I didn’t feel like exercising this morning. I just lay in bed and pulled back the curtains… watched the gentle rain fall and listened to it pinging on the chimney cap outside my window. It’s a beautiful day to stay indoors and just chill out… reading, thinking, blogging… just chillin’.
But if I don’t get up and get my circulation pumping — get on that bike and ride — I’m no good for the rest of the day. I bypassed my morning ride, and I was dragging all day. And that was no good.
So, after I lay there a little while, I got myself out of bed and went for my ride. I’m not sure how long I rode. It was at least 20 minutes, I think. Nothing huge, just enough to wake me up and work up a bit of a sweat. Then I had my big glass of water and made my breakfast. I didn’t lift this morning, because I’ve been lifting and carrying heavy objects for days, now, and my body needs a rest. As much as I’d like to have that morning “pump”, common sense prevails.
I know how unproductive it is, when I overtrain and overdo it, so I’ll use my good sense and not do that today.
Yesterday, I swam again. It’s good. I only swam once last week, in the pool at work. I managed to get in a friend’s pool over the weekend and have a little bit of a swim on Sunday, but it was no workout. Just a cooling-off, really.
When I swim at work, it’s a whole different thing. I go around noontime, when everyone is either eating lunch, or they’re in the gym. I usually have the place to myself, but yesterday there was someone else there. I like to swim hard from one end of the Olympic sized pool to the other, then float on my back and relax, letting my heart rate and breathing go back to normal. It’s probably the most relaxing thing in my day, to just lie there and float… weightless, feeling myself floating free… The other person in the pool looked at me strangely, and I wonder if maybe they thought there was something wrong. But after my heart rate and breathing were back to normal, I went back to swimming… and they jumped out of the pool and went back to their work day.
I’m going to see the neurologist again today, to look at test results. I think this whole thing has been a boondoggle, quite frankly. But I had to follow up on it, because it would be remiss for me to overlook a serious problem that could impact myself and my spouse, on down the line. I’m the sole $upport for us, so I have to take care of myself and do my due diligence wherever possible. I don’t like it, but it’s gotta get done.
So, I’m doing it. I’m not sure what’s going to come out of this. I’m tempted to just bag it and say, “Okay, I have these issues, and you’ve been unable to medically find anything significant to address. I know they’re issues for me, and I need to manage them, so since you’ve got nothing to offer me, I’ll take it from here.”
The medical establishment doesn’t have the nuance and sophistication for people like me, so I’m not going to waste any more of their (and my time) with requests for help that they’re unprepared and unable to give.
Time to just take things into my own hands, and be done with it. I’ve given it my best shot, but it’s time to call an end to this search.
It’s taking up way too much time and energy, and I just don’t have the time and resources to keep chasing this the way I have. Anyway, I’m really just following this up because of advice from my neuropsych(s). I would have just left it alone and dealt with it, myself, but they’ve been so keen on me figuring out the medical piece of this, so I don’t fall.
The crazy thing is, months ago (and before I spent lots of time and a bit of money on this), I could have predicted this outcome. But then, I’m the brain-injured one, so what do I know?
Well, maybe today will see the end to this. If I ever get concussed or brain-injured again, I know where to find these people. But until then (and hopefully that never happens), I’m just going to get back to my life. It’s been interesting, but it hasn’t been that productive.
And frankly, exercise and a good diet, getting rest, keeping active in my life, and really diving into my life experience to learn as much as I can, is turning out to be the ticket to my ongoing recovery.
So, this new neuropsych is kind of a pain in my ass. And that’s fine. Because the last one could be a monumental pain in my ass, sometimes, and it did me a lot of good to meet with them regularly.
Why, pray tell, would that be so? you may ask?
Well, because dealing with people who are completely off-base is good for my reasoning faculties. And it also shows me how on-track I really am, when someone I’m talking with is clearly not recognizing what’s right in front of them.
This new neuropsych, as I’ve mentioned, is 30 years younger than my former neuropsych. They are 15 years younger than I. And it shows. One of the ways that they really show their age, is that they don’t stop to listen and really understand what’s going on with me, and they jump right into fixing things before they have a strong grasp on what the situation is.
