Off to the new office

We’ll see what’s inside…

Well, this is pleasant. I woke up early today, and now I have even more time, because I have a shorter commute. The pressure is off, job-wise.

Elsewhere in my life, things are heating up a bit. My last remaining grandparent, who is over 100 years of age, is in failing health, and my parents think they will not last long. This grandparent has been the single-most strongest presence and role model in my life, and I would probably not be here without their example. We haven’t always seen eye-to-eye, and there were many years when we kept each other at a distance, but that’s all behind us now.

Now there is only love and respect. Time heals.

So, I may have a trip ahead of me later this week. I have some critical deadlines looming, so I have to have a backup plan, for sure. I need to organize things and make sure they are in order, so I don’t miss the important dates coming up. I feel good about where I’m at, and how I’m handling things now. I’m getting the hang of the scheduling we do, and it’s falling into place.

I just needed to go through out, have some sketchy experiences to make sure it all sinks in, and keep going.

I’m seeing my neuropsych later today, also. I have prepared for the meeting, collecting notes from my past week, because for the life of me, I cannot seem to remember — when I get to their office — what I wanted to talk about. I’ve put together a list of topics that are all in my head and area all factoring into my life right now, to make up my whole experience. I’m hoping that will help them understand my situation better, because what I end up talking about is just a very small, small piece of the whole picture for me, and how can I get help with what is really challenging me, if I can’t articulate it.

I’m tired of being upset and frustrated over the whole process, and I’m concerned that they think I’m in a different “place” than I really am. It’s not that everything is awful, or that I’m debilitated or disabled. I just have certain things that are really intruding in my life, and I need to figure them out — clearly and plainly, not in a roundabout way.

So, there it is. We’ll see how it goes. I get a little tired of the disconnects between how I’m feeling, how I describe my experience, and what others interpret from it.

And I’m doing something about it.

Onward.

Where recovery happens

Writing has a way of getting me where I want to go

Reading “The Woman Who Changed Her Brain”, I have been thinking a lot about how I’ve managed to bounce back in my own life and rebuild / rewire my own brain. Life after TBI is absolutely strange. I haven’t recognized myself for years, and I thought for sure I was gone for good.

But I’m not. I’m still here. And I’m feeling more “back” than I thought I ever would or could.

So, where does that happen? How does it happen? I’ve gotten some great help from a neuropsych over the past 5 years or so, but to be honest, for all the progress they’ve seen me make, they probably don’t have a clue about what all goes on inside my head. How could they? When we talk, I feel so incredibly slow, and half the time, I can’t seem to get the words out that I want to say.

It. Is. So. Frustrating.

It’s maddening. But they don’t seem to understand that the things I want to say, aren’t getting through.

And then I become so frustrated with myself, so fed up and overwhelmed… that I just say what sounds good at the moment and keeps the pace moving. I sound quite confident, because I know how to project that. But inside, I feel like I’m dying.

Good grief. It’s really bad, some days, but I don’t have the heart (or the energy) to slow things down and make it clear that I am not really following, that I haven’t understood a word they said, and I’m sitting there nodding and looking all “with it” — without a clue about what we’re supposed to be talking about.

For someone who has always considered themself quick and sharp, this is pretty dispiriting. I mean, I’ve always had trouble understanding people, but I’ve never felt this slow before. I could always engage in witty banter, during my teen and adult years, before my TBI in 2004. After that, nothing was funny, and I couldn’t muster the quickness to parlay and banter about.

It just feels so slow. And I don’t know how to describe or explain it to my neuropsych. It bothers me so much, I want to cry. But I can’t cry with my neuropsych, because when I break down, I feel terrible and I have a hard time functioning. I get overwhelmed, and that’s no good, when my neuropsych is located 25 miles from my home. I have to be able to drive home.

I just don’t know what to do. Maybe I need to write them a letter and explain the situation. I’m not sure that will help. I’m not sure they’ll believe me. But something tells me I need to at least try. Draw them a picture. Something. I just need someone to witness in person the stuff I’m going through and understand … even if I don’t look like I’m struggling. Even if I’m covering it all up really well.

The thing is, I am recovering in so many ways, and that has really happened here – on this blog – where I can “speak” my mind and not worry about repercussions. Writing is so much easier for me than talking. Talking gets me turned around, and it’s hard for me to pay attention. I hate discussing things and “working them through” with people. So much gets lost in the translation. So much wasted. So much missed. I just give up after a while and let them think they’ve “won”. I can’t seem to keep up with the flow of conversation. I need a better way to communicate — at least with my neuropsych.

Eh… I’ll figure it out.

Or I won’t. And I’ll keep blogging, keep writing, and keep on with my recovery. Whether or not my neuropsych “gets it”.

Onward.

Hard-wired for success, failure, and everything in between?

We all have some sort of resilience within - I have to believe that

We all have some sort of resilience within – I have to believe that

I had an interesting discussion with my counselor last night. To be truthful, this individual has been very helpful to me, but they also have some severe limitations — such as their outlook on life. I was discussing resilience yesterday, asking aloud why it is that I’ve had so many situations where I had the bottom fall out from under me, yet I bounced back… when so many other people have less awful things happen, but they never fully recover.

Why is that? I think it’s a valid question that needs to be explored more fully.

My counselor told me that, after all they had seen while working for the state social services department for many years, they believed that some people are hard-wired for resilience. Some people had terrible things happen to them, and they recovered, while others did not. And they were just built that way.

