we don’t know… how much we still overlook… and how many people continue to struggle, months and years after a concussion or mTBI.

I have my own struggles, sure. A lot of the problems I had haven’t gone away completely. But after all these years of actively working on solutions, I’m doing a whole lot better at managing them, and that’s made all the difference. Maybe it’s true that brain injury can never be reversed, but then, life can never be reversed, and if we treat concussion issues as just another aspect of life that needs to be taken seriously and managed appropriately, it is very possible to have a “regular” life afterwards.

Sure, you’ll have to change some things. You’ll have to adjust. But life is full of those kinds of requirements. We don’t get a “pass” when we get injured, and the world jumps in to protect us. We just get a different set of challenges and difficulties and benefits to work with.

That being said, mental rigidity is probably one of the biggest hurdles to TBI recovery. The very black-and-white thinking that takes over when your brain gets injured can cause the injury to become even worse. Because you’re locked in a straitjacket of limited thinking. Getting your mindset out of the box and trying different things, living differently, getting on with your life, and being mindful about stuff… that can help hugely. I know it helped me more than I can say.

So, there are just a few more days left in Brain Injury Awareness Month. I’ve fallen far short of my stated plan to focus on brain injury recovery for the duration. I had such great plans… But of course… life. And my limits.

Turns out, what I’m taking away from Brain Injury Awareness Month is a reminder of how — yet again — I need to adjust my commitments and expectations and go a bit easier on myself. The thing to remember is that life goes on. And while I didn’t live up to my own expectations, the world keeps turning, the sun rises and sets, it snows and the snow melts, and the songbirds return to my bird feeder.

For today, that’s enough. It’s more than enough.

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Back in my own space again

laptop with blank notebook and pen on a desk
Today I move at my own pace – blank slate

I’m back in my home office again.

It’s been months, since I was in here regularly. I had been working downstairs in the dining room, where I have better wireless connectivity and I can move around the downstairs without disturbing my spouse.

But nowadays, I really need to get back into my office. My study. My refuge. Everything in this room is here because I want it to be. I need it. I value it. That’s not to say I don’t want and value what’s downstairs. I do. It’s just not all mine, and it’s shared space with not only my spouse but anybody else who comes over to the house.

Granted, there are not that many people who come by, anymore. I can’t deal with having a lot of people in my home. Not anymore. We used to have company over a lot. But in the past several years, that’s faded away. I’m too tired, by the end of each week, to deal with people. And when I do have extra social activities on the weekend, it really takes a lot out of me. I hate that it does, and I do plenty to offset it — like working on my stamina and pacing myself better during the week — but it’s still an issue.

A tired brain is a cranky brain. And when my brain is cranky, it’s not much fun to be around.

Truly.

And too many other people have found out. I’ve gone ballistic on some folks whose only crime was being in my house when I was too tired to interact with them. They were friends, and they considered me a friend. But now they don’t talk to me. Oh, well. So it goes. At times, my life is easier without having a lot of regular friends in it, to tell the truth. Does that sound sad? It’s not. I need my peace and quiet. I need my rest. There’s only so much of other people I can take, even on my best days.

That being said, I’d been able to work downstairs in the dining room, because we rarely use the room for eating, except when we have company.  We use it to store things — boxes we haven’t decided what to do with, yet, as well as other packing materials. Papers and mail that isn’t time-sensitive and just needs a place to “sit” till I figure out what to do with them all. Books. Books. More books. Things we’ve moved from other rooms, to make space for our everyday lives. And there’s room for me to set up a workspace at the dining room, which is exactly what I’d done over the winter. The dining room is warmer than my study in the fall and winter, in any case, so that’s part of why I moved my “operations” there.

But not having my own space has gotten to me. I need to close a door behind me and settle into my own frame of mind — the mentality that sets in when I’m in my own space. I have my books around me, my music, my artwork, my papers. It’s all here. All my fascinations from over the years. And all my neurology info. Especially my neuro info.

So, now I’ve moved back into my study, and I’m looking out the window at the bird feeder and the falling snow. We got more snow last night, and now the wind is up, so it’s cascading off the trees, so it looks like we’re having a blizzard. We’re not. That’s just the overnight snow being tossed by the breeze. But it looks pretty intense at times.

It’s Sunday. That’s good. I have a whole day to pretty much do as I please, and that’s a welcome change. It’s not that I’m going to indulge myself… it’s that I have a lot that I want to do, and not having other responsibilities driven by others’ needs is making it possible for me to make some headway.

Write some blog posts. Read some papers. Get the word out about brain injury recovery being both possible and probable. I’m on a mission. And having my own workspace makes it easier for me to focus on that.

So, yes. Onward.

Changing plans and shifting priorities

tree growing above a rainbowI love my routines. They’ve saved my s$$ over the past 12 years. They helped me retrain my body and brain to be a heck of a lot more functional than they were in 2006. And when it comes to TBI recover, routine and repetition are my friends.

Seriously, they’re like the secret weapon against the disruptions of TBI. Just figuring out how to do things exactly the same way, over and over, till that way become ingrained and you don’t have to think about it anymore… it’s magic. And it does so much to rebuild and solidify the new connections that replace the ones that got frayed and pulled to pieces in the brain injury itself.

Every now and then, it’s good to change things up, though.

That’s where I am, now. I’ve done a lot of hard thinking, over the past weeks and months, and I realize I need to have a different focus in my daily life. I need to spend a lot less time focusing on my career and professional prospects, and spend a lot more time focusing on my health and quality of life.

I’m not gonna lie — I really had to double down on my work situations, over the past years. I was in a downward spiral of sorts, in one overly challenging job after another, working in very hostile conditions that eroded my physical and mental health. And the past 3-1/2 years have also been a real challenge, in some ways. The thing that’s made it the most challenging is that I got caught up in ideas about advancing, getting promoted, moving up in the world. And that sucked me into a vortex of caring about what other people thought of me, what other people said about me, what other people did to me at work.

