Brain injury recovery – a learning experience

We need better ideas about TBI / concussion recovery
We need better ideas about TBI / concussion recovery

Every single day, I become more and more convinced that, more than anything else, brain injury recovery is really an exercise in learning.

  • It’s learning to do things differently.
  • It’s learning to know yourself differently.
  • It’s learning new things about yourself.
  • It’s learning to NOT do things that have stopped working — or that never worked, to begin with.

I’ve been watching YouTube videos on neuroscience. Learning about synapses and neurons and the stuff that makes our brains (and central nervous systems) work.

Here’s a video that’s admittedly a bit “dense” in terms of science and terminology, but which I found quite interesting. Did I understand all the terms? No. But I think I got the underlying concepts.

 

Getting back that Sense-of-Self

stones-bambooIt’s an amazingly beautiful day today. I didn’t get enough sleep, last night, and I’m feeling foggy and a little ill, but nonetheless, the outdoors awaits.

I’ve been thinking a lot about how I got my Sense-of-Self back. It has been back for at least a year, now. After feeling like a stranger in my own skin for years and years, I finally feel like me again.

How did this happen?

I think  it’s really been about habit. Developing good routines I can do, every single day, and also developing the discipline to follow through with things. It’s been difficult, but it’s been worth it.

As an example, this morning I took care of a Sunday task that I often leave until the end of the day. It drags me down all day, filling my mind with dread, and sapping my energy. But it needs to get done, every single week. No exceptions. So, this morning after my breakfast, I just sat down and did it. I spent maybe 20 minutes on it, following a series of somewhat complicated steps that have to be done in a specific order. I mess them up, now and then, but this morning I was totally focused on them. And I got them all done in good order.

And by 8:00 a.m. I was done with that, and ready for the rest of my day. I felt so fantastic, I was trotting around the house, and my spouse wondered why I was so chipper.

It’s because I did that unavoidable task exactly the way it was supposed to be done. I followed my own detailed instructions. I did my weekly duty. And the successful and smooth completion of it all left me feeling with a real sense of accomplishment, as well as a renewed sense of myself as a capable and … well, good human being.

I firmly believe that TBI robs us of a Sense-Of-Self by changing our internal reactions and our long-familiar capabilities, and thus making us into someone we don’t recognize. Even the slightest of changes in our accustomed inner experience of life can make us feel like a stranger to ourselves.

But when we re-learn how to do things, and we grow accustomed to the experiences we’re having with them — when those experiences become familiar to us again, just as our old experiences were — we can once again recognize ourselves… and get on with our lives as the capable people we once knew ourselves to be.

TBI recovery is very much about re-acquainting yourself with yourself. It might be a whole new you, in some ways, but it’s still you.

You just need to learn to recognize yourself.

Sharing: Survivors SPEAK OUT! . . . . . . Rogan Grant – from Surviving Traumatic Brain Injury

Rogan Grant – Brain Injury Survivor

 

1. What is your name? (last name optional)

Rogan Grant

2. Where do you live? (cityand/or state and/or country)

Edinburgh, Scotland

3. On what date did you have your brain injury? At what age?

I acquired my brain injury in 2006. I was 35.

4. How did your brain injury occur?

I was attacked outside a nightclub by some customers I had thrown out of my pub the previous week.

5. When did you (or someone) first realize you had a problem?

I knew something was wrong when I woke up the next day. I was admitted to the hospital and then released the next morning. A friend found me unconscious and in a pool of blood and vomit. I was rushed back to the hospital. A few weeks later when I was released, I thought I was OK, but I kept forgetting things. I set the kitchen on fire three times in one week because I forgot I was cooking. Once I even went to bed and left a full meal cooking. I knew then I needed to be around family “for a week or two, until I cleared my head.”

Read the rest of Rogan’s story at: Survivors SPEAK OUT! . . . . . . Rogan Grant | Surviving Traumatic Brain Injury

The Busy-Not-Busy Balancing Act

hand holding pen, checking off lists on a checklist
Getting stuff done… one thing at a time.

