Lack of Notice, or How to Succeed in Brain Injury Without Really Trying 04/02/2022

    So here's the deal.

    My husband just spent a solid half hour cleaning up a mess I made inadvertently by trying to keep my information private.

    I don't know if you noticed, but I don't have my real name on this blog. It's a pretty obvious step, really. I mean, I appreciate any readers who come across this blog, but I don't want y'all to know where I live, where I go, or things like that. Other parts of my life are pretty open to you, but yes, I will refer to myself as Nocturne for the purposes of blogging. 

    What I'm not good at, as mentioned before, is memory.

    I mean I really suck at it. Like a lot.

    So, my husband suggested (I thought) that I make up a new email for the purposes of this blog. (Spoiler alert, he didn't say that.) What he actually said was not to use my email address or web...name, I guess, in the title of the blog.

    But yeah. I misread the room there pretty badly. 

    So, I made a new email, forgot what it was, and made a second new email. Then I switched the email associated with the blog. I also managed to log out of my normal account on my computer, and hence, couldn't get into the blog at all. 

    Thank god my husband is an actual sysadmin in real life or I'd just be a sobbing puddle on the floor right now. It's later at night than I should really be doing anything. I have a pretty solid expiration time of about....oh...7pm at the latest. After that, the ole brain doesn't work so great, you know? 

    But he is a sysadmin, and figured out what the hell I actually did. And fixed it. He also fixed the password on my actual email, as I had changed it a while back and had, shockingly, forgotten what it was.

    I know, right? What the ACTUAL fuck? 

    I am now really annoyed with myself. Not so surprisingly to me because I live with this brain injury but maybe shockingly to you, dear reader, I am not embarrassed. 

    The reason for this is a little tricky, but honestly something that I wondered about for a long time before my stroke.

    I don't notice my deficits.

    Back in the day of my wanton employment, I worked for an in-home eldercare agency. Before ending up in my final position of HR and PR, I was a caregiver. So, I spent many days and a good number of nights caring for people who, for the most part, had memory problems, to put it mildly. Dementia, particularly Alzheimer's Disease, was pretty prevalent in our clientele. We were trained in how to work well with people afflicted with these diseases, what were better ways to redirect, what was a good way to get people who maybe couldn't remember their lives to talk about their past, things like that. We were there to make the families' lives easier, and the life of the elder in question just a little bit more pleasant. 

    It was a pretty big deal of a job, and a pretty serious amount of training to get there. 

    If you're a good caregiver, you can make yourself indispensable to the family and your client. I mean, that's the whole point, you're there to do things that the family would rather not have to do, in order to help the client feel better about having help, and let the families just be families. You know, it's hard to have to suddenly take care of all of your parent's physical needs 24 hours a day. And families are...complicated, aren't they? Much better to have someone new come in for the express purpose of helping out with things some might find unpleasant. 

    I loved that job. I really did. And I was good at it. I really was. I could just morph into whoever was needed in that situation. I was greeted once on a job site by a groundskeeper in this way "Oh! You must be the new cook." 

    I was not. But cooking was definitely one of my duties, so I answered "kind of," with a smile.

    And at that point I knew how I should act and how I should dress for the job. Formal, and well put together, in case you were wondering. 

    Either way, I usually found myself wondering what my clients felt about how they now lived. Was it embarrassing? Did they suffer from just being constantly mortified at how they acted?

    The answer there is no, strangely enough. I mean, sure, maybe once in a while they might feel embarrassed, but there was no need. I mean, not in how I saw the situation. Their brains weren't functioning correctly. And this is the thing I've learned since acquiring my brain damage: if a part of the brain no longer functions, you don't notice that you aren't performing the actions or reactions that part of the brain once took care of. 

    It's honestly both a huge comfort and kind of terrifying at the same time. 

    I mean, we go through our lives, if we are lucky enough to get through to adulthood without brain damage, and just assume that how we are is how we are. Then, when a person gets a brain injury, we suddenly realize, wait a minute, we're not who we were. 

    Usually, there are recognizable parts of what was once the whole, but we have changed. whether we have lost inhibitions or gained some, whether we have lost abilities, or yes, even gained some--we are different. 

    For me, I lost a few things, and gained a couple. I lost most of my tact. I don't have that "shut up" instinct, not really. I don't have as much patience as I used to. I don't have much of an attention span. I can't drive anymore, and I can't work anymore. 

    All of this is a big shock, of course, but The weirdest part is that aside from the driving and the working, I don't notice the lack of any of those things. Lacking them doesn't usually occur to me. You may be asking your screen "well, then how do you know you don't have them, if you don't notice they're not there?" Well, I have people who love me and tell me when I react inappropriately, for one thing. If I just fail to be polite in a situation, I don't notice. Then, later, either my husband or my kids, or my mom, or dad, or sister will tell me "you didn't quite handle that well." I'll think about it, realize they may be right, and maybe decide to work on that or not, but I don't usually feel embarrassed really, because the whole reaction didn't occur to me as being out of place. 

    Anyone who knew me for...oh...about 25 years before the stroke likely just gasped. Anyone who knew me as a kid, through...oh...19 or so, is like "well, that's not a change."

    I'm still not sure what my brain damage entails, but I have pressure damage to the inside of my brain, in the ventricle area (all of them, as the blood filled all four), and from swelling, most of the outside areas of my brain due to pressing against my skull.

    I  don't know what any of that really means, so I can't actually tell you. 

    Essentially, the damage is pretty extensive, but, my brain still functions quite well. Brains are kind of amazing that way. 

    I do have pluses, too. I can do the Word Jumble in the newspaper. Couldn't do that before. I now make superb pie crust, as I don't have the patience to ruin them by overworking the pastry dough. Honestly, they're fantastic. I'm shocked. I can do some art that requires minute attention. Not sure if that's the stroke or my ADHD med, but either way, it works, so I'm not gonna knock it, you know?

    There's a particularly well worded art project at my therapy that says, "No two brain injuries are alike." They aren't. The average brain has a surface area of between 233-465 square inches. It weighs roughly 3 pounds. There's a lot to possibly damage in brain injury events. Then you have the different types of ways to injure your brain, such as traumatic and acquired, then you have how fast a person got help, how fast they were put out to maximize healing, whether the attempted fixes worked right off or took a while...there are many variables. 

    I often find myself pretty amazed at how different we all are, but also at how similar we are. I think it may be that even people with brain injuries are still, at heart, quite human, even if some of us have to kind of relearn how to be that way at first.

    I did have that thought as a caregiver as well. Even though my clients were dealing with all sorts of brain damage, they were still very much adult humans. Not every family remembered that, either. It wasn't a malicious thing at all, it was just being confronted with a confused individual every day, or even not every day due to living farther away from them, sometimes people forgot that their parents were still adult humans. Sometimes people forget that with us, too. Some of us definitely don't have the ability to act like adults all the time. However, I always bristle when I get treated like a child. So I don't like when other people get treated that way.