All positive, most of the time – it’s a goal

Keepin' positive! :D
Keepin’ positive!  =:D

My new neuropsych is very, very different from my last one. They seem to relish the work of coming to terms with loss and pain and all that stuff. Ouch.

This is a very, very different focus than I had with my last neuropsych.

The last doctor I was working with really kept the emphasis on staying positive and not getting myself mired in all kinds of perceptions about misfortune. And while I did find that focus a bit annoying at times — considering how much difficulty I was having with some things — now I realize just how useful it was.

And I need to set that tone with my new NP.

It’s so very, very important for me to stay positive throughout my days, and not allow myself to wallow. It’s just not healthy, and it doesn’t do much for me. If anything, it just drags me down for days on end.

I’ve spent too much time getting mired in all that old stuff. And no matter how hard I work at “coming to terms with it”, that doesn’t change the fact that it happened, that it sucked, and that it hurts.

I’m not saying I’m into avoiding it or never facing it. I just don’t see the point in making it the central part of my life. It was, once upon a time, for far too long.

Now I need something completely different.

So, onward.

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So glad it’s Monday again

sunset-pineI’m sure you don’t hear that, everyday, but I’m really glad it’s Monday.

The weekend was long and rough – I was under the weather. All the activity of the last week caught up with me, and the transition to new providers is turning out to be more challenging than I expected.

Emotional lability is not my favorite thing. At all. It brings on migraines, and that leaves me dull and dumb for days on end.

I really need this transition time to proceed. Meeting with my old neuropsych once a week for the next five weeks is brutal. Just another reminder of change, which I have a hard time with, in any case. It might be easier if they were already gone, if they’d picked up and left without telling me. Then I could get on with my life, and put that all behind me.

But no. This is going to be a protracted process. A weekly reminder that things are changing.

Again.

Well, whatever. I just need to live my life as I have been – and get back into my week, when I can pour my energy into some focused activities. That’s really what saves me — getting out of my head and moving forward. Recognizing that there are going to be tough times, but that I can handle it, and in the end, everything is going to work out to the extent that I get involved in the action.

I made some good progress, this weekend on some of the projects I have going, and I spent a good amount of time in the woods. I got my naps, and I made some amazing meals. It wasn’t bad. I’m just glad I can get back to work and focus on something other than my own situation.

Onward.

Wow. Blast from the past…

I remember…

A week or so ago, I got a message from someone I have not seen in nearly 30 years. The last time I saw them, we were like siblings – so close, almost like lovers (except that we were each romantically involved with others in our small circle of friends). We were each others’ protectors and confidantes, through all the relationship drama that happens when you’re 22 years old.

I haven’t had that kind of a friendship with anyone, since – even my spouse.

That was back when I was drinking myself silly, most days. I was also still struggling with the after-effects of at least 5 mild TBIs, during my high school years. Plus, I was a falling-down drunk, so I may have hit my head during one of my forays, too.

Long story short, we parted ways under very bad circumstances. I was an ass.  And I split without an explanation. Just picked up and left and never responded to the letters they sent.

I was so lost, so confused, so messed-up and furious with the world. And when I started to get clearer and cleaned up my act, I tried looking for them online. But I found nothing, other than a single picture of them at a holiday party with an organization they worked for.

Then nothing. I searched again, but the picture was taken down. I can find pretty much anyone or anything online, so the fact that they were nowhere to be found made me think they were dead. It was crushing. I had wrecked things so badly with us, because of so much I had not figured out… and I believed I’d lost my chance to apologize and make amends.

Fast forward a few years. Doing a search, I found them again – just a single mention of their name at an organization where they worked, in the town where they had lived when I’d known them. No picture, no telephone, but I knew it was them.  I toyed with the idea of getting back in touch, but I couldn’t figure out how to do it as well as I wanted.

Fast forward a few more years, and another search shows them at a different organization in their town. Again, no telephone number or email. Again, I couldn’t figure out what to do.

So, I gave up. And I downloaded one of the songs we used to sing along to, back in the day. I listened to it, now and then, while driving around.

Then I stopped. That was over. It was done. Let it go.

Fast forward again… to last month. All of a sudden, a message from them shows up. They reached out to me. They found me. And they wanted to make contact.

It was something I thought would never, ever happen. But there it was.There they were.

I wrote a note back, and then wrote another. They responded. Then I wrote an extended apology and explanation for why I disappeared. I left out the TBI stuff. Why blame that? I was just an ass, is all. And young.

I haven’t heard back from them. It was a very honest, heartfelt note, and I can imagine they have some catching up to do with their own perspective. We’d had one one of those epic friendships, like soldiers do. Or castaways on a desert island, building a raft together, to head for the open sea and look for more help.

It’s been an emotional bunch of days. I’ve gone through over 25 years worth of upheaval, since last week, but now things are calming down, and it feels good. Like I’ve finally put that one missing piece of the puzzle in place. I don’t know if they’ll ever get back to me again, but the fact is, I finally finally got the chance to say, “I’m sorry. I did wrong.”

And that’s all I’ve really ever wanted.

A good night’s sleep… and a new direction

zelinsky-eye-info
Eye-opening info on the visual systems and the brain-body connection – click to read this

I had a very taxing day, yesterday. In the midst of telling my manager that I was leaving (and having them freak out, albeit in a professionally muted way), and also trying to get work done, so that I can wrap everything up for folks before I go, I had the constant interruption of people stopping by or sending me messages or emails or whatever, so that they could find out what was up… process… congratulate me… etc.

Everyone has been really great about it. Of course, we’re only in the early stages of grief.

Denial… Anger… Bargaining… Depression… Acceptance.

We’ve only gotten to the first stage (though I know everyone handles loss differently, so the order can be mixed up), and I’m expecting anger, bargaining, and depression to ensue before long.

As long as I’m prepared, that’s the main thing.