And that wasn’t a good use of time. Because here I am, years later, no further along on my professional path (even set back, compared to where I was before), and just looking back at a whole lot of frustration and dead-ends.

Don’t get me wrong. I’m highly ambitious. I’m driven. That’s for sure. But at some point, being ambitious according to someone else’s rules is just a bad idea for me. I need to be ambitious according to my own rules. I need to drive towards things that matter to me — having decent relationships with people, doing my best work, learning and growing as I go — rather than getting caught up in other people’s power games.

Somehow, those games never work out in my favor. I just get played.

So, I’m pretty much over that. Time to focus on other priorities. Time to funnel my energy into things that are going to build me up, not tear me down, and pay off in the short- and long-term, when it comes to just doing a decent job.

Heck, I’m not even sure I want to get promoted, anyway, considering the kinds of people who are climbing to the top, these days. It seems like a much better use of my time to focus on my mental and physical health… learning interesting things and applying them to my life… sharing what I know…. and just having the best life possible. So long as I make enough money to support myself and I have the time and opportunity to do something truly useful with my life, that’s what matters.

And that’s where my head is at today.

Ha… we’ll see how I’m feeling tomorrow… or next week… 😉

Looking back, looking ahead… and trying to get some sleep in the meantime

rowboat at docks

I have been meaning to get more sleep, during this vacation. I’m able to take naps in the afternoon, which is great. I just can’t seem to get to sleep at a decent hour (before 11:00 p.m.) Part of the problem is that I just don’t want to go to sleep earlier than 11:00. I’ve got an internal clock that tells me when it’s time to sleep, and it generally doesn’t kick in till 10:45 or so.

It’s a little nerve-wracking. But I do it to myself, putting all kinds of pressure on myself to go to sleep, when I’m not really feeling that tired. And then getting up at my regular time, which lately has been anywhere between 5 a.m. and 6:30 a.m. So, I’m not always getting a full 7.5 – 8 hours, like I need to. And then I wake up irritated, because I can’t sleep through.

It’s an ongoing problem, especially during this vacation.

Well, my life is structured very differently now than it is when I’m working. I’m still doing my morning exercise, which is crucial. I’m actually doing  better with it than usual — getting both my bike ride and the weight lifting done. I just don’t move enough during the day. I move more, when I’m at the office, because, well, I’m at the office. I have to go to meetings. I have to get my lunch on the ground floor. I have to make trips to the water cooler as well as the restroom. It gets me up and around, while being at home — where everything is within easy access and just a few steps away — keeps me sedentary. Heck, I can even work while sitting/lying on the sofa, which sounds great, but is a bit of an occupational hazard.

Anyway, it’s the end of the year, and I’m kind of out of sorts. Feeling like I’m drifting, cut loose from my moorings a bit… feeling like I fell asleep in a rowboat that was tied to a dock, and then I woke up finding myself drifting out in the ocean, with the dock in the distance. The thing is, although the distant docks look familiar, and that’s where I expected to wake up, I can also see other sights in the distance.

Cities I didn’t know existed before.

Distant piers and jetties that look every bit as interesting as what I’ve known before.

Busy industrial ports that hold mysteries within their iron fortresses

And secluded beaches to explore.

Different sorts of places where people live, work, and go about their business, which are both foreign and fascinating to me.

And lighthouses to guide me along the way.

Lights… sights… sounds… And a whole world of choices out there.

When I actually have some time to catch up with myself, I can see so many more possibilities. And it’s invigorating.

But it’s also a little depressing. Because I spend so much of my time in recovery mode, just trying to right myself in the very wrong world, that I don’t have as much time as I’d like to just kick back and relax into finding out What’s Next.

I look around me at my life… And I see so much more beyond my present situation. And I also see that the resources I have at my disposal are, well, limited. I’m not complaining. I’m just saying. I don’t have all the energy in the world, and I don’t have all the patience to match it. I want to cut to the chase and get on with my life, to the best of my ability. And after all these years of really working on my TBI recovery and firming up my Sense-Of-Self, I’m finally at a point where I have a reliable idea of how “I” am going to react and behave under certain circumstances.

That’s the biggest, hairiest, most dangerous part of life after TBI — losing your Sense-Of-Self. It erodes your self-confidence. It crushes your self-respect. It makes every situation into a danger-fraught series of surprises that threaten everything you care about. And then the real trauma of TBI sets in.

I really believe that the biggest trauma in mild traumatic brain injury comes after the injury itself. There’s a steady stream of “micro-traumas” which stress out our systems and add to the fight-flight biochemical load. And unless we learn how to manage our fight-flight overload and learn how to clear out the neurochemical gunk of all that ongoing stress, mild TBI continues to take its toll. It continues to haunt us, to tax us, to load us up with invisible burdens that nobody else understands, but which are very, very real.

If you really understand the physiology of trauma (and not a lot of people know about it, let alone understand and fully appreciate it), and you understand the profound change that even a “mild” TBI brings to your entire system, all of this makes sense. You know that the subtle changes to how your system works are disorienting and anxiety-producing. You know that the body’s mechanisms for protecting itself are working overtime post-TBI, and they’re kicking in, in the most unlikely of situations. You know that the overall effect builds up, and you know that it’s cumulative.

You also know that while the effects may show up as a psychological disorder, the underlying basis is a combination of mind and body — and the body bears the burden of it all.

The thing about this whole deal is, because the body is involved, it’s possible to work with the body to turn that sh*t around. Even if your mind feels like mush (I’ve been there), even if you can’t remember what you did, just a few hours before (I know the feeling well), even if you can’t get through your morning without a detailed checklist (the story of my life for years), the body can act as a gateway to recovery.

