This is not a drill – maybe

My last remaining grandparent may be dying. They’re over 100 years old, and I am making the daylong trip to my family several states away, to hopefully see them before they pass. They’ve been close to the edge several times over the past few months, but this time seems different. I hope we get there in time.

It’s always a struggle, figuring out what the right thing to do is – we can’t just pick up and go whenever something seems amiss. Because things seem amiss pretty frequently, and then they level out. It’s not a short trip to my family. And I have limited energy and time. Also, if I don’t work, I don’t get paid, so taking time off is very, very expensive.

But this trip looks like it’s going to be necessary. This might be “it” for my grandparent, and I would like to get there in time to say good-bye and “thank you” for everything.

I really owe a tremendous debt to them – they set such a strong example about how to live a good life, and they overcame so many huge odds to really have a life worth living. If anyone has showed me how to stand up straight in a crisis and hold your own, how to be compassionate towards others who are different from you, and how to just love and accept people and the world for who they are (while never giving up hope that things could be better), it’s them. They also taught me the importance of staying curious, staying interested, and always learning-learning-learning about the world and the way life works.

In fact, I think it’s safe to say that I have them to thank for my being here. Obviously, if they had not had kids, then I would not have come into the world. But beyond just making my birth possible, they showed me what it means to persevere and prevail and correct your poor choices whenever you can. I never wanted to disappoint them — even though I often did. So, that pushed me to really step up and challenge myself in so many different ways.

I’ll be leaving in about 4 hours – I have a lot to get together before I leave. I have to check in with work to let them know what’s happening and to get coverage for my projects, I have to pack clothing, get the car inspected (in addition to forgetting to pay my mortgage, I forgot to get both cars inspected, this past summer, so I’ve been driving around with not one but two overdue inspection stickers), run to the bank, get some food for the road, and take care of some odds and ends that are due in the next couple of days. I don’t know how long I’m going to be away – it could be a few days, or it could be a week, but I’ve got clearance from work to stay as long as I need to.

I’m putting my list together now, to see what all I need to do. I’ve been tired lately, and I’m really distracted, so my sequencing is off this morning. I’m doing things backwards, forgetting to do important things (like make my coffee in the proper order), and I have to triple-check everything. Like packing clothes. If I stay longer than a few days, I was thinking I will need all my work clothes with me, and I was going to load them into a garment bag to take with me. Untrue. If I stay, I will be at my parents’ house, and I will not need work clothing at all. I just need one set of dress clothes, in case the funeral happens. I will need casual clothes for the everyday — just to get around and look halfway respectable.

The main thing is taking the right computers with me — my personal laptop as well as my work laptop. Also, I need to remember my camera. I don’t have a smartphone, and my spouse loves to take pictures. And my sunglasses. I can’t forget them. I’ll never make it without.  And taking all the crap out of the traveling car, rearranging everything in it for the ride. And packing an extra set of sheets, in case the people we’re staying with use scented laundry detergent we are allergic to. And putting the mail on hold. Just getting everything together.

I have my main list of things to do. Not getting too granular with it is a big change for me. I used to make long lists of everything that could possibly be covered, and I would get so caught up in making the lists, that I would lose track of where I was and have to abandon my plans half-way through. I would also forget important things and wear myself out, trying to juggle everything that didn’t even need juggling.

Now things are very different, and I’m feeling pretty calm and systematic about my planning. I am tired, I know, and my memory and attention are a little sub-par, these days. But I’m taking steps to offset that, using the tools I have to keep steady and stay on track.

I really hate these kinds of situations. I have been through a lot of them in the past with my spouse. There’s been a lot of illness and struggle in both sides of our family over the 24 years we’ve been together, and we’ve spent more time than I care to think about in hospitals, waiting to hear news.

