I’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.
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.
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 finallygot the chance to say, “I’m sorry. I did wrong.”
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.
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.
An odd thing has happened with me, since I had my contract renewed at work. After being relieved and elated that I wasn’t going to have to go searching high and low for another job, the surge in energy left me feeling pretty depleted… and also depressed.
That happens with me — I run a lot of energy — I “run hot” — and then when I run out of steam, my energy ebbs, and my mind gets to thinking that I feel like crap because my life is crap, and everything is wrong and nothing will every be right again. It’s sorta kinda like bipolar stuff on the surface, but fundamentally, it’s about me being tired, my brain getting irritable, and my head jumping to wrong conclusions about how crappy life is in general.
It’s not true. It’s just me being tired. And getting a lot of extra rest solves that issue — which is what I did this past weekend. I rested. And my depression went away.
Anyway, last week I got upset that I’m no longer a technical whiz, that I’m not doing the type of programming I used to do, and that I kept (and keep) getting calls and emails from recruiters about technical jobs that I want to take, but can no longer do.
The money is better in technical positions, that’s for sure. And it’s a simpler way of life that doesn’t involve navigating the choppy waters of human interaction. But I just can’t do it, anymore. My brain doesn’t work like that anymore. I’m out of practice. And even the simplest examples which are given for “dummies” don’t make any sense to me.
Insert giant sad-face here.
The thing that gets me even more than the money and type of work, is that ever since my fall in 2004, I have not had that kind of immersive focus in my work that I used to have. I used to have a “zone” I would go to, when I was deep in coding, when I was deep in the experience and working smoothly and confidently. But that hasn’t been anywhere in sight (except for some occasional times), for over 10 years.
And that’s the loss I feel the most keenly. It’s heart-breaking. I used to love that way of working and feeling, and now it’s gone. Like a pinkie finger that got cut off. I can live and work without it, but I like all my fingers, and it just doesn’t feel the same.
So, rather than wallowing in that unhappiness and marinating in my discontent with something that isn’t likely to change in exactly the way I want it, I did some research. And I came across a book called “Flow” by a psychologist whose name I cannot pronounce. I watched some videos on YouTube and found the book at a local library, and I’ve been digging into it, a little bit at a time.
See, the thing that I miss is not so much the technical work, as it is the experience I used to have while doing the technical work. And after reading “Flow” a little bit, I now realize that what I miss is being in the “zone” — being able to concentrate completely on my work with total confidence and skill.
That’s what made that work magical, not just all the bits and bytes and algorithms.
So, that’s what I’m working on, these days — getting back to a zone state. Finding where I am really confident and skilled — even in the little things like washing dishes or fixing things around the house — and doing those things “in the zone”. Not zoning out, where I’m not present and I’m ignoring everything and everyone around me, but really being caught up in the amazingness of what I’m doing.
Finding that amazing quality to the world I live in, and really relishing the details — no matter how small.
Even the littlest thing, like brushing my teeth or sweeping the floor, can put me in the zone, if I have the right frame of mind. Or bigger things like doing my taxes or completing a project at work… that can give me a sense of Flow, as well.
It’s really the quality of experience I’m interested in. And out of that can then come a sense of mastery, which in turn feeds the desire for mastery in other areas of my life.
But I have to start somewhere, and then build from there.
So, that’s what I’m doing. I know what I’m missing, and I have a good idea how to restore that “zone” sense, that feeling of flow. It’s probably going to be different, of course, because my new work is different from my old. But maybe it will be quite similar.
For my 1979th post, I want to talk about my 14th year on earth – it was an interesting one. That’s the year I entered high school, I fell out of a tree and landed on my back, and I lost two really important people in the space of a weekend.
There were a lot of good things that happened that year – I became more social, and I started running cross country, which gave me a great outlet for my energy.
That year I also fell out of a tree and landed on my back across a log. I couldn’t breathe for a while, and fortunately I was near my house, so I ran home and laid down to catch my breath.
I’m not sure if I broke anything, but I was pretty dazed and out of it. I just felt so weird… like my body was made of cotton and my brain was under water.
That was the year I also lost two people who meant a lot to me. One was a parent of the family next door, who was like my own parent — even closer, because they were not cruel to me. The other was an athlete I looked up to and really aspired to emulate.
On a Friday morning, the parent next door passed away from cancer. I hadn’t talked to them in many months, because I had impulse control issues with one of their kids, and I “went off” on them and hurt them kind of badly. The “second parent” I thought I had didn’t understand my issues and was pretty strict with me. I felt wronged, so I quit talking to them.
Nobody understood me. Not even them. Nobody “got” that I was fighting issues no one could see. All I knew was, I had lost the connection that I used to feel with this adult.