The issue is, all the interruptions, all day long, the emotion, the storytelling — getting the sequence of things correct, so that I’m telling a consistent story and don’t sound like I’m lying to people — it’s exhausting. Trying to focus, while people are all worked up and want to talk… good grief, it’s tiring. And by the end of the day, I was wiped.

Which is part of the reason I burned supper… then had a minor meltdown when my spouse started yelling at me… then got all bent out of shape about that signalling the permanent end of my marriage, because I just couldn’t take being yelled at when I’d had such a demanding day…

I felt a nasty migraine coming on, and retreated to my bedroom with the lights off and focused on my breathing and slowing my heart rate, to head the migraine off at the pass. It worked. And my spouse came to find me to talk things through because it made no sense for me to go to bed angry. And then I went downstairs and watched “Happy-ish” which is my new favorite show, because there are so many parallels between the main character and myself.

In the end, we finished the evening on a much more normal, loving note. I got a good night’s sleep and woke up to a glorious day. Glorious! as my elderly aunts used to exclaim, when I was a kid.

I miss those venerable elders. I miss them a lot.

Anyway, while reading The Ghost In My Brain, I found a lot of similarities to the author’s experience and my own — the nausea that sets in when people are talking to you… the balance problems… the fact that driving is actually okay, when you’re not cognitively drained (it’s actually a relief)… preferring blurry eyesight to glasses that make objects sharper, but don’t address the full spectrum of vision issues… and having everything be in slow motion when talking, because there are all sorts of additional processes that need to take place in the background, while you’re working through what someone is saying to you… and then there’s the trouble planning.

The author talks about how he had regular appointments with a Dr. Miller to work through daily logistics with TBI, and he was often not 100% sure he was supposed to be there. I used to do that all the time with my neuropsych, for a number of years. I was pretty sure I was supposed to be there, but I wasn’t 100% confident, so I just went — and if I was supposed to be there, then that was cool. If I turned out to be there on the wrong day, I was prepared to turn around and go home.

Fortunately, we always had appointments on Tuesday afternoons, so it was consistent. If it was Tuesday, then I’d go to their office and wait in the waiting room. Sometimes I would sit in the waiting room for quite some time, if I got there a little late. I wasn’t sure if I should go knock on the door, or if they would come out to find me. Eventually, I got in the habit of knocking on the door — the thing is, I now realize, I would avoid it, because it hurt my ears when I knocked. Driving an hour through evening rush hour traffic really took it out of me, so my hearing was on HIGH. I’d just suck it up, though, and knock. The discomfort of the knocking, though, was actually preferable to the auditory shock of hearing their door open suddenly. It always startled me, because they have one of those noise-dampening brushes across the bottom of their door, and it makes a really loud noise when it opens.

At least, it’s loud for me.

Anyway, all the discomfort aside, I’m considering following up with a neuro-rehabilitative optometrist to see if I actually have vision issues that are making my symptoms worse. After I was hit in the head with the rock when I was 8 (a year earlier I’d fallen down a flight of stairs and temporarily lost the ability to speak), I developed double-vision (diplopia, I think it’s called). I was taken to an eye doctor who prescribed reading glasses, and I’ve worn them ever since.

In recent years, I’ve actually opted for not wearing my glasses whenever I can. It’s more comfortable for me. My glasses help me see things in the distance just fine, but I prefer to do without them. Sometimes I will even drive for short distances without my glasses (if no one is around and the road is empty and runs straight ahead). I have been thinking it’s because I just can’t stand having them on my face… but now I’m wondering if maybe they are actually making it harder for me to see, because they are not allowing my eyes to get the kind of light I need to get.

Reading The Ghost In My Brain, I am finding so many similarities — especially with how vision and balance are so closely connected — that I think it makes sense to follow up with my vision. Just get my eyes checked out for that other aspect. Apparently, there are three ways our eyes help us — regular straight-ahead vision, peripheral vision, and then connections with sleep-wake cycles, balance, hormones, neurotransmitters, posture, etc.

And I wonder if maybe so many of my logistical problems — which I have never been able to articulate well to anyone, because they make no sense to me or anyone else — might have to do with vision issues. From the time I was 8. So, for over 40 years. If this is true, and my visual systems have been impacted, then it makes a lot of sense why I perform so high on visual-spatial tests. I’ve had to develop more abilities to offset the deficits I got from those TBIs. Add to that even more blows to the head, and you’ve got yourself quite a recipe for a very interesting life.

Additionally, I’m looking into the Feuerstein Method, which is a way of “learning to learn” — finding your strengths to offset your weaknesses, and restoring functionality that I really need to have, but which has eluded me.

My neuropsych has been incredibly helpful to me, in terms of helping me sort through all the psychological clutter, helping me retrain my executive function and beefing up my gist reasoning. The thing is, they take that approach, which is psychological, and the physiological aspects fall by the wayside. At least, that’s how it seems to me. And anyway, I do a really poor job of communicating everything that’s going on with me, at times, because I have a long drive to get to them, at the end of usually challenging days, and I’ve been so stressed out over the years with all my old sh*tty jobs, that I haven’t had as much bandwidth as I’d have liked to.

I do a danged good impression of someone who’s got their act together. Because I have to. If I don’t, I can lose my job. I can lose my house. I can lose everything, and my spouse will lose it all, too. So, keeping up the appearance of being on top of everything is my top priority.

Of course, that can backfire, because then you can’t always reveal the areas where you need help, when someone is there to help you.

But anyway, that’s another blog post for another day.

Right now, I’ve got some new lines of inquiry to follow, and that’s super cool. I also have some exercises I can do to help me — Designs for Strong Minds (the site of the rehab person who helped Clark Elliott retrain his brain) has a bunch of exercises at http://www.dsmexercises.com/, and I went ahead and paid the $13.99 for the full suite of exercises. It’s easier and quicker than trying to piece things together for myself. Plus, it’s a deal, because individually, the collections of challenges are $9.99 each.

