I was going through some scrap paper, the other day, and I came across a printout of a list of things I’d gradually lost in the several years after my latest TBI in 2004. They gradually drifted away, and I thought they were gone for good.
Here’s the list I compiled:
Things I have progressively lost over the past several years
Love of reading books
Going to the beach
Going to the gym
All three of these things were so central to my life, once upon a time.
Then I stopped being able to do them.
And I thought they were gone for good.
Now it’s not like that anymore.
I can do them again.
See? Things can change. It’s taken years and years, but things did change for the better.
Now, I still have my days when reading and going to the beach and going to the gym are the last things I want to do. I’m too tired. Or I’ve got other things I’d rather be doing. But even in those times when I have to force myself to do them (if I must), I can find a way to make it okay. I can find a way to manage the situation – and also manage my own state of mind. The situation doesn’t rule me, anymore.
And that’s the most that I can ask for, really. It’s all I want.
Things have not been turning out the way I expected or planned, lately. Sometimes it’s been disappointing. But I’ve been making the best of things.
I bought some flowers the other night for my spouse.
Turns out they’re allergic to them.
Those flowers are now upstairs in my study, on the desk beside me.
I went out and bought a fresh bunch last night — ones I know they’re not allergic to.
Those flowers are downstairs on the entertainment center. They’re beautiful and they actually look better than the first bunch I got.
So, that’s nice.
I thought I was going to go to the beach at a local lake, a few days ago. I used to swim in that lake regularly, and I’ve been missing it. I took the day off work when the weather was perfect. I had everything planned. I’d swim, and then I’d sit in the sun and dry off and read a book I brought with me.
But when I got there, there were signs telling me I could not swim because of bacteria levels. It’s been dry here. The lake was low — scary low — and I didn’t want to take a chance.
Instead of swimming, I walked around the lake, found a sunny spot, and sat in the sun reading.
And it was nice.
Even if I didn’t swim.
Today, I’m considering telling my boss I want to be considered for a different position. One of the members of my team is leaving, and it would be a great opportunity for me to step into. I’m weighing the pros and cons, thinking about what I’d gain, and what I’d lose. In my current position, I have plenty of freedom and autonomy. I can pretty much do as I please, so long as I show results.
I’m concerned that the other position will have more responsibility, more limitations, more interactions with people I don’t care to interact with. There’s definitely more stress.
I don’t know if it’s worth it.
But I’ll never find out, if I don’t give it a shot.
Trial and error. Maybe I’ll just go for it, and see what happens.
Memorial Day. Thank you to all the vets (living and passed on) who have sacrificed so much for us. We literally would not be here without you.
I just wish you had a nicer day, instead of all the rain and cold.
Then again, if you’re like me, you welcome the downtime. And you can use a break from the rest of the world. This is your day. You should enjoy it.
I’m staying off Facebook today. Twitter is another thing, but Facebook has gotten too volatile for me, of late. I need to rest. I need to sleep. Nap. Take it easy. And let my frazzled sympathetic nervous system chill from all the fight-flight. Just chill.
I worked out more strenuously, over the weekend. So, now I’m sore. And that’s good. It means my body needs to rest, and I’m more than happy to do that. I did some balance exercises this morning after riding the exercise bike, just to get myself woken up. I was going to ride a long time on the bike (I had extra dessert last night). But I got tired.
Yeah, I need to rest.
So, that’s what I’m doing. I have a bunch of reading I want to do, and a bit of writing I need to do, as well. Ideas I’ve got going, which I need to continue to develop. The nice thing is, I can just let them develop and not make myself nuts over it all. This is a big change for me, and it hasn’t been an easy one.
For years before I fell in 2004, I had a number of my own businesses going in addition to my 9-to-5 job. I was quite prodigious, I have to say. Always on the go, always cooking something up. And I created some pretty cool products and services that other people really got some use out of. I was part of some pretty exciting ventures over the years, and even though I had a ton of fatigue and sensory issues all the time, I was able to power through them and keep going on the adrenaline alone. It was so exciting, and it was very satisfying to be part of teams working “on the sly” towards common goals.
After I fell in 2004, I couldn’t keep up the pace. I tried. For years, I tried. I really pushed myself to continue to code and be involved in events and ventures. I hatched all kinds of startup plans, and I went so far as to start a formal business for one of them. I had project plans for about 20 different ventures, most of them around selling information and spinning books off into videos and online courses.
But I couldn’t get any traction on them, I’d get confused and discombobulated and turned around… and then frustrated and angry and difficult to live with. So, about 4 years ago, I started backing off on a lot of those things. And I started culling the list of ventures I had planned and waiting in the wings.