A part of me is selfishly feeling like it’s not fair that I have to leave my cushy new job situation, while it has that “new car smell” to go participate in unavoidable grief and sadness. I am finally getting into a groove at work, and now this happens. I have had a really challenging last few weeks, and no sooner do I feel like I’m settling in and getting things sorted, than I have to pick up and dash off to the kind of drama that I just hate. I stay away from my family because of all the drama. It’s just too much, and I’m feeling too tired to really deal well with this. Times like these are when I can get hurt.

Again.

But like I said, that’s me being selfish and not seeing the bigger picture. We need to extend ourselves for others and step up. That’s what makes our lives worthwhile and more than just an exercise in self-serving pettiness. That’s what my grandparent would have done.

My head is in a whirl, right now. I don’t like death, and I don’t like racing the clock. But here we are…

So, onward.

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.

A fresh new day

Get out there and make the most of it!

I’m feeling pretty good, this morning. I have the whole weekend ahead of me, and I feel much more focused than I have in a long time. I think the move to the new location at work is going to really help me. I will be close enough to home, that I can come home over lunchtime and take a quick nap. I think that’s going to make all the difference in the world. That, and not having to deal with long drives down the freeway in bad weather. This past week has been very tough, because the weather has been bad, and the traffic going to and from work has been pretty challenging.

In less than a week, that’s all going away, and I can live my life again. For the first time, really. I’ve never worked this close to home before, and it’s about damn’ time.

Also, in another couple of weeks, I can quit working from 7 a.m. till 8 p.m. (with intermittent breaks in between to do things like, oh, take a shower, drive to work, and grab a quick bite to eat). I’ve been working double-duty, fixing stuff that got broken, during my last couple of projects, making sure that people know what to do — and are doing it. Managing projects where cannot manage their own time and workload is no friggin’ fun, and that’s how it’s turned out to be.

Here, I thought that I could rely on others to do their jobs and finish up in good order. Untrue. They apparently only do what they’re hounded to do, and while I can do the “hound thing” (arf, arf, arf), it’s not my idea of a fun time.

Plus, the farther I get from the old world, where I was so totally stressed out about everything in my life, and the more I relax and come to my senses, the more I realize that I’m really not all that keen on working in technology or working for companies that produce stuff that people want, but do not need. There’s something about working for a company that provides a needed service (rather than luxury/consumer products and services) which really gets me going in the morning.

I used to have a job like that — I used to work in an industry like that. It was an indispensable line of work, and what we did was desperately needed — essential — for people’s lives.

Not so, nowadays. I’m managing projects that are all about stuff that people find cool and interesting, but isn’t critical to everyday life. And it feels like a bit of a waste, to be expending so much time and energy on frantically selling stuff that people could really live without.

At the same time, I’ve got to count my blessings. This job — once I get the hang of it — will be ultra-cushy, to be sure. It’s not rocket science, and since we’re not exactly dashing into danger and saving anyone from a fiery building, there’s less of the intense pressure I was under at my past employers. In my past “professional incarnation”, I worked for companies that actually kept people alive and made it possible for them to live longer, more productive lives. And there was no margin for error. Now, there’s plenty of margin for error.

People kind of wonder why I get so tweaked about things not going perfectly. It’s probably because of my past experience, where everything mattered so intensely. I just got used to working that way.

Nowadays, I can take the pressure off and relax a bit.

Although… that comes with its hazards. Now that I’m not all stressed out, I have the bandwidth to notice how I’m really doing. I’m not running from tyrannosaurus rexes anymore, so I have some time and energy to check in and notice how I’m doing. And in all honesty, it was easier in some ways, when I was stressed.

See, the thing is, all the stress and pressure and discomfort kept me “ON” — engaged, focused, and it kept my mind off the general sense of my life, which was not always that stellar. I didn’t have the time or energy to focus on how I really felt in my own skin, or how my overall system was operating. I had to just focus on putting one foot in front of the other and keeping a fine balance to everything, because I never knew if I was coming or going, there was so much chaos going on inside my head and body all the time, and I couldn’t afford to lose focus… or else.

