How to be your own problem

I'm on a roll, or it would seem to the casual observer. 

But, I'm not, really. 

What I am is writing a second post after finding the post I wrote two(?) weeks ago, unfinished, sitting in the queue. 

Whoops.

Today's topic is...drumroll, please...gaslighting. To be honest, you probably figured that out in the title.

Here's a definition of gaslighting, from www.britannica.com : "The term is derived from the title of a 1938 British stage play, Gas Light, which was subsequently produced as a film, Gaslight, in the United Kingdom (1940) and the United States (1944). Those dramas vividly, if somewhat simplistically, depicted some of the basic elements of the technique." The play was originally written by Patrick Hamilton.

Essentially, a guy makes his wife think she's crazy by turning down the (gas)lighting just a little bit every day.

I have a significant amount of gaslighting in my life, to be honest. And none of it is coming from any other actual human. It's just me. 

Well, it's just me and my phone.

"What?" I can maybe hear you ask. "How on Earth can a phone, an inanimate object, if you recall, gaslight an actual human?"

Well, I mean, funny story.

I hope it's funny to you anyway.

So, I have this game I play on my phone. If I get enough interest I can maybe post the name and the company who puts it out, but I'm not paid to advertise, and I don't know the legality there, so I'm going to refrain from that just now.

I was told, a little less than three years ago now, by my OT, to pick a game which I had to play every day in order to get my brain used to remembering things short term. At first, of course, I had to set an alarm to play it, because using a skill that your brain has, essentially, made obsolete takes some time to establish. However, I did start playing a game, a merge three type, and continue to play it now. I haven't had to set an alarm to do so in over two years. I don't always play every day now, as I have a bit of a life, though not one like my former life. I'm still busy sometimes, though, so I give myself a little grace.

Anyhow, in this game, you get little bonuses for certain actions. These bonuses involve cute little animals in a very cute little zoo type situation. You merge the animals to get from baby to full grown. You can play the game offline, which is convenient.

Except. 

Except sometimes when you're offline, the game won't remember that you've already claimed the bonuses, and you have to claim them again.

With my memory, for the longest time, I didn't really notice. I just figured I'd played it and accepted the bonuses the day before and was just messing up the days again. I mean, seriously, I mess up days all the time. So the answer made sense. 

Until one day, I  KNEW, in all caps, just like that, I KNEW I'd already done it.

So, I mean, I guess playing the game every day is working in bits and pieces.

But I knew I'd done it already, and here I was doing it again. It was a little different, I didn't get the same animals as I had before. I looked at the animals I knew I'd merged, and they weren't there. 

So, there you go. It was working to get my memory working better, but my mini video game was gaslighting me.

Many, many people would find this disturbing, I suppose. Maybe quit playing the game. Maybe making an appointment with their doctor, even, to discuss the possible beginnings of Alzheimer's or another type of dementia. 

Me? Nah. It's just a Wednesday, like any other day of the week.

This doesn't mean it was a simple thing, though. 

Now that I know that I am quite able to be gaslit by electronics, I'm more sensitive to it in my life in general. Not that I need to worry about it, I don't. My eldest son has moved out and is an actual, bona fide adult, no longer a teen who, let's face it, might have found doing something like that to his mom quite amusing. My 12 year old is only just now realizing what he can get away with, and my husband, and I'm not gilding the lily here, he's honestly as close to a saint as anyone I've ever met. 

This doesn't stop me from occasionally throwing the random accusation at him that he told me one thing and now is saying a completely different thing. 

He doesn't. I definitely mishear him. And what do we humans do when we mishear someone but don't really know we've misinterpreted? 

We go on the defensive. Instead of we, ourselves, being the cause of the info mix-up, we blame the other person for what we think they said.

This goes a very certain way for me, now. Now, I start a conversation about something I'm confused about with "I need to ask you something. I remember us talking about such and such, and coming to the conclusion of blah." Before, though, I would just argue with him. "You told me we would do this and then we didn't! I can't remember anything clearly enough to get this done myself, so I need you to be clearer!" Blah, blah, blah, etc, etc, etc. 

My husband just responds calmly with something along the lines of "No, you asked about such and such, and we talked about it. We never made a decision on it," or "I didn't say that, that was something you said. I said we'll see," or sometimes even "We haven't even talked about this yet."

That last one is fun, because