Living with Brain Injury

When someone has suffered an illness, there is usually a time at which they become “all better”, when recovery has ceased because the person is well again. Same applies to the standard injury. How’s your broken arm? oh, it’s all better.How’s that cut where you sliced yourself at dinner? oh,fine.

How’s your brain injury? Are you all back to normal? Um…no.

If you knew me before TBI, stand here and talk with me a while and you’ll probably recognize the changes.  If you didn’t know me before, stand here and talk with me a while and you’ll probably wonder what is wrong with this crazy lady. I just recently read a thing trying to dispel myths about the brain, and it said that brain damage is reversible. No, no it’s not. If they’d like proof, they are welcome to hang out with me for a week.

The damage to my 3rd Cranial Nerve is the one physically noticeable sign that I’m not back to the way things were—and never will be. Nerves don’t heal. Guess what your brain is? A whole big smooshy bag of nerves. I cannot make my left eye look in certain direction, and I cannot think in some of the same ways I used to. And, so, just like I compensate for the limited mobility of my left eye, I have to compensate for the limitations of my cognition.

I’ve caught myself often of late saying things that I’m pretty sure will make people who don’t know me wonder what my problem is.. And, I’m hopeful that when those things happen around people who do know me, they know me well enough to remember that it’s just a moment, and it will pass and I’m sorry that I said that and I probably don’t even know I said something at all, let alone said something like that. And if I do know I shouldn’t have said it, I can’t apologize or fix it because it literally won’t occur to me, even as I’m thinking “I shouldn’t've said that” it won’t occur to me to apologize. I’ll think of it later, but not in the moment. 

Dysexecutive Syndrome: The joke has been since early on in my recovery that since people with TBI suffer from impulse control and saying inappropriate things, I was in deep trouble because I’ve always been that way. So what would I be like now? It’s kinda like having a built in excuse for saying inappropriate things to people that I want to say. Although sometimes, I really didn’t want to say it, even if I was thinking it. And, the joke is getting less funny. My impulse control and inappropriate comments are no longer humorous and in the realm of the ridiculous, but often cold and in the realm of darkness. The frontal lobe just doesn’t always work as I wish it would.

After my last neuropsych eval just over a year ago, the doc’s primary statement was that the concern is not about what I can do, but about how much I can do. And, I guess that’s the truth. Generally speaking, I can get done everything I need to. Unless I have 15 other things to do and then suddenly even mundane tasks I’ve done for years become difficult.

My first year back at work after my wreck was great. Sure, there were struggles, but it was great. I joked with kids, I actually taught them a few things, and I knew I could do this teaching thing,even if it was going to be a little different. Some things were harder, some days were rough, but I knew I’d figure it out, just like I’d figured everything else out so far.  I was thrilled to be back in the classroom doing what I’ve loved doing for so long. Even when things were tough, I never felt like I was alone, in a dark forest, on a moonlit night, fighting through the underbrush, wearing flip flops, carrying a giant rock.

My second year back in the classroom was, well, non-existent really: only 3 months before M was born. And I was unmedicated, so it’s largely a blur. I know I was there those months, but not real sure what I did.

Now, 3/4 of the way through year three. I’m in a big, dark forest all alone. Wearing flip flops. Fighting thick underbrush. There is no moon. And I’m carrying a big rock. sigh….I know I can do each thing I’m being asked to do, but I just can’t do all of it at the same time. I can hear the river, so I know which way I need to go. I have a head lamp, so I can kinda see through the under brush. The flip flops aren’t helping, but I can make it work. But there’s this big rock. Wait, why am I carrying the big rock again? I don’t need to? But how do I put it down? And I’ve already carried it this far. Hold on, am I supposed to be going towards the river or away from the river? I should go down hill, right? Wait a sec, I lost a flip flop. And wait, why am I carrying this rock again?      Technical term: cognitive overload.

There is a saying in the TBI world: “You never think anything about brain injury. Until it becomes the only thing you think about.” It sounds sort of co-dependent, but it’s true. Brain injury influences every aspect of my life. I mean, it is my brain we’re talking about. Brains are pretty important in even the day-to-day of life. It is a daily struggle, but everyone has their struggles; this is just the one I’ve been given. I do love my flip flops, but I am a little afraid of the dark. I’ll find my way, one step at a time.

 

 

 

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Remapping: The New Normal IV

As a TBI friend recently wrote, getting to know this new self is like getting familiar with someone who seems familiar in some ways, but yet different.Thus, there is a lot of remapping to be done. A new “self” to know and a new personality to work with.