Regular exercise helps stabilize your system. Eating the right foods (and steering clear of the wrong ones) helps your metabolism stay stable and keeps you off the blood sugar roller-coaster. Getting enough sleep lets the brain “knit itself back together”, as well as clear out the gunk that builds up, just as a result of everyday living. Plus, learning to regulate your heart rate and your blood pressure can train your overall system to get back to a stable state, even if everything feels like it’s falling apart around you.

I’m sipping the last little bit of my half-cup of coffee, as I write this. The snow from last night is giving way to freezing rain, which will fall until midday, when the temperatures start to rise, and regular rain falls. There’s always a chance that the ice buildup will take out our power, and that’s no fun. But I have wood for a fire in the fireplace, and we’ve been keeping the house pretty warm, so we’ll have some residual heat to see us through. In the past, we’ve had some pretty hair-raising experiences with losing power, and I don’t look forward to repeating them.

But I know a lot more now about keeping my physical system stable, and I’m in a much better place, mentally, than I’ve been in past years. So, I’m at much less risk than before. And knowing that relieves the pressure and also reduces the risk of my “losing it” even moreso. And that’s good. It’s awesome.

So, where was I… I’m kind of meandering, this morning, as I try to get my bearings. I’m looking back at the last year, wondering if all the effort really paid off the way I wanted it to. I’m not sure it has. Some things I started have kind of stalled. And other things I wanted to continue with have floundered, as well. In some ways, I’ve been as diligent as ever. In my day job, for example, I’ve been invested and involved in ways that have actually paid off. When I think of all the other jobs I screwed up since 2004 (and even before that), it’s kind of depressing.

So, I won’t think about them. I’ll focus on the good.

And as I look forward to my future, I see a much simpler — but much more do-able — path ahead. I’ve let go of a lot of old activities that were busy-work I picked up for the sake of pumping up my tonic arousal (the state of wakefulness in your brain) and getting my system turned “ON”. I had a handful of websites I wanted to start, a number of business ventures that seemed promising, apps I wanted to build, and novels I wanted to write. That extended experiment in busy-ness went on for 10 years or so, and it just didn’t work out, so I’ve now narrowed my focus to a few particular activities, which will actually lead somewhere.

Heck, they’ve already started to pay off. And taking the pressure off myself to go find another job… yeah, I’ve let that one go. Yes, traveling for work every few months really takes it out of me, but there’s no guarantee the next job won’t be just as much of a pain in the ass. Plus, it’s too stressful to go changing jobs every few years. I used to thrive on that experience, but now it’s just a pain in the ass. I need to look for the good in things and tweak the things that I’ve got going on… not ditch them and go looking for something better, somewhere else.

So, I guess I’ll wrap up my ramble. My morning is in free-flow, so I’m just letting my mind wander as it will, for the time being. I got my grocery shopping done yesterday. I got my meals for today prepared yesterday, too. I can’t go out and do anything, because the roads are bad. There’s no need to go anywhere, anyway. I’ll just hang out for the day… drift… make a fire, perhaps, and catch up on my reading.

And write a bit more. Because I can. I’ve got the time and the opportunity. So, yeah…

Onward.

What we lose after TBI… and what we can get back

woman standing with a leaf in front of her faceI’m feeling really grateful, this morning. I’m tired, but I’m content. I’ll have my nap later, and everything will get even better.

I spent yesterday doing some of the things I love the most: cooking, eating, writing, reading, napping, and watching football while eating non-dairy ice cream… all with my partner, who has been really struggling with mobility issues, lately.

I bought us a collapsible massage table a couple of weeks ago, so we can both take turns stretching out and do horizontal exercises without having to get down on the floor. I set it up last night for my spouse to lie out flat (major plus) and do the exercises their physical therapist prescribed. The floor has gotten too cold to lie on, plus, it’s hard for them to get up and down without pulling something or hurting. So having the table is a huge benefit. Plus – bonus – I went to bed at a decent hour after a long day of lots of work

And by the end of the day, I realized just how good I have it. I realized that, after all the years of struggle, all the years of incredibly hard work, all the pain and frustrations and perseverance, all the dead-ends, all the plans to just give up, and battling all the despair… I have come through to another side, and I am in a place where I am good.

It’s taken years for me to get to this point. And it feels like this is the first time I’m really settled into this good-ness in a way that I actually believe. I’ve spent so much of my life confused and confounded, thwarted and hurting… without much of any clue about why that was, or what I could do about it… I had started to think that’s just how things were going to end up for me.

Permanent disablement. Permanent screwed-over-ness. And I just needed to get used to the experience and accept if for what it was.

But that feeling has completely changed, just in the last 24 hours. Things are not perfect, by any stretch of the imagination. There’s a lot of stuff that’s going really, really wrong in my life — and the world in general. And there are lot of unanswered questions in my mind. Still, I feel like I’m in a state of mind (and body — fitness is so important) that I can handle whatever comes my way.

No, my thought process is not perfect. I still get turned around and confused, and lately I’ve really been struggling with memory issues and misplacing things that I can’t afford to lose. I still have my intense lows, when I completely despair and lash out at the ones closest to me. I still have my moments of feeling useless and unlovable. I still struggle with crushing fatigue and not being able to do things that plenty of other people can.

And of course, I struggle with the fact that I can’t tell people about my issues, because it will work against me in the larger world. It’s not going to help me get a better job, if I tell the hiring manager that I function best if I have a 20-minute nap at the middle of each day. That’s not part of the deal in the 9-to-5 world I operate in.

But these are all things I’m convinced I can manage effectively on my own. I can handle it. Because I have a much better sense of who I am, and what I can expect from myself.

People have said that “you can’t recover from brain injury“, but that was decades ago, and we know a lot more about brain injury than we used to. Also, we know more about how concussion really is a brain injury… and so many people have them, yet continue to live their lives.