Thinking about that, it’s probably one of the most depressing things I’ve ever heard. And it’s definitely “old school”, harking back to the days when people believed that you had what you had in terms of luck and life and cognitive ability, and that was that. Pretty antiquated, if you ask me. Of course, I wasn’t going to argue with someone who was working “in the system” for decades and is over 70 years old, and they have their perspective — their story — and they’re sticking with it.

I just can’t get on board.

See, I don’t think that’s true at all. I believe that people can change — they change all the time. And the people who are “stuck” have as much of a chance of getting “UNstuck” as the next person. Of course, there are going to be extreme cases, where dynamite wouldn’t dislodge them from their misfortunate mindset. But the vast majority of people have an inborn — IN-BORN — capacity to change.

Hell, we change all the time. We change our minds about things. We learn new things. We get bored by some things and drop them, and we get excited by other things and jump in feet-first. We make friends, we lose friends, we change jobs, we move around. We are in a constant state of flux and change at all times in our lives; we just normally don’t think about it, because change is really a regular part of our lives.

And then there’s the unanticipated change, that blindsides us and doesn’t make any sense to us in the grand scheme of how we understand our lives and ourselves.That takes some work, to get back. Sometimes we make it, sometimes we don’t. Sometimes we end up turning into someone we don’t recognize. But we do change. We can’t help it.

TBI is the kind of change that takes us by surprise. Nobody can probably EVER anticipate the changes that happen when the brain is rattled, shaken, and reshaped in subtle, miniscule ways. Recovery from that kind of hit is different from just about any other kind of change, because the very thing that’s the central controller has been impacted. Certainly, with cancer and chemo-brain and other kinds of injuries and illnesses which impact the brain as well as the body and spirit, you’ve got that brain stuff in the mix as well. The thing is, with TBI — especially with mild TBI — it’s so damn’ hard to figure out what the hell you’re supposed to do, how you’re supposed to do it, and understand what’s going on.

The thing that probably makes it different from other types of illness, is the hidden aspects. Absolutely, there are many people who are struggling with hidden illnesses, yet with TBI you’ve got the perfect storm of disconnects between where you’re hurt, how others perceive you, and how you can heal.

And yet, we can heal. I’m healing. I have my setbacks, my bad brain days, my times of going a little bit nuts over things that are bothering me in the back of my mind. But I’m healing. And overall, my situation is vastly improved over where I was, just a few years ago. Make no mistake, it’s taken constant work. It’s been exhausting. There are no “days off” in this process, but at the same time, quality recovery is practically impossible without some sort of rest and recuperation. It’s a balance.

And I wonder what it is that has made my recovery so much more… effective… than probably anyone would have guessed or anticipated. I know my neuropsych is kind of amazed at the recovery I’ve made, and how … functional… I am in my world. I’m engaged. I’m social. I’m involved. I’m out of debt for the first time in over 20 years. (I’m also usually exhausted, but that’s the price you pay, Oh, well. At least I’ve learned how to build it back up.)

I also wonder how it is that I’m able to bounce back from extremely dark times, and rebuild the way I do. Money problems. Marital problems. Health problems. Exhaustion. Work difficulties. Losses of friends and loved ones. Dark nights of the soul, when it seems nothing will ever get better, and I’m seriously wondering how much longer I have to keep on living. Ultimately, this all passes. And I’ve found that the more quickly I engage the darkness on its own terms, just letting myself feel as badly as I do, just letting things get as bad as they can, the more quickly I can bounce out of my sh*tass state of mind.

What makes that possible? What lets me do that? Is it just how I’m hard-wired? Is it just how I’m built?

I find it hard to believe that I’m just built that way, because in years past, I have been so down, so low, so desperately depressed, nothing could drag me out. For so many years in my childhood, youth, and adulthood, I was in an extremely low state of mind. And looking back at who I was, once upon a time, nobody — but nobody — would believe it was the same person.

And if the people around me were looking forward to right now, probably nobody would believe that I’m the same person that I once was.

Some say it’s all about character. I say, character can be learned. It can be taught. It can be modeled. And the fact that I’ve had so many positive role models in my life, whom I really respected and looked up to, I believe has had a huge impact on me and my life.

I wish I could write more about this, but I’m running out of steam.

Bottom line is, I don’t believe for a minute that people are truly hard-wired to be one way or another. We change. We change all the time. It’s how we’re built and what we do naturally. We just have to figure out how to change in directions that help us, rather than make us (and everyone around us) miserable.

Well, the day is waiting. It’s my last day at the old office, and it’s going to be a good one.

I don’t just know it will be — I’m going to make it that way.

St. Barbara of Arrowsmith-Young

Thanks for the help this past Sunday

So, on Sunday I spent the afternoon reading Barbara Arrowsmith-Young’s “The Woman Who Changed Her Brain”, about how she learned how to identify the underlying issues beneath her severe learning disabilities, which had made her life a living hell for 26 years of her life. I found the book for free on Scribd.com — my new favorite place of all time. You can read the book for free here: https://www.scribd.com/book/224350322/The-Woman-Who-Changed-Her-Brain-And-Other-Inspiring-Stories-of-Pioneering-Brain-Transformation - you just need a free login.

Anyway, I am finding a lot of similarities between her situation and mine, despite obvious differences. And it occurs to me that after hearing a number of accounts of her hitting her head (running into things, banging her head before she started to study, etc.) TBI might just factor into her account. She focuses on the learning disabilities parts, rather than the root cause, so that makes the book more accessible for folks who have had any kind of difficulty with learning and understanding and communicating — me included.