Some of my new personality quirks:

I am often at a loss for words. Shocking for many, I know. Me? No words? True. Now and then my words leave me. Before, I never really knew the experience of not knowing what to say. Now, on occasion,I have the experience of being so in shock that nothing comes out. And, in the moment I honestly don’t know that I should say something – anything. I know things are out of control, that something just happened that I don’t want or like, but I am struck dumb. Powerless and immobile.

Or, I say things that while I am saying them my inner self is saying “really? that’s what you’re saying? that’s not a good idea to say that.” But somehow, the stuff I shouldn’t say still comes out. Sarcasm has always been a friend of mine. We’ve spent some time together. Now, though, when Sarcasm comes around I have to be careful that she stays a silent partner. She can say whatever she likes inside my head, but she can’t say it out loud. (And yes, Sarcasm is certainly a “she”.)

Sometimes the words I do find are negative. Crude, I find myself being that person I’ve never wanted to be around. That person who says negative things and is no fun. Even if my mood is really not all that bad in comparison to other days, some days, the only words I find are ugly. And I don’t like me for it.

Also, I’m unaccustomed to feeling indecisive. Even when making a decision that I wasn’t entirely sure was the right one, I knew whatever the outcome, I’d come out the other side. Now, I just simply struggle to decide. Sometimes it is about big things, like which lesson to teach tomorrow. And sometimes it is about the seemingly trivial, like whether to write the note to myself on a sticky note to put in my pocket, or whether to write it in my little notebook for my lists and notes, or whether to use a big piece of printer paper because I’m more apt to see it than to remember to look in my little book of lists, or whether I think maybe I’ll remember so I don’t really need to write a note at all. And when I am unable to decide I get more frustrated. So now when I am making decisions, whether big or small, I doubt my decision. Even if it turned out to be a good one, I won’t feel good about it because I’ll wonder what would’ve happened if I’d have done something else.

Additionally, I need lots of sleep and rest. There are fewer hours in the day now than there were before motherhood. Which is a common occurrence I’ve heard. Unfortunately, TBI reduces the hours in the day as well. So, I started my mommy life with fewer hours as it was. Sometimes, I just need to sit and stare. I go to bed at 8 and get up around 6. Daily. And, when I can I take naps.

Thankfully, when I am with Molly, the Darkness is nearly always at bay. Rarely have I found myself struggling to cope with whatever frustration she can throw my way. On the rare occasions when I do find myself in the Dark with her, I work to keep it at bay. To focus on her light. To allow her light to feed me. Even as she’s throwing her spinach on the floor because I won’t give her whatever it is on my plate that she thinks she should have. There have been days when she’s been frustrated, and she’s cried, and I have simply cried with her because I did not know how to fix her frustration. She is a joyful child, and truly an easy going kid, so most of our days are pretty easy. It’s easy to be happy around her. I am so blessed that she and I have always managed to find our way through to the other side and into the light. My words to her have never been cruel, dark, or ugly. And making decisions for her are never a struggle. It is a blessing. It is easy to be in the light with her. It is with her that I feel most like me.

As time passes I am hopeful that I will be able to understand this new map that is me so that I can navigate it with less frustration. Regardless, I hope and I wish that people I encounter on a daily basis could understand all this and how hard it still is on a daily basis. However, I also know, that those on the outside of brain injury cannot truly understand. To quote Anne Rickets,  ”…there is a boundary which imagination can take a tentative step across, but there is no more a chance that you can really see into our world, than Mr. and Mrs. Darling could visit Neverland.”   And that makes me lonely. 

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Broken Facial Recognition Software: New Normal Part III

I used to have a fabulous memory for people’s names and faces. I could meet a person once, not see them for months, and I’d recognize him or her, and know his/her name. I could learn my 150-ish students’ names by the end of the first 3 days of school. It wasn’t that hard. I just did it. Sure I used some memory tricks for some people, but mostly, it just happened. I never understood how people couldn’t do it. How did people not just know people’s names. –Now I get it.

My first year back in the classroom, by biggest class of the 3 was 25 kids. Total of 65 kids. It took me a month to really know their names. If I saw a kid in the hallway, I wasn’t always sure if he or she was one of my students or not. As kids changed into or out of my classes, I was even more confused. Sure, some kids stuck easily. Others stayed a mystery.

