If I had gotten help for my TBIs sooner…

I have been wondering a lot about how my life might have been different, had I gotten help for my TBIs when they happened.

If I had gotten help when I was 7 and fell down the stairs, and again when I was knocked out by a rock when I was 8… If I had been given strict orders to rest, and then watched carefully and given extra help in school and life to teach me better how to deal with classroom and social situations… not to mention being treated as an injured person, rather than a bad seed… I wonder if my grades would have been better and if my talents would have been better used.

If I had gotten help after my sports concussions in high school… again, being forced to rest, sit out of sports, take it easy, address my balance issues and get help dealing with social and attentional issues… I wonder if I would have slipped so quickly into drugs and alcohol (that numbed the pain), or if I would have been such a contrary rebel who didn’t have a good grasp on the consequences of my choices.

I wonder if my grades might have been better, if my academic career might have been better, if my ability to pursue opportunities might have been better, earlier on in life… which could have made a difference in my career path, my ability to earn, my ability to pay taxes, my ability to hold down jobs for longer than a year or so.  I wonder if I would have become so fond of risky ventures and certain kinds of danger. I wonder if I would have chosen the friends and associates I chose over the year — many of whom were bad choices, and I never realized it. Till too late. I wonder if I might have sustained some of my friendships with people over the years who meant so much to me, but whom I hurt terribly because my brain was broken and I had no clue.

I wonder if I might have been able to really contribute something of value to the world — a great book or a great discovery or a great body of research… Or just steadier, more reliable participation in my society and culture. I wonder if I might have achieved a level of participation that, given my personal commitment to make the world a better place whenever and however I can — might have helped people more than I have, thus far.

I usually get upset at tax time, when I look at how much (or little) I’ve earned and paid out, and I think about how much better I might have done for myself, had I not been so injured so often over the course of my life… so impaired… so under-achieving… so clueless about what was wrong with me. Now, I don’t want to feel sorry for myself and I don’t want to punish myself for things I had no control over. My injuries started when I was a kid, and they pretty much changed the course of my life without my understanding how or why. I know with all my heart that I have been tremendously blessed in so many, many ways. But I always feel a sense of inadequacy around this time of year. I just don’t feel like I’ve done enough with myself. I haven’t made the most of my potentials. What a waste.

On the bright side, a Washington State concussion bill would help protect young athletes, which is truly awesome! My injuries are part of my past, part of my present, and very much a part of my future. I never got adequate help after my concussions, when I was a young athlete. My chance at full recovery immediately after hard tackles, falls, and various accidents may have passed me by, but for lots of young kids, that doesn’t necessarily need to be the case.

And that gives me hope for our future.

So, what’s “normal” after TBI?

I’ve been giving some thought to M’s comments about what folks might want to know about TBI, and I figured I would start with the “normal” question.

It’s truly hard to say, what is and is not “normal”…  but my experience was that I was doing and saying a lot of cranky, precipitous things that pissed people off and alienated them and gave them the wrong impression of what was going on inside my head… all the while without having a clue that the problem was with me.

As I understand it, when the brain is injured, it starts to mis-fire. The connections that were there before can be severed or frayed, so the usual ways that energy and ideas get from one part of the brain to the next just aren’t there. And the brain has to find another way of doing it.

It’s like when the Loma Prieta earthquake hit the San Francisco area, back in 1989. Someone I once worked with who lived through that said that their drive home from work usually took them 45 minutes — 20 minutes if there was no traffic. But after the earthquake, with all the roads closed and impassable and extra traffic with people panicked, it took them 3-4 hours to get home. And when they got there, they were exhausted… and all their dishes were lying smashed on their kitchen floor.

That’s a bit like it is when you’ve had a TBI. All the usual ways of thoughts getting from point A to point B are mucked up… and there’s this traffic jam of concepts and energy and ideas and impulses that are all glommed up in the process. By the time your brain figures out how to get where it’s going, you’re just plain wiped out. And there’s sometimes a big mess all around you, too.