I myself notice that there are some things I just can’t do like I used to. It’s not as easy for me to push through marathon tasks. I need to stop and take a breath… do something completely different. And it’s harder for me to remember what I was doing before I took that break. I lose things. I get lost, too. I sometimes look around and have no idea where I am — but that’s more because I tend to be so focused on what’s in front of me, that I don’t notice my surroundings, so I don’t think it’s one of those “On Golden Pond” moments where I’m literally lost and have no idea where I am, period.

I’m more forgetful about things that really matter to me. My home office is pretty much of a wreck, but in a Thomas Edison “genius-y” kind of way, and my work area has spilled into the dining room that we rarely use. I have been misplacing important documents I just can’t afford to misplace… and then scrambling to replace them. I have a harder time initiating stuff I know I need to do (like go for a swim at the pool), because it feels way too complicated and involved. And try as I might, I really mess up things I’m positive I’m going to “nail”. I’ve been feeling really ambitious about making new meals while I’m on vacation this week, but my cooking skills have really degraded, thanks to the bone-crushing fatigue and difficulty sleeping. And coordination? Yah, forget it. Don’t leave anything near the edge of a surface. I’ll knock it onto the floor, for sure.

I know I’m not as sharp as I used to be. I know I’m not as sharp as I’d like — or intend — to be. I can be downright dull, and the bummer is, I’m aware. Oh, lord, how I’m aware. It’s not the most fun thing in the world.

And yet… I’m happier now, than I’ve probably ever been. And even with all my limitations and drawbacks, I’m definitely more functional, all across the board, than I’ve ever been. I’ve got “the whole package” together, at last. Even with the TBI after-effects, the slowness and slipping, the exhaustion and intermittent sense of defeat.

See, this regaining of competence and practical functionality is the real TBI recovery I wish people would talk about. Not getting your coordination and cognitive quickness back, watching your memory and endurance dwindle, having all kinds of intense emotional ups and downs… some experts might consider those blockers to TBI recovery. They might say it means that a person has lost too much and can never fully recover from a brain injury.

But everybody on the planet has something they struggle with, TBI or no.

And in any case, the real loss for me from TBI had far more to do with my Sense-Of-Self and my sense of “agency” in the world, than any objective physical or cognitive limitation.

TBI/concussion isn’t debilitating just because it knocks out your practical abilities. It’s most impactful because it takes a chunk out of your understanding of Who You Are and How You Handle Life.

It strips our self-confidence, and in doing so, it hits us hard with a self-doubt that’s a huge source of stress and ongoing trauma. What does stress and trauma do to the human system? It makes it harder to learn. And since TBI/concussion recovery is literally an exercise in re-learning to live, so your brain can rewire with reliable connections, that loss of self-confidence is in itself a source of ongoing injury.

TBI / concussion is an injury to the Self. And until people start accepting that and dealing with that piece of things — as well as finding practical, common-sense, science-based ways to address those issues — TBI and concussion survivors will continue to suffer from their injuries as well as the limitations of the people who intend to help them.

My road back from multiple mild TBIs has been a long one. It’s taken me 13 years to get to this point (and today is the 13th anniversary of my last concussion). It’s been a grueling and winding path. Fraught with perils. It nearly cost me everything I worked so hard to earn. But I can honestly say, I’m finally on the other side.

I understand my situation. I also understand the nature of my injuries, and how they affected me. But most important of all, I understand what I can do about it. And while I do tend to whine a bit here at times, the most important thing is for me to focus on the positives and share the lessons I’ve learned, so others don’t have to suffer as terribly as I did.

TBI and concussion are “recoverable”. We might not get back every single ability, and we may be left with lasting challenges, but we can restore our Sense-Of-Self, so we can get on with living our lives to the best of our developing abilities.

We’re made to heal. We’re made to grow. Regardless.

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.

Find a New Neuropsych Step #3: Scout around for neuropsychs

I want to do more than keep my head above water.
I want to do more than keep my head above water.

Step #3 in finding a new neuropsychologist is : Scout around for neuropsychs, looking online and also touching base with my local Brain Injury Association chapter. If they have websites or blogs, read those to get a feel for what kind of people they are. See if there are any testimonials or recommendations from patients which will tell me more about them.

Now that I’ve got my list of issues to track, and I’m thinking about what they really boil down to, I need to look around for who can help me.  Years ago, when I was scouting around, I did not have the level of information and familiarity I do now, and it was like trying to find a needle in a haystack. Not only were there so many details to consider (and my brain made it even worse by complicating everything and taking in every single detail without distinction), but it was treacherous going. Like a needle will jab you if you’re not careful, a neurologist whose agenda is to prove you do not have any problems, is also a hazard.

Because there are plenty of them out there.

So, first, I have to screen out the folks who could be dangerous. I’ve come across local brain injury support groups who actually keep a list of those kinds of docs — they can ruin your life.

And then I need to find friendly faces — again, there are local groups that have contacts and recommendations. My local BIA chapter actually has a list of neurologists and neuropsychologists who “get it” and have proven helpful. I have an old list from before – but I may reach out to get an updated list.

I also need to check around with other people to see if they have any recommendations. I’m not very well connected to the brain injury scene in my area, because I can’t take the chance that my anonymity will be breached. I have to keep my semblance of normalcy together, and not let word get out that I have a history of brain injury. That could sink me, and as I’m the sole provider for my household… well, I’m not all that keen on being homeless and pushed out of society, which is pretty much what would happen. I don’t have a lot of folks in my life who are fine with brain injury — I found that out, when I was disclosing to friends who I thought would understand. They didn’t. They’re not my friends, anymore.

So, I need to make sure I’m smart about this and keep things simple. I also don’t want to go chasing the wrong things, as I feel I sometimes have with my current neurospych.