One section in particular jumped out at me yesterday:

I recall a twelve-year-old student with average intelligence but whose severe weaknesses in both the left and right prefrontal cortexes left her as compliant as a young child — so compliant that other children would toy with her and order her to stand and sit on command or to stay in the schoolyard long after recess was over or to surrender her Nintendo game. Her neurological weaknesses had robber her of her ability to evaluate a command and decide whether it should be obeyed. She addressed her problem areas and eventually was able to say no.

That’s pretty much me — but in very different kinds of situations. I didn’t have a problem with being compliant and going along with others as a kid. If anything, I was defiant and went against what anyone and everyone told me to do (except for my love interests — they could always boss me around).

The compliance and obedience and lack of questioning happened in adulthood. And I wonder if the three car accidents, the fall off the back of the truck, and the occasional head-banging — all in my early adulthood — might have affected my prefrontal cortexes to the point where I would just compliantly do whatever my spouse told me to do.

If that’s the case — and my compliance has been neurological, rather than emotional or character-based — then that’s a huge relief. And it means I can do something about it. For close to 20 years, I pretty much went along with whatever my spouse told me to do. It wasn’t so pronounced in the beginning, but then it got worse.

I had a car accident in 1997 where I was rear-ended, and I couldn’t read for several days. The letters swam on the page, and I couldn’t concentrate on anything. I recall feeling weird and shaky and being a bit “off” for some time after the car accident, and I wonder if maybe that affected my prefrontal cortexes and made me more compliant. People around me thought my spouse was bullying me, that they were being abusive and domineering, but honestly, I just went along… because it was the only thing that seemed useful to me.

I need to check around to find out more.

Anyway, that’s just one part of the book that I’m really enjoying. There are a number of different places where I recognize myself — the hesitance, the inability to get things done, the self-regulation problems… I’m not sure I want to think about them in terms of learning disabilities, but rather brain capabilities. And they apply to all kinds of situations, not just educational ones. That’s something that the author talks about a lot — how addressing these learning disabilities will improve functioning in the rest of life.

What Barbara Arrowsmith-Young has done is remarkable. She’s really figured it out — and from the inside, not from the outside. It’s amazing. I’m a huge fan, and if I were religious, I’d recommend her for sainthood. Her story is one of the reasons I got myself into neuropsych rehab, in the first place — when I read Norman Doidge’s “The Brain That Changes Itself” her story stood out for me more than any others. Because she took it on herself, and she did the work, instead of having someone else do it for her. And now she’s passing it on to others. She does public lectures. She has her Arrowsmith School. She’s written a book.

Unfortunately for me (and probably many others), the Arrowsmith School is expensive. And it’s in Canada, which is not an impossible distance from me, but still… I have to go to my job each day, I don’t have a lot of money to spend, and I’m thinking there must be another way to get this kind of help without being locked into a specific location, or paying someone to get me on track.

Again, I come back to living my life as the best recovery. Living fully and reflectively. Mindfully. Engaged. All those catchwords that basically say,

Do the best you can each and every day…

Be honest with yourself about what’s going on…

Learn from books and movies and the world around you, your experiences, your teachers and your mistakes…

Change what you can so you do better next time…

And share what you learn with others.

Absent the resources to enroll in the Arrowsmith School for months (if not years), and with the help from a handful of competent professionals, I seem to be making decent progress.

Speaking of which, I’ve got some chores to do.

Onward.

Finding my way through the country I used to recognize

Sometimes it all just goes away

Yesterday was a good day. I was riding high on the boost I got from work, and the day turned out pretty cool.

The more I think about the compliment I got at work on Friday, the more it means to me. It’s really sinking in, and I’m “letting it in” (as my spouse urges me to do). I don’t like to get into patting myself on the back too much – no sooner do I get really comfortable, than the rug gets pulled out from under me, and I have to work my way back to a place that’s good again.

Over the past two days, I’ve been looking back at the way my life has developed — how it was in the days and weeks and months and several years after my TBI in 2004… and how I’ve re-ordered it in the meantime. I have made huge progress — thanks to getting regular support from folks who don’t treat me like there’s something wrong with me (it’s important to have some of them in my life, because so many people seem to think I’m not quite “right”), as well as constant WORK.

It’s been a long, long road back, through the disaster area that was my life for so many years. Like the tsunami in Japan that devastated so many lives in cities and villages, TBI tore through my life and trashed a lot that used to be reliable.

It sounds weird to me, thinking about how devastating the damage was, relative to my injury. I had a “mild” TBI — a concussion. I wasn’t knocked out more than a second or so. I didn’t end up in the hospital, hooked up to tubes and machines. I wasn’t in a coma. I didn’t have to relearn to walk and talk. But within a few years after my fall, my life looked like the picture of Japan above.

And at the time I realized just how bad things were getting, I thought the good stuff was gone for good. I thought I was gone for good. I couldn’t imagine ever coming back.

But apparently I have.

It’s been a balancing act — making concessions here and there, and pushing forward with things that meant a lot to me. There are certain things I had to let go, and other things that have come back to me.

Three things that I’ve had to change are:

  • How quickly I do things
  • My sleep frequency and patterns
  • How I live my everyday life

One thing I can’t do anymore is the “rush” thing. It’s confusing and exhausting, and I hate it with every fiber of my being. I used to get a charge out of it — a real rush. But not anymore. Now it just screws everything up. I’ve had to slow down a lot — for me, that is. Compared to others, I’m not going that much more slowly, but for me, it feels like I’m moving at a glacially slow pace, and it makes me nuts. But I have to do it, so I do.