For example, I’ve been talking about how I need some help getting to-do items off my list. I have a ton of things I’ve been wanting to get done, and many things that I intended to do in the first 5 years that I had my house. But less than 2 years in, I fell and got hurt, and I was “checked out” for some time after that. I’m just now — almost 12 years later — getting back to a level that’s near (in some ways) to where I was before. In other ways, I’m nowhere near, and I’m not sure I’ll ever be again. But the basic gist of it is that I need to gear up and take care of things that have been languishing and neglected, lo these many years.
And what does my neuropsych give me, but a sheet of paper where I should write down my goal, figure out my motivation, and then do a visualization about what the reward will be, if I get it done. And then write it down in my planner, and just do it… after doing a little visualization about how rewarding it will be to get it all done.
Oh. My. God.
Someone please help me.
I am so beyond that rudimentary approach, and I need something completely different. But when I tried to explain that to them, they just dismissed me — and insisted that visualizing rewards is a cornerstone of making progress.
Okay. So, that’s their opinion. That’s fine. There’s some truth to it. But I really need help just walking through my priorities and seeing where everything fits in my life. I don’t need motivational help. I need organizational help — and getting my head around the big picture of what I’m doing — and why.
It’s not just about getting things off my plate. That’s important, so I can free up my thinking to handle things that are bigger than a breadbox. But it’s also about prioritizing and getting my head around the complexities of my day-to-day.
Unfortunately, I don’t have a lot of confidence in them, with regards to that. I’m not sure I have a lot of confidence in anyone in the healthcare professions, right now. At least, not that I’ve encountered. I’m sure there are excellent doctors and providers out there, but the only one I found who could actually work with me effectively died last year. And even they didn’t exactly do a bang-up job of covering all my bases.
Ultimately — and this is the amazingly profound irony of it all — it’s the people who need help who are on the hook for making sure we get what we need. The very people who don’t have the comprehensive knowledge about all the physiology and possible conditions that might be at work… and who are having trouble thinking and functioning, to begin with… are the ones who have to manage our situations, be our own advocates, and so forth.
If nothing else, as frustrating as my situation is, it’s good practice for me. I’m not sure I’ve ever felt like people could really wrap their heads around my situation, anyway, so this is not new. I just had unrealistic expectations that I could pick up where I’d left off with my old neuropsych and start there with this new one.
Nothing of the kind. They’re even farther back than the last one, and I feel a bit like Kevin Costner’s character in Bull Durham where he has to train an up-and-coming athlete who has a better chance than he at going to “The Show”.
But I guess that’s how things go, as you get older. I’m just not used to interacting with people younger than myself – especially healthcare providers. But news flash – that’s going to continue to happen, so I might as well get used to it.
Okay – pause – let’s see how my memory for that starting image is doing:
Not too bad — I just forgot the hash marks on the left line, and the circles are a little far apart, with the lines longer and the circles smaller.
I’ll try again later.
Anyway, it all comes back to the idea that when it comes to our health and recovery, we are often on our own. It’s sad, but true. And some days, I feel as though I’d be better off just not even dealing with any trained professionals, because the benefit I get isn’t equal to what it costs me.
Sometimes, it is equal. But you know what? Those are the times when I pull out all the stops and put my focus into my own direction and my own program, just using the experts as a reference point.
I’ve got a few weeks before I see them again. And I’ve got plenty to keep me busy. I’ll figure something out, I guess.
Don’t get me wrong. I have the utmost respect for my new neuropsych. They have great intentions, they are smart — brilliant, really — and they are driven and determined to help people who are in need of assistance. I’m lucky to have been connected with them.
Here’s the thing, though — they’ve got 30 years less experience than my former neuropsych. And that really shows. It shows in their pacing, their approach, their focus. It’s my understanding they’ve been working in clinical settings that have been largely academic, for most of their career, so far, and they’re relatively new to individual clinical practice.
My former neuropsych had 40+ years experience in clinical and rehab settings. I believe they once ran a rehab center, in fact. Or two or three. Anyway, they had decades of high-level experience in rehabbing brain injury survivors, and I benefited from that for the past 8 years or so.
Now I’m working with a “spring chicken” — it’s not the most professionally respectful term, I know, but that’s how they seem to me. They’re 15 years my junior, which just amazes me… And it shows.
Good God, do they have a lot of energy. It’s that kinetic, over-the-top-can-do kind of enthusiasm that people have before they hit a lot of walls, personally and professionally. They have an exuberance and optimism that I used to have, too.