As I track my issues, I am actually seeing that my sensory issues and physical issues are a major contributing factor to my difficulties. Fatigue is the #1 complication I have with mild TBI, and it complicates everything. Being on constant sensory overload, day in and day out — with the fluorescent overhead lights, the busy-ness and activity at work, noise, the deodorizer in the rest room that’s as nasty and pervasive as perfume being sprayed on you in a department store — it’s exhausting. It really takes a lot out of me, and whatever cognitive reserve I’ve got on hand, depletes rapidly when I’m overwhelmed.

So, I need to look around and find someone who can help me with my sensory issues — not just cognitive ones. It might actually be the case that while I test fine under rested conditions, when I am tired and overwhelmed (which is usually the case), that all degrades. So, perhaps it would have made more sense to evaluate me when I was exhausted, since that’s my “default operating state”.

And it could be that my neuropsych has not gotten a full view of the impacts to me, because we’ve been meeting (by my specific choice) on a day when I am about as close to “on” as I can be — Tuesday afternoon, when I’m warmed up for the week, but not completely wiped out. So, that’s prevented them from getting an accurate view of how I’m really functioning.

Anyway… I need to find a neuropsych who is familiar with sensory processing issues, as well as other physical issues. Because I swear to God, I struggle so much with them, and my physical symptoms are so intrusive and corrosive, I don’t feel like I can actually make any progress, anymore. If anything, I feel like I’m going backwards. Being exhausted, day in and day out, is an issue. Eventually, it will beat the life out of you. It’s just a matter of time.

So, my hope is that I can find someone who more fully understands these problems all across the spectrum — physical first, then mental, then emotional — and who can help me work through all of this in a common-sense fashion. It would be nice to feel like I’m making some progress again.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

New NFL concussion guidelines

The NFL has recently released new stricter concussion guidelines.

The new policy states, in part: “Once removed for the duration of a practice or game, the player should not be considered for return-to-football activities until he is fully asymptotic, both at rest and after exertion, has a normal neurological examination, normal neuropsychological testing, and has been cleared to return by both his team physician(s) and the independent neurological consultant.”

This could be a really good thing.

I hope.

No one has a clue how hard this is for me

Even I don’t, sometimes.

Seriously. I walk through my days, going about my regular business, living my life, interacting with people, doing what I do, making mistakes, making it right… working (hard) to keep up. And I do manage to keep up. Most of the time.

At least, that’s how it looks on the outside. I’ve learned, over years, to present in a certain way… to project a certain image… to do a passable job of fitting in, by mirroring the mannerisms and “social pacing” of people around me. And it works. I had to figure it out by trial-and-error, but I did eventually figure it out.

In my early childhood, when I was first learning about how to live outside my parents’ house — in school, especially — I had a very hard time fitting into my surroundings. My early grade-school years were rocky and rough, and I went through a lot of bullying and teasing and marginalization. I also had a very, very hard time dealing with academic requirements. I could pretty much get by, but it was — again — trial and error. I remember working so very, very hard to make my teachers happy… without fully understanding why they were asking me to learn certain things and complete certain lessons.

I think part of the problem was that, despite having a hard time keeping up with what was going on around me, I was ahead of the kids around me, subject-wise. I grew up in a family that valued education and spent a lot of time exploring the world of ideas. My parents were — and still are — very well read, and my grandparents were experts in their fields. I was well accustomed to sitting around talking about complex subjects… more comfortable doing that, in fact, than spending time playing with the kids around me.

And it was awkward. Very awkward for everyone. At least, I think it was. I didn’t understand my peers very well, and they didn’t seem to understand me at all. Or maybe my perceptions were skewed because of my TBIs — poor judgment, slowed information processing, and misperception of the actions and/or intentions of others are all hallmarks of TBI. Maybe everyone was fine with me; I just wasn’t fine with them (or myself).

Anyway, I don’t want to harp on all my difficulties. Let’s just say my childhood was somewhat challenging.

All that started to change, however, when I started getting connected with kids who were several years older than me. My family had moved to a new area, and we had started attending a new church. That church did not have a very large concentration of kids exactly my age — they were either several years older than me or several years younger. My parents talked to the youth director and managed to get me “in” with the older kids in the young adult youth group.

I really wasn’t sure about it, when I started. I was painfully shy — no, shy isn’t the word for it. I was completely out of my depth. All the boys and girls — young men and young women, actually — who were part of the youth group seemed so with it, so together, so … grown up. They seemed like they knew what everyone was saying when they talked, and they seemed to know how to act around other people.

I was amazed. I couldn’t for the life of me figure out how to initiate conversations that weren’t about some academic matter, and I sure as hell didn’t know how to keep a conversation going. I was petrified, the first months I hung out with the other kids. But fortunately, some of the most popular kids in the “gang” at church were second cousins of mine, and they knew me from family reunions. So, I was “in” with the crowd, even when I couldn’t manage to put two words together.

It would be really easy for me to focus on how challenging those years were for me. But I’d rather focus on how much I gained from meeting those challenges head-on, and learning from them. Those several years with the older kids — I spent about 3 years among kids who were several years my senior — taught me volumes about how to make my way in the world. By watching them and seeing how they interacted with others, I was able to model my behavior on something positive — and types of behavior that obviously worked. I watched the kids who were clearly popular and having a great time being alive, and I mirrored their words and actions. I’m sure I looked a bit spastic, at times, tagging along and clumsily imitating everyone at the start, but eventually I learned how to smooth it all out and “deliver a seamless presentation” of the kinds of behavior I saw other people using — that worked well for them in social situations.

I could tell things worked, if people laughed at jokes. I could tell things worked for them, if other people smiled when they approached. I could tell things were “clicking” socially, if everyone was relaxed and enjoying each others’ company. It probably sounds pretty remedial and basic, but that’s how I learned. And I learned pretty quickly, too — so long as I could be a part of the group, but still be able to withdraw, now and then, when I got overwhelmed. Because I was with kids who were some years older than me, I was able to get “special dispensation” because I was younger. I was “just a kid” so I was allowed to mess up, now and then. Not all the time, but they tended to cut me some slack, which was helpful.