Even the most basic ones pose some issues for me, although I’ve been scoring 87% or better. A number of my choices have been lucky guesses. I won’t be happy until I can score 100% without doubts. Then I can move on to the next batch. There are exercises for NASA rocket scientists, and other pattern matching things.

And that reminds me about my Dual N-Back training I used to do regularly. I need to try that again. I was doing Dual N-Back training when I was learning to juggle. Now I know how to juggle, and I wonder if my Dual N-Back training is “sticking” as well.

New tests for a new day.

Interspersed with lots of rest.

I’m pretty happy about the progress I’ve made in my life, relative to where I was 10 years ago. Relative to where I believe I could be — and should be — I’m not happy. I know I can do more and I know I can do better. Getting there is the challenge.

And it finding out if I have vision issues that can be fixed, could be an important next step.

Onward!

The chance to make a difference, every single day

Yes
Yes

Death is never an easy thing to deal with, and losing someone — or something — that means a lot to you, is just plain hard. Grief has a timetable of its own, and even when you think you’re past it, it can come up again — days, months, years after the fact.

I’ve been thinking a lot about loss, this fall. I’m working on my book TBI S.O.S. – Restoring a Sense of Self after Traumatic Brain Injury, and I’ve been thinking about all the ways that TBI has taken something from me over the years… including my Sense of Self.

Now a dear relative has died, and I have the opportunity to look at how that loss is affecting me and many others, whose lives they touched. Looking back at their long life — over 100 years — so many people and situations came across their path. Lots of good situations, lots of hard situations. And the last thing you could say about their life, was that it was easy. The last thing you could say about their personality, was that it was easy-going. They had a hard life, and they developed the mettle to deal with it. They weren’t always fun to be around, and they could be mean-spirited and cruel. But in the end, they really had a positive impact on so many lives. So many, many lives.

No matter their shortcomings — and we all have them — they always stayed true to their commitment to make a positive change in the world. That’s what their life was really about — through teaching, volunteer work, and active service on many boards in their community. The number of people coming through their hospital room at the end, to say good-bye and thank them for their service, was amazing. So many people who gained because of their commitment.

And it occurs to me, looking back at this relative, who had so many obvious flaws, that if they can make a positive difference, then any of us can. And we should. We simply need to have the willingness and the energy to keep going. We need to have that commitment. Each of us, in our own way, has at least one gift we can offer and develop to benefit others. And each of us, when we reach out to the people around us in a spirit of genuine helpfulness, can do something positive in this world to make it a better place. We don’t have to be famous or rich or mathematical geniuses to forge ahead. We can find our own small ways to pitch in and help, and do it better in our own way than anyone else ever could.

In a way, the fact that my grandparent was a difficult person, makes their contribution all the more inspiring. They freely admitted that they had limitations, and I know that in their later years they regretted a lot of things they had done in their youth. But they kept going. They kept learning. They kept showing progress and changing with the times. They didn’t push people away because of their limitations — they engaged with them and they learned from them, as well as taught. And in the end, what really matters is the good they brought to the world.

Looking at their example, I can see so many parallels with my own life — struggling with limitations, overcoming them, finding new ones to deal with, and keeping on till I could see past the most recent obstacle and get a clearer view of the world around me. Each barrier, each obstacle has taken me higher — so long as I’ve engaged with it. And each time I’ve overcome, I’ve gotten a better view of where I stood and what my options were.

Brain injury has been a real blight on my life. It’s stolen many good years from me, and it nearly ruined me, 10 years ago. But through following the example of my grandparent, and just keeping going, I’ve gained so much more than I ever could have, otherwise. And for that, I am truly grateful.

We all have something to offer. We all have something to contribute. And that “something” will necessarily change over time. As we age, as we learn, as we grow, as we go through the changes in our lives, our bodies and brains and outlooks change, sometimes turning us into completely different people. The loss of a job, the loss of a spouse, the loss of a home, a sudden change in fortune – for good or for ill – can drastically alter us and our relationship to the world and others around us.

That doesn’t mean we stop being able to help and contribute. That doesn’t mean we stop being useful and needed. Sometimes we need to recalibrate and shift our attention… look around for new ways to be of service. But those ways are out there — if we keep steady and look for them, with an open heart and lots of humility.

Okay, I’m getting off my soapbox now. I’m in a pretty philosophical frame of mind, these days.

On Thursday night, I’ll be driving to my family again for the viewing and funeral. I’ll probably be “dark” during that time, with everything going on. Right now, I’m making my list of things I need to do ahead of time, getting things together systematically, so I can just pick up and go on Thursday after work. I need to do laundry, buy food for the road, collect my thoughts for a short eulogy I’ll be giving, and basically keep myself steady and rested for the next week.

These things are never easy, but I do have a heads-up about what’s to come, so this will be logistically easier than the last weekend, when it all sort of took me by surprise. I was ill-prepared, in some ways, but it all came out okay in the end, I guess.

The main thing to remember, is that I’m doing really well.  I have NOT melted down, since getting back, and I’m keeping steady and calm. I have a long day ahead of me, but that’s okay. At least I have a plan to follow, and I know how things are going to shake out.

Anyway… onward.

My computer is brain-injured, too

I’m not the only one having troubles, these days…

Yesterday, when I tried to work on my computer, it was much slower than I expected it to be. It seemed really sluggish and took forever to respond (“forever” meaning a second longer than I’m accustomed to). And it kept having to stop to download patches and updates from the anti-virus program I have.

It was so frustrating. Its processing speed was so much slower than I wanted it to be, and no matter what I did, it couldn’t seem to go faster.

How frustrating! It’s bad enough that I have to deal with my own brain-injured system, which is so much slower to respond than I want it to be. It’s bad enough that I myself have to keep stopping to check in with myself and “download” more information about the world around me, so I can get my act together to take the next step. It’s bad enough that I’m so sensitive to fatigue and excitement and, well, life, and that I can’t seem to participate at the level I want to, except occasionally.

