Brain injury… mind injury

flowers-for-algernon-quote
The final passage from “Flowers for Algernon”

It’s a gray, rainy day today.

Thank heavens for that. It gives me a reason to stay in, lay low, do some reading, write a little bit, and think things through.

Yesterday was a tough day for me – an emotional roller coaster that’s still kind of throwing me off. My spelling is not great – I keep skipping words I should be typing. I hate it when get emotional and bent out of shape over every little thing, and yesterday I was in fine form. Fortunately, I didn’t take it out on my spouse. It was more about weeping quietly at odd times of the day, trying to collect myself, and doing a so-so job.

Transitioning to a new neurologist, a new neuropsych, and navigating everything is proving more difficult than I expected. It challenges my recovery at the most fundamental level, and it’s hard for me to feel strong and with-it, when I’m struggling to collect my thoughts and put them into words with completely new people.

It’s not that they’re bad or incapable people. Both the new neuro and neuropsych (NP) seem very capable, and they both come highly recommended. It’s just that they’re new, and making transitions has never been easy for me. You’d think by now I was used to it, but to be perfectly honest, I’m struggling with this one.

It usually takes me day for my reactions to sink in, after an event. So, yesterday was a difficult one, because it had the double-whammy of meeting the new NP and talking through some details of the past 8 years with my current NP, and discussing my impressions of the new one with the old one. The new NP is incredibly smart — and talks incredibly fast — so fast, I had a hard time keeping up, and ended up fudging my way through the conversation. And then when I sat down to talk to my old NP, I couldn’t seem to come up with anything substantive to say about my impression of them on the spot.

It takes longer than that with me. I need a day or two to let it all sink in, because there’s a flood of information I’m taking in, and it takes a while to convert all that to words.

Which just left me feeling slow and stupid. It still brings tears to my eyes, when I think about how I used to be able to just jump right in and give my two cents on the spot. My brain doesn’t work like that, anymore, and it’s a crushing loss. I used to be really quick and smart that way, and now I just feel like the world is passing me by, and I’m too slow to realize it.

Which is why I tend to pull back from the world around me. It’s just so disheartening and demoralizing to be this slow — and know it. It would be one thing, if I were always this way. But it wasn’t always like this. And how strange it is, to realize your abilities are not what they used to be.

In a way, it was easier for me, when I didn’t know that I was slower than I thought I was. It was easier to react, when I didn’t realize that I wasn’t following to conversation, that I was getting lost and missing important pieces, that I was just fudging my way through. Then, I could just skate right along, as though all were well, and while I knew something was “off”, I had no awareness that it was related to my brain.

So, the past eight years have seen a huge amount of change with me, and a lot of that is due to the fact that I’ve had access to another person’s mind to help orient me and keep me honest. Many of those years, I spent in a state of high alert and concern over how much I was struggling with interacting with them. They didn’t know, because I kept it to myself. The last few years have seen a huge leap in improvement, so I’ve been on more solid ground. And I’ve done a better job of interacting — in no small part because I’ve learned how to interact with them. And as I’ve said before, connection is a huge part of TBI recovery.

Now a major source of connection is going away for me, and it’s a loss. I’m losing a key connection – just as if I were losing someone very close to me. It’s a kind of death, really, because the person I am when I’m talking to them, will never exist again. The people in our lives, the parts of our lives, are all part of who we are. They help make us who we are. And when they go away, those circumstances can never be fully replaced.

That part of us is going away. That piece of us — which may have been so essential — is disappearing. And it’s not coming back.

It’s like I’m losing a part of my mind. Our minds are shaped and molded and informed by those around us. Near and far, close friends and strangers, our social connections help create our personalities. They teach us ways to live. They shape our minds. They become our extended minds. So, losing someone so important, is more than a social loss. It’s more than a personal loss. It’s a functional loss.

And I hate this shit. It’s like standing by helplessly as I lose a part of my little finger. That little finger is not my whole hand. It’s just one part, and I can probably function quite adequately without part of it. But it throws me off. And in fact, my hand will never be whole again. Not like it was before. Sure, I’ll learn to adapt. I’ll adjust. I’ll get to know this new neuropsych, and we’ll do good work together, I’m sure.