Another thing that I’ve had to let go of, is staying up till all hours of the night/morning and then being able to get up the next day and go to work and be fine with it. That’s gone-baby-gone. If I don’t get at least 7 hours the night before, I struggle all day. I might not feel tired, but I can definitely tell I’m impaired. It’s just not worth it to me, to get all ragged around the edges and have to push through. Adrenaline is all very well and good, but it’s no substitute for a good night’s sleep.

I also need to actively manage my life with notes and reminders. If I don’t set reminders and keep notes for myself, I lose track of a whole lot of things I need to not lose track of. It’s pretty bad — especially when I’m tired. Sometimes I “rebel” and try to wing it – and then I learn again what a bad idea that really is. Keeping notes and reminders lets me focus on what’s in front of me, without needing to keep the reminders and to-do items in the back of my mind all the time.

I have to do a lot more preparation, too, than I used to. I need to preview my days and figure out what I’m going to be doing, and how. I need to actively manage my entire day, making sure I’m doing things at the right times and in the right sequence. If I don’t, it spells trouble.

Making accommodations for how I’ve become isn’t much fun. It’s a little depressing, to tell the truth. I want things to be like they used to be. I want my brain to be like it used to be.

But that’s not going to happen. Not like I think it’s going to be, anyway.

Actually, though, the accommodations I’m making for my brain are helping me in many unexpected ways.

It’s actually good practice to take things more slowly than I did before. This is not only because of my brain, but because of the greater complexity of my life, compared to how it used to be. Ten years ago, I wasn’t juggling my own logistical issues with the intense health issues my spouse has, along with being the only wage-earner in the house. Both of us were working and earning okay money, and we were both self-sufficient. Then the sh*t hit the fan, and I now have to manage a lot more for both of us, because my spouse just isn’t as capable as they used to be.

On top of that, my job is now more managerial than before. I’m managing projects and leading teams, so I have to factor in a lot more in the course of each day — and this spans not only this country, with coworkers in multiple time zones, but also overseas with colleagues in Asia and Europe to accommodate. Work has gotten way more complicated than it was, just a decade ago, and the nature of my work has changed as well. So, going fast and rushing to completion is not an option anymore. I need to consider a lot of things, including time zones and cultural differences — and also not rush myself and others in the process.

In all of this, sleep is critical.  And my relationship to it has changed a lot. I don’t have a lot of downtime, each day, and I’m exhausted by the end of it all. It’s been that way for a long time, actually — and it got that much more acute after my last TBI. I had a lot of trouble with insomnia and sleep disturbances. Just getting myself to bed has been a challenge, over the years. But where I used to really fight it, now sleep feels like a little vacation to me, when I can just let it all go — disappear into a different world. It is the ONE escape I have, so I value it like never before. I don’t drink or smoke or eat a lot of junk food, and my vices are necessarily few and far between (they can really derail me). Sleep is the one luxury I have, I’ve realized, and since coming to that conclusion, it’s become easier for me to let it all go and get some rest.

As for my lists and reminders, they keep me organized. I’m so friggin’ organized (out of necessity) at work, that my calendar is a model for others. I spend a lot of time at work, moving dates around and trying to fit things together in a big-ass choreographed production. In fact, that’s probably the best way I can think about it — as an exercise in choreography.

Getting people dancing… moving together… and making a beautiful production out of it. It’s funny — watching dance irritates the crap out of me. Maybe it moves too fast for my brain, or it takes me too long to catch up with it. But I absolutely love still pictures of dancers in motion. The pictures of mastery in motion really inspire me — if they can do that (and how do they do that?!) then what isn’t possible for people to do?

Still pictures of dancers — especially black and white photos of modern dancers in motion — really inspire me. And my job as a project manager is to inspire people do to the equivalent in their own work, so that our projects come together in a unified performance.

And you know what’s interesting? In the process of accommodating my limitations, I’ve actually been able to extend what’s possible for me, above and beyond what I’ve done in the past. In some ways, losing my basic functionality at one level, forced me to learn to live at a completely different one.

If I hadn’t gotten hurt and gone downhill as badly as I had, would I have been forced to “bump it up” the way I have? I’m not sure. Other keys have definitely been getting the right information and also getting some support, but ultimately, it was the total unworkability of my past ways of doing things in my emerging life, that forced me to dig deeper and see what else was there.

Anyway, this post is going on way too long. The bottom line is, TBI trashed my life, but I have gotten to a point where it’s no longer a total wasteland without any hope for the future. I have a ton of hope now, and that’s for a good reason — because things are turning around in tangible, daily ways. I have something to show for all my work, and it’s good.

It’s really, really good.

Onward.

The Ultimate Compliment

I had a really great day, yesterday. I got a big boost on Friday, after a hell week of missed deadlines, scrambling to catch up, and feeling like everything was falling apart. There were some critical missed opportunities and requirements that I completely lost track of, so I had to redeem myself — to myself, and my teams, both here and overseas.

But at the end of the week, one of my coworkers, whom I respect so much — they are level-headed and kind and have a memory like a steel trap, and they do a fantastic job of managing and supporting people — paid me the ultimate compliment. After I had sent out a status report on Friday afternoon about a project launching, they wrote back to me privately and said they were really glad I was “leading the charge” on that project, because I am such a rational and level-headed project manager.

That really made my day. First, because it came from someone who is an accomplished professional who does not dispense praise lightly.  Second, because they sent it to me privately, which meant there wasn’t another agenda behind it. And perhaps most of all, because it signalled that in some truly significant ways, I have figured out how to overcome the damage of my TBI in 2004 — and indeed, the bulk of my life before that.