Last year, I was only at school 3 months before going out on maternity leave. This year, upon returning to school, I would often see kids in the hall who would speak to me, but didn’t recognize them. I wasn’t, and still am not, sure if they were students of mine last year or they are just friendly kids.

I often feel like I’m in a new place full of all new people.Faces just don’t stick like they used to.

Names in print I remember.Show me a list of kids’ names and I can tell you if they were in my classes last year.But that’s different. It isn’t faces. If you lined up 50 kids, I couldn’t pick out which were mine and which weren’t. Again, sure, there are exceptions, but that isn’t the rule.

Also,now when I see a student from 4 years ago (the year before my wreck)  I’m not always sure it’s the kid I think it is. Or, I’m not sure if I actually know the kid or not. And if she acts as though she knows me, I couldn’t call her by name. There isn’t even a hint of a name.Even when, on occasion, I recognize the face and I’m pretty sure she’s a former student, there’s no, “I think it starts with an M”, or “It’s a long name” kind of experience. It’s just blank. Before the wreck I could have told you her name, which class period she was in, who else was in there, and some particular thing about that kid. That’s gone.

Same applies to adults. I’ve run into adults at school functions of some kind or in the store, and I’m not sure what to do. I let them initiate,but even then I’m happy if I can fake my way through a conversation. I may have a guess at our connection, but I don’t know for sure. And there certainly is no hint of a name. It’s like making small talk with strangers at a party. Except, they shouldn’t be complete strangers.

If you aren’t in the TBI life, it’s easy to just say, “oh, just admit it to them, tell them the truth and they’ll totally understand.” Well, but admitting it is painful and new because this is a new deficit for me. I have no familiarity with handling mystery people. And, I think it’s rude to tell someone “hey, I think I should know you but I don’t, so who are you?”, and no, they probably wouldn’t understand. Besides, constantly reminding people I have a TBI gets old. It feels like a cop-out. Or, I feel like I’m making excuses. Maybe people would understand better than I give them credit for. Nonetheless, constantly saying, “don’t forget I have a TBI” gets old for me. I know I wouldn’t get it if I were on the outside, so I don’t expect other people to get it.

Regardless, another part of the New Normal. Broken facial recognition software.

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Past, Present and Future

3.5 years into TBI-land.

i am different than I was before my wreck. But I don’t really know how or how much different. I know some of the things that are different now, but other things, I just don’t know.I don’t know how I used to be. And that’s frustrating.

I used to have a great memory, and now my memory is bad. Instant aging process. I do the “walk to the kitchen and forgot why” thing daily. One of the many comments made by one of my good friends about a year after my wreck when we were talking about my struggles with memory was, “so, now you’re like the rest of us.” If this is really how the rest of the world functions, ugh. This was not a part of my past. It is a part of the present, and it will be a part of my future.

As I’ve said before, a part of the new normal in my life is learning how to think with someone else’s brain. Lots of similar knowledge, lots of similar memories, but some different capacities and struggles.The majority of my learning and of my personal history is still there. There are gaps though. Some memories of events I think I used to remember are now gone. Some of my education, the literature knowledge, is gone, knowledge about authors and such. Most of my skill sets are still in place, but there are aspects of my self that are new.

I’m quick to anger and quick to frustrate now. I wasn’t before, I think. The same good friend commented to me when I was complaining about someone irritating me that I “have high expectations of people.” True. I guess I always have, but now when they don’t meet those expectations I’m more annoyed than before. Angry, actually. And often that anger takes up free rent in my brain. I really want it to go away, but I can’t kick it out. I tell myself to let it go, open the door and let it leave, just ignore it and it’ll go away, and yet there it remains. I’ve never harbored anger. Now, it often docks at my pier. (A little  mixed metaphor, anyone?)

Also, I used to be pretty relaxed, go with the flow kinda person. Even if I wasn’t really happy about the flow, I went with it. No point paddling up stream. Now I paddle. And paddle. And paddle. I’m not good at making adjustments when plans get changed last minute. In part because I thought through the original plan, and I knew what to expect, and now I don’t have time to think it through and even if there is some time, I can’t let go of the frustration enough to actually think it through, so there is no easy flow. There are lots of rapids, but no gentle flow.

Thus, I spend a lot of time these days questioning how I would have responded to various things happening now. If I’m frustrated, I wonder how frustrated I would have been before. If i’m angry, I wonder if I would have been angry at all before. If I’m confused by something someone said, I wonder if it is that I just don’t get it or if the person wasn’t clear. If I don’t understand what is happening in a situation, I know I would have known how to respond before, so I wonder what I would have done, even if it wasn’t the right response, at least it was a response and I did something.Now, I do nothing. I know silent stasis was never my M.O. Now, it often is. There is much less risk involved in doing nothing than in doing something, regardless of what the something is.