All that chaos was a bit of a blessing, because it kept my mind off all the confusion, the frustration, the pain, the discomfort… all of it.

Now that things are calming down, I’m noticing the things I didn’t have time to think about before. Like the fact that I’m approaching 50, with a spouse who is basically disabled and is a number of years older than me, and we have no retirement fund. Nothing. Nada. Zilch. We need to make some significant house repairs, and we are just now getting close to being able to pay someone to do the work. I’m working, yes, but I have no disability insurance, and without a safety net, we’re living kind of close to the bone.

We’re getting by, and we do have a pretty sweet life, all in all, and we have a lot to be grateful for, yet there are significant ways we’re at risk, and it’s no fun thinking about “what might happen”.

I’ve been so busy, just keeping it together, that I haven’t dwelled on that very much. I’ve been too busy just keeping myself upright and functional.  I haven’t focused on the pain I’m in, I haven’t had time to deal with headaches, other than getting acupuncture and stretching and not eating a lot of crap. I haven’t had time to focus on the weird sensations in my face, the twitching and jumping. It’s all nerves, most likely, so I just keep going. If it weren’t nerves – if it were something else – I’m not sure I’d have the time and energy and resources to really explore all my options.

Now, though, things feel like they’re closing in on me, because I have time to think about them – and I’m not liking what I’m seeing. Or feeling. It’s depressing.

So, screw all that, I’m going to get myself busy again. On things that I want to be busy on — writing books, getting out in the day to have my walks and explorations, taking care of chores and odd jobs (like getting my cars inspected — I overlooked the fact that they were both due for their stickers, two months ago — just got busy, I guess). And just live my life. Get into my life, see what’s there, and use this fine new day for what it’s worth.

There is so much screwed up in my life right now, so much that feels weird and strange and trying… It’s been that way for a long time, but I’ve been so stressed out, I haven’t had the bandwidth to really address any of it. Now I’ve got the time. Maybe I’ll be able to address some of it. Maybe I’ll just end up keeping busy instead, because trying to hang onto the horns of the bucking bull that is my life, is a losing proposition.

We all have our challenges, we all have sh*t we need to deal with. I’m no exception.

Now I need to learn to handle the good times as well as I’ve learned to handle the bad.

And with that, it’s time for a walk. It’s turning out to be a beautiful day.

 

 

 

Oh, hell – I’m just posting it all

Restoring your Sense Of Self after a traumatic brain injury is no small feat.

And you need all the help and support you can get.

So, while I work on my book, I’m going to be posting chapters to this blog, and making them available to people for free here – at TBI S.O.S.

Life is tough enough after TBI, to have to fork out dough on top of it.

I’m going to be making the work available in print and ebook later on, when it’s done. But this way, I can keep up the momentum, and also get the words out there. Somehow, what I write sometimes makes more sense to me — and I get valuable distance from it — when I see it online.

Strange. I used to be such a solitary. Still am, really. I just got hooked on the whole online publishing experience, I guess.

Later on, for those who want to support this blog and my work here, you’ll be able to buy print and ebook versions. But for now, I’ll just post what I’m writing, and let that speak for itself.

Discovering a new identity after brain injury – or creating one? – Part II

I decide who I am

I had to run out the door to work this morning, before I could “finish my thoughts” on Discovering a new identity after brain injury – or creating one?, so now I’ll continue…

So, after my fall in 2004, something happened to my old sense of being able to reinvent myself at will. I lost my flexibility. I lost my fluidity. I lost my “old” Self — the Self who knew there was more to me than I knew at the present time.