The fact that all this took place in a church environment, where there were very strict rules about how you did and did not behave was very helpful also. All the boys were well-behaved, and all the girls kept to very high standards of behavior. Even though a lot of us eventually left the church and went our own ways, far from organized religion, the fact that there were clear guidelines in place for us to follow made it pretty straightforward for me to figure out how I should — and should not — behave around others. The kids who were ahead of me modeled acceptable behavior, and I followed their example. I was part of a “gang” — but the gang was all good Christian kids, so I had the benefit of being in a group of pressuring peers who pressured me in directions that did not lead towards drugs, alcohol, petty crime, and teen sex.  (That pressure took place in the other “gangs” I ran with, several years later, in school and at jobs I held.)

During those early teen years in the church youth group, I learned how to integrate socially through the various activities we had — Sunday School, prayer meetings, weeknight services, organized youth group activities, like trips and outings, Bible quiz team, and countless other get-togethers that were organized by the youth leaders. They really did have a good program, I realize in retrospect, and I benefitted from it a lot. Being able to be around kids who were older than me gave me license to just be who and what I was — a little dorky, a little geeky, gangly and awkward and prone to say dumb things that were out of context — and be accepted, anyway, because I was young. I don’t remember being stigmatized, probably because it was generally expected that I was supposed to be different — but that was because of my age, not because I was a queer little brain-damaged freak who couldn’t fit in with my peer group.

What a relief it was, to be allowed to be different! I had been battling against my social surroundings for years, but that had gotten me nowhere. And I mean, nowhere. Standing out as being different (which was my “default setting”), had resulted in a lot of bullying, ridicule, and general hardship for me. It had also not helped my academic performance or my general ability to get by in the world. But being able to hang out with kids who were not only older than me and showed me how to behave, but being given some leeway with how I behaved, totally took the pressure off.

I was finally able to relax, socially. And I was able to learn. I was able to pattern my demeanor after the most socially successful members of the youth group — the guys and gals who were the most capable, the most popular, the smartest, the most respected-by-adults. I’m sure I looked kind of dense, stumbling and bumbling my way after them. But you know what? No matter how dorky I looked around the older kids, when I was around my own peer group, those behaviors and mannerisms made me look a lot more mature than I felt. I didn’t need to understand exactly why someone would say certain things (like social pleasantries) or do certain things (like strike up a conversation with people you’ve never met before in your life). I only needed to understand how they did it, and that it worked for them… and perfect my impressions of the most socially successful people I knew.

Granted, my “performance” wasn’t always perfect, and there were a lot of false moves over the years that got me in trouble with older kids and teachers and other authority figures, but you know what? By practicing and practicing and practicing some more… observing carefully when others did things that made them look good… by rehearsing the “role” I wanted to play in the world in the privacy of my own bedroom, out in the woods where I could have some alone-time… by constantly checking and re-checking the results of what I’d done, learning my lessons and “taking my lumps” as I went, I was able to build a really compelling and convincing repertoire of social graces that have stood me in good staid.

Okay, so my parents were probably pretty concerned throughout the course of my life, when I’d spend hours just talking to myself. And I’m sure they’ve often wondered about me walking around having animated, in-depth conversations about topics I’m passionate about… with no one in particular. To this day, I still have extended animated converstions with myself when I’m alone or in the car driving. I do it — and have always done it — to work on my vocal pacing, my delivery, my presentation. I have a role to play in the world, and I know well enough (inside my own woolly head) how hard it can be for me to keep my act together. I get lost all too quickly, so I need to keep my composure skills up, and “running the lines” my life does it for me. This “regular life” stuff doesn’t come easily to me, so I have to work at it, work at it, work at it some more. All the time, whenever I get a chance.

Fortunately, I enjoy it, and when I’m having intense, protracted discussions with myself, pretending to talk to another person — breaking now and then to let “them” get a word in — I’m usually going on about something that captures and holds my interest. So it’s not work as much as it is effortful play. And it pays off.

In countless ways. Can I just tell you, the best validation of my efforts has been all these people telling me, over the course of the past year or so, that they never would have guessed I had a head injury, let alone half a dozen. It never would have occurred to them that I was anything less than perfectly normal. On the outside, then, my presentation is intact. And all my hard work has paid off. The countless hours I’ve spent analyzing my interactions with the world, checking and double-checking the results of my relating to others… the untold time I’ve spent carefully tweaking my demeanor during the course of converstaions… the tricks I’ve picked up about how to interact effectively with others… it’s all paid off. Big time.

Now there are some days, of course, when I feel a lot more like a fraud than I feel functional. I feel like I’m just walking through my days playing a role that has nothing to do with me. I’m sure a lot of people feel that way — especially as they age and start to examine their lives. But with me, it’s especially pronounced, because there are many, many times I say and do things without even thinking about them which don’t sound anything like me, or what interests me, or what I care about. There are times when I’ll get to the end of a conversation or a complex interaction with someone and realize that I have no idea what just happened — I wasn’t even personally involved in the interaction. I didn’t even say what I meant or thought or felt. I just mirrored that other person, without even knowing what I was mirroring. They thought for sure that I agreed with them wholeheartedly and was validating their point of view by repeating it back to them, but I was really just saying and doing the bare minimum to get in and out of the conversation without getting too turned around.

Indeed, this is the great pitfall of this approach, socially successful as it may be: that I can get swept up in a chain of events that I don’t agree with, don’t care about, don’t even want to participate in… because the action is moving a lot faster than my little brain is, and I’ve unconsciously mirrored everyone so well, that they enlisted my help and swept me into their grand designs without my ever consciously assenting to it. And they think that because I’m able to mirror them so well, I’ve consciously chosen the path they’re taking because I’m as totally into it as they are… But I haven’t deliberately chosen.  And I’m not totally into it. I’m totally into nothing more than just participating and navigating the situation successfully enough to not be found out as a head-injured dimwit.