And 24 hours after they passed from cancer, my hero was killed when their car was struck by a train. I heard about it on the radio, when I was out buying basketball sneakers. They didn’t say the name of the person who was killed, but I knew who it was. I just knew.
Both of those losses devastated me. I lost all connection with my world, and I went on “autopilot”.
In 1978, things started to turn around. Then in 1979, they got all screwed up again. And I figured I was cursed. Doomed to always be alone and isolated.
Oh, I have to stop writing about this. I’m getting really upset, and I am too tired to dwell on it. I have some chores I need to do, and I need a nap. I have been working on a project since early this morning, and I am tired. Tapped out.
Maybe I won’t write about my past. It’s pretty depressing. I’ll see if I can write some positive and constructive things… later. Right now, I have to tend to other business.
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.
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.
Tomorrow I’m back to my everyday life… waiting for the call to see when I need to travel for the funeral. We’re all guessing it will be this coming weekend. We’ll see.
Regular, boring everyday life never looked so good. I can get back to my routine, my usual activities, my usual interests. And I can keep moving forward with my own life in my own way.
And that’s good.
I talked to each of my siblings today, and we all have our own perspectives on things. We also have our own priorities. We’ve all literally gone our separate ways, and coming back together next weekend will put us in rare proximity to one another. That doesn’t happen very often.
But for now, the day is done, and I’m about to head to bed. I slept all afternoon and then got up to go food shopping and just get out of the house. I’m starting to feel human again, but it’s going to take more than a few hours of sleep to get back to balance.
And then more travel…
The best I can hope for, is to keep steady and predictable and not go off the deep end because I’m tired and frustrated. Just keeping steady is the big thing.
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?
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.
I’ve been thinking a lot, lately, about the things I’ve left behind over the years. The people, the places, the things… as well as the abilities and interests that have gone away, due in large part to TBI. With Thanks-giving fast approaching, here in the U.S., and travels to old haunts and family activities on the horizon, I have been thinking a lot about how things are different now than they were before — as well as how things might have been different, had I not fallen in 2004 and gotten screwed up with that head injury.
I’ve also been thinking a lot about how I handle my life now, compared with before, due to my TBI recovery work, and my discussions with my neuropsych. The professional I see for rehab work is not very big on acknowledging or dealing with the losses I’ve experienced — in part because my perception of those things has been pretty heavily skewed, and it isn’t always accurate. And my NP is there to get me to move forward, not stay stuck in the past.
In any case, they don’t seem to believe me when I tell them about how things were before my injury. Like so many people, they make up their minds about who and how I am, and they use that as a reference point for dealing with me. Their reference point isn’t always accurate — but then, my own reference points are not always accurate, either. So, between all these different reference points, without having any confidence in specific details about Who I Really Am and How I Used To Be, I just keep moving forward, keep living my life, and I don’t try not to worry about.
But aside from the general haziness of who I really am and how I really am, I have been dealing with a lot of sense of loss, lately. I have immediate family members who have either passed on, or are in their late-late golden years and may not be around much longer. I also have family members who make what I consider really un-healthy decisions and are locked in a constant struggle with drama they have invented with their own personal choices. All in all, it’s pretty depressing to go visit my family, because there is so much unhappiness — due in large part to people making decisions that are not healthy or helpful for them and those around them. The worst part is, they can’t seem to see any way out of their decisions, as though they “have” to do those things that hurt them.
Am I being vague? Here are some examples of choices by loved-ones that depress me:
Moving in with someone and then marrying them, despite the fact that they have a drinking problem… then being stuck in a marriage that looks great on the outside to everyone who cannot see that your spouse is structuring their entire life schedule around getting drunk — and you’re stuck in that schedule, too. For years. Till you leave them and start living with someone else who doesn’t seem like a much better choice.
Losing your spouse to cancer at a relatively young age, when you have two young kids, and never getting those kids proper counseling help for their loss… and marrying someone who looks exactly like the spouse you lost and you don’t really love, but is a good parent for your kids… and burying yourself in a very extreme religion to dull the pain of your choices.
Having a lot of health issues that are directly related to lifestyle — eating foods that are bad for you, keeping a schedule that is unhealthy, and ignoring the warning signs your body is giving you — and being progressively more crippled each year from the foods you eat and the way you live your life.
Spending your life in a profession that is combative and antagonistic, and bringing that combativeness and antagonism into the home where you verbally attack anyone who disagrees with you, hurting and pushing people away “on principle”.
Choosing to marry for practical, popular reasons instead of love, then spending the rest of your adult life pining for a deep emotional connection with your spouse that has never been there, and never will be… refusing to accept responsibility for your choice in partners… and being on heavy-duty meds to dull the pain of your choices and your refusal to make different choices in your life that would suit you better but be less popular with others… Basically medicating yourself to avoid taking any responsibility for your life.