It was a hard change, because DOING BIG THINGS was always such a part of my identity and my sense-of-self. And no longer having a full roster made me feel lost and disoriented and un-moored. Like I’d been cut loose from my anchor and set adrift in the big, wide sea.
But you know what? After a while, I realized that it was a huge relief for me to not have all those things constantly “cooking” in the background. And I realized I could actually start to relax. I became less and less reliant on Super-MEGA-PRODUCTIVITY for my sense of well-being and direction, and I actually gave myself a chance to catch up with myself.
It’s taken years for me to feel more comfortable with this — and I have to admit there are times when I revert back to my old over-doing ways. But nowadays, it comes more naturally for me to plan less, rather than more. And in the end, whatever needs to get done, gets done.
Today, though, not much really needs to get done. I’m chilling out. Relaxing. Giving my body and mind time to catch up with themselves. Without pressure. Without agenda. Just so.
Confession: I was not at my best, this past weekend.
The heady combination of two extra days off that got me revved with all the possibilities, along with a pressure-filled trip to the doctor and interpersonal/political dramas with my spouse’s work and not getting enough sleep, all pushed me towards fight-flight mode.
And we all know what that does to higher reasoning. It makes it that much more difficult.
On top of that, it cut into my reading and comprehension abilities.
I’ve found myself — in the past weeks — skipping letters when I’m writing longhand. I will write a word and literally leave a space for it. I’ve been marking up instances where it happens — underlining and overlining the missing letters, and putting a dot in the margin, so I can find it again. In the image above, the sentence reads:
When we tell our tales, the very act of being listened to causes our perception to shirt – and the story is no longer only ours alone – it belongs to us all.
Missing “o” and missing “s” in the same sentence. How ’bout that…
I’ve also been noticing some changes to my reading and comprehension. I literally mis-read words. They literally look like different words to me, which is quite interesting.
So, a sentence that says, “Results indicate that prolonged exposure to high lead levels in water may result in cognitive degradation”
might read as “Results infer that preferredexperience to high lead levels in wafers may result in cognitive defamation.”
And as I tend to be somewhat literal in my interpretation of words, the mis-reading of words leads to misconstruing the meanings. And so my understanding of what’s right in front of me is not at all what it should be. But my brain is telling me I’m 100% on-target. And frustration and irritation ensues, because I’m trying to make sense of something that’s clearly nonsensical — thanks to my willful brain.
This seems to be new, although I wouldn’t swear to it. It may just be that I’ve been more active lately, I’ve been doing more writing and reading. It could be, I’m just in too much of a danged hurry.
I know that plenty of people are prone to mis-reading information and mis-interpreting it accordingly. That goes with the human condition. The disadvantage comes, when we’re not aware of it, and we insist that we’re 100% correct and right and all that. And we refuse to budge, like so many sneetches in the Dr. Seuss book.
I got a good look at my own limitations, last night, when someone challenged me on my interpretation of some papers I’d listed. Taking a second look — and third, and fourth — I realized they were right. My first couple of readings took place when I was short on sleep and long on frustration, and the things I said about what I thought I’d read, were not the most considered.
And that’s a problem. Because when we discuss research and science and findings and the impact that application could have to the greater population, taking up the pitchforks and torches is a problem. It puts people on the defensive immediately, and then the chance of any sort of collaboration is decreased.
Which is the exact opposite of what I think needs to happen. Especially with brain injury & rehabilitation research.
So, now I have the advantage of knowing that my brain was up to all sorts of antics over the weekend. And I have the advantage of knowing that words actually register differently to me. Time to step back, take a second look — and third — and fourth — and more, if need be — and find a more constructive way to conceptualize and discuss these matters.
I needed to find space on my bookshelf for the two books I got yesterday. So, I moved some things around, rearranging the books I have into a more orderly fashion.
I have been collecting titles over the years. Not a huge number, just a handful of decent scientific / medical / physics works, each year. Some of them have been popular successes, others have been acclaimed in their own circles, which is really what matters most to me. And some are obscure, but have a lot of really great ideas behind them, which have really enriched my life.
The thing with me is that I’ll get really interested in a topic, pick up some books that go into that topic in-depth, and I’ll read them to see what’s there. But my associating mind tends to jump around from concept to concept, and it also connects the dots with other books I’ve read and concepts I’ve encountered, so I veer off course. I make some really useful connections that help me better understand my life and the world around me. But I rarely finish books I’ve started.
Part of it is because I’ve already made a conceptual leap into another realm.
And part of it is that I have seldom read a book that actually had a strong closing. Most books I’ve read have been let-downs in the last few pages. It’s almost as though the authors just kind of gave up on the whole thing, because the writing and editing process took so damn’ long.