It can be a problem. Especially when I try to slow down the action long enough to say, “Hey – I need a while to think this through before I get involved.” Slowing things down is terribly difficult for me, in the first place, because I tend to be highly impulsive and get swept up into the energy of things. I also hate feeling as slow as I am, and I hate feeling so friggin’ retarded — as in the literal meaning “to be delayed”, which is exactly what I am at times. I have developed an elaborate and effective cover/compensatory strategy for my limitations, and I like how I feel when I’m “under cover”. I like feeling whole and hale and hearty and fast and smooth and with it. I like feeling complete and well-integrated. But when I “buy my cover” and forget that it’s just that — well, things can break down pretty quickly.

I suppose it’s all a balancing act.  There’s no way I’m going to just dispense with my compensatory behaviors — why should I? Everyone needs a little cover, now and then, and plenty of people say “yes-yes-yes” while they’re trying to buy time to think things through on their own, in the privacy of their own heads. But I don’t want to fool myself into thinking that everything is perfectly alright, since I can present well, articulate, keep my act together in very controlled circumstances. I don’t want to fall into the habit of thinking that because I can function very well in a highly structured environment where I’m literally just mimicking people around me and able to perform well as a result, than I can duplicate that same level of effectiveness out on my own.

I’ve tried it, and it doesn’t work. I once thought that my on-the-job skills at my highly routinized, heavily project-managed 9-to-5 position at an established corporation would translate into the same level of effectiveness and success when I started my own company. But I was wrong, and that experiment ended very, very badly. I’m still picking up the pieces.

I once thought that because I saw other people conducting workshops and I understood the form and structure of them, that I could duplicate their efforts and do just as well. What happened was, I got 10 minutes into the workshop and lost control of the “flow” and ended up riding a wild bucking bronco of a workshop where everyone talked out of turn and wouldn’t stay on-topic — very similar to what happens inside my head when I’m tired and overwhelmed.

I once thought that because I had worked in financial services for many years, and I had a burning interest in financial planning, that I could and should become a financial planner. But I ended up enrolling in a program for a bunch of money and then was unable to even finish two of the six courses. I was also unable to get more than a C grade in the two tests I took. And I had no idea why! As so many times in my past, I actually forgot about the program for a while and wandered off to do other things… and it didn’t fully sink in that I was supposed to be working on it until I got a notice that I had all of six… then three months left to complete the 18-month course. It slipped my mind, for the most part… and I couldn’t finish the program. What could — and should — have been a simple matter for me turned out to be a whole lot more complicated than I thought it would be. And I was a whole lot less up to the task, than I had assumed.

I once thought that because I had worked with many different kinds of lawyers for many years, that I could read and analyze and understand important legal documents for my family, but I ended up really turned around and confused, and if it weren’t for the fact that I had a good lawyer waiting in the wings, I could have really screwed things up.

The wild thing was — I had gotten myself into all these messes at the urging of others around me. Others who were so very, very sure that I could handle myself perfectly well, that I was perfectly capable, that I was perfectly equipped to deal with all of this… who had no idea at the time (as I) that there were some serious neurological impairments holding me back. There weren’t a lot, but there were enough.

And as a result, I have danced on the edge of disaster repeatedly throughout the course of my adulthood — and I’m still running into instances where I overestimate my capabilities. They’re less and less pronounced, and I’m getting more acclimated to “quality controlling” my assumptions, but the risk still exists that I might overreach and not realize I need to take special care to compensate for my limits.

I suspect that these may be good examples of anosognosic hazard — having lacking self-awareness get in the way of living your life. I know that they’re good examples of how buying my own cover can get me into trouble.

The thing is, I don’t feel like being disabled, I don’t feel like being head-injured, I don’t feel like making special exceptions for myself. But when I don’t at least consider that my broken brain may be complicating my life needlessly… getting me into trouble, yet again… well, the feeling of being in hot water is far worse than the feeling of tending to my relatively few special needs.

I really, really hate having to consider how difficult some things are for me. I detest having to bumble and fumble and stumble my way through situations until I figure out how to handle them. I cannot stand having trouble with sequential steps and not being able to remember stuff that “should” come easily to me. Most of all, I hate the idea of revealing to others how hard I have to work to do the most basic of things, like getting up and going through my routine each morning, and actually getting to work on time. It’s embarrassing, it’s disconcerting, it’s a total downer. But that’s how it is.

And even if I don’t show it to everyone else, it’s important that I not lose sight of it inside my own head.

‘Cause you can’t fix something, if you don’t know it’s broken.

How severe was my injury when I was 8?

My parents are coming to visit me next weekend,and I’ve been thinking a lot about my earlier injuries and how they affected my childhood. How they affected my development, how they affected my interactions with people, how they affected my future. When I was seven, I fell down a flight of stairs and was very dazed and confused and wasn’t able to talk. And when I was eight, I was hit in the head with a rock and knocked out for a while. (I tell that story here.)

In the ensuing years of my childhood and youth, I had more injuries — concussions and falls. It was not uncommon for me, while playing, to fall hard and/or hit my head and get up a little dazed and confused… but keep playing. Just keep playing.

Now, concussions alone could account for a lot of the problems I had when I was a kid — problems understanding what people were saying to me, problems with distractability, problems with temper outbursts, problems with getting really turned around and confused… lots and lots of mood and behavioral problems that my parents handled with faith and prayer and lots of structure, rather than pharmaceuticals.

In retrospect, I think it really helped, when I was young.  The structure gave me a framework to live within, the faith gave me something bigger to hang onto, and prayer offered me a way to ask for help from a Higher Power when I couldn’t find the words or the means to ask for it from human beings. It was a pretty exacting way to live, though. My family was very religious, and my parents were very strict (at that time) about what was permitted and what was not… what was sinful and “worldly” and what they considered pleasing to the Lord.