But my computer? Now I can’t depend on it, either?

Arrrrgghhh!

I try to be patient, I try to extend my laptop the same consideration I extend to myself, but it’s pretty frustrating. I’m very careful about what I download and install on my machine, and I do cleanup pretty frequently, removing files and then fixing the disk, compressing, and defragging. All in all, I’ve kept this machine going a lot longer than most people do. I’m very frugal with my resources, and I take care of what I have.

So, when nature takes its course and things start to break down a bit, here and there, and I start to think about spending extra money and time on new (to me) equipment, I get nervous. Because I remember all too vividly what it’s like to be in hock, to be so far in debt that my whole live is an exercise in indentured servitude.

I really don’t want to have to spend any more money than I have to.

But it’s not just the money that gets me. It’s the reminder of how things are sooooo sloooooowwww for me, sometimes. I tried to get some more work done last night, after I made myself some dinner, but I couldn’t get myself in gear to make any progress. It’s just as well. I needed to take a break, do some reading, and let everything just kind of sink in. Plus, the book I’m reading is pretty interesting, and it really held my attention all night, till I couldn’t concentrate anymore. But still. I want to be able to do the things I used to be able to.

Once upon a time, I could spend every waking hour of Saturdays and Sundays working on my research projects, and come away with some really great insights. Once upon a time, I could study for hours, learning new computer skills, and be more proficient on Monday morning than I was on Friday afternoon. Now, I consider myself lucky to get to Monday without being more exhausted than I was Friday afternoon.

I had kind of expected things to get better for me, as my recovery progresses. Things are getting better in some respects:

  • I can read again
  • I can hold conversations with people
  • I can keep from blowing up over little things that don’t matter
  • I can recognize when I’m going off the rails and take steps to get myself back in line

But the fatigue and the confusion and the sense of “WTF?!” that has me always wondering, What Just Happened?… that hasn’t really subsided. If anything, it’s worse. Perhaps because I’m more aware of it. Being able to recognize when I’m going off the rails, means I’m more aware of my “deviations” from what I consider the norm for myself. And I have to tell you, it is truly bizarre, to be living life inside my experience, which doesn’t look, sound, or feel anything like what I expect it to.

The one constant through my recovery has been my laptop. My computer, which is now struggling to keep up. Having that go on the fritz is making me all the more aware of my human frailty and vulnerability, and I don’t care for this experience.

I don’t care for it at all.

But here it is. There’s no escaping it, and I suppose the best I can do is just acclimate to the “new me” and get over it. Quit bitching and complaining, suck it up, and just deal with it. People go through losses all the time — friends, family, marriages, homes, jobs, mental and physical abilities, body parts, even their sanity. I’m not unique in this respect. I’ve lost touch with the person I feel like I am, and I miss them. I miss feeling like I know who I am and where I fit. I miss feeling a sense of orientation to life around me. I miss feeling like I know what will happen in my head next. I miss it. Sometimes it’s there, but then when I expect it to be there, it’s nowhere to be found. And I’m adrift again, making it up as I go, doing my best under the circumstances, just happy to be alive and healthy.

I do feel a little foolish, being so bent out of shape about losing my sense of self, but there it is. A lot of us go through it, especially brain-injured folks, but I don’t know about anyone else. Not really. And for me it feels so intense today. Part of the problem was that I really isolated yesterday at home. I didn’t get out much, and although I talked to my parents a couple of times, I didn’t have any live interactions with people. If anything, I avoided them. Because I was tired, and I just wanted to be alone to think.

Someone recently commented here that socialization is a huge piece of TBI recovery, and I totally agree. I didn’t think it was so, but it is. Socializing both challenges us and rewards us. It gives us a chance to interact and acquire new skills. It forces us to think on our feet and make an effort. But when you’re struggling with TBI, socializing can seem like too big a task to undertake.

I know it did for me, yesterday. Everything just felt like such a chore, such a drain. I didn’t want to go out, I didn’t want to talk to anyone, I didn’t want to have anything to do with anyone. I was tired. I was feeling overwhelmed. I was not up for the added work that interacting with others brings.

I just wanted my computer to keep me company.

But it’s brain-damaged, and it was struggling almost as much as me, yesterday. So, there we were, the two of us, muddling through.

Today looks like another beautiful day, and I’ll have to get out for a walk. My water softener seems to be on the fritz, so I’ve re-cycled it, and I’ll go out and get more potassium chloride later. Potassium chloride is better for me than sodium chloride, because the treated water is a little harder, it doesn’t get “soapy” and slick, and it also doesn’t create that rotten egg smell that you can get from sodium chloride. It costs a few extra dollars per bag, but so what? Over the long term it’s more expensive, but it’s worth it to me.

I’ll do the few things I need to do today, make sure I rest up, and really take it easy. I’m still wiped out from last weekend. I’m not sure when I’m going to catch up on my sleep and feel truly rested again. But at least I can enjoy myself at some of the things I do. And I’m already looking forward to that nap.

For now… onward.

Getting my house in order

The pieces will fit together, if I pick and choose and let some things go.

Just got up from my afternoon nap. I had an early start today, waking up at 4 and working for a bit, before helping my spouse and some friends get out the door to go to a business event they are attending. Lots of movement, lots of activity, lots of coordination, lots of details to remember for things that had to be remembered.

After they got on the road, I took the opportunity to do some yard work. I usually can’t start yard work till late afternoon, because my spouse usually sleeps till 2 p.m., and they don’t much care for waking to the sound of a lawn mower or leaf blower. So, I had some freedom to just work, and I got a lot cleaned up. Then I had some lunch and ran some more errands, came back home, took a long, hot shower, and collapsed for almost 2 hours. I could have slept longer, but I decided against it. The days are getting so short, and I have a lot I want to be doing with myself, while there are still daylight hours.