See, there are many thing that TBI has screwed up in my life — I get crazy tired over little things, I have intermittent troubles with things that seem easy for others (like following conversations, keeping up with things moving fast, sizing up situations in an instant, and being able to deal with bright lights, loud noises, and crowds of people). Many of the things that everybody else seems to love — going to football and basketball games, sharing meals with large groups of people, and running around like chickens with their heads cut off all weekend — those wreck me for days afterwards. As much as I’d like to do them ALL, none of them is practical for me.

But the thing that really destroyed my self-confidence, was the way TBI screwed up my ability to deal with stresses. Being rational and level-headed was not an option for me, for so many years, because I just couldn’t sort everything out and I would become a raving lunatic over it all. I’d either withdraw into my shell or start to yell and sound off. I’d throw things, slam things around, bite people’s heads off… generally act out, without being able to stop it.

And then I’d have to not only clean up my relationships with others, but I’d have to live with myself afterwards, as well.

Not easy to do. And it seemed like nothing I did could actually prevent me from flying off the handle again in the future. I would just snap — lose it — go off the deep end, sometimes over little things that I knew were not worth the emotional outburst, but could not seem to stop.

Once upon a time, I was know for my calm in the midst of the storm. I was THE person who management assigned to impossible projects that were stalled, because I could pull them out of their tailspin and get them on the right track again. In a very minor way, I was like a first responder, who could rush to the scene of an emergency — run towards the chaos, not away from it — and rescue folks who were stuck there.

After my TBI in 2004… no more. At least, that’s what I thought.

That loss was the most debilitating injury of all — that mortal wound to one of the most key and critical parts of my identity, my “interface” with the world — my level-headed rationality, my ability to stay calm and collected, no matter what sh*t was hitting the fan around me. Losing that for years and years not only cost me my job, and nearly cost me my marriage, my home, my entire life, but also my sense of who I was, the sense of being “at home in my own skin”.

I didn’t actually feel like a real person for many years. I felt like an impostor — and I didn’t have any idea who I was really. Or even who I was supposed to be impersonating.

But then last week happened. And I didn’t lose my sh*t. I kept my act together, I ate my big slice o’ humble pie, I came up with an alternate plan, and I put the wheels in motion on getting things moving in the right direction. I talked to the right people, I connected the right dots. And by the end of the week, we had made progress and were back on track.

And the person I respect most in our group at work complimented me and said they couldn’t imagine a better person to lead the charge.

Wow. Just wow. I’m still just floored by it. I get a little misty over it, too. It’s just that huge for me.

After all those years of being unable to stop the downward slide into chaos and the destruction of my self and self-confidence… getting so many little messages from my brain and biochemistry, that I was not the same person anymore, and the old “me” was nowhere to be found, no matter how hard I tried…  attempting and failing, over and over, to hold myself together and be the person I had come to know myself to be…

At last. At long, long last. I was able to make it through an impossible week, staying intact both in my mind and spirit, and in my outward appearance. Some say appearances shouldn’t matter, but in my work situation, they matter very much. It’s a trust issue. A credibility issue. Yeah, it matters.

And I delivered. I found my team had made some critical errors, and we fell short of the goal. But in the end, I got us back on track, and the next week is about keeping folks there. this can be done. I can do this. If nothing else, the leader of my team believes in me unconditionally, and that’s more than I ever dared to hope for.

From Victim to Survivor… to Human

… or maybe we become something MORE.

I’m reading a paper written in 2010 by a sociology student called How Memory Affects Sense of Self: Stories of Traumatic Brain Injury. I haven’t gotten far, yet, but it’s pretty good. It’s a different sort of “read” than the published scientific papers I’ve been reading, and it’s interesting to see how someone well outside the field of neuropsychology or psychology or neurology, who’s just encountering TBI for the first time, experiences TBI survivors.

One of the things the author mentions is the use of the word “survivor” instead of “victim”. She talks about the folks in her study as “survivors”, because it “is more empowering and positive than ‘victim’ which sounds like something to be pitied.”

Aside from empowerment, I believe there’s an important difference between the ideas of “victim” and “survivor”. And I’ve been thinking that there’s even something beyond that, which is worth considering. I’m not sure if there’s one word for the “beyond-survivor” idea, but I still need to consider it.

These three concepts – victim, survivor, beyond-survivor – all have to do with experiencing a debilitating event. And the first two are all about the event itself. In my case, I’ll talk about TBI, although there have been a number of other debilitating events that knocked me for a loop. Job loss, relationship loss, financial catastrophes, losses of loved ones, a variety of injuries, and so on. They all set me back, and all of them victimized me in some way. And yet I went on living my life.

To me, being a Victim, is about saying, “Something really terrible has happened to me, and it’s so terrible, I have to stop living parts of my life, because the injury took it from me, or I’m way too gun-shy to put myself out there again. I’m safer inside, where my world is smaller, but I feel safer. And f*ck anyone who tries to pull me out of my shell. This injury is permanent, and I have to manage its danger for the rest of my life.

Lord knows, I’ve been there. Right after I got hurt in 2004, I didn’t know why things were so screwed up, but I knew they were. And I was living unconsciously as a Victim, building my life around all the problems I was having, without a really clear view of what those problems were. I had no idea how to fix them. I didn’t even realize the nature of them, or understand that a lot of them could be fixed.  I was living as a Victim. Just half a life — if that.