That being said, “normal” after TBI can be:

• feeling exhausted
• feeling dull and dense
• having a very short fuse and blowing up at a moment’s notice
• having a headache
• being dizzy
• having trouble hearing
• having trouble seeing
• having trouble sleeping
• having trouble waking up
• being easily distracted
• having trouble concentrating
• not being able to understand what people are saying to you
• not being able to do things you always did as easily as you used to do them
• becoming confused over “simple” things for no reason that you can tell
• feeling like everyone is out to get you

All of this is made worse by fatigue. Without question. The brain needs extra rest to recover and rebuilt its pathways, and if you’re tired and your energy is all taken up with trying to keep up with your life, that doesn’t help your head any.

You basically have to just get lots of rest, take it easy, and be very, very patient with yourself.

And get used to redefining “normal”. Forget how things used to be. Get used to how things are now. Let the old stuff go, and come up with a new set of measurements for what’s “normal” in your life.

It’s not very easy, at times, but it is what it is.

What do you want to know about TBI?

Okay, so I’ve been running my mouth for over a year, now, talking about my TBI experiences, self-directing my own efforts in this TBI research and reporting one-writer “forum” of mine. I have to admit, I tend to run low on ideas, now and then.  Plus…

Where are my manners?

Shouldn’t I make room for others to chime in, too?

I check my stats pretty regularly (okay, to be honest… obsessively), and I’m always interested to find out what kinds of information people are looking for.

Not long ago, it occurred to me that I’m looking at stats for people who are looking for information that I’m writing about – it’s a self-fulfilling prophecy I’m writing here. And it occurred to me that it would probably be a lot more interesting to find out what other people are looking for, outside of my “prompting” or my own ideas.

So, I’m asking — What is it that YOU want to know about TBI?

Do you want to know what happened to your head when you hit it?

Do you want to know why your TBI-survivor loved-one is behaving the way they are?

Do you want to know how you can help?

Do you want to know where to turn for help?

What do you want to know?

I’m ready and eager to hear about it… and go out and research the answers for you. I’m quite adept at Google, and I have experience looking into a lot of various sources. And I’m kind of good (I like to think so, anyway) at detecting marketing fluff and puff, versus serious quantitative information that we can put to good use.

I have to warn you, though — I am a multiple TBI survivor, and I have my limits. I may think something is useful to you, when it’s really not. I am also not a medical doctor or a trained professional healthcare provider. But do know all too well what the “inside” of TBI is about. And as my Bostonian friends tell me, now and then, I’m wicked smaaaht 😉 So, I can at least try to lend a hand.

So, fill up the comments space here, if you like. Don’t be shy. No question is too small or too stupid or too obvious. We’re all in this together.

Temping Tips for TBI Survivors

For most of my working life, I’ve temped. It’s kept a roof over my head and food on the table, and while I haven’t gotten rich, I have also been working steadily for the past 20 years. As in … constantly. I haven’t had much vacation time, in the past 2 decades, but at least I’m solvent.

Temping has given me lots of flexibility over the years — I can take time off whenever I want, and nobody can stop me. I just don’t get paid for the time. I can come and go when I please, so long as I get my work done, and nobody has high expectations of me as a “permanent” contributor. It gets a bad rap, out there, but temping is a really under-valued strategy, especially for TBI survivors who need to pay their bills.

I have never been able to collect disability and I’ve always been on my own in the world, without much of a safety net, so I’ve had no choice, but to figure this stuff out.

Here’s what has helped me the most.