It’s been a little while since I last blogged here. I’ve actually been increasingly busy at work. No sooner do I start to think, “I’m out of here…” than I get a handful of projects handed to me that are actually really good for my resume. So, I’ll be around long enough to finish them up. Possibly longer. As long as the job is serving my purposes with keeping my skills sharp and my record clean, I’ll keep it.

No need to bolt. Not just yet. Of course, with the merger happening before year-end, anything could happen, but I’m not racing off… not quite yet.

It’s eerie, though, how the more I intended to leave, the more my boss started to “loop me in” to more projects with high visibility. Some days it seems like they’re reading my mind. How do they do that, anyway?

Well, whatever. I’ve been more busy at work, and I’ve been organizing at home. So, I’ve had less time to blog here.

The whole pace of my past six months has been a little strange. It’s either feast or famine. I’m either slammed with a million different things to do, or I’m in a lull, feeling like I’m twiddling my thumbs (sometimes I literally am). Of course, then I feel the need to jump into action and come up with more things to do, so I get myself busy again… and then when the normal incoming tide of to-do items starts to rise again, I have twice as much to handle.

Funny, how that goes.

Well, it’s better than not having anything going on, I suppose. I’m not sure I could have nothing going on, anyway.

It’s really about balance. And also doing a better job of tracking what I’m really working on. Sometimes, when I am “not busy”, I really should be — I’m just forgetting that I’ve got stuff simmering on the back-burner. Or I’ve flat-out forgotten that I’m supposed to be doing something important. Then I scramble to get it together, and I don’t always do a great job of it.

I can’t beat myself up over it, though. I just have to keep steady, and also do a better job of tracking my activities. I’ve started keeping weekly logs of what needs to be done, what I did in the past week, what I need to do next week. I’ve tried a bunch of different systems, but for some reason, they have all bugged the crap out of me. I think this one is good, though. So far, so good.

And I’m reviewing my lists with my neuropsych, which is helpful. I haven’t done this before, because I was embarrassed that I was really struggling. I didn’t feel like I should be, and my old neuropsych was very intent on making sure I didn’t get bogged down in a lot of negative self-talk. So, rather than admit when I was having trouble, I just didn’t talk about it. And I let a lot of stuff slip through the cracks.

No more, though. No more of that. I want to do well. I want to do my best. Even if that means getting over my self-consciousness and sense of impending failure.

It’s all a balancing act — an act of balance. A deliberate choice to balance things out, and a conscious act to do just that.

Yep. For me, it’s a choice.

Onward… together with the help I can find.

Five hours of sleep. Oh, well. I’ll try something new today.

Fatigue Range with "Not Sleeping" red zones at the top and bottom and an "Energy Level" line curving up into the top "Not Sleeping" zone
Fatigue Range – I’m just within the top red line, in the gray zone.

I can really tell the difference when I don’t tire myself out with afternoon exercise. I had a very lazy day, yesterday, catching up on some reading and organizing myself a bit better. On Friday night, I cleared out a bunch of boxes I’d kept in the corner of the dining room. I have an old habit of saving boxes for later use, because I grew up in a time and place where such things were scarce, and you had to save stuff for later — especially good packing boxes.

Now, though, the world is full of packing boxes. All you have to do is order some dental floss from Amazon.com to get a big-ass box in the mail. The floss will be packed at the very center of the box, surrounded by packing paper or those bubble packs. It’s very wasteful, but it’s one way to get a box.

Anyway, I got that done on Friday night, and that got me in the mood to do more organizing on Saturday (yesterday). I needed to go through a bunch of notes I’d written down, so I spent most of the day dictating my notes into my smartphone and emailing them to myself. I ended up with something like 20 pages of notes – and I could put away my handwritten notes. It was very productive, but also very sedentary. I did get out for a quick walk in the afternoon, but it wasn’t intensely strenuous, and I had just a quick one-hour nap afterwards.