Then I got hurt. And life happened. And a lot of crap came down the pike for me. And now I am where I am now — with a pretty big deficit where all my own exuberance and optimism used to be.
Although… maybe that’s not entirely true. Maybe I still do have that energy — just not to the same willy-nilly degree that I used to. Or maybe I do, and I just need to bring it back. Access it again. Play off the energy of this new neuropsych, who is in some ways like a breath of fresh air, compared to the dour pessimism and personal cynicism that sometimes “leaked through” with my old neuropsych.
Oh, another thing just occurred to me — I’m working around a lot of people who are my age or older. And that’s affecting my perspective, too. I work in an older environment, very established and staid, and compared to my peers, I feel like a spring chicken, myself.
So, I’m balancing out the energy of youth, as well as the balance of age. My new neuropsych is clearly still learning about things like how to pace their speaking, and how to give me space to sort things out. They move too fast for me, at times, and it’s frustrating.
But it’s good to get pushed. Again. After years of being accommodated. I need to be pushed. Quit feeling sorry for myself. Really work on my reaction time. And get back to my memory exercises. See above.
Here, let’s try to draw what I had at the start:
Not bad – I just had the proportions off a little bit, but all the elements are there. The right circle with the “x” is higher than it should be, and the vertical line off it is longer than the original. Also, the hatches on the left line are longer than they should be.
I’ll have to try again later today, and see how it goes.
Gotta get back to doing my exercises. Get myself going. And continue to make progress. Keep moving forward. Keep at it – give myself time to rest – but keep at it.
I had a full and productive weekend. I caught up on a number of things I’ve been needing to get done for weeks, now. I also got some things done around my yard that HAD to get done before it rains later this week. I feel pretty good about getting those things done. It was not a small task, but I did it. Woot.
Some important-but-delayed things I did not get done. But I got enough important things done, that it offsets the disappointment. And it gives me more motivation to get moving on those things I didn’t finish (or even start).
I’ve also been working on my breathing. Focusing on relaxing and feeling where my body is “at” — where I’m tense, where I need to loosen up, where my breath seems to have stopped. I need to keep it moving, not get stuck in fight-flight, which is what happens at times, when I hold my breath unconsciously.
Years ago, I was very intent on working with my breath and getting in touch with my body, so I could more effectively manage stress. It was a regular part of my daily practice, and it did wonders for me. Somehow, I got away from that. I got caught up in everything else, and I was in serious survival mode for several years, while I dealt with creditors and paid down my years-salary-worth-of-debt. I lost sight of the big picture with my approaches, and while some things improved in my life — like my job situation and my perception of myself in the professional world — other parts fell by the wayside.
Including my breathing. I’m working on that again. And swimming is a big part of it — since it involves both movement and breathing. And it’s great exercise. Just great, great exercise.
This week is a pretty big one for me. I have my weekly neuropsych appointment, when I work on problems with making progress and getting things done. I have a whole lot of things I need to get done on a regular basis. I’ve been doing them for years, I just haven’t been doing them as efficiently as I should – and it shows. I may need to take some of them off my to-do list and put them on my ‘would be nice to do’ list… and then not worry about them till later.
One project, in particular, has been drawing a lot of energy off the other projects I really need to do. It’s training materials for people who are in a certain part of the job market and don’t understand how things work.
The thing is, if I start on that, it’s going to be pretty all-consuming. It’s not just some training materials — the whole plan also involves public speaking, public appearances, and a lot of writing and publishing and networking. And I just don’t have time for that, now.
It’s a great prospect for me, and it could bring in a fair amount of money for me, but I have so many other things I want to be working on, I can’t really afford to spend the time on it, to do it full justice.
So, I’m tabling that — putting it on the “back burner” to simmer for a while. I’m really treating that like my backup-plan “B”, in case I lose my job or the 9-to-5 thing doesn’t work out for me. That would be the ideal time to cut this project loose and set it free — when I actually have time to fully devote to it.
I’m in the process of cooking up a number of other projects, many of which I find really inspiring and motivational. So, I need to make room for them, and find where I can fit them, while not burning out. I’ll work through this with my neuropsych this week — and in later weeks, as well.