I don’t mean to be cold or unkind — my frustration comes from knowing just how much better life can be, and feeling great pain for the individuals I love and care for, who seem so stuck in the ruts they’ve grooved into their lives. We don’t have to be victims! I want to pick them up and shake them and let them know there is a better way. But it’s like we’re living in parallel universes and speaking in a different language, and they cannot hear or understand what I’m saying.
Now, I know life is never going to be perfect, for sure, and there is much pain and struggle for all of us. Most people struggle with inner demons that no one else can see, but we fight with daily. But the fight doesn’t have to be miserable. We can see it as a regular part of life that can bring us some freedom and relief — and help to define and refine our characters.
So, there is hope. At the same time, there is so much grief and loss and pain. This time of year is very hard for me, because I lost some important people around this time of year, and the autumn-time experience of loss still stays with me to this day. It’s like it’s in my cells — and I re-live it each year, even decades after those losses.
So, the theme for my life during this time of year is mourning. If I don’t do something constructive, the grief just takes over. I know I have many, many reasons to be thankful — and maybe that’s the thing that will save me — Thanks-giving — yet I cannot seem to shake this grief, this sense of having lost so much over the years of my life, thanks to TBI and the results of it, starting in childhood and on into my adult life. I cannot help but wonder, what might have been possible, had I never gotten hurt like that… had I gotten help… had people known about TBI when I was a kid, and given me half a chance. I cannot help but wonder, what might have happened, had I told someone about my head injury when it actually happened in 2004, instead of lying about it and then watching as my whole life went to hell for no apparent reason.
But no, it didn’t happen that way. And I am bereft.
This is something that I think many people fail to see and address — the losses of TBI, the importance of recognizing and mourning of those losses, and dealing with the deep grief that comes from knowing that once upon a time you could do better… that once upon a time, you took certain things for granted… that once upon a time, so much was possible… but now it’s all different. It’s not like that anymore. Maybe somewhat, somehow, but not exactly. And you have to start from scratch in many ways, and fight your way back to where you want to be — if you can ever get there at all.
Sometimes, you can’t get there as quickly as you’d like, or not at all, and then you have to let it go. You have to just cut your losses and move on.
But “cutting losses” doesn’t factor in the pain that comes from those losses, and that’s what I want to talk about today.
When I try to explain to people what it was like for me before I fell in 2004, I get blank stares.
When I try to tell them how I used to be able to just pick things up — new programming techniques, new ideas, new information, they just look at me like it’s no big deal. When I tell them how I used to be in the thick of craziness on the job, day in and day out, without any real negative side-effects, they almost don’t believe me, and they cringe if I tell them what it’s like for me now (if I even do – because nowadays, I don’t).
When I try to tell them how fluid my approach used to be, before I fell — I would see a challenge and I would rise to it without giving it a second thought — they almost don’t believe me, either.
And when I tell them how much money I used to make and how much money I was worth, the flat-out disbelieve me. Because that would be impossible for someone my age without a college degree, doing the kind of work I used to do.
This is partly because they didn’t really know me before. They didn’t know the line of work I was in, and they didn’t know what it was like to work for my employer. They don’t come from the world where I work, each day, and they have no idea just how good things were for me, and how well I could function in those circumstances, and how rewarding it all was. For people who know me now but didn’t know me before, my accounts of how things used to be just sounds like confabulation — or me making things up. Because the difference between now and then is so dramatic and so extreme, that they probably could not begin to imagine me as I once was.
As I believe I once was.
See, there’s the rub — maybe I was that way, or maybe it was my perception of how I was. Maybe I was “all that”, and maybe I wasn’t. I may never know. My memory plays tricks on me all the time, and the best that I can do, some days, is muster a “feeling” about the past that seems true.
I know things used to be different for me. I know I used to be different. Looking at my bank account, and considering the kind of work I do today, compared with 10 years ago, there is a radical difference. Like night and day. And the fact that I am struggling terribly with money these days, just maddens me. It was never like this before. Never. Ever. But now it’s a daily challenge to keep my finances in order and keep myself on track. I manage, but it’s not nearly as easy as it once was.
Money doesn’t lie. That’s the bottom line. And what my money says, is that I’m a very different person than I was before.
Hence the sense of loss. A profound and sometimes debilitating sense of loss. And I am pretty much alone in this sense, because either nobody understands what it’s like to have so much, and lose it. Or they don’t believe I ever had what I once had, in the first place. Or (even worse) they think that nobody deserves to have what I had before, so it was a kind of karmic justice that now I have such troubles.
Loss. Lonely, lonely loss.
But I cannot stay tied down in my depression. I am working my way out of a hole, and I have to handle this alone, so I have developed ways to deal with this whole grief thing.