Last night, I got in bed by 10:25, but I tossed and turned for a good 20-30 minutes before I got to sleep. And then I woke up at 4:00 and couldn’t get back to sleep. Not great for my brain function, to tell the truth. I’m foggy and fuzzy, this morning, and I’m worried. My spouse has been having some more noticeable cognitive and behavioral issues, and that’s heavy on my mind. I really worry about them and if I’ll be able to take care of them the way they need. I feel like I’ve failed in many ways, and may have contributed to some of their issues with my own temper and being hard to live with at the end of long days. I worry that I’ve actually made things worse for both of us. But I’m doing the best I can, I suppose.

Anyway, about this sleep business… During the work week, I usually get in a half hour of strenuous exercise. It tires me out, but I regroup and finish out my workday. And then I go home, have my supper, and go to bed. That works best for me, because it really wears me out, and I can’t help but crash at the end of the day. Yesterday, though, I wasn’t wiped out at the end of the day, so I didn’t just fall into bed per usual.

Today, I’ll try something new — I’ll try getting back on the exercise bike and going for an intense 20-minute ride. I’ll put on some music and crank up the resistance, and really push myself. It’s something to get my blood pumping and wear me out. Then I can regroup and take care of the rest of the day in what I hope will be better form. And then with any luck, I’ll be so tired, I won’t be able to keep my eyes open past 10:30. And I’ll sleep through to the morning.

I hope, anyway.

Onward.

All the things I thought I’d lost

abstract checklist with Xes beside the lines
I used to feel like this was what I could do – nothing.

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.

Onward.

Easy does it… sometimes, but not all

construction site nighttime scene cranes and lights
Downtime is time for me to get to work – Photo Credit: Pixabay

Ah, the long weekend. Time to kick back and relax. Go for long walks in the woods. Read a book (because I can!). Do some cleaning around the house, take naps, maybe watch some t.v. — no, not watch t.v. Not during my days off. I really value my time and don’t want to lose it to the television.

I’ll be doing more studying and research this weekend, brushing up on skills, also updating my resume. Just having time to think about things.

My new neuropsych is away for two weeks, starting next week, and it’s a bit of a relief. They mean well, but they’re nowhere near as experienced and helpful as my old neuropsych. They’re still learning — they’re 30 years behind my old neuropsych in terms of life and professional experience, and they’re 15 years behind me, in terms of dealing with TBI.

I’ve been dealing with mild TBI my entire life, so I’ve learned a thing or two. They’re an outsider looking in, and they’re also very much into mainstream medicine, with a point of view that’s very urban, upper-middle-class, intellectual, academic, and aspirational.

I think our class and cultural differences are pretty pronounced. I come from a farming background — rural, self-educated, self-sufficient, and well familiar with hard knocks and having to scrape your way up from the very bottom of the barrel — not once, but many times over. The older I get, the more important this perspective seems to me. And the more annoying it gets for someone who knows nothing about that way of life, to be assessing and judging me and making their best efforts to assist me.

There’s a whole lot I tell this new neuropsych that they don’t seem to “get”. It’s a little frustrating, especially because it’s important background  or context information that they don’t seem to pick up. Even worse, they don’t seem very receptive to learning about it, coming to understand it. They’re a bit insecure, to tell the truth, which gets in the way of my process.

If you’re going to do something, then do it with your whole heart, with the understanding that you probably don’t have the first clue what you’re doing, at the get-go… but you learn. You learn.

We all learn. That’s how we grow. That’s how we heal. That’s how we heal from TBI. We learn. We adjust. We make changes and adapt, we apologize for our mistakes and mis-steps, and we pick up and keep moving on. That’s the deal. That’s life. That’s how we’re built, as far as I can tell. So, why not just commit to that very human experience, and go for it?

Why not indeed?

Anyway, the next couple of weeks will give me a chance to settle back down. Working with a neuropsychologist on my various TBI issues — my convoluted decision-making process, my impulse control, my difficulties with focus at work, gearing up for a job change, my challenges at home with my spouse — it’s time-consuming and it can be very tiring. So, it will be nice to have a break from that.

I can just be for a while. Move at my own pace. Not have to figure out how and when to slot things into my schedule. To be honest, as much as it works with my weekly schedule, taking 4 hours out of every Tuesday evening takes a chunk out of my week. And I’m not sure that these sessions with the new neuropsych are really as effective as the ones with the old one.