In addition to that, I’ve got a town meeting this week, when we’ll discuss the fate of a company that wants to expand. I’ve had my ups and downs with the board I belong to — they don’t always seem to respect me, and they sometimes ignore me or talk over me. People in town have laughed at me, when I asked one of my “stupid” questions, which was completely disrespectful (and ill-advised, since the board I’m on makes decisions about what people want to do on their properties, and I’m not the sort of enemy you want to have). I let that go, though, and I continue to serve on the board. It connects me with the larger community, and it also puts me on good terms with the local authorities. It’s a lot easier dealing with the local police, when they run my personal details and realize I’m also an “enforcer” who serves the public good.
I probably would have gotten in more trouble, had the friction not dissipated when the cops realized who I was and what role I play in local government.
Another thing is, I’m seeing my neurologist later this week to talk about the headaches and my other issues. Actually, I’ll be seeing their assistant, as the neuro proper has kind of washed their hands of me. They didn’t find anything on the MRI (even the DTI-MRI) that gave them any clues about what was going on with me, and since they can’t diagnose me with anything, how are they supposed to treat me (and bill the insurance companies)? I feel for them, but I don’t appreciate being pushed aside.
Fortunately, while I was sorting through my stack of insurance statements and various papers and notices, I found a promotional flyer for one of those services that gives you access to second opinions by highly qualified physicians and healthcare experts. I’m going to check in with them, to see if they can help me, because this current neuro approach is not working. I really don’t need to take hours out of my day to drive to an office where I’m just going to be brushed off, and my concerns aren’t going to be taken seriously.
Just as an example, the neuro-in-charge told me that my concerns about falling and having a worse TBI than the one I had before, were unfounded. They told me that concussions are NOT cumulative, which contradicts just about everything I’ve read… and after weeks of consideration, I have a lot of reservations about their abilities and willingness to be of help.
Then again, I do fit the profile of someone in the “miserable minority” — I’m very much like the first individual profiled in that seminal 1996 paper, which touched off a chain-reaction of further studies and diagnostic / treatment approaches to folks with lingering post-concussive symptoms. So, maybe the neuro was referencing that profile.
My own feelings of insult and dismissal aside, the “miserable minority” approach may have done more to perpetuate misery, by steering away from the functional and structural issues that come along with traumatic brain injury, and focusing so deeply on the psychological factors.
I’m not saying psychological factors don’t come into play. I’m saying there’s more to it than that, and it’s my belief — after many, many years of unfruitful and counter-productive therapy approaches, followed by amazingly fantastic progress after far fewer years of basic functional retraining — that a focus on psychology, without addressing the underlying neurology, has done more to perpetuate PCS than anyone would guess.
Of course, people mean well. They’re just misguided. And they’re so caught up in proving that they’re right, and they deserve a place at the rehabilitative table, with all the respect due highly trained professionals, that they “circle the wagons” and get Balkanized — cut off from others, hostile and uncooperative and territorial, and always ready to battle over some piece of territory.
Unfortunately for those of us who need their help, we get sucked into that dynamic, and that’s no good for anyone.
But there it is.
There it is.
Friday is free and clear for me — no meetings, no appointments. I do need to do some shopping this week to pick up some black pants for my business trip next week. I’m going to be presenting at a client conference, and I need some black pants. Or maybe I don’t need to go shopping. I have a couple pairs of black pants I can probably wear. They’re just not as casual as the conference wants us to be. It’s definitely “dress down” — although we still need to present in a professional manner.
I also need to practice my presentation. I’m doing one technical talk that’s only about 10 minutes long, and I’m going to be “on call” to answer questions about the company’s full product line, which is a pretty extensive collection. I just need to have a quick 2-minute “spiel” I can launch into, for a variety of topics. That’s probably the biggest undertaking of this week, and I’ll be practicing while I’m driving to and from work, as well as to and from my appointments.
Memorizing things used to be easy for me as a kid. I can still memorize things, if I go over them 30+ times. 35 times seems to be the magic number, but I don’t have that kind of time — 35 times for each of the 10 different spiels is 350 separate practice sessions. At 2 minutes apiece, that’s 700 minutes (11.66 hours), minimum. I can break it up, sure, but it’s still a lot of time to spend.
Yesterday, I decided to do things a little differently, and go for my walk in the woods before I started writing. I intended to spend most of the day working on a piece I started about “chronic blogging”.