Being a Victim is about putting the injury at the center of your life, and living your life around it. We can easily make ourselves into Victims, by holding ourselves back from living to the fullest, because of how we think about the injury, how we think about ourselves, or what we believe is possible after the injury has passed. Being a Victim, to me, is about letting an injury define you and limit you, so that you are living less of a life than you otherwise could.

In some cases, the injury is so severe, it’s impossible to NOT be victimized by it.

And yet, that’s where being a Survivor comes in. A Survivor, in my mind, is someone who says, “Yes, that injury happened, and yes, it truly sucked more than words can say. It beat the stuffing out of me and almost took me out… but it didn’t win. I’m going to live my life, no matter what.

After I got a clue about my TBI (and all the others I’d had before), and I realized that I could change things, I started living as a Survivor. I was someone who knew that something terrible had happened to me, and I had really taken a hit from it. But even if I wasn’t living as large as I wanted to, I was still moving towards positive changes, still enlarging my life, still building my capabilities, still working each day to be better than before.

TBI still factored into my life, yet it wasn’t at the center. It was a major player in my experience, and I couldn’t afford to forget it. I still can’t afford to forget certain things and factor them in — like getting enough sleep, managing fatigue, keeping lists to keep myself on track, and remembering that the “crazy” going on in my head isn’t necessarily going to be there tomorrow, if I just get enough sleep tonight and come back to my problems with a fresh view.

Over the past year or so, something new has come up – something beyond “Survivor”, which is actually about just being Human. The thing about TBI, especially, is that it doesn’t always necessarily have to be debilitating. Its effects may be permanent in some ways, and there may be continuous challenges (and yes, problems) you continue to have as a result of it, but over time we can build up skills and abilities and find a new resilience that adds TBI to the overall “mix” of our humanity.

When you get to the place of being able to live your life more or less smoothly, with some bumps in the road that are more speed bumps than cliffs leading down to the abyss, and developing the ability to recover from those speed bumps in a matter of weeks, even days or hours, then I believe you’re past the point of being a Survivor, and on to the business of being Human.

Looking around, it’s impossible to know what challenges everyone is dealing with. Hidden disabilities (or well-concealed challenges) are a part of everyone’s life. TBI is no exception. Yes, it’s different. Yes, it’s not like other challenges. Yes, it has a host of problems that come along with it. But ultimately, it can become part of the fabric of our lives, part of who we are and how we are that doesn’t have to just stop us, but also make us different, unique, and cause us to develop strengths we otherwise wouldn’t have bothered to develop.

That’s pretty much where I am now. I quit thinking about myself as a Victim, years ago. And I don’t really think about myself as a Survivor anymore, either. I’m something else. Yes, I know TBI is an issue with me. How could I forget? But that’s not all I am. There’s more to the story. And in a strange way, TBI helps me find out what that “more” is.

Well, enough talk. The day is waiting.

Onward.

Funny again

It’s good to be back

I haven’t been funny in a long time. It’s been nearly ten years, in fact.

I used to be funny – cracking jokes and keeping the mood light, when things got too heavy. I brought that to every social situation, helping people see the humor in impossible situations, and helping everyone keep things in perspective.

Every since high school, when I started connecting with people around me, I could make people laugh. And they loved that. I was welcome in so many circles, precisely because I could make them laugh. And in many ways, how much I could get people laughing was a measure of how well I was connecting with the people around me. If I was on the “outs”, I couldn’t convey my unique sense of humor to others. But if I was connected with the people I was with, I could make them laugh.

It’s how I coped, it’s how I got through tough times. And I shared it with everyone. It was good.

After my fall in 2004, however, nothing was funny anymore. It was the strangest thing. All of a sudden, I couldn’t see the humor in anything, and I certainly had no interest in making anyone around me laugh. If someone tried to make me laugh, it was a toss-up if they’d succeed. A lot of times, they just infuriated me.

Over the past few years, I’ve been getting funnier again. At my last job, people laughed when I was around, but a lot of the time, they were laughing AT me, because we weren’t on the same wavelength, and they really truly thought I was weird. That was a result of differences in experience and orientation, I’m convinced. We had such different outlooks and life experiences, they just couldn’t relate to me, or believe half the things I said and did. So they laughed at me.

Fortunately, I didn’t take it all that seriously. After the first few months, I got used to it and was just glad that at least they weren’t total assholes to me.

But in this job, I’m actually making other people laugh. On my terms. Over things we all see and experience in common. That tells me that not only am I in synch with folks there, but I’m really, truly getting better — in my life and my brain. I’m actually funny. I’m cracking jokes that people “get”. I’m making sour-faced individuals laugh out loud — both in person and via email and IM. And over the phone.

It’s good to be able to do this again. It’s such a relief — it makes everything easier. And it’s not only something I do. It’s also something I AM. My sense of self has long been associated with my sense of humor. If I could make people laugh, I knew I was going to be okay. I knew the situations I was in were going to be okay. And like being able to read as much as I wanted, whenever I wanted, it was a marker about how “okay” I was — if I was the person I really, truly meant to be… if I was the person I wanted to be.

It’s been pretty grueling, going without so much of what used to make my life worth living. But gradually, it’s been coming back. Holy crap. It’s coming back. I’ve been testing it out over the past months, and yeah. It’s back.

One of the really good results of all this win-loss-win process, is that now that “gone” things are coming back, I appreciate them all the more. And I have a better understanding of their place in my life. Not being able to read before, makes me extra appreciative of being able to do it now. And being able to create and enjoy humor again, makes me realize just how valuable it was to me before — and it also makes me appreciate just how connected I actually had been to my peers, when I was younger. I always thought of myself as an outsider who wasn’t welcome, but in fact, I was someone who literally fit in with every crowd, in one way or another, and humor made that possible.