1. Pick a specialty to temp in. For some reason, I really did well working for lawyers, and the work of a temporary legal secretary fit me well. There wasn’t a lot of interpersonal interaction, there was a lot of typing, there was a lot of transcribing, there was a lot of systematic organization. And because I was filling in for other secretaries who were very organized in meeting the needs of professionals who specialized in high-intensity law, nobody had very high expectations of me. When it came to finding work, there was no lack of legal temp jobs. I lived in a large city for a while, and there were plenty of lawyers who needed “floaters” or temps to warm their secretaries’ seats for a day or two. And after I had a bunch of legal experience under my belt, I could earn higher rates because of my specialty. I didn’t plan it that way — it just happened. If I ever hit rough times again and cannot find work anywhere, I’ll go back to legal secretarial work. Now, I know that being a temporary secretary isn’t the most glamorous thing — and when I was doing a lot of it, ’cause I couldn’t hold down a permanent job due to physical and cognitive problems, I got a lot of crap from people who thought it was “beneath” me. But I made a living. I wasn’t unemployed.
2. Temp for the biggest companies you can find. Not only do they pay better than small companies, but you can get lost in the crowd. You don’t have to hassle with lots of interpersonal interaction — you’re just another number at that behemoth. And working at large companies puts you in the midst of people who are used to dealing with a wide range of personalities, so your idiosyncracies aren’t as obvious as other places. With huge companies, policies and procedures are usually very well defined, so there’s less guesswork in figuring out how to interact with other people.
3. When in doubt, say nothing. If you’re having a conversation with someone and you get confused and lost, just be quiet. Nod and smile and cock your head to one side, like you know what they’re saying. And repeat back a little bit of what they said to you in slightly different terms. This not only makes people think you know what they’re talking about and buys you time so you can figure it out later, but it also makes you look like you know more than you do. Remember, you’re a temp, so they don’t know you’re confused. And usually, when people say nothing, other people tend to think it means they know something but they’re not saying.
4. Never, ever, ever tell anyone you’ve had a TBI. You may wish to establish some personal rapport with others, but telling them about your head injury will not achieve that. You want to project as professional an image as possible and play your cards close to your chest. You can be personable and pleasant, but DO NOT DIVULGE YOUR TBI TO ANYONE, INCLUDING YOUR AGENCY.
5. If you have to make conversation, ask someone else to tell you about themself. This may sound like common sense, but it’s something that took me a while to learn. Making conversation is very difficult for me, so I tend to let other people do all the work. I ask them about themself or their weekend or their family or their interests, and the conversation just runs itself without my needing to do a damned thing. Not only does this get me off the hook and disguise the fact that I haven’t a clue what someone is saying to me, but it also makes me very popular and a sought-after “conversationalist”. I just nod and smile and cock my head to one side now and then, and people think I’m listening and participating.  I might not be as “authentic” as they think, but I’m satisfying social requirements and making other people feel good about themselves.
6. Don’t be afraid to ask for help. As a temp, you’re allowed — supposed — to need help. Find the people who hold the keys to the castle, so to speak — the receptionist, the senior secretaries, the mailroom folks — and solicit their help. Not only will you be able to do your job better, but — provided you’re not acting helpless and clueless — you give others the chance to be genuinely helpful and feel needed, which they love.
7. Take your agency up on their free training. The more skills you have, the more they can charge for you. Many agencies offer free training in software programs, so take every training opportunity you can get. I can’t stress this enough. Put in the hours you need to get free training, then get as much of it as you can. I got my start in computers from a self-paced word processing training program at one of my first agencies. It changed my life. And it was free.

There are more tips, I’m sure, but I can’t think of them right now.

Long story short, if you’re looking for ways to pay your bills and keep out of the poverty zone, you should seriously consider temping. Working a series of temporary jobs over the course of years has helped me stabilize myself, stick to a regular schedule, acquire skills, practice and polish my social abilities, do something meaningful and significant with my time, and be a contributing member of society… all within a temporary setting that I can leave, if I screw it up… and start fresh, the next time around. I’ve done just that, lots of times, and I learned something invaluable in each experience. I also did better the next time.

Temping may get a bad rap, and people may laugh at you for doing it, but it’s your life, it’s your bank account, it’s your mental health, it’s your future. And most people have no clue how helpful temping can be, when you’ve had a TBI.

Just don’t tell anyone why you’re really “freelancing”.

How I found a great neuropsychologist – and you can, too

I consider myself extremely lucky. Not everyone has the good fortune that I do — finding an experienced, highly competent neuropsychologist who is not only patient and kind and knowledgeable and insightful and observant, but who is also geared towards rehabilitation and empowerment. And who is well-connected in the neurological and psychological world.