I had a lot of good ideas in the course of my walk, but by the time I got back, there were SO many, that I just couldn’t keep up with them all.
So, I went back to bed.
Turns out, my daily routine is a routine for a reason – it works.
I really need to stick to my standard approach of exercise, followed by breakfast, followed by writing… followed by either going to work, or having a good hike. If I hike before I write, my brain gets too muddled, and I lose the benefit I got from the vigorous exercise I did earlier.
Walking is exercise, yes. But it’s leisurely. And it’s not always conducive to my writing. I need to trust my gut and just do the thing I intended to do, to begin with.
Another thing that works for me, is talking through my daily life and logistics with my neuropsych. Not delving into my emotional landscape. Not digging up all sorts of old hurts and pains to “heal” them. I totally understand how that’s helpful. But for my purposes, I really need to focus on my day-to-day and manage the things that are functional problems for me.
I’ve been under the weather and feeling wiped out, in part due to my new NP’s fondness for “exploring emotions”.
Good God. Please save me.
Anyway, I’m not doing that anymore. I’ll set the tone and set the agenda by myself. This NP is quite a bit younger than me, and they’ve got a youthful vigor and excitement for “the hard stuff”. Please. I’m an old warhorse. I’ve done the hard stuff. Now I just need to function.
Yesterday was my last session with my old neuropsych. They’re relocating to a different state and semi-retiring, and they don’t do phone/video consultations, so it’s time to move on.
This is a pretty huge loss for me. Their help really made it possible for me to get through some tough times and mend my broken life. In many ways, they were more of an advisor than a “rehab therapist”, as they had a ton of life experience and in-depth knowledge, and they knew very well how to help me.
Even the times when they were off-base with their approach (which happened now and then), it really helped me to think things through and reach my own conclusions. In some ways, the times when they were wrong, were even more helpful than the times when they were right.
Anyway, it was an emotional parting. I will really miss them.
At the same time, I need to keep moving forward. With this new neuropsych.
I want to do things a little differently, this time. I’m in a very different place than I was in the past, so I’m able to be more creative with my thinking. I’ve decided to put down in writing the things that come to mind, and to make the effort to follow up and really make an effort to explain myself and provide details that get missed along the way.
An hour a week is not a lot of time to cover all the ground I need to cover. My brain tends to “stovepipe” — go deeply into specific areas, to the exclusion of all else. The result is an incredibly rich experience with much greater detail and elaboration than most achieve, but it also shuts out other “fringe” factors that might be worth considering. I get very hyper-focused, you see…
In some ways that narrowed thinking works very well for me, but in others, it gets in the way. And putting things into writing is good practice for sorting out my thoughts in a wider sense and bringing other considerations into play.
So, I’m doing that. Putting things in writing and letting it go. I’m going to be able to cover a lot more territory in writing, than in talking. And this new neuropsych may just learn a thing or two, in the process. I know they’re going to learn more about me – that’s for sure.
And today is a good day. I’m helping my spouse with an event they’re presenting at, and once we get there, I’ll have the afternoon to get some of my own work done. I’ll hang out in the van and write. And edit. And write some more. I’ve got some compelling projects in the works, and now that I’ve said “good-bye” to my old neuropsych, I feel like a lot of my attention and energy has freed up.
Or maybe I’ll just sleep. I didn’t get much rest last night — I got woken up early by an unsettled stomach. Ate too late last night. And didn’t get to bed at a good time.
So, I didn’t see the neurologist yesterday. I saw the nurse practitioner (LPN). My MRI looks good – no sign of structural issues on the imaging. So, what I gather is that there’s really nothing the neuro can do for me. I must be one of those “miserable minority” people who just needs coaching to make the necessary changes in their life.
I’ve got no diagnosis from them – just symptoms. And I’m ambivalent about dealing with the LPN. They’re nice enough, but they’re also a bit snarky, making cracks about my employer, who has a bad reputation in the region. And they move too fast. It’s wild – they don’t seem to get that folks with processing speed issues can’t always keep up with them. And they looked at me strangely, when I had questions or needed clarification or when I was writing down my notes. They also didn’t do a very good job of communicating the information clearly to me. It was very scatter-shot, and they didn’t cover everything that had gotten tested. My bloodwork, for instance, never got mentioned. And they were kind of all over the place.