Then again, I did need to make some changes. I was thinking of terminating with my old neuropsych, six months ago. They they told me they were moving to another position in another area, and that saved me the difficulty of explaining how they were really just annoying me on a weekly basis, and I needed to just take it from there on my own.

It was a boon in disguise.

I do really value the whole process, and it’s important for me to have access to someone with neuropsychological training. So, rather than terminating care, I’ve really been needing to up my own game and take more responsibility for the work, myself.

And that’s what I need to work on, for the next couple of weeks. I’ve been lax about figuring out what I need to focus on, and the times that I’ve showed up completely clueless about what to discuss, those have not had good outcomes. Frankly, they just pissed me off. No excuses here. It was all my doing.

And I need to un-do it. Because ultimately, my recovery is really my own responsibility. They’re just there to help me work through things. I need to get my focus back and quick messing around. I need to properly prepare for those sessions, just as I would prepare for other important meetings. I don’t show up to meetings at work without some idea what I should get out of it. The same should be true for these.

So, there’s my task and challenge for the next few weeks — getting serious and getting lasered in on the issues I need to A) stop creating for myself, and B) start fixing by myself.

I need a little help from my friends, and my neuropsych is the most capable sort of person I can call a “friend” in this specific situation.

So… onward.

Why have I been away?

Sometimes it's hard to see the path ahead
Sometimes it’s hard to see the path ahead

I just jump-started my TBI blogging again. Looking at my archives, I have only posted six times, so far this month. That’s quite a difference from my past. It’s been for good reasons. I’m getting a lot of things done that have languished for some time.

But I also have been depressed. I get really busy… I exercise regularly… I tick items off my checklists… then I get really tired and feel depressed. No joy left, by the end of the day. No enthusiasm on the weekends. Just slogging through my daily life, pin-balling between hyper-productivity and not wanting to have anything to do with anyone, not wanting to go anywhere or talk to anyone… just waiting for the day to be over.

It’s an odd combination. Because I’m pretty well scheduled, and I’ve got a lot of discipline and focus for the things I need to do. My upbringing stressed getting things done, no matter how you feel about it. Your state of mind was really beside the point. You just got on with life and did your part, even if you had no joy in it. Even if you didn’t care about it. Even if it had nothing to do with you.

If you were depressed, so what? You just got up and got on with your day, anyway. If you were in pain, so what? You just picked up where you could and did your part. Personal feelings and emotions had nothing to do with anything. Getting the work done and playing your role was the critical thing.

I think it went hand-in-hand with being in a rural area, raised by parents and grandparents who’d grown up on farms. When the cut hay has been lying in the field for two days and is dry, and rain is threatening for the late afternoon, you don’t get to lie in bed and say, “Oh, I don’t feel like baling today.” You get your ass up out of bed, and you go bale the hay. You work through any and all weather conditions. You do what is needed by the community, and you pull your weight, so that even if it does rain at 4:00, the hay is all baled and in the hay mow of the barn.

It’s non-negotiable.

And I suspect that’s why depression and mental illness have become more prevalent in society. It’s not that there’s so much more of it, now. There’s just more recognition and acceptance of its very existence. I’m sure there have been many, many people over the eons who have been depressed or had some other mental illness. It was just never allowed to be seen. Or if it was so extreme that it couldn’t be eclipsed and covered up by strict roles and duties, you just got sent away.

Anyway, I haven’t felt much like interacting at all, this month. The shootings in Orlando really upset me. To me, it’s an assault on diversity and community. It’s an attack on human nature and our freedom to simply be who we are and gather with others like ourselves. It doesn’t matter to me if you’re gay or straight — everybody has something about them that is different, and we need to gather with like-minded people to remember who we are. It’s just that the people in Orlando who were killed and maimed aren’t in the mainstream, so many people don’t know how to talk about it or think about it, without looking for a way that “they brought it on themselves.”