I have truly been protected and guided by some Divine Force, in finding this individual. They have helped me in countless ways, and I’d be lost without them.

I found this individual the old-fashioned way — by picking up the phone and talking to people. I was so turned around and confused and frightened and freaked-out, about a year and a half ago, when I realized (like Paul on the road to Damascus) that things were not right in my life, and they hadn’t been for a long, long time. All the stories I’d been telling myself about how I was perfectly fine and okay, and everyone else had the problem, not me… well, they all just fell apart. I had to get help. I had no idea where to turn. I was so flipped out and frustrated and embarrassed and ashamed of myself… here, I was the Big Cheese who supposedly had it all together, and the outside shell I’d built up around me had started to crack into little tiny pieces.

I swallowed my pride and emailed the Brain Injury Association near where I live. They gave me some good info via email and told me to call anytime.

Now, you have to understand, I have a hell of a time talking to people on the phone. I get confused and turned around, and I have a hard time understanding what’s being said to me. Now I’ve learned that the mechanism of my brain that turns sounds I hear into usable information is broken and not working correctly, so I understand why I’ve always had such a hard time grasping what people were saying to me. But 18 months ago, I didn’t know that yet — all I knew was that I friggin’ hated to talk on the phone, I couldn’t understand what people were saying to me, and it sent me into a panic at times.

But then a lightbulb went on in my head — it was perfectly okay for me to call the Brain Injury Association and sound/talk like a raving lunatic (if it came to that), because they were the Brain Injury Association and they specialized in dealing with people like me. Plus, even though I had a hugely difficult time handling stuff, I was reasonably sure that they’d dealt with people who were far worse off than me. Plus, it was their job to provide information to people who are brain-injured. That’s what they were trained to do.

So, I picked up the phone.

And I got honest. When one of the volunteers answered, I did the unthinkable and gave them my name and told them I needed help. How unlike me. Seriously. In the past, I would have muttered and mumbled and beat around the bush and then just hung up. I never would have said I needed help. I never would have given someone my name. No way, no how. But this time was different.

I told them my situation and asked if they could help me. And when they said they weren’t sure, I did the unthinkable again… and followed that up with a question: Do you know who can? In the past, I would have just said, “Well, thanks for your help… have a nice day,” and hung up. And then I would have wandered off in despair, gotten confused and depressed and withdrawn. But this time, I actually followed through.

The person on the other end of the line paused for a moment, and I just hung in there. I was so petrified… it’s hard to explain that level of terror over something as basic as a phone call. It’s embarrassing for me to admit, and I hate thinking about it. But the phone and I usually don’t get along very well. I think that also, being on the phone with a stranger who knew my name and knew I had sustained multiple brain injuries… being afraid that someone would realize who I was or tell someone about me, or someone nearby might overhear my conversation… being so unsure of myself about being on the phone, to begin with… not sure if I was saying the right thing or doing it right or being clear… feeling like I was making a mess of things — again… it was pretty tough.

After a pause, they suddenly thought of someone I could call who could help me. They gave me the name and number of a long-term brain injury survivor in another part of the state, who had lots of experience with tracking down the source of their issues, years after their injury. They recommended I call them, and wished me luck. I took down the name and number and thanked them, then called this person right away. I knew if I didn’t, I’d never do it, and I had to do something.

I called the number and managed to hang in there through the initial awkwardness of repeating my name and my own story. The person on the other end of the line was really, really helpful, and they were able to spend some time talking to me about what they’d been through. They told me about requesting copies of all doctors’ notes after visits, and making sure that I didn’t get stuck with someone who was clueless, and they told me about how they’d been through the wringer with a bunch of different neuropsychs who just didn’t have a clue. And they also gave me some contact information for a neuropsych they’d gone to see, who had helped them.

They said this doctor was in private practice and they were located some distance from me, but they were the best, and they were well worth the effort of getting to. I said I didn’t care about driving — I would willingly go way out of my way to get the right help.