Anyway, I’ve shuffled the books on my bookcase to keep the neurology / neuropsychology volumes together, and put the mythology / archetypal works in their own space. I’ve got books about alternative teaching approaches, as well as quantum physics. And anatomy. Let’s not forget the anatomy. I even have a set of Netter’s anatomy flashcards that medical students use to prep for exams.
I should really get those out and “play” with them more.
I do love anatomy. It fascinates me, how everything is put together and works as a complex whole.
So, that’s the excitement for the day.
It’s the weekend. I need time “off the leash” to just do my thing, go at my own pace, and catch up with myself… instead of what the world demands of me.
Last night, two books I ordered arrived in my mailbox. Very, very cool. I went on a “shopping spree” on abebooks.com a couple weeks back, looking for neuropsychological rehabilitation titles (that weren’t over $50 – not an easy task). After combing through listings, I selected a couple. I got both of them for under $25, which makes me incredibly happy.
And they came in the mail yesterday. As it turns out, it’s even better than expected, because they are in good shape, and they are hardcovers. It looks like one of them was a library book, because it’s got the call number taped to its spine and a checkout log inside the back cover. That’s cool. I don’t mind. The book is in good shape, and all the people who checked it out over the years were actually responsible about it.
So, now I have some reading to do. I used to read constantly — always had my nose in a book when I was a kid. My home office is full of books I have bought and read. It’s always been my preferred way to chill out and get my mind off the rest of the world. Plus, I’m always up for learning something new.
But when I got hurt in 2004, I couldn’t read anymore. Not books, anyway. I could read short blurbs, but remembering what I’d read a few pages (or chapters) back, and putting it together with what’s right in front of me… that was out of the question.
Over the years, I’ve pieced it back together again. I’ve read countless technical and scientific papers (most of them having to do with TBI and neurological issues). I’ve read more social media posts than I care to think of. I’ve read a lot of magazine articles online. And of course, there’s the daily deluge of emails that have to be read and responded to.
So, it’s not like I haven’t been able to read anything – just not full-length books.
A few years ago, though, that ability started to return. I had to work at it a bit, and I had to step away from my practice and come back later, many times over. But the practice paid off, and I got it back.
And now I have my books. My nice new books about neuropsychological rehabilitation. Just a little light reading…
In three weeks, I will be at my new job. It seems surreal. I am finishing up with my current job, just trying to get all my “ducks in a row”… along with rolling with all the change that’s going on in the organization.
It’s a hard time for most people there. And it’s hard to not get pulled down into their frame of mind.
So, to counter-act that, I am expanding my skillset and gearing up for the next stage in my career. I’m taking some courses that will get me prepared for my new job — and my new career. I’ve always been out on the “front lines” of my industry, and this is giving me the chance to get out ahead of it again.
It’s pretty amazing. Exciting. And the beauty part is, the line of work I’m getting into is so new, there are no real college degrees in it, so the fact that I don’t have a Bachelor’s or Master’s doesn’t work against me. Nobody has that, yet. It’s all about practical results. Being able to do the job. Produce the numbers. Meet the need that my employer has.
I’ve got them covered, in that respect.
Anyway, I’m feeling like I have a new lease on life, with this new job. I’m finallygetting out of the rut I fell into, when I crashed my head down those stairs in 2004. It’s taken me 10 years (and a few months) to get myself functional again the way I want to be… the way I need to be. And I still have a ways to go.
I can get there. I’m not going to be held back. I can use the same sorts of skills I developed in my TBI recovery to recover my career, as well.
Now, this isn’t all happening overnight, and it’s not happening in a vacuum. Nor is it some situation where my fairy godmother or a genie from a bottle is showing up to shower pixie dust on me. I have put in a lot of hard work, over the past years, to get to this point. I have been studying and studying, working and working. Back when I was injured in 2004 until around 2010, I was unable to read books the way I had before. I had always been an avid reader, but I lost the ability to keep information in mind long enough to go from page to page. I would literally lose the train of thought if it went on past several paragraphs.
So, I quit reading, period. I read websites, in bits and pieces… news… etc. Whatever I could, without wiping myself out. I studied TBI and the brain, because that was the only thing that held my attention. It was the only motivated reading I could do, and even that was in fits and starts. One of the books that changed my life — The Brain That Changes Itself — I had to read in bits and pieces. In fact, I’m not sure I ever completely finished it (I should do that now).
I surfed the web and researched brain injury. I struggled to find really good sources of information — partly because there weren’t as many out there as there are today, and partly because it was hard for me to sort through all the search results and decide what was helpful and what wasn’t.