But while that faith and prayer gave me a much-needed support system when I was young, when I entered my teen years, it backfired. As I grew older, I still had a hard time, cognitively and behaviorally speaking. The problem was, I wasn’t just having troubles at home, I was having troubles out in the world. Teen years are marked by increasing social activities outside the home, and I just didn’t do a very good job of handling myself. I was alternately shy… and openly rebellious. I was alternately a high achiever and a slacking ne’er do well. I did a lot of good and helpful things in my youth, including saving an elderly lady who was trapped when the open door of her car (it was not in park) rolled and pinned her leg to a very large object (I can’t remember what it was, but she was pinned, and the metal of the door cut into her leg — I can still recall the sight of the inside of her fleshy thigh cut open — I guess my brain selectively records images). But I also sold drugs and bought liquor underage and distributed it to friends. I wasn’t a big-time criminal, but my later youth was marked by a lot of the warning-sign activities of criminals in the making.

Jekyll and Hyde… or head injury? Given the number of injuries I’ve had over the years, and the fact that a lot of my rebellious and “alternative” behavior was directly connected with an internal storm of confusion and agitation and rage that never disappeared, only subsided a little, I think the latter applies.

Okay, so all that being said, I have been wondering a lot, lately, just how severely I was injured when I was 8. I was knocked out with a rock thrown by some kids who didn’t like my looks and had been taunting and teasing me and my sibling from a distance. We didn’t respond, and they started to throw rocks. My sibling wanted to leave, but I said “NO, we’re staying right here.” I still feel awful about it; they could have been injured, instead of me. But I was hard-headed and stubborn, and I didn’t want anyone to chase me away from doing what I was doing.

Anyway, after a number of rocks landed closer and closer to us, one clocked me on the head. I recall feeling a dull-sharp impact and thinking, “What was that…?” and then I went down.

The next thing I remember, I was looking up and my sibling was hovering over me, crying, with tears streaming down their face. I was woozy and wobbly and at first I wanted to stay and keep playing, but they were so upset, I realized I couldn’t keep us there. I was also not feeling so great, and they led me home to my parents, who had me lie down on the couch while they called a friend who was a nurse, to find out what to do. I didn’t want to do what they told me to — I didn’t want to lie down, I didn’t want to hold still, I wanted to either get up and move around or go to sleep. I remember trying to sleep, but they kept me awake. I seem to recall being really tired, but also kind of punchy and agitated and restless. Eventually, as I recall, after checking my eyes with a flashlight a number of times, they let me get up and move around. And my life went on.

When I think back on that time, it seems to me that it was a pretty serious deal – but I’m not sure how aware of it my parents were.  Or anyone was, for that matter. And when I think back, I honestly can’t say how long I was knocked out for. I might have been out for a few seconds, a few minutes, even an hour or more. It’s impossible to say. My sibling can’t recall the event clearly, so I can only guess at how long it was.

And up till recently, I’ve been thinking I was out cold for a relatively short time. But it could have been longer. I can’t recall the kids who attacked us being in the field when I came to — I can’t recall how the light of the day was, and I’m not sure if my parents were concerned about my sibling and me being out longer than we should have been.

But to be accurate, there is a chance that I was knocked out for longer than a few minutes. It could have been much longer. And from what I understand, the length of unconciousness is an indicator of the severity of an injury, which can also be an indicator of long-term problems. Given the level of difficulty I had when I was a kid — particularly during and after 3rd grade… from that point on, life was one big obstacle course for me — I have to wonder if maybe I wasn’t injured worse than I thought I have been thinking I was.

I need to do some more research on this… It could be a good thing to learn. And I think it might help me talk to my parents about my childhood. Because despite learning a lot and putting a lot of things together over the past year and a half, I haven’t yet discussed my TBIs with them. I haven’t discussed them with anyone in my family. But next weekend, I think that’s going to change.

Figuring out how to talk to my parents about my childhood TBIs is actually one of the big action items on my plate, these days (in addition to working like a mad person to keep my job and keep up with my work… organizing my study in a way that helps me, not hinders me… clearing out old files and projects that were artifacts of TBI-induced agitation, rather than being something that would ever bear fruit… and tending to my marriage and home life). My folks have been saying for years that they can’t figure out what they did wrong to make me so unhappy when I was little. They can’t  figure out why I took so many wrong turns.  They can’t understand why I was so angry and rammy and difficult — what did they do wrong?

I have to tell them, it wasn’t them that caused the bulk of my many issues. It was TBIs. Getting hit on the head. Hard. And at an early enough age that it sheared and skewed the connections in my developing brain so it couldn’t develop “normally,” no matter what they tried. I have to tell them it wasn’t all their fault, and that all things considered, they actually helped more than they hurt.

For all their flaws, for all the things they might have done differently, my parents did create a home where I was able to develop habits of self-inspection and introspective reflection. They created a very structured and well-organized environment in which I could safely do things like paint and draw and write stories and express myself and learn things and be my own unique (and sometimes very weird) self. Certainly, it might have been helpful, if they had taken my shortcomings into consideration more and not overwhelmed me constantly with so much friggin’ input (my mother has always been a manic force of nature, God love her). But the fact that I’m still here, still standing, still able to keep motoring on, despite pain and agitation and confusion and generally feeling like I live my life in the dark and have to just bumble/stumble through a lot of things the first time, before I figure out how the heck to do stuff… Well, I have my parents to thank for that.

Even if my TBI at age 8 was more than mild — even if it was moderate — they raised me in a way that made it possible to keep going, keep moving, keep making my life the best that it could be.

And for that I am eternally grateful.

Now, I have to figure out a way to tell them, when they come to visit. I don’t think I could live with myself if I didn’t.