After I got off the phone with this person, I called the doctor and left a message. I gave them my name and told them my situation, and I left my number. Then I let it go. It was the holiday season, and I had plenty of things to keep me busy.

I also called some other neuropsychs and told them my story. They were helpful to varying degrees — in part because once they heard what insurance I had, some of them just disqualified me outright. But others told me what I needed to do, in order to get around the insurance roadblocks, which was helpful.

After about a week or so, I got a call back from the recommended doc I’d left a message with. They said they would talk to me about my situation, and we spent close to an hour discussing the issues I have. I was starting to get a little desperate, because I was going through all of this on my own, nobody else really knew all the details of my situation (I hadn’t yet worked up the nerve to tell my immediate family members), and I was running out of energy and ideas. But by the end of our discussion, I actually felt like there was hope.

Long story short, I had a really good discussion with the doc, and they suggested some alternatives for my insurance situation. But it took me another eight months before I could navigate the medical and bureaucratic red tape to actually get to see them. It felt like it took forever… and in the meantime, I had a couple of really distressing encounters with (the wrong) neurologists, some deeply disconcerting exchanges with individuals who refused to accept I was having problems, a couple of f’ed up job changes (accompanied by the smell of burning bridges), and a whole lot of trying to get my bearings in life.

But now I’ve found a great neuropsych and have had a great working relationship with them. I’m not sure how much longer we’ll be working together, but if we met for a few hours every other week for the next ten years, I wouldn’t regret it.

If you’re looking for a good neuropsychologist — or really, any medical or “caring sector” professional — and you’ve sustained a TBI or some other issue that is not well-understood, you can cut back on the BS by doing the following:

1. Talk to people who have the same condition as you, who were successful in finding help.
2. Talk to your local Brain Injury Association folks to find out where to look for help.
3. Make sure you get copies of all medical records, even if the doctors and their receptionists look at you funny.
4. Take notes on what they tell you.
5. Don’t be afraid to seek help elsewhere. Sometimes it just doesn’t work out with a provider, so keep going.
6. Never, ever, ever give up!

“So, have they tried to label you bipolar?”

Thus asked my neuropsychologist, the other day.

I was telling them about my psychotherapist friends who are well-meaning, but ascribe all kinds of cognitive and behavior issues to psychological ones.

I’ve been labelled all sorts of things by psychologist types — obsessive-compulsive, depressed, manic, repressed childhood sexual abuse survivor (which to my knowledge, information and belief is not the case), etc. — and I told my neuropsych as much.

“Or, maybe you just got hit on the head a lot,” they said, shaking their head in frustration. And disbelief.

They also told me, that visit, about another patient of theirs who had been diagnosed with “rapid cycling bipolar disorder” because they were slow and sluggish getting up in the morning, their mood picked up in mid-day, and then they wound down at night.

Turns out, they just had a wicked case of ADD and their brain worked more slowly at the beginning and end of the day. But they had to get saddled with an “extremely rare version of bipolar disorder” diagnosis… and perhaps have to take god-knows-only-what-kind of meds, on top of it.

Sometimes the mental health profession just makes me crazy nuts. Do they do it for job security? I have to wonder… 😉

Just keep working

I’ve been giving a lot of thought to how TBI can land people in the world of unemployment… and eventually poverty. It’s a rough thing, for sure, and I can’t say I have the answer to how to avoid destitution after a brain injury.

I can say, however, that even after having sustained numerous head traumas over my life, I have never lacked for work. I believe this is because I’ve managed to connect with work in ways that accommodated my difficulties — without letting others know I had those difficulties.

Specifically, I’m talking about temping. Doing temporary work. Doing contract work. Signing up with agencies whose job it is to find me work and keep me working. I have had a lot of difficulty, over the years, keeping occupied with companies longer than a year or so. But with the help of temporary agencies, I’ve been able to keep working — even through the most difficult job markets.

Temping tends to have a bad reputation. I can think of several movies that show temps in a bad light. And there’s a lot of bias and prejudice against it. Believe me, after having temped for many, many years, and having had to endure the unfavorable scrutiny (even scorn) of my parents, my siblings, my peers, and plenty of strangers, I know that temping doesn’t have the best rep.