Anyway, it’s better if I don’t sleep too long – I don’t want to hose my ability to get to sleep tonight. I’ve been waking up at 5 a.m. regularly, so the sooner I can get to bed at night, the better. Obviously.

Now I’m figuring out what I’m going to have for dinner. I think I’ll make myself some lamb, which my spouse doesn’t like, but I love. Times like these, when I’m flying solo, are perfect for me to eat foods I can’t normally have when I’m cooking for us both.

The one challenge with the lamb is that I’ll have to prep and cook it. I toyed with the idea of subsisting on crackers and caramelized onion goat cheese spread, which is like a crazy drug to me, for some reason. But I really need some protein. I worked a lot today, and I’m sure I’m going to be sore tomorrow. So, I need to get some meat in me.

So, lamb it is. I won’t have to hover over the stove, just prep it, put it in a pan on the stove, and set the timer. And get some more work done in the meantime.

I’ve got a handful of things I want to do with myself in the next couple of days — I’ve already done one of the big things: yard work. I also need to reconstruct my study, which I now realize has to be re-stocked with certain books I had taken away a couple of years back. I have a lot of books on my bookshelves which do not reflect where I’m at these days, or where I’m going. I’ve been back and forth about my next steps and where I want to go with my career, etc., and I’ve been clinging like crazy to the technical angle, like my life depends on it.

News flash – it doesn’t.  The technical angle is something I recognize and remember loving. But my career has moved on — and I need to just admit it and accept that. In fact, my career is very much in flux, right now, with nothing absolutely certain about where I’m going. The only thing certain, is that it’s in flux and it’s headed in some new direction that I still have to figure out. I have an idea about where that direction is — and if I can stop preventing that from happening with back-pedaling to the technical stuff every other day, so much the better.

Seriously. It’s like I have amnesia. I need to make a sign for myself

YOU ARE NOT A TECHNICAL WORKER BEE ANYMORE

And be done with it.

I guess I just get nervous and try to head back into the arenas where I used to feel safe and secure. The thing is, I felt safe and secure, because I knew what I was doing. That’s not the case, anymore.

Part of the issue is that I’m being contacted by old friends and colleagues who “knew me when” — before my fall, before my life fell apart, before I stopped being able to pick up new things at a moment’s notice and run with it. The inner workings of my brain are so very different, now, and none of them saw me go through that flame-out over the past 7 years. For all they know, I am still the technical whiz kid they used to know.

But I know better.

I guess I need to do a better job, too, of communicating to folks what my new life is. It’s kind of embarrassing for me to “admit” that I’m not highly technical anymore. And it’s also bothering me a good deal. But that’s the fact of the matter. It’s just how things are, now. Time to move on.

This is a theme in my life, these days — moving on. Getting my act together and just moving along. There’s a fair amount of grief that is going with this, because I’m having to let go of things that used to be such a big part of my life and my outlook. It’s like I have to stop hanging onto parts of me and my life that died years ago, but I have still been pretending exist. I’m kind of like one of those people who can’t let go of a beloved pet, so I keep their ashes — or their stuffed body — up on a mantle, so I think that part of them is still with me.

It’s kind of creepy, actually, now that I think of it.

Yeah, it’s time to get my house in order and let go of things. Just let ’em go and move along. Gid-along little do-gie and all that.

Because when I think about it, I have a bright and shining future ahead of me that’s well outside the bounds of where I used to function. I got into technology as a reaction to hating my old effing job that I had back in 1995, and it’s been good to me. But the changes over the years have not been positive and the job market has shifted away from me in a very big way. I need to move along in this new direction I’ve identified — do some good work, make some good progress, and let my life transform itself.

Hanging onto the past, no matter how well it once treated me, is no good for my future.

So, tonight after I have my lamb dinner, I’ll move the old books out of my study and make room for the new. It’s gonna be a whole new day.

Onward.

 

Feel like crap, but I don’t care

This is my whole new attitude, these days. And it seems to be working. Ironically, when I stopped worrying about feeling like crap, and I quite trying to always get myself into a “good space”, I immediately began to feel better.

I got about 6-1/2 hours of sleep last night. I had a 2-hour nap yesterday afternoon, which helped me yesterday, but it left me feeling almost worse after I got up. I am really dragging, today — probably due to having lost a LOT of sleep last week (waking up at 2:30, not being able to get back to sleep), and not being anywhere near caught up. Another thing that’s dragging me down is a bunch of things I meant to do yesterday, but didn’t get to, for one reason or another.

Anyway, this morning I’m foggy and slow and “clunky” – about the only way I know how to describe it. I am definitely not sharp, and even a cold shower and some exercise didn’t perk me up. Part of it is my mood. I’m not feeling very positive about my life, right now. A lot of situations around me seem really messed up, and it’s completely out of my control. It wouldn’t be so bad, if it didn’t affect me, but people close to me — family and friends alike — are making incredibly bad decisions, in my opinion. Actually, no, it’s not my opinion. They really are making bad decisions that have bad consequences. It would be easy to sit back and say, “Oh, too bad – not my problem,” but ultimately it will fall on me to help them put the pieces back together — pieces that they broke, to begin with.

It’s all way too messed up, in my opinion. Especially with the stupid health decisions, some of which are landing my relatives in the hospital. People are seriously causing themselves a lot of suffering because of how they don’t take care of their bodies, minds, and emotions. So many things around me seem broken and sad, and I cannot do a thing to change them. I have friends who tend to see the world in recovery-type terms, and they love to go on about “co-dependency”. I don’t think I’m being “co-dependent”, wanting the best for other people and wanting them to make decisions that make them happy and healthy, rather than stressed and fried. I don’t think it’s a sign of a problem, for me to genuinely care about others… and also care about myself and my own limited bandwidth. I feel like I have to be on constant guard against people close to me, because they are so habituated to patterns of thought and action which do not help them in the least — if anything, they work against them.