That change didn’t happen immediately. It was a gradual process… a slow erosion of who I was and who I knew myself to be… as I had one instance after another of feeling and thinking and behaving not only different from how I wanted to feel and think and behave, but how I intended and expected my Self to be.  Listening to myself fly off the handle over little things… Watching myself get so belligerent and argumentative over stuff that never used to bother me… Seeing my whole way of relating to others fall apart — getting all jumpy and antsy and aggressive — and never being able to really predict how I would be, on any given day…

One experience after another happened, to make me doubt and question who I was, and take me farther and farther from my Self. Some people turn to religion or spirituality to find their way back themselves again. For me, any religious or spiritual feeling was gone, baby, gone. I had always felt a close connection to God, Spirit, Creator, Higher Power (whatever you may call it), but after my fall in 2004, I just couldn’t be bothered. People around me would want to pray and meditate, and all I could do, was roll my eyes and get irritated.

That all takes a toll. Especially when your behavior is nothing like what you want it to be. And how I was, did not resemble me in the least. I found myself doing and saying things I regretted even before I started — but I was helpless to stop it. The worst part was, I didn’t feel comfortable talking to anyone about it, because it was so terribly painful for me, and I would start to cry, when I thought or talked about it. I was deeply, deeply ashamed of my behavior. I knew better. Why couldn’t I do better?

I just pulled away from people, over several years after my fall in 2004. Only after I started regularly seeing a neuropsychologist in 2008, did things start to turn around. They got me reoriented in the right direction, and after a few years, I started to be responsible again. I got my act together, bit by bit, and things really improved for me, all across the board.

But there was still a missing piece of it all, a missing part of me that made me feel like a stranger in my own skin — uncomfortable with myself, not feeling like I recognized myself. I tried discussing it with my neuropsych, but they didn’t seem to realize the dept of my distress — maybe because I kept it wrapped so tightly under this veneer of capability, that they never could have known how wrecked I felt inside.

In any case, they never directly addressed my dissolving sense of Self with me. They were more focused on how I perceived myself in relation to myself and to others. Maybe they knew all the time that I had to reconstruct a sense of who I was, in order to fully recover. Or maybe they just didn’t seem to think my identity crisis was that big of a deal.

In any case, the net result of it all, was that I ended up spending a whole lot of time coming up with ways that I could make sense of my own life in my own way. Keeping this blog has been a big piece of it, as well as finding new things that got me interested in my life again — things that I felt were brand new discoveries. Even if I had “discovered” them before (sometimes several times), the fact that they felt new to me, kept me going. It kept me curious. It kept me looking and searching. It kept me engaged in my life.

And it gave me the feeling that I wasn’t just rediscovering my old self, but I was actively creating a new one. As I reduced the stress in my life, I found myself able to enjoy things again. I didn’t worry about whether those things “mattered” or not — or whether I was really fully appreciating what they were about. I didn’t care if I didn’t follow everything in the scientific papers I was reading. That wasn’t the point. The point was about reading something that intrigued me — even if I didn’t actually understand 100% what was being discussed.

I also found myself able to learn new things, albeit slowly. I taught myself to juggle, and that gave me a huge confidence boost. I figured, if other people could learn it, why not me?

I got involved in different projects and different undertakings, and I even did a live presentation that was broadcast to a special interest group. I never went back to the group after that. The point was that I did my presentation to begin with. I made art. I took photos. I did volunteer work. I created picture books and animations about topics that intrigued me. Just for the sake of doing it.

And all along, when I felt like I was in uncharted waters or things were unfamiliar to me, I treated it all like a learning experience. A series of teachable moments. A time to not only discover parts of myself I had never noticed before, but to create a new understanding of myself that was bigger than the rigid ideas I had about who I was and what was possible for me and my life.

At some point, I realized that the more time I spent trying to recreate the lost parts of myself from before, the less time I was spending on creating new experiences and discovering new parts of myself. And I also realized that the more I focused on the new and interesting developments in my life, the less I was bothered by the troublesome new parts.

When I was totally focused on something fascinating in front of me, the light and sound sensitivities didn’t make me nuts. When I was caught up in doing something that mesmerized me, it brought my brain to life, and I felt like I could think again. When I was actively learning new things, I had a sense of hope that drowned out all the bad feelings from meltdowns and blowups that really wrecked my peace of mind.

