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.

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

4 thoughts on “Brain injury… mind injury”

  1. Sorry you are having a rough time. I know what it is like to be scared and feel stupid.

    I’m terrified right now. My concussion somehow ended up turning into demyelinating disease. Something that will eventually kill me, so now I’m hurting, stupid, and have death in my future as I turn into a gibbering idiot. They are pushing me to go to a specialist and I’m terrified of what I will find out. I am so scared I can’t even function.

    But somehow I will pull through this. I just don’t know how yet.

    Hang in there. At least you are still alive. You don’t have a death sentence hanging over your shoulder.

    Hugs, Annie

    >

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  2. Thanks Annie – I’m sorry to hear you’re dealing with all of that. Actually, I’ve come across accounts of people who arrested the progression of demyelinating diseases with diet. The movie “Lorenzo’s Oil” is about just that — the father finds something that will work. And there’s a TED Talk by Terry Wahls – a doctor who reversed her MS with diet. Check out http://terrywahls.com/tag/ted-talk/

    I don’t want to minimize your pain — just hope to add something that you might be able to use.

    Thanks again for your thoughts — and good luck. At least you have a diagnosis, and a specialist may be able to help.

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  3. Compliments. You are more than aware of what’s going on, how it affects you and what you need to do to keep improving and evolving. Your posts are intelligent and easy to read so hope to hear about your next stage soon.

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  4. Thank you very much. It feels a bit like I’m descending into a swamp, but I have to keep in mind that while this transition may feel like a challenge for me, I still have the skills to approach it. But if I dismiss the difficulty, then it can get the better of me. It’s a fine line… Thanks again for your kind words, and have a wonderful day.

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