Everybody seems so caught up in their illusions and confusions, and they apparently love it. I know how that goes — it makes them feel alive. But for me, it’s a total friggin’ drain. And the thing that drains me the most is feeling like people close to me are getting progressively worse, not better, and they’re on this downward slide into one form of madness or another. Meanwhile, they’re sucking up valuable time and energy from the things that I really care about and the things I want (and need) to do.

It sends me over the edge. Like last night, when I went out to pick up some dinner with a friend, and we ended up arguing and tossing f-bombs at each other in the restaurant parking lot. Nothing like a little public display and disturbing the peace to round off a really aggravating afternoon with this person who loves to get riled over all kinds of crap, is diabetic, overweight and they don’t watch their blood pressure. Not only are they becoming increasingly difficult to deal with, but they’re also one of my main supports. The restaurant staff were understandably wary — good thing we got the food to go.

Note to self: Make New Friends, because the ones I have aren’t taking good enough care of themselves to be around for the long run. I expect to be visiting this friend in the hospital within a few years — again. I went through a near-death experience with them nearly 10 years ago, and it wasn’t fun. The prospect of doing it all over again (if they survive this time), is one of the little black clouds that hangs over my head regularly.

Well, the only thing I can do, is try to stay strong and positive in my own life, do things that make me feel like a real person again, and let me get my life back. I get sick of feeling like someone else’s sounding board/punching bag, when they aren’t being responsible with their own physical, mental, and emotional health, helping them pick up the pieces that they break apart and throw all over the place.

Call me “The Cleaner”. Only I don’t get paid for this job.

Well, I’m sick of bitching about everything. Vent, vent… whatever. I’m not feeling well physically, and I know it. That messes with my frame of mind, and it makes me touchy and edgy — things that I usually take in stride don’t get to me. I have another day to myself before I go back to that hell-hole of work. At least tomorrow I have all-day training that will help me get to the next stage of my working life. I think this is going to be good — it’s formal training in something I’ve been doing on my own, on the side, and it will give me a good idea of I’ve learned enough and if I’m expert enough to market that skill. It’s almost like a formality for me, but it’s an important one.

So, that’s a positive thing.

Summer is winding down, and I know that things can change in an instant with me and my outlook. All it takes is a little bit of good news, and I’m back. I know I’m tired, and I’m feeling crappy today, but that doesn’t need to derail my day. I have a wide variety of things I can think about and focus on, so if I can manage to get myself out of that bad headspace, it can only help.

At least I am centered and doing well in my own life and my own head. Public melt-downs aside, I’m doing pretty well, I have to say. I’ve been making good progress with my projects (marketing pains notwithstanding), and I’m feeling really positive about where things are going. I have a meeting coming up this week with some folks who may be able to help me reach some of my goals, so that’s encouraging. And I have other folks who have expressed interest in what I’m doing and may want to help in other ways. I just need to clear some of the extraneous stuff off my plate, take care of little to-do items that are hanging over my head, and just move forward.

Yeah, keep moving forward… Use the anxious, nervous energy I have for something that’s positive and pro-active. Don’t fight that energy, use it.

Which brings me back to the original theme of this post — feeling like crap, but not caring. When I stopped fighting feeling like crap and decided to just go with it… and use the energy for something positive… things started to really look up for me. There is an awful lot in my life that is just plain wrong, but rather than fight it or struggle with it, when I accept it and then take that anger/sadness/frustration and channel the energy into a positive activity, things really start to turn around for me.

And this is new. Because all my life, I’ve been in damage-control mode, where I had to have everything just-so, in order to do anything. Now that I’ve stopped caring so much about things being p.e.r.f.e.c.t. I have access to this store of energy I can use for other things. Instead of pushing it down, I let the anger/sadness/frustration just bubble up, and then I direct it towards what I want to do with it.

In the end, it’s all just energy. What I do with it, is my choice.

And right now, I’m choosing to go do something I meant to do yesterday, but didn’t get the time. I have the time now. So, let’s do it.

The Sixth Stage of Grief (after TBI)

Some days you just have to keep swimming

I’ve been dealing with a lot of grief, lately. The work I’ve done for nearly three years has changed dramatically, and with that change, I am losing a key element of my identity which I am realizing has been a big part of who I see myself to be in the world. Not only that, but my (and other coworkers’) impending change of employment, which is becoming self-evidently inevitable with each passing day, is a source of yet more grief, as I contemplate getting on in my life without these people in my life each day. Even the people I don’t much care for and won’t mind never seeing again, have a place in my life, and my life has been shaped by and oriented to them for years, now. So, making a change is hard.

Making any change is hard for me. It always has been. I take it hard. I spiral. I feel like the world is ending and I can’t see any light at all – tunnel or no tunnel. The grief is almost debilitating, and trying to “sit with it” as some of my meditating advisors suggest, just makes it even more profound. What’s more, when I “invite it fully”, as I’ve heard recommended by a very prominent meditation teacher/practitioner, the waves of grief become so amplified, so intense, so profound, that it practically paralyzes me.

And watching myself and my reactions to this kind of experience, and seeing how the “standard issue” coping mechanisms actually cripple me, it occurs to me that the population best served by those sorts of approaches are neurotypical, non-TBI folks whose brains are not wired / re-wired quite the same way mine is. Seriously, this emotional processing gets to be debilitating. And you know what? Despite having gone through this kind of process more times than I can count in the course of my loss-riddled life, despite promises and belief and a bit of dogma around the formula of the Kübler-Ross model (Denial, Anger, Bargaining, Depression, Acceptance), I’m starting to believe that with TBI you need a sixth stage — PIAAGOWYL — Put It Aside And Get On With Your Life. Or P for short.

So we end up with DABDAP. That’s my proposal, anyway.