I also studied trauma and its effects. I managed to read a few books about trauma, but it was slow going. I had to find summaries online to really make sense of things.
Over time, my ability to read improved — ironically it came back after I had given up on it completely and decided, “Well, I’ll never read again…” It was slow going — fits and starts. But eventually it came back, and I worked my way back slowly.
One of the books I read (Aging With Grace – a study of nuns who outlived the surrounding population by 10-20 years and stayed sharper and functional longer than was typical for their geographical area) showed how “idea density” can contribute to holding off Alzheimers and other kinds of cognitive decline. Basically, with “idea density”, the more ideas that are packed into a sentence / paragraph, the more “dense” are the ideas. And I found out that scientific research papers had a lot of idea density. Not the most, but a pretty decent amount.
So, I started actively looking for scientific papers about TBI that related to me. Long-term outcomes. Childhood head trauma. Behavior issues. Mood disorders. Mental health issues. Sports injuries. Recovery approaches. Rehab. Frontal lobe and executive function. Mindfulness. I specifically searched for information that related to me, that would be useful and meaningful… and I could put to good use.
All together, over the course of several years, I found and downloaded over 300 research papers about TBI and TBI recovery. There were a lot more that I found and did not download. I did not read all of them from beginning to end, but I did read the summaries and abstracts, and sometimes I read the discussions recapping all their findings.
That was the best rehabilitation I could have asked for, because it was intimately related to me, it was self-directed, and I believe it even helped with my gist reasoning. When I did read the whole papers, and then I read the abstracts again, I could piece together the central theme of the data that was collected, and learn to screen out the things that did not matter. So, many, many researchers have indirectly contributed to my recovery.
Slowly but surely, I’ve felt my abilities improve. It took time, and it took a lot of diligent effort. Each and every day, just about. Each and every weekend. On my free time. During my not-so-free time. I have had a total life orientation towards TBI recovery that has paid off.
I never felt like there was a choice for me. I have been given a lot of gifts in life, and I believe it’s on me to ensure that I return the favor to the universe — or whoever else has helped me. I really feel that sense of responsibility. Even when I’ve been at my worst, I never lost sight of that. I knew I had to get back… I was on a mission.
Now I can read books again. And I can remember what I read, pages and chapters later. Miraculous. And I’m gearing up for my new job by reading some more. And thinking. And taking some classes. One class I started, but I’ve realized it’s best that I do another class first, so that I have a better foundation. I also need to strengthen some of my skills, including math. Geometry has always made perfect sense to me, and I was doing advanced fractions when I was in elementary school, years before most kids even had a concept of fractions.
It all just made perfect sense.
But over the years, that sense got kind of trained out of me, because nobody was really qualified to help me excel. They were so busy trying to get kids “normalized”, and I was so un-normal in some ways, that they focused on my weaknesses, rather than my strengths. And in the process, any latent ability I had for advanced materials got lost in the shuffle because of my attention/distraction difficulties, behavior issues, and trouble understanding what people were saying to me. I kept getting punished because I simply did not understand.
Now things are different. I’m all grown up. At least that’s what they tell me 😉 And I have to let go of that earlier conditioning. I’m not stupid. I’m just out of synch with a lot of the world. And now I have a new chance to start fresh in a line of work that suits me so well, it’s scary. I’m going to my dream job in less than three weeks, and I want to be ready for it.
So, I’m studying. I’m finding more papers to read, that have to do with my new field, rather than only TBI. I’m also pacing myself, taking my time, not getting ahead of myself and being very systematic about my approach. Because it matters to me so deeply, and I am so grateful for this opportunity to learn and grow.
On top of it, I have an appointment tomorrow with a trainer who focuses on strengthening specific neurological features. I’ve been reading about this method over the past couple of weeks, and I’m very excited to see what comes of our meeting tomorrow.
I have been looking at my WordPress stats, following up on who has recently followed this blog.
In the last 2 weeks, 24 of you have joined me on this journey (22 via WordPress, 2 via email), so welcome. I don’t mean to be rude or take you for granted — please know that I appreciate you following, and I hope I bring something positive to your life.
I’m about to go out for my morning walk on an amazingly beautiful day, and before I do, I just want to say:
Whatever brought you to this blog, was probably for a very good reason. People come here all the time, not knowing what they will find, then they discover something that helps them. It’s both by accident, and by design. I don’t have any particular “content strategy” in mind, other than writing about the things that matter to me, as a TBI survivor dealing with an invisible set of difficulties, a regular person trying to build the best life possible, and as a member of the larger community who is sure that I’m not the only one who feels this way.