Not this again.
I really think it has to do with the nature of their work. There’s a lot going on, and the neuro is splitting their time between that practice and another practice they’re opening several states away, so the LPN’s workload is probably pretty heavy. It could also be that they’ve got an attitude because they’re “just an LPN” and they don’t get the respect they feel they deserve. It could also be because they’re a “jock” and they have this whole athlete mystique thing going on.
Long story short, they aren’t the most dignified or professional sort, and that’s a little irritating to me.
But that’s fine, because it will keep me away from them. I have the info about my MRI (more or less) and I’m not in any danger. I’ve got this whole headache thing, as well as balance issues, but apparently sleep is the problem — I don’t get enough of it, and that screws everything up.
The other thing I need to work on, is this new neuropsych. They’re really nice, but they talk too fast, and I can’t actually absorb everything they’re saying to me. It’s like a non-stop barrage of ideas and concepts and questions and statements. Good grief. They really need to slow down. I’m a little out of sorts, this morning, after talking to the LPN and the neuropsych yesterday. It was a lot to take in, and I’m still kind of shaking my head, wondering “What just happened?”
Anyway, I’ll focus on my sleep, I’ll work on my balance, and I’ll use my noggin about things. This new neuropsych looks like they’re going to be pretty good. But I don’t need a snarky LPN with an attitude (and possible emotional issues) to confuse me — and gloss over the details I need to cover. I’ll continue to take care of a lot of things myself.
Anyway, it’s a new day, and I’ve got plenty to keep me busy. So, I’ll do that. And work on my sleep.
I got 7 hours last night, which is better than I’ve been doing, lately.
I just confirmed my neuro follow-up appointment for tomorrow. I had gotten a call from them on Saturday, confirming me for 10:20 a.m. tomorrow morning, but I could have sworn I made it for 2:20 p.m.
So, I called them back this morning, and yes, it is at 2:20 p.m.
2:20 on the 22nd of the month. Gotta play those numbers
Anyway, after that appointment I’m also meeting with my new neuropsych. I did a little research on them over the weekend, and it turns out that they’re about 15 years younger than I (they got their B.A. in 2001 – which is really hard to believe… but there it is). They’ve had their Ph.D. less than 10 years, and they’ve been primarily engaged in group practice work, in an academic lab, so this whole individual thing may be new to them. I know they have worked directly with a variety of different kinds of folks (and they did their obligatory VA training), so it will be interesting seeing how this goes.
I have high hopes.
In any case, it will be great to be getting back to seeing someone on Tuesday evenings. Neuro rehab is really the central organizing theme of my life — improving myself, better understanding my brain, organizing my thoughts, and also figuring out how to deal with my spouse as they decline… it’s all part of it. And it helps to have a working relationship with someone who is a professional — no personal strings attached, no implied reciprocity, no emotional entanglements… just someone to talk things through with, who has an expert outlook on it all.
So, I’m gathering my thoughts for tomorrow. I need to take my bloodwork numbers from the past years, so they have something to compare to, and I need to collect my questions about my MRI images.
There’s a lot there I’d like explained. And this neuro is the only person I know who can explain it for me.
So, tomorrow is a new day. Literally. And it feels pretty danged good to be starting something fresh.
There are nearly 2 weeks left in Brain Injury Awareness Month, and I’m feeling as though I haven’t done nearly enough. There is so much to discuss, so much to investigate. The whole realm of TBI recovery is incredibly rich with data and experience, and there are as many variations on the themes of injury and recovery.
Now, if you’re a student looking for a field of study that’s dynamic and ever-changing, and has a direct positive impact on people’s lives, go into neuroscience — neuropsychology. Brain injury research. Brain injury recovery research. It’s relatively new — nascient — and people are finding out more and more every day.
Indeed, we know so little about the brain, and we learn something new on a regular basis, the sky’s the limit for areas to look into. There’s so much involved in our neurology, and so much variation and interconnection and cross-pollination in all the issues that go along with it, that it’s literally an infinite field.
If anything, the problem is more about narrowing things down — picking an area of focus — than it is about finding what’s out there to explore.
You can pursue medicine. Or psychology. Or research. Or psychiatry. You can pursue physical fitness or physical therapy. Occupational therapy. Vision, hearing, movement… cognition, emotion, philosophy. You name it, the brain’s got it. And someone, somewhere is going to need help with it.