I don’t see it as a religious or political thing. I see it as the product of our society that encourages people to take violent action against others, to relieve their own pain. And the politicizing of it by the very people who believe that same thing, really angers me.

And that’s all I’ll say about it. No more comments. There’s too much of that, already.

But back to my present. I really need to start blogging again. Regularly. It actually anchors me and helps me collect my thoughts. And I don’t need to get all rigid about the “right” and “wrong” ways to do it. I just need to do it.

Because the voices crying out that people with brain injuries are broken and can’t be repaired, are too strong.

Because all the fear about concussion often seems to completely overlook the chance of recovery. Concussion is turning into a sort of delayed-action death sentence, and I think that’s wrong. It’s a terrible message to send. But of course, that’s what gets the funding flowing.

Because despite having sustained 9+ concussions in my life, things are going really, really well for me, and I need to bear witness to that. To show that I’m good. That I’m recovering. That it’s not by accident, and it’s not a fluke.

Because, well, this is a huge part of my life. And in the midst of getting everything done, exercising, trying to get my sleeping schedule in order, and generally feeling down, it’s the one thing that can get me out of my head and lift my eyes above my current challenges to show me the precious long view.

I can’t make any guarantees, but I’ve just given myself some really good reasons to re-kick-start my TBI blogging.

So, I expect to see you soon.

No exercise, no waking up

rain-on-leavesI 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’.

If only.

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.

That’s just fine with me.

Onward!

Giving my system a break

Louis_Rémy_Mignot_SolitudeWell, I’ve overdone it on the trail mix. All those little seeds have caused my diverticulitis to flare up, and last night I was nearly doubled over in pain. It’s that lower left quadrant pain that tells me exactly where my colon is. And my intestines definitely were not happy, last night.

That’ll teach me.

Today, I’m taking it easy on my digestive system. I’m drinking a lot of fluids and staying clear of the fruit-and-nut combination. I’ve been eating too many nuts, lately, anyway. Worst of all, those little tiny seeds are what get me, and I had a bunch of them yesterday.

Gotta take care of the digestive system.

Today, it’s a raw fruit and vegetable kind of day – and plenty of distilled water. Something to keep everything from shriveling up from dehydration.

I had a good meeting with my neuropsych yesterday. They’re helping me get my act together and take care of all the stuff that has… languished, since I fell in 2004. I haven’t been able to rally very much at all, and the progress I’ve made has been stop-and-go… very uneven.

So, I’m fixing that. I had great plans, when we bought this house in 2002. but then I fell less than 2 years later, and everything fell apart. I’ve been trying to get myself back in gear for some time, but my old neuropsych didn’t seem very focused on helping me do that. It was really about just keeping me stable. That was my priority, also, because I didn’t have a good foundation. Now I have a good foundation, and I can finally start digging in.

So, this weekend, I’m going to take care of a few key things that have needed to be done for some time. My spouse is out of town for 3 days, and I have the place to myself to get in order. When they’re around, I’m limited because their health is not great and they can’t tolerate a lot of noise and dust and smells. While they’re away, I can take care of things that have been on my list — some of them for years.

First, clean out the lower cabinets, re-surface them with contact paper, and replace all the pots and pans in an orderly fashion.

Second, wash the curtains from all the bedrooms.

Third, check a gap where I think some bees have been getting in/out of the house walls — and plug it. I don’t want bees in my walls.

Fourth, put up a new house number, so emergency vehicles and delivery vehicles can find us. We do have numbers, but they’re not as visible as they need to be. I have been meaning to tend to this for years, now, but this weekend, it’s actually going to get done.

And that will be an accomplishment. I’ve got a few other things I need to take care of — yard work, some more minor maintenance, and just cleaning up after myself. I need to get organized, so I can actually live my life without making things even more difficult. I need to cut myself a break from all the various distractions — and that includes clutter.

It’s happening. And about time…

So, it’s all coming together. And it feels pretty good. And it’ll feel even better, when I manage to cross some of these items off my list. My gut is feeling better, now, and I don’t have the radiating pain coming from my lower left side. That’s progress.

It’s all progress.

Onward.