There are times when I am annoying, I whine and bitch and complain and am not my best self by any stretch of the imagination. I can be petulant and cranky and self-absorbed, and I can be a real trial at times — especially to myself 😉
Be that as it may, I have an incredible amount of goodness in my life, and I want to share that experience, as well as show others how I’ve gotten there through a combination of hard work and perseverance, and using my noggin to determine if what I’m doing is actually working. The times when I fail are the biggest lessons — and at times the most valuable.
I’m not afraid to fail. I just get a little tired of getting back up all the time.
But then, don’t we all…?
I know I am not alone in my frustrations and challenges. I’m human, and whether you’re dealing with a brain injury, another sort of injury, past trauma, ongoing difficulties in your life, or a hidden condition that others can never suspect is going on, we are all in this together, and we all have so much to share, if we take the time and put forth the effort.
The effort is not easy. But it is worth it. I start most of my days on this blog, because I remember all too well what it’s like to go through life in pain and frustration and despair, and feel so terribly alone. Some days I’d rather be doing something else than typing into a machine, and I can go for days without writing a word. But I know this is important — to me as well as others who find their way here and really value hearing someone else talk about life in ways that they can relate to.
That happens all too seldom. But I hope it won’t happen here.
So, to all of you — followers, as well as new readers from all over the world — thank you for your support. I’m happy you’re here.
I started off this weekend, last night, planning how many things I would do today. The parts of my projects I would undertake and finally complete — so I can move on to other things… the tasks from work that I didn’t get around to — so I can get them off my mind… breaking down the hours I’d spend in my head, so I would free up some time to do other things.
Now it’s Saturday morning, and all I want to do is go about my life in a continuous flow, not blocking off time to do anything specific, not allocating hours for one definite undertaking or another. I just want to flow. See where the day, the weekend, takes me.
It’s raining today. Gray and a little dreary. It’s chilly, too. Not the best weather for running errands, as everyone will be out and about in their fast and powerful cars (think about how much more powerful and speedy our cars are, compared to just 20 years ago), running their errands, on a mission, taking care of business, after the business work week has ended.
That’s not where I want to spend my time. Not in the least. I want to steer clear of that whole big, busy mess, and just have some peace. Just have some peace and quiet.
That’s what I want most. My spouse has been on a rampage for the past month, getting ready for this business trip. It’s been very trying, to tell the truth. Every spare moment has been caught up in them spinning their mental wheels about things that don’t actually exist. And dealing with business associates who are even more delusional than they are. What a strange thing, to see people who are so capable of living well, getting caught up in lives that don’t actually exist.
Other sad things — a friend of a friend died suddenly last weekend. Another friend of a friend passed away from cancer that went undiagnosed for two years. A friend of a friend was raped. And a good friend of mine is struggling with health issues. Actually, a number of friends are dealing with health issues — among them, mental health. And that’s a particularly tough one, because it’s hard to know how to help.
But to get too caught up in that sadness, is a trap I can’t afford to dwell in. It’s been like a martial arts exercise, day in and day out, dealing with the depression and dementia and delusions and the plain old craziness that goes along with one human error leading to another… to another… to another… each one snowballing into a rolling batch of crazy.
Lord, yes, I do just need to take a break this weekend. I need a break from everybody else’s stuff that has nothing to do with me, really. I need to not get bogged down in the sadness that others feel… not stay caught up in others’ drama, rehashing it in my own head… not staying stuck in the whirlpool of others’ imaginary crises, spending a lot of time thinking about it. In my own life, there is no such thing, and if I weren’t living with someone who brought that to me each day, like a weird-ass soap opera, I wouldn’t even know it existed.
So, this weekend, I’m going to live as though it never did exist. Because it didn’t, outside of the imaginations of everyone involved.
I’m going to read the published personal notebooks of famous writers. I’m going to catch up on some of my own reading. I’m going to work on some of my own writing. And I’m going to live my life… let it just go, without trying to control it or slow it down or stop it. Just let it flow.
And leave it at that.
If I’m tired, I’ll lie down and sleep. If I’m thirsty, I’ll drink water or hot tea. If I’m hungry, I’ll … stop and ask myself if I’m reallyhungry, or if I’m just low on energy (in which case, I need to sleep), or I’m just bored (in which case, I need to do something that piques my interest). I may do some cleaning. I may clear out my bedroom and get rid of the dust bunnies. I may run out and get an air filter for my bedroom, which has a bizarre amount of dust in it. The main thing is that I’m moving at my own pace, without the intrusion of others’ delusions.
I’ve got enough delusions of my own to deal with, thank you very much.