…Because there is no shortage of people who have had brain injuries. Millions of Americans are concussed every year, and that’s not even including all the moderate and severe brain injuries… or the strokes, aneurisms, tumors, and other disorders that muck with our wiring.
People talk about there being a brain injury epidemic, and I suppose that’s true. But brain injury is such a part of our collective experience, it seems more like just another wrinkle in our lives, rather than a sickness.
It’s just there.
And there’s an awful lot of it.
So, if you’re a student and you’re looking for a field to go into where you can make a real difference, consider brain injury research, treatment, or rehab.
You’ve got an audience of millions hoping for more people like you to show up and help.
I am thinking a lot about losses, these days. Loss of friends, loss of doctors, loss of family, loss of jobs, loss of money, loss of hope.
I’ve been actively working on my brain injury recovery since 2007 — nearly 10 years. I got hurt at the end of 2004, so it’s been over 11 years since my last TBI. And my expectations and hopes have varied, during that time.
I always expected to be able to build back my abilities to at least some extent. I expected to be able to be able to retrain my brain to build back my memory, to address my distractability, to handle my fatigue, and basically all-round get myself back to where I wanted to be.
But that hasn’t happened. The one area where I have significantly improved, is in my gist reasoning, which is really the biggest “functional” deficit I had. Not being able to see what ideas are important in a sea of details is one of the most debilitating effects after mild TBI. It’s also a better predictor of how well people “deal” after mild TBI.
Even if we look great on other scores, even if we only have a few measurable deficits, if our gist reasoning is not great, we’re far more likely to suffer and stumble and have troubles. Nothing seems to make sense. Nothing seems to fit together. And we make one mistake after another, miscalculating and mis-reading cues in ways that really make our lives (and others’) very difficult.
And for no apparent reason.
It’s a hidden thing. And it’s a real problem. On top of that, it’s not recognized as “a thing” by a lot of folks. One refrain I’ve heard repeated, over and over from my neuropsych, is that I only have a few measurable deficits, and they aren’t even that terrible, so I should be able to get back to my life without too much struggle. It’s been kind of demoralizing, hearing that each week, as things just didn’t seem to fit together for me. Yes, my tests said that I was supposed to be in good shape — better than I felt I was. Yes, my tests said I have just a few deficits. But nothing made any sense.
It just didn’t make any sense at all. And it’s been constant work for me to get myself to a point where A) I don’t feel stupid and lazy and useless, and B) I actually understand the nature of my issues and can deal effectively with them. I’ve worked at it, I’ve really concentrated on it, and I’ve made some pretty amazing progress, actually. Even more than my neuropsych ever expected.
The thing of it is, if I’d listened to them and just and said to myself, “Well, my measurable deficits really aren’t that many, and relatively speaking, I haven’t been impacted nearly as badly as other people have,” I might have just sat back and not worried about it… and kept screwing up. I probably never would have made this much progress. I wouldn’t have had a need to. I could have just scaled back my discontent and kept my sights lowered, and eventually just settled in to working around the specific problems I had.
But a focus on the specific problems is a huge problem — especially with gist reasoning. It completely misses the point. Gist reasoning is about bringing everything together to sort through it and make sense of it, and if you just think about (and disregard) the smaller pieces, it’s not going to help you build overall strength in your gist reasoning.
So, just looking at my handful of small deficits wouldn’t have helped me at all. At the same time, sitting back and saying, “Well, I’m not nearly as bad-off a other people are, so I should just get on with my life and not worry about it,” would have put the kaibosh on my progress. Because in fact it’s the combination of taking those small things seriously and tweaking them — within the context of my overall functionality — that kept me going over the years.
And it still does.
Now I am changing neuropsychs, and it will be interesting to see how they approach things. I’m a lot less concerned than I was before, because I’ve been thinking about all the ways my old neuropsych was wrong, over the years. I’ve always felt that dealing with their wrong-ness was even more helpful than dealing with how they were right. It’s been an important process for me, to really think through what they’ve told me, and decide for myself if they were right or wrong. And the times when they were wrong – oh, so wrong – have been pretty educational for me.
So, yes, they can go, now. Sure, I’ll miss them. But it’s not the end of my world – it’s the end of one part of it, and the beginning of another.