I didn’t just want to restore what I’d lost — like filling up divots in a golf course. I wanted to go explore a whole new part of the countryside, far away from those mucked up 18 holes.

In a very real way, my restored Sense of Self is a result of things I did to recreate it — to have a new and bigger understanding of myself in the context of my life. Over the years, I’ve developed some really helpful techniques to help me just stay chill and calm, so I can pay attention to the things that really matter in my life — the things that I can control and manage. I find that as long as I take care of myself and I keep showing up, my recovery progresses. There are always set-backs, but eventually things come together, and I’m stronger than before. And I find new ways to redefine myself and my place in the world.

So, I’m going to stop writing now and go read some more works about identity after TBI. It turns out, there’s a ton of stuff that’s been written, and some of it is very good. I find people talking about people “rediscovering” their identity after TBI, regaining a sense of who they are, and so forth. For me, creating a bigger and more durable identity is so important — it’s not just about discovery, it’s about actively taking a role in re-making yourself in the ways you choose.

I’ve always done this. That’s what I need to remember. Ever since I was a little kid, and I got moved around a lot, shuffled from one school to the next, from one peer group to the next. I’ve always had to adjust and redefine myself. And adapting after TBI is no exception to that rule. The stakes are higher now, and I have no real safety net, so it’s even more important that I take responsibility for my Sense Of Self.

I hope what I’ve learned can help others, as well.

We’ll see…

 

Discovering a new identity after brain injury – or creating one?

Works for me.

So, I’m working on my book TBI S.O.S. – an expansion of my site section TBI SoS – Restoring a Sense of Self after Traumatic Brain Injury, and I’m doing a lot of reading about sense of self, identity after brain injury, and what it means to be “yourself”. There’s a ton of interesting material out there, much of it from experts and researchers, who either know, work with, or interview(ed) brain injury survivors.

It’s been about a couple of weeks, since I started working on the book in my spare time, and I feel like I’ve made some really great progress. It’s truly a burning question with me – one that cuts to the very core of who I am and how I see myself in the world. It’s also at the center of many other people’s lives, as TBI or ABI completely reconstructs the way they think, move, talk, experience the world, and express themselves… and subsequently affects how they experience themselves.

Usually, when I think of people “losing” their identity to traumatic brain injury, I think that it needs to be someone who’s lost key and critical pieces of their abilities — moderate or severe brain injury survivors only. But in my own experience with all those mild TBIs, I got completely lost and feel like I had been cut loos from any semblance of reality for years and years.

It didn’t take a catastrophic injury to cause a catastrophic outcome. And I think maybe that’s one of the things that throws people off with TBI — if you “look fine” and people can’t detect a difference to you just from looking at you and interacting with you on a superficial level, then you must be okay. Nothing going on here, folks.

Right?

Wrong.

And then we get left out in the cold, cut off from everything — including ourselves.

Especially with brain injury. TBI, stroke, aneurism, infection… anything that screws up the brain can do it to you. We TBI survivors don’t have the market cornered on losing our identity.

But for the purposes of this book, I can only speak about my own personal perspective, which is all about mild TBI.

I think mild TBI is in some way a “different animal” than other types of brain injury, precisely because it appears so “mild” and it’s so hard to detect and track. But the impact can be hugely disruptive. And getting back to some sense of who you are — who you ARE, and can be — doesn’t seem to be very well mapped.

My hope is that this book will serve as a sort of road map for others — or at the very least spark some ideas about what they could do, themselves, to get back on track. In my case, after years and years of not having a clear sense of who I am and what I’m about — feeling like I was losing myself slowly but surely, and having no sense of who I WAS anymore — that’s changed dramatically. I feel like my “old self” again, in many respects (others I’m still working on), and I know how that happened.