But the one constant, stabilizing presence in my life — who doesn’t look at me like I have two heads when I’m having a bad day… who doesn’t talk to me like I’m an idiot… who talks slowly enough for me to follow, and repeats what they say when I need them to… good-bye. And good luck.

Well, this happens. People come and go from my life on a regular basis, but this working relationship has been the most stable and reliable one in my entire life. Even moreso in some ways than my 25-year marriage, which has had its ups and downs and hasn’t always been very stable. And to be honest, my spouse doesn’t have the information or the temperament to just deal with me, like my NP has.

Not that it’s been all peachy-keen, of course. Many’s the time, when I wanted to terminate. And in fact I was considering terminating at the end of last year. But now I realize just how important those weekly sessions have been for me. And I don’t want to lose them.

But lose them, I will. I must. In a way, it’s a requirement for me to move on. It’s like the Cosmos is telling me that I need to change and grow and shift my work in a different direction. Yes, this NP has been hugely helpful to me. But there’s something else out there for me… and that’s where I need to turn my attention.

So, for the next five weeks, I’ll be winding down and gearing up for this new neuropsych. And I’m trying to figure out how to work best with them, because their style is very, very different, and it’s going to be a challenge for me. But a good challenge, I think. Actually talking to people who go at a regular pace — even faster than normal. And learning how to tell them to slow down.

Well, this will be good practice for me.

Right now, though, I have a headache and need drink a bunch of water.

I’m sure I’ll figure something out.

Onward.

5 ways mental slowness is less of a problem

Source: http://www.braininjury-explanation.com/unseen-consequenses-of-brain-injury/brain-injury-and-cognition

For the past month or so, I’ve been feeling mentally slower than I’d like. Almost as though I was wading through mud. I tried explaining it to my neuropsych, but I didn’t do a very good job of it.

This week, though, things have seemingly lifted off me. And while I’m not feeling 100%, per se, I’m not feeling as burdened by my slowness as I was before.

First, I’m not feeling as slow as I was a few weeks back.

I started exercising again. That might have something to do with it. Either it’s getting my mind off things, or I’m genuinely feeling healthier. I think it’s the latter. In addition to not feeling as slow I as I was… I’m also feeling comparatively sharper than a lot of people around me. I’ve been watching others around me, and they are not holding up very well. So, I know it’s not just me. And that makes me feel a lot less self-conscious.

Second, I’ve got too much going on, to notice how slowed down I am.

I am doing so much that’s new for me, these days — or that is a combination of old things that are showing up in new ways, that I almost have no way of knowing if I’m actually thinking more slowly than usual, or if I’m just taking my time to make sure I don’t miss anything.

Third, I realize that my old “need for speed” was pretty much of an illusion.

I had it in my head that I needed to be going 500 mph all the time, when in fact “haste makes waste” and I was bumbling all over the place, screwing up, messing things up so royally that I was constantly scrambling to catch up. I wasn’t necessarily operating at a higher speed, I was having to back-track and retrace my steps a whole lot, which had me in a frenzied panic state, a lot of time. I thought it was speed, but it really wasn’t.

Fourth, I’ve realized that while my processing speed may be slower than it used to be, that has its advantages – namely, that I can slow down to sift through more information.

I’m 10 years older than I was when I had my last TBI. And a whole lot has happened to me, since that time. I’ve been through a lot of upheaval and struggle, and I’ve had some big wins and losses along the way. I now have more “data” to sift through in my head, and that means it’s going to take me longer to put things in order and make sense of them. Even if I’d never gotten clunked on the head along the way, I would still need more time to parse through everything and make sense out of it.

Fifth, I may feel slow today, but I am pretty sure that can change.

I haven’t been sleeping as well as I should, and I know that has an effect. It’s also been a long winter, and I’m foggy and dull. I have seen my mental performance turn around in the past, and with the right hygiene and exercise and just getting all the gunk out, I know from past experience that that can have a positive effect on me.

I’ll just keep trying. Everything changes, and this can get better. I just need to keep a positive attitude, use my head, not be stupid about my sleeping habits, and do the best I can each day.

Somehow, it works out.

My computer is brain-injured, too

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

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

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

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

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

Arrrrgghhh!

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

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

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

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

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

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

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

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

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

I don’t care for it at all.

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

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

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

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

I just wanted my computer to keep me company.

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

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

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

For now… onward.