But so what? Thanks to temporary gigs, I’ve been able to work at lots of different companies and build up my skills over time. I’ve been able to take time off, move around from one company to the next to see how things were and develop my skills — while getting paid.

In a way, temping is like doing volunteer work — the expectations of how well you’ll do are very, very low, because you’re coming in from the outside. And you’re a temp. But you still get paid to keep the seat warm and do a job.

I’ve never been through a rehab for my issues, and I’ve never gotten therapy (yet) to help me with my problems. But temping has really helped me build up my real-world working skills — and got me free training, on top of it. It’s all worked out well. Better than I could have imagined.

So, if you’re struggling with finding and keeping work after a TBI, you may wish to consider temping. Just don’t tell them you’ve had a TBI, when you interview. Tell the folks you’re interviewing with that you’re seeking more flexibility in your schedule.

Thinking about TBI “recovery”

Someone posted some great comments/thoughts on my blog the other day — https://brokenbrilliant.wordpress.com/have-you-experienced-a-brain-injury/ and so I’ve been thinking a bit about what it means it “recover” from head trauma.

I had a great visit with my neuropsych last week, and they actually told me that while I was completing their tests, I used some very effective coping mechanisms to answer the questions and complete the tasks, so my actual numbers are “inflated” (are better) compared to my actual abilities.

I used strategies like visuals to keep track of memory tasks. I also did things like not doing things in the proper order, so I could complete the tasks to my satisfaction. I improvised at times, rather than just doing straight-out what I was told to do. And it apparently made my scores come back higher than they truly are.

Of course, it’s a bit late to re-take the tests… eventually I’ll see a final report on the findings, and I’m kind of working at bolstering my self-esteem, so when I do find out what my scores are — or “should have been” — I won’t get too depressed over it.

I have to remember — I’m doing great — so great, in fact, that most people have no clue I’m a TBI survivor. But I know. And how do I know!

I’m really wrangling with the details of my own ‘recovery’ at this point — finding out that my coping strategies are actually a whole lot better than I ever suspected… and at the same time finding out that I’m a lot more impaired than I ever imagined I was. It’s such a double-edged sword.

The fact that I’m doing so well is both a testament to the power of the human spirit and will, as well as a warning shot across my bow, that I can’t afford to “buy my cover” and get too cocky. On the one hand, it’s evidence that I’m doing well, but it’s also a kind of proof that I’m not. At least not as much as I appear to be.

I think, for me, the real test of how well I’m doing/recovering has a number of different sides:

First, how well am I integrating with the rest of the world? How seamless is my interaction? Can I get through social and work situations without pissing people off and doing real damage? And can people even tell that I’m brain injured? It seems a little sad, that my true measure of success is not how GREAT I’m doing, but how well I’m managing to NOT do badly. But I’ll take it.

Second, how well am I monitoring my own situation? Am I factoring in my deficits, so I can avoid screwing up left and right? Am I being cognizant of my limitations, so I don’t overextend myself and get into trouble?

Third, am I remembering — in the process of dealing with others — to not buy my cover? I can’t afford to get cocky. That can spell disaster. I must always, always, always keep in mind that how I present has a lot to do with “theater” — that I’m playing a role in a world that doesn’t understand or make room for my limitations. And that this role is just what I do to get by. In no way, shape or form, should I ever lose sight of the fact that when I step out of my house, I’m taking on a persona for the sake of effectively interacting with an essentially hostile environment. It’s not 100% me — much of “me” I need to leave at home and swap out for a version of me that appears to be fully functioning. And at the end of the day (literally), I need to revisit my day and sort through what happened to make sense of it, parse out what my experiences were, learn from them, and remind myself that in some ways I’m doing better than one might expect, but in some ways I’m doing far worse than anyone else  realizes.

Fourth, am I able to do more than just exist? Am I able to go just one step farther in my actions and interactions, to make a positive contribution to the situations I find myself in? Am I able to help where I can help, and (at the very least) not hurt when that opportunity presents itself? Am I able to get something from the situations I’m in, too, so that my life becomes more than just base survival? Sometimes it’s all I can do, to keep up with a conversation or remember what happened a few minutes ago. But if I can at least come away from an interaction with someone having gotten something of value — information or a greater sense of connection — as well has having offered something in return, then my efforts are all worth it. Sometimes, I can’t do much more than a little bit. But if I can do just a little bit more than the bare minimum, then I figure the experience was a good one. Or at least a lesson.

Fifth, have I learned anything from all of this? I keep a journal, and I contemplate my life while I’m driving to and from work. I don’t always “get” everything that goes on around me, but really, who does? We all have limitations, we all have our issues. And on some level, we’re all essentially clueless in the grand scheme of things. That both frustrates and relieves me. As much as I would like to think I’ve got it all figured out — or that I eventually can — it also takes the pressure off for me to realize my limitations, especially when it comes to my brain. Great Mystery is just that — Great Mystery.

I guess at the bottom of it all, what saves me is Grace. And mercy. And hope. it doesn’t make  much sense for me to lose hope (permanently) because my broken brain gets signals crossed and it tends to think things are different than they are. I think things are worse than what they are, and I think that they’re better than they are. So, I don’t have all the answers, and it doesn’t make logical sense for me to lose hope and just give up.

Ultimately, it may sound cliche, but it’s not about the destination, it’s about the journey. It’s about finding points along the way that make my life wonderful and meaningful and educational and inspiring… Muddling through those places of confusion and frustration and taking something away… I’m “greedy” that way — I always need to have something decent to show for my hassles. And I’ve had so many hassles, I’ve got plenty to show for it all. Whether that’s “decent” or not, is anybody’s guess 😉

So, when all is said and done, and the day is over and I’m looking back on it all, even though so much is incredibly f’ed up, now and then, even though I’m confused a lot and am not following a lot, even though I get turned around and Angry!!! and scared and timid and incautious and foolhardy and so very, very tired… in the end, it’s all just experience. Good, bad, and a mix of all of the above.

It’s a good thing I like adventure 🙂

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.

Giving hope its due

Okay, now that I’ve riffed on despair, it’s time to dwell on hope. And healing. And the good things that come along with brian injury.

I can almost hear you thinking, “What good things that come along with brain injury? What are you – nuts? Head trauma sucks, and long-term after effects of even a mild brain injury can be so debilitating as to ruin lives, destroy families, trash careers… and more.”

I agree. Brain injury is a national health crisis and it’s a tragedy and a disgrace that something so common (see the stats in the sidebar) is so little understood and its impact so under-estimated. It’s a travesty, in fact. Last night, I was reading the book Confronting Traumatic Brain Injury by William Winslade. The Amazon review says

Author William J. Winslade suffered from a traumatic brain injury (TBI) as a 2-year-old, when he fell from his second-story porch and landed straight on his head. He’s one of the lucky ones who’s recovered fully, both physically and emotionally; his only souvenirs of the fall are a three-inch scar and a dent in his skull. He warns that of the 2 million Americans who suffer from TBI each year (most of them from car and motorcycle accidents), up to 100,000 of them will die prematurely. More than 90,000 of them will face up to a decade of extensive rehabilitation, at a cost of up to $4 million each. Even a TBI as seemingly minor as a concussion can have devastating long-term physical consequences, causing seizures, memory loss, learning disabilities, and more. However sorry these problems may be, he writes, “the truly debilitating deficits” are the less-obvious emotional effects, “such as social isolation, [which] take their own insidious toll.”

Which is all very true. I can personally attest to it. And that book is ten years old. So why don’t more people know about this stuff? Why is our country — and the world — still forced to cope with so much trouble relating to brain injury. From violent crime to domestic abuse, from learning disabilities to physical limitations, to series of progressively more debilitating re-injuries over the course of lifetimes, brain injury plays a whole lot of havoc with our world.

The thing is — and I’ve read pieces by Dabrowskian therapists saying this is why they became interested in his work — the information we have (and we do have plenty of stats about TBI) isn’t always conducive to knowledge.  Perfectly intelligent people with lots and lost of information at their fingertips continue to overlook and ignore or downplay the impact of head injuries, and refuse to take steps to prevent it. What’s (perhaps) worse, is that perfectly intelligent people, who are capable of understanding the objective impact of head injury, persist in treating TBI survivors as though there’s something wrong with them, that they’re deliberately doing the things they do, that they’re intentionally screwing up, that they’re cheating the system, slacking, taking advantage, and doing any number of other things to “milk” a supposed injury.

Check the blogs of TBI survivors out there, and you’ll find more than a few accounts of difficulties with friends and loved-ones who refuse to factor in brain injury in the TBI survivor’s behavior.

Now, I could circle back around and delve into despair, but I’m choosing a different tack. Why do intelligent people neglect taking the facts about TBI into consideration? Why? I suspect it’s because brain injury isn’t just about facts. It’s about harm done to the singlemost important organ in the body. It’s important not just because nothing works without the brain, but because even if it is functioning somewhat well in a physical sense, if it’s not operating at peak performance, it deprives us of something even more vital to the human soul than motor function or control of our bodily functions — it deprives us of our humanity.

Truly, brain injury is terrifying for most people, because it hits us where we live, in the deepest, darkest part of our souls, where we are most vulnerable. Especially, I think, for intelligent, intellectual, fact-driven people, the emotional impact of brain injury — just contemplating it, to begin with — can be so unsettling that it causes higher reasoning and analytic function to slow, if not stop. Pondering the impact that head trauma can have is, well, traumatic. It kicks off our most basic survival responses. And our fight-flight-freeze response tends to make us abandon high reasoning for the sake of just getting away from the thing that threatens — or just frightens — us.

I suspect that this, more than anything, is what keeps brain injury from being adequately apprised and addressed in this country. And it appears that the only thing that will make us sit up and take notice are tens of thousands of returning veterans — trained warriors, wounded warriors — who are reintegrating into a society that is woefully unprepared for them… but will need to change that, if we’re going to get by in this new century, this dawning millenium.

And that’s where I think hope can help.

Certainly, hope is necessary in any tough situation, but especially in the case of TBI. Mild, moderate or severe, brain injuries certainly leave a mark on survivors and their family, friends, co-workers… often without them understanding why and/or to what extent. But we don’t have to let that keep us down. Yes, there are problems. Yes, there are issues. Yes, there are tremendous difficulties. But with the brain, you never know what’s going to happen next. Some recoveries last months, years, decades longer than anyone expected them to. But abilities can sometimes be restored, where the experts were sure they were gone for good. And where some abilities are lost for good, others can arise in their place — or show up where they weren’t before. Plenty of people have survived trauma that marked them “certainly” for death, and they’ve battled back from the brink. And I’ve heard stories of people who sustained significant brain trauma, only to find that suddenly they could paint like nobody’s business. Or they started writing one day for no apparent reason.

Looking at some of the most brilliant minds of the past thousand years, the brains inside their heads have not always been “standard issue”. Einstein was missing part of his brain. I’ve also heard that Thomas Edison’s brain was malformed. (Note: I’ll have to do more research that one — I’m not finding information about it right away.) Gifted artists and writers have been epileptic, as have some of our most effective leaders and gifted actors and athletes.

And I suspect, the more we learn about brain injury, the less afraid of it we’ll be. The more we realize that it is NOT a death sentence, that it is surivivable, that it can actually impart or uncover abilities and gifts that might otherwise go unnoticed and undeveloped, the less traumatic the mere consideration of it will be. I don’t mean to diminish the suffering of those who have really struggled with the after-effects. And I don’t want to downplay the seriousness of it. I’m just saying, there are two sides to this story — the tragedy and the triumph. And when we can pay as much attention to the triumph as we do the tragedy, and accept them both as possibilities… as parts of the whole of human experience, we might stand a better chance of confronting the challenges that go along with brain injury, and learn to integrate the experience into our collective storehouse of information… and for once, let facts — not fear — govern our understanding of the injured brain.