I did specific things for myself and in my life that made this possible. A number of things I did were related to what my neuropsych was discussing with me each week. And a number of the things went directly against what my neuropsych encouraged me to explore and consider. I also threw some things in the mix that they never thought of — or that they specifically told me not to do. Some of it, they said, was too simplistic, and didn’t reflect my actual functioning abilities. I did those simple things anyway. Even my neuropsych could apparently not see the extent to which I was struggling and how much it was all affecting me, so I had to do some super simple things for myself that gave me tremendous relief.

I sorta kinda took my recovery into my own hands, and I used everything I learned — including some key concepts from the  Give Back Orlando TBI Self-Therapy Guide – to get myself back on track.

And this morning, right here and now, sitting at my desk, typing on my laptop which keeps stalling because it’s old and needs to be serviced, I’m really feeling familiar to myself.

Again. More than I have in many, many years.

After so many years of feeling like a stranger in my own skin, feeling like someone else had “moved in” to my head and body and heart… it’s good to be back.

In the course of looking at the past 10 years of my life, after my last TBI, and beyond into my past before that (as I sustained a number of mild TBIs / concussions over the course of my childhood and adulthood), I have to say that the thing that’s saved my butt, over and over again, has been actively recreating myself — not getting stuck in a rigid version of who I was, or was supposed to be, and really actively seeking out new sides of myself to develop. Out of curiosity. Out of a sense of adventure. Out of a need to explore. And not wanting to be boxed in.

I’ve always been pretty fluid in my life. I had to be, because so much changed around me, all the time. From kindergarten till 8th grade, I was never in the exact same class situation from one year to the next. Every year it was a different group of kids, a different school. And I moved a fair amount. I got in trouble with the law and other bad situations, here and there, and I had to relocate to make a fresh start. I’ve changed jobs and careers several times. And in the meantime, I got hit on the head, which changed my perspective dramatically.

Through it all, I didn’t lock myself into a single identity. Not really. I mean, it’s not like I was a chameleon who didn’t know who “I” was. Rather, I always knew there was more about me to develop and discover. And that saved me, time and time again.

After my fall in 2004, though, something happened. I lost that flexibility. I lost my fluidity. I lost myself. It didn’t happen immediately. It was a gradual process… a slow erosion of who I was and who I knew myself to be. One experience after another happened, to make me doubt and question who I was, and get farther and farther from myself. Some people turn to religion or spirituality to find their way back themselves again. For me, any religious or spiritual feeling was gone, baby, gone.

Well, anyway, so it goes. I just looked at the clock, and I’m running late.

More later…

>> Keep reading…

 

Staying ahead of the game

Gotta stay sharp… get a jump on the day

Learning lessons as I go… it’s no good for me to start early-early at work, where there are people around who want to talk about this, that, and the other thing. It’s better if I start my workday at home, and prepare for the day here. If I have to make early morning calls with people, it’s best that I do it from home, rather than the office. That way I’m not distracted, and I can think.

It’s hard to think at the office.

And that really threw me off on Monday, which made it a terrible day I had to recover from. I also had a blowup with my spouse on Monday night, which could have turned out badly. When I’m in a bad space, they love to goad me and push me and keep firing questions at me and demand that I pay attention to them. It’s like they can sense when I’m vulnerable and struggling, and they want to see how far they can stretch me. They just push and push and push, needling and goading and provoking me, because something in them just craves that intensity at the end of the day.

It wakes them up. It’s familiar to them, because of their childhood family history. No evening is complete without a heated argument, when they’re feeling dull and out of it. I know they love the fight for the fight’s sake, because the minute I stop dealing with them and just walk away, they stop what they’re doing. They stop the provocation, they stop the needling, they stop the questions, the pushing, the prodding. And they start bargaining to get me to come back and sit down, have some nice dinner, etc.

It’s almost like my spouse is not even there, when that happens. Something in their brain switches on, and the person they are switches off. It’s become worse, in the past years, and now (thanks to help I’m getting from a counselor and my neuropsych), I can see it for what it is — just some weird-ass neurochemical/biological impulse they have to FIGHT. If I step away or just stop the progression, it’s like magic. They turn into someone completely different.