The truth is, how I would have responded is irrelevant. But I still ask. And, asking the question does have value It helps me to question my reaction to experiences and to challenge their appropriateness. I know I don’t like my immediate reaction to a lot of experiences now. I know I’m frustrated by the immediate emotional response I have. And I know I’m frustrated by not knowing how I would have responded. And, I am further frustrated because I don’t often know what the appropriate response is. I don’t know if I should be so annoyed by what so-and-so did. I know I shouldn’t be letting what Skippy did fester as it does, but I don’t know what the right thing to do is instead, and I know I used to know, or I think I used to know, and I know I don’t know now.

Pre-wreck I knew who I was. Sure I had those aspects of myself I didn’t really like, but I knew who I was, was proud of who I was, and was okay with who I was. Today, I don’t know who I am. So I’m not okay with who I am. Lots of old-Darla lurks. Most times I think most people don’t know there is a new-Darla. If they do know, (and I know some do) they don’t say anything about the differences. Since they don’t say anything, I don’t know how I’m perceived by others. I do know that before I didn’t much care how I was perceived. I knew who I was, and that mattered more. Now, I don’t know who I am, and I don’t know how I’m perceived. The result is a lack of confidence I’m fairly certain I’ve ever experienced in my adult life. 

I can slather myself in all of the things I’d tell my students about what to do in a situation like this. I can hear myself give other people advice on how to handle this situation. But none of it seems doable. None of it seems right.

I want to understand. I want to know. I want to know what I would’ve done or said. Even if it wasn’t the right thing to do or say, at least I did or said something. At least I was confident in my response for good or bad. At least I knew.

What a thing it is to have the past, present and future all be a mystery. Only one of those mysteries can ever be solved. I can’t and won’t know all of who I used to be. I definitely don’t know all of who I am now. All I can do is be hopeful for and work towards being who I want to be in the future.

 

 

 

 

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Stranded–The New Normal Part III

I once described having Brain Injury as being stranded with no resources–it feels like I should know what to do to find my way, but I don’t. Another survivor described having TBI as trying to think with someone else’s brain; sometimes it’s like a new person’s brain each day. Maybe it’s both, combined.

At 3 1/2 years into my new life, I’m still stranded. I’ll work to organize my paperwork, file things, get my work space cleaned up. Then, a few days later, I need to find something and I can’t find it. I know I did something with it, put it “away”, but I don’t know where. I look in all the places that make sense to look. All the places that I would put it if I were going to put it away right now, but it isn’t there. When it finally does surface, often weeks later, I remember putting it there, and why I put it there and it makes complete sense, but when I was looking for it, it never occurred to me to look there. How did it make sense then and how does it make sense now, but not in the middle?

Strategies to remember? make a list. OK, but a person can have only so many lists. My walls can’t be papered with lists. Besides, which list would I look at?

I used to be one of those people who worked rather adeptly with a piling system, not a filing system. If you asked me for something I could tell you which pile it was in and about where in the pile it was. Now I can’t. I can’t tell you if it’s in a pile, or a file, or which room it’s in or whether it’s at school or home. When I find it, I’ll remember putting it there. But, again, I didn’t think to look there when I needed it.

Strategiesto avoid this situation? Create a system to use for filing. Ok. Um, but I don’t remember how I set up the system. What I have doesn’t make sense. Oh, I’ll just make a new system. Wait, but I can’t find what I need to have systematized. Or what if I tried this system? Or this? I’ll just start over, but where’s the stuff I need? Vicious cycle.

That’s another frustration: Indecision. It feeds the feeling of being stranded. Being lost and not knowing how to start is one problem. Being able to come up with 4 ways of starting but the inability to pick one of them is another problem.

Some people will say, “oh I do stuff like that all the time,” No you don’t. You may have done it before, maybe a few times. Maybe a few times more than you’d prefer. But you don’t do it all the time. I do. Daily. Maybe that’s not fair of me to say. Non-TBI survivors have lived with their brains and how their brains work their whole lives and they’re used to it.Maybe others do it daily, too, but that’s how they’ve always been. It’s just matter of course. But not me. This is new. 39 years with one brain, and now, thinking with someone else’s brain. Stranded. 

 

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