In brief, according to Wikipedia, the five “stages [of grief], popularly known by the acronym DABDA, include:[2]

  1. Denial — “I feel fine.”; “This can’t be happening, not to me.”
    Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death. Denial can be conscious or unconscious refusal to accept facts, information, or the reality of the situation. Denial is a defense mechanism and some people can become locked in this stage.
  2. Anger — “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”
    Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Anger can manifest itself in different ways. People can be angry with themselves, or with others, and especially those who are close to them. It is important to remain detached and nonjudgmental when dealing with a person experiencing anger from grief.
  3. Bargaining — “I’ll do anything for a few more years.”; “I will give my life savings if…”
    The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, “I understand I will die, but if I could just do something to buy more time…” People facing less serious trauma can bargain or seek to negotiate a compromise. For example “Can we still be friends?..” when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it’s a matter of life or death.
  4. Depression — “I’m so sad, why bother with anything?”; “I’m going to die soon so what’s the point?”; “I miss my loved one, why go on?”
    During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed. Depression could be referred to as the dress rehearsal for the ‘aftermath’. It is a kind of acceptance with emotional attachment. It’s natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation.
  5. Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.”
    In this last stage, individuals begin to come to terms with their mortality, or that of a loved one, or other tragic event. This stage varies according to the person’s situation. People dying can enter this stage a long time before the people they leave behind, who must pass through their own individual stages of dealing with the grief.

Kübler-Ross originally applied these stages to people suffering from terminal illness. She later expanded this theoretical model to apply to any form of catastrophic personal loss (job, income, freedom). Such losses may also include significant life events such as the death of a loved one, major rejection, end of a relationship or divorce, drug addiction, incarceration, the onset of a disease or chronic illness, an infertility diagnosis, as well as many tragedies and disasters.

As stated before, the Kübler-Ross Model can be used for multiple situations where people are experiencing a significant loss. The subsections below explain how the model is applied differently in a few specific situations. These are just some of the many examples that Kübler-Ross wanted her model to be used for.

Now, in watching how I handle loss and grieve over things, the thing that strikes me is the intensity and duration with which I experience everything — to the point of losing all sense of perspective and temperance. I mean, I just lose it. Each “stage” becomes a raging animal in its own right, and it pulls me down into its jaws like that sinkhole that swallowed that guy in Florida. And nobody, but nobody, can get me out, so long as I’m “feeling it fully” as some teachers suggest.

Seriously, feeling something “fully” is a recipe for disaster with me. The emotion takes on a life of its own and snowballs into something vast and overwhelming and utterly debilitating. And you know what? It doesn’t go away. It stays with me as keenly, 20 years later, as it was when it first arrived. I still teeter on the verge of tears when I think about some losses I had when I was a little kid. I still have to fight back waves of despair and depression when I think about some things that I lost — even when everything turned out okay in the long run. Time doesn’t heal those things with TBI. It just doesn’t. And the more I think about it, the wiser it seems to me that my neuropsych doesn’t tolerate me going off on emotional drama tangents, or encourage me to “feel fully” the crap that I’m going through each day.

Because with brain injury, “fully” is in a whole different league than what most people experience. And the consequences of letting myself get too close to the edge of that pit are WAY too serious. Think Owen Thomas of Allentown, PA — the U Penn football player who hung himself after an uncharacteristic emotional breakdown. He had no history of depression, and no history of mental illness. Yet this young man with a CTE-impacted brain, killed himself, seemingly on a whim.

It’s one thing to go through grief when you’re neurologically intact. Then the 5 “DABDA” stages of grief make sense. But when your impulse control and executive functions and emotional modulation abilities have been compromised… good luck. Here’s how my grief experiences go:

  1. Denial — “I feel fine.”; “This can’t be happening, not to me.”
    Denial is usually only a temporary defense for the individual, but for me, it can continue intermittently for quite some time. What’s more, what most people would consider “denial” is more a case of my brain not gathering all the salient facts together and making proper sense of it all in quite the right way. I can go for weeks and months without really realizing what’s going on, because I have not assembled all the pieces of information “in one place” in my brain — it’s not so much denial, as it is the way I process information — with full focus on one or two issues, totally excluding everything else until I have made sense of the one or two that are in front of me. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death. In my case, I don’t know that it’s ever really replaced. Wtih me, denial can go on for a long, long time, even after the situation is a distant memory. Denial can be conscious or unconscious refusal to accept facts, information, or the reality of the situation. Denial is a defense mechanism and some people can become locked in this stage. And with TBI this is more problematic, because as I said above, cognitive processing differences look a lot like denial, when they are just different ways of parsing info and fitting it all together.
  2. Anger — “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”
    Once in the second stage, the individual recognizes that denial cannot continue. And when this stage comes with someone who has TBI-related anger issues, it can be hell for everyone and anyone. Combine the anger with impulse control issues, and an already underlying lower threshold for anger management, and you’ve got an extremely volatile situation. Because of anger, the person is very difficult nearly impossible to care for due to misplaced feelings of rage and envy. The misplaced feelings can be tied in with a multitude of different life situations, and the feelings themselves can be so amplified that the person can become just a little dangerous. I’ve found myself actually throwing things at my desk at work, over the past few weeks, which is a red flag for me — and H.R. Anger can manifest itself in different ways. People can be angry with themselves, or with others, and especially those who are close to them. Or at nothing or no one in particular. With TBI, you don’t need a reason to be angry. But you sure as hell need strategies for controlling your outbursts and getting your mind out of that state. It is important to remain detached and nonjudgmental when dealing with a person experiencing anger from grief. And it is important to find ways to keep cool and calm down the erupting volcano, when you are dealing with grief and TBI all in one. Seriously, this stage – while it might seem like “just another stage” for neurotypical individuals – can be seriously impactful for someone who’s living with brain injury. It requires a lot more attention and better coping strategies than “letting the process run its course”.
  3. Bargaining — “I’ll do anything for a few more years.”; “I will give my life savings if…”
    The third stage involves the hope that the individual can somehow postpone or delay death (or whatever else you’re losing / have lost). Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, “I understand I will die, but if I could just do something to buy more time…” People facing less serious trauma can bargain or seek to negotiate a compromise. For example “Can we still be friends?..” when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it’s a matter of life or death. In my case, the bargaining stage doesn’t work very well, because I have difficulty remembering from day to day what I’ve promised in return for a reprieve. It’s almost comical — one day I can bargain and promise that I’ll do such-and-such, but the next day I’ll completely forget that I made that promise and I’ll be back to anger and sadness and denial and all the other stages. Then I’ll remember, “Oh, yeah – I promised that if I did such-and-such, I will get such-and-such… But I’ve already forgotten, so I didn’t hold up my end of the bargain, so why should things work out the way I want them to?” Hence, bargaining is not much of a strategy for me. It only works if you can remember what you promised the day or week before.
  4. Depression — “I’m so sad, why bother with anything?”; “I’m going to die soon so what’s the point?”; “I miss my loved one, why go on?” And so on. Heck, you don’t even need a specific thought or point of view to get depressed with TBI. With me, levels of depression are directly related to how much energy I’ve expended on things, how much I’ve worn myself out, and how much more I feel I need to do. When I have a lot on my plate but I don’t have a lot of energy, and I have been living on pure adrenaline for days, *wham* I get depressed. Severely. The thing is, it passes as quickly as it arrives, given the right circumstances. I can’t even begin to count the number of times I have “snapped out of it” when I was feeling so low, so close to the edge. I used to get alarmed, when I would sink so low. Now I am often aware that my depression is a temporary thing, and all I need to do — literally — is get my mind off what’s bothering me, to feel instantly better.
    During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. … Um, maybe for someone who is dying, but not for someone like me who is sinking into a depression over some stupid sh*t that’s gotten the best of ’em because they ran out of energy and are feeling sorry for themself. It is an important time for grieving that must be processed. But if I stay in it, heaven help me. Depression could be referred to as the dress rehearsal for the ‘aftermath’. It is a kind of acceptance with emotional attachment. It’s natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation. Or it can show that the person has lost all perspective and is sinking into a hole that they really need to get out of, while they still have some measure of self-control and at least a little access to perspective. Leaving me in a depressed state for an extended period of time is just not good. Fortunately, I usually know how to get myself out of it. In some cases, watching America’s Funniest Home Videos will do the trick — at least then I know I’m not the stupidest person in the world.
  5. Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.” “And there is no way I can avoid this, so I might as well suck it up and get on with what I need to do.”
    In this last stage, individuals begin to come to terms with their mortality, or that of a loved one, or other tragic event. This is where I get to the point where I can let go of any attempts to block what’s happening and just get on with dealing with what I need to deal with. This stage varies according to the person’s situation. And it can come and go (when you have TBI issues) as quickly as any of the other stages above. Seriously, I can be in a state of full-blown acceptance and peace one moment, then cycle through all the other stages in an instant. It’s crazy-making. People dying can enter this stage a long time before the people they leave behind, who must pass through their own individual stages of dealing with the grief. And people who have TBI issues can never permanently reach this stage. At least, in my experience I haven’t. God, there is a whole lot of old sh*t I still struggle with. I know acceptance is in there somewhere, but it has to share space with the other four stages concurrently.
  6. Which leads me to the last stage PIAAGOWYL — Put It Aside And Get On With Your Life. Or P for short. This is the thing I do when I am just done with the suffering, done with the anguish, done with it all, and I just don’t have the strength left to continue on. My brain gets fixed on all those stages, at varying times and to varying degrees, and from one day to the next, I can still be impacted by things that happened to me years ago, which I haven’t been able to get out of my system. The old “shadows” of those raw emotions are still very real to me, and I feel them intensely. I have worked like mad to get rid of them, to work my way through them, but I suspect that my impacted working memory and other memory issues may prevent me from retaining the “lessons” I’ve gotten from “processing” all the stuff before. It’s like I never even learned those lessons, when I am in a certain frame of mind. So I cannot spend a ton of time working my way through them. They’re just there. I just have to move on. I just have to live my life and do what I need to do, regardless of how I feel or what my head is telling me about me and my life.

I’m sure that there are plenty of people who have benefited from understanding and applying the DABDA model. I have no doubt of that. In my case, however, I have to put the emphasis on Putting It All Aside and Getting On With My Life — realizing that “these things happen”, that losses are inevitable, that when it happens, it’s not much f*ckin’ fun, and it’s going to hurt like a bitch, but ultimately I’ve got to just live my life, no matter what. I have to continue to function, even when I’m thrown for a loop. I have to make the most of my life, even when everything is falling to pieces, which often feels like is the case… even if there is no specific event I’m forced to deal with.

See, that’s the other piece of things. I can get sucked into a hole, even when things are good. If I’m tired, and I’m pushing myself, and I’m irritable or agitated, my mood can swing to the south in a hurry. It doesn’t matter that everything is hunky dory around me. I can feel like sh*t at an instant’s notice. All I need is some fatigue, maybe a sugar crash, maybe a bit of psychological catastrophic overwhelm about something complicated that I am trying to get done which suddenly looks like it’s too much for me. Anything can set me off. Anything. I can be sitting talking with someone about good things going well, then all of a sudden, I’m in the dumps… overcome by a thick black cloud of confusion and depression.

But then, just as quickly, the depression lifts — sometimes for good reason, other times for no apparent reason at all. Rather than puzzle over it and try to figure it all out, I just have to move on.

Speaking of moving on, it’s time to get to work.

More later.

Reblog: Sports discourse in the aftermath of Junior Seau’s suicide

This is an awesome piece on the death of Junior Seau and what it means for the current sports concussion dialogue. Nice work!