It really does a number on me. In the aftermath of my meltdowns, my spouse is so calm. They almost seem like they just had a cigarette or a beer — they’re very relaxed. Meanwhile, I’m a friggin’ mess, I feel like crap, and I have to build back my self-confidence again. They get the upper hand. They get to recreate the dynamics of the past. And the old cycle is in place. I don’t even think they realize what they’re doing, so it’s up to me to stop it, myself.

And I stopped myself on Monday night before I got too bent out of shape. I could tell I was getting to the point where I wanted to throw something or hit something (or someone). So, I backed off. I just slammed on the brakes and walked away from the situation. When I walk away, my spouse starts to behave properly again.

So, I’ll have to start doing that, anytime I feel that “rise” starting to come up with me. I’m just walking away to let them calm down and stop provoking me.

Yesterday was better. I took my early calls at home, I got into the office after rush hour traffic, and I had a pretty productive day. It was like pulling teeth at the end of the day, but I got things done, exhaustion and all.

One thing that’s throwing me off is a new coworker who has really been annoying the crap out of me. I’m supposed to be their “buddy” and train them and bring them along in the organization, and they’re not making my job any easier. This individual has a ton of qualifications, certifications, and degrees. They were a teacher in the past, and they like to show off how much they know about ancient history and roleplaying games. They also like to get into a lot of heady discussions about intellectual things, but they don’t have a ton of depth, and some of the things I know a lot about, they’ve never even heard of.

Their overall affect is a little bit arrogant, and while they do know a lot about some things, they don’t know nearly enough to act like they own the place. Actually, their personality would be best suited to teaching middle school or high school, where they will always be ahead of their students. It’s the adults around them, they can’t keep up with.

I feel sorry for them, a little. The rest of the group is not exactly welcoming, which is what I came up against when I first started. But this individual is getting increasingly insecure and posing like they’re an expert, which is causing them to become increasingly annoying. They’re trying like crazy to show that they already know how to do everything, but they’ve only been on the job two weeks. Meanwhile, the rest of the group, who are not at all intellectuals (or don’t fancy themselves to be), are getting irritated at the apparent arrogance.

All that training, all those certifications. All the degrees… And this new person can’t deal with people. Adults, anyway.

On the other hand, seeing them in action has been a learning experience. It’s reinforced a few ideas with me.

First, that I am so glad I did not go into an academic line of work. It’s so annoying to have to deal with people who are impressed with how smart they think they are. And all the pitter-patter about academic subjects that have nothing to do with anything current or applicable in everyday life… that’s annoying, too.

Second, despite my lack of certifications and qualifications, I can hold my own professionally. No problem. I’m the real deal, and I can get along with just about anybody, I can figure things out, make them right, and I can get the job done. And if I don’t know something, I come to it with beginner’s mind and start from the bottom-up. I tend to overstep and screw up — of course I do. That’s how I learn.

Third, if you want to succeed in life and work, you’ve got to be teachable. For the long run. In every conceivable situation. Not just in the classes you take, but in real life. Each and every day. Ask questions. Stay curious. Don’t get arrogant and think you have it all figured out, because every situation is different, and the people around you won’t appreciate your attitude.

Fourth, resilience matters. All the time. Under any and every circumstance. You’ve got to be able to bounce back — and that’s something I’ve learned how to do, time and time again. You always have another chance, if you give it to yourself.

So, those are the four lessons I’ve learned from dealing with this new person. It’s reinforced things I know about myself, and it’s actually making me feel better about my own abilities and skills. Even if they are a bit like a rock tied ’round my neck, and they’re slowing me down… and they may not last in the job, because our boss is getting irritated with them… at least I’m getting something out of it.

Let this be a lesson to me. Let it all be a lesson to me.