The first thing I do, is to acknowledge it. Not minimize it. Recognize the experience of loss and grief and mourning as very, very real. And very, very important.
The next thing I do, is understand what it is that I am mourning the loss of.
I recently realized that I can group my losses into two different categories:
Invented Loss – the “loss” of things that I once-upon-a-time decided that I wanted and needed, but I never really did want or need. These are losses like:
false friends (who I once thought were my real friends) who ditched me when I stopped having so much money
possessions that other people told me mattered, but I just didn’t care about
100% devotion and dedication to employers who were more than happy to pull the rug out from under me when I ran into trouble, and
public approval and a sterling reputation, regardless of how sleazy the people were whom I wanted to respect me, regardless of what I needed to do to uphold that reputation
Genuine Loss – the true loss of things that I really did want and need, but couldn’t hang onto, like:
being able to read things and understand them immediately
constant abundant energy
clear, quick thinking and definite decisions
my ability to earn top dollar almost without thinking about it
my ability to learn new things quickly and use what I learned quickly
confidence in my memory – things didn’t used to seem this foggy before (I’m not sure if this is a genuine or invented loss, however, because it could be that my memory was always spotty, I just wasn’t aware of it)
In some cases, it’s hard for me to tell whether my losses are genuine or invented. My memory is a classic case — it really wasn’t until I started working with my neuropsychologist that I realized how spotty my memory was. And in fact, when I think back, there are big parts of my past that I don’t remember — people always assumed that it was because I had been traumatized as a child and I blocked a lot of things out, but more and more I think it was a lot of other things, including a spotty memory during childhood, thanks to repeated head injuries.
Furthermore, human memory is notoriously unreliable, even with people who have no history of TBI. Just ask the cops. People who see the same thing will have different interpretations, and each person will be convinced that they’re right. That’s just how we’re built. It’s just how we are. TBI or no, memory is a tricky thing, so it doesn’t make that much sense for me to be upset over the crappiness of my memory. Who’s to say that anyone’s is any good?
But still — I think the thing that gets me the most is the loss of my old confidence about who I was and what I was all about. So much changed, so much has altered with me in the past years — 8 years, since my fall down the stairs a day or two after Thanksgiving in 2004 — that some days I don’t know who the hell I am, where I’m going, or what even matters to me.
Some days, I wake up a complete blank — I have no point of reference, I don’t know what day it is, what I should be doing, what I want to do… anything. It’s like everything has been wiped clean. Then I’ll sit for a little bit, re-orient myself, look at my lists, and it will come back to me. Some days, it feels like I’m starting from scratch. Completely. With no experiences from before to guide me.
And I miss that old feeling of knowing who I am and what I’m about and what matters most to me. The things that used to drive me — reading and writing and studying and grasping the secrets of my universe… the subjects that used to absolutely drive me are just not there anymore. What’s left? Other things. New interests. Different subjects that draw me in… if I can remember them.
Ultimately, that’s probably the biggest loss I deal with — losing my sense of self, who I am vs. who I think I was — and losing my confidence about who that “self” once was, and now is. The second-guessing, the not-knowing… it’s a lot to learn to handle, and it’s a lot to learn to manage. I will manage, somehow — I AM managing somehow — and do that keeps my mind off my troubles. But some days, it just gets to me.
Like today. Like right now. I have this deep and abiding sense that I have lost something very important to me, but I’m not exactly sure what that is. I’m not sure if it’s one big thing, or if it’s a lot of little things, and as much as I am determined to build back my life, I just don’t know if/how/when I will be able to do that to my satisfaction.
Because building “back” is a point of confusion, to begin with. My memory of how things once were is not great, so where’s my point of reference? My memory of how Ionce was, is also not great, so how do I know if I’ve even gotten “back”? I think the thing for me is having the old feeling again — having a sense of who I am and where I am and how my life is… getting that old sense back. If it’s even possible.
Of all the issues that come with TBI, the grief business is probably the most difficult to handle, because it is so hidden, it is so personal, and it’s hard to find others who understand the extent of your loss. Everyone wants you to move on. Everyone wants you to focus on the positives. Everyone wants you to get back to normal and quit feeling sorry for yourself. But TBI can take from us the very things that make us who “we” are — and when you lose that… even if it’s just for a while… it can be vastly unsettling, and it can linger at the back of your mind, like a jabbering monkey, making it hard to just get on with your life — and do the things that will bring you back to where you want to be.
I’m not saying it’s the end. But grief and mourning for the things we have lost — especially realizing that the loss does matter — is an important part of recovery. And until we really look at it and find a way to deal with it constructively, it can overtake us and run our lives without our even knowing.
That’s what I think about it, anyway. And now, it’s time for me to stave off this depression and get my circulation moving. Time for a walk — perhaps in the woods.