For decades, I thought of myself as an outsider who never fit in anywhere, but that was actually in accurate. I did fit in. I just didn’t realize it. And I missed out on the chance to have that experience for so many, many years. Why and how that happened, is another story — and it’s a mix of both the way I was brought up and the injuries that messed up my thinking and experience for so much of my life. But whatever the source, I really did miss out on so much…

Oh… I’m starting to get a little teary-eyed. I’m tired, and when I’m as worn out as I am, I’m more emotional. That will never do. I’ve got a long day ahead of me, and I don’t want to start out by getting emotionally overwrought. Or start out crying. That gives me a splitting headache and throws me off. I’m just not 100% after I cry, for some reason. So, I’m going to stop thinking about this right now and get my mind off it.

Bottom line is, things that I thought were gone for good… aren’t. It’s taken a long time for some of them to get back, and I still have a ways to go to restore some of the others. Maybe those things will come back, maybe they won’t.

But whatever does come back, I can appreciate it all the more.

That’s for sure.

Onward.

One thing they never tell me about TBI – but they should

WTF is going on in there?

I had another irritating session with my neuropsych on Thursday. We’ve changed the day of the week we meet, and now… instead of meeting early enough in the week for me to be my normal self, I show up at their office like a raving maniac, in a fine style they have rarely seen.

These days things are different for me, because I’m pushing up against the envelope of my comfort zone at work… and I am tired. So tired. I’m like a friggin’ lunatic, by the time I get to my session. My neuropsych can say one thing — one thing — to me, and it sets me off. I’ve got this hair-trigger temperament, by Thursday night, and that’s usually about the time when I realize how screwed I am, how little I’ve accomplished that I needed to get done, and I’m starting to panic about the next day.

My neuropsych has never seen me this way, so maybe this is for the best. They seem to think that I have this even-keel, mellow personality that’s all thoughtful ‘n’ shit… Like nothing can get me riled, I’m unflappable, and I’m in command of my inner state at all times. Well, let me tell you, by Thursday night, if I’ve had a crazy week, all bets are off. And I’m ready to rumble.

We’ve “gone ’round” a few times, now. This week and last. This individual jumps into my train of thought, trying to “correct” me, and I’m seriously not feeling it. I’ve got no patience, I’ve got no open-mindedness, I’ve got no extra cycles to put up with B.S. And the other thing is that my neuropsych is tired, too, so they’ve probably got their own issues going on.

Especially when I show up at their office, having trouble with my excellent life, when — seriously dude — I should be fine. But I’m not.

No. I’m not.

Because I’m not myself. I’m someone else. And while I should be fine — with a good job, a house, a long-term marriage, and a couple of cars in the driveway — I’m not. It’s not like I’ve had half my brain removed, or I struggle with constant seizures. It’s not like I was ever in a coma, or I had a spike sticking out of my head. I never had to have part of my skull removed to relieve the pressure from an impact.

I’ve just had a bunch of mild TBIs — concussions — with little or very brief loss of consciousness. I “should” be fine. But I’m not.

And that’s the thing nobody ever tells me about mild TBI — how it’s the gift that keeps on giving. How a simple fall down some stairs can send me down a weird, dark pathway into a forest with patchy moonlight filtering through the trees. How it messes up my head in very unique ways that are pretty much hidden to me, until I bump up against a situation that “should” be easy for me. But isn’t.

To me, years after I started down this path of actively recovering from all my brain injuries (9 “mild” ones, by my count — probably more), what’s clearer to me than ever before, is how TBI just never quits. It sets things in motion that are invisible and disruptive, and if you aren’t vigilant and if you don’t develop strategies for dealing with all of it, your condition becomes chronic and worsens over time. The simplest things that should be so clear, confuse you. You don’t recognize yourself. You’re “not quite right” in the eyes of people who knew you before. And it can be well nigh impossible to figure out what the hell everybody is so upset about — because from your point of view, everything seems fine. It all seems fine.

TBI never quits. That is as true for Mild TBI as it is for any of the others — perhaps even moreso for Mild TBI. The changes that take place in the brain affect the mind, the body, and the way the two work together. And over the long term, these changes keep happening. And with mTBI, the issues can be so irregular and “spotty”, and you can be so busy just living your life, that you don’t see the warning signs — until it’s too late.

And you’re in hot water again.

What nobody ever seems to mention, is that mild TBI can become a chronic condition that progresses over the course of your life. It affects every aspect of your being, and unless you can figure out that that’s actually happening, and learn to manage it, the long-term prognosis can be sketchy. Even, well… bad.

I don’t know why nobody ever talks about this — at least, they don’t talk about it within my earshot. Traumatic brain injury symptoms often clear for people. But for some, they become chronic… they don’t go away…. they morph into something else over time… and something else… and something else…. and they can turn you into a person you hardly recognize and don’t exactly understand — in place of the person you thought you were.

Maybe people do discuss it, but it never trickles down into the general populace.

Or maybe it’s that I’m so busy living my life, and I’m so busy trying to figure things out, that I don’t have time to seek out the inner secrets and latest cutting-edge research about TBI recovery. My neuropsych has certainly not discussed this with me at length — probably because I get really upset and bent out of shape when they start to talk about TBI and how my brain has been affected by it. Strangely, although I can write about it freely here, I have a hell of a time discussing it with my neuropsych. It freaks me out. Way too much. So, we don’t talk about that much — just about how I can build the skills to better live my life.

That’s actually working out. It’s a good strategy. I have this body of skills and approaches built up. At the same time, though, it feels like they’re built around a shell of a person — I’m the outside appearance of myself, but inside, it’s hollow and dark and empty, and I don’t know who’s there anymore.

I try not to worry about it. I’ve got to get on with my life and live it, the best I know how. But when I’m tired… and when I’m tired of being tired and not knowing who the hell I am… this comes up, front and center, and it works on my mind like nothing else.

Of all the things about mild TBI, I’d have to say, the most damaging part is having lost my sense of who I am, what I stand for, and where I fit in the world. It’s a casualty of the injury, and nobody seems willing to address it — as though ignoring it or “working past it” is going to solve things.

Oh hell, I’m just going to write a book about it. For TBI survivors, their loved ones, and for the caregivers who know so much — and yet so little. Losing your identity and having to reconstruct it again, despite being “fine” in the eyes of everyone else, is a problem. It takes too many of us down. It’s an issue. It’s a problem. And I don’t feel like sitting around bitching about it, anymore. It’s time to do something about it.

In fact.

Onward.

Letting it go – for good reason

I missed the original date, but maybe they have an “encore” event this month?

I had a lousy meeting with my neuropsych on Friday evening. First problem was, it was Friday evening after a very long week. I was not in a good space, and neither was my neuropsych, apparently. They kept wanting to talk about diagnostic labs and bloodwork and tests and all that stuff that goes along with figuring out levels of vitamins and what-not.

As it turns out, I have been running a low-level Vitamin D deficiency for about five years. I am sure it has not helped my cognition in the least. But my doctor told me they weren’t worried about it, because they figured it would sort itself out. I was supposed to be supplementing Vitamin D — which I often forgot or just decided not to do. I resolved — about a million times — to spend more time outside and get my Vitamin D through natural sunlight. But then I didn’t do it, and my D levels stayed low — to the point of danger.

The weird thing is, my PCP didn’t seem to think much of it. Despite the fact that Vitamin D levels directly affect cognition, and you can end up feeling foggy and dull as a result. I’ve felt that way for a long, long time — but since I started aggressively loading up on Vitamin D, and my levels have improved, I don’t feel nearly as foggy as I used to. I’m now within the acceptable range (in the lower 33%, which I’d like to raise), and I feel more clear and “with it” than I’ve felt in a long time.

And that pisses me off, that my PCP just kind of blew off my Vitamin D levels and was willing to wait a year, to see if they were better. It’s like my doctor waits for me to report symptoms, but to me, everything is a tangled mass of experiences and feelings, and on any given day I can feel both fantastic and terrible, all at the same time, so making sense of any of it is sorta kinda impossible in my jumbled-up head. So, I take a stab at things, and if I get lucky, it works out. If it doesn’t work out, I try again — and again — and again — till I get where I’m going.

Ultimately, it pays off, but it’s a long time getting there, sometimes.

Anyway, I got pretty angry that my neuropsych kept talking about healthcare and choices and things to do to get proper care. I couldn’t see what it had to do with anything that mattered at the time, and it made me angry that they were going on and on about the best process to follow to get medical help. Now, I realize that they were kind of pissed off that my doctor had done nothing about my Vitamin D levels — that they hadn’t kept an eye on it and raised a flag earlier.

Part of the responsibility is mine. I didn’t think that Vitamin D was that big of a deal, and I figured I could just go outside regularly and get the light I needed to synthesize. Untrue. I don’t go outside nearly enough (as is the case now, as I sit at my desk in my study, looking at the outside, rather than sitting on the back deck, working “in the wild”). I didn’t realize that Vitamin D affected your cognition and mental functioning. If I’d known that before, I’d have done more about it.

But that’s water under the bridge.

Looking back, I realize that I spent a lot of time being really angry with my neuropsych. I didn’t tell them that, but I was upset to the point of wanting to not go to them anymore. That happens, every now and then. I don’t “get” what they’re trying to communicate to me, I feel like they’re talking to me like I’m an idiot, and I get resentful and resistant. And I want to just drop it and just live my life without having to work at it.

But that generally doesn’t go that well, and if I walk away from my neuropsych, I walk away from one of the very few people who understands what’s going on with me — and is equipped to talk some sense into me. Going it alone has a way of backfiring on me. I have few real friends. I’m on friendly terms with a lot of people, and I feel pretty connected with other people, but I have no immediate support group I can turn to — other than my neuropsych. I also have a therapist I see — but that’s more to check in and make sure I’m taking care of myself and to build some self-preservation skills in the face of dealing with my spouse’s various illnesses (both physical and mental). Other than those two, I’m on my own.

Anyway, yesterday I decided not to keep harboring that anger, and I just let it go about my neuropsych being a pain. I realize now that what made me angry, was 1) being really tired after a long week, and 2) not fully understanding what they were talking about, and why. Also, I think my neuropsych was tired after a long week, and they were in rough shape, as well. I’m the “easiest” patient they have to work with, I believe. There are tons of other things going on for them, and I’m just one face in a crowd of many — many of whom need a lot more support and assistance than I.

This is how it often is. When I’m really tweaked and upset, it’s best that I just get some sleep, take a long walk, and let it all settle. Then I can get my balance again, get my bearings, and enjoy the life I have, instead of stewing about the life I’m imagining.

Weather is nice today. I should be able to get that last lawn-mowing of the season done, later this afternoon when the grass is more dry. I may just go out for a long ride, too. I hear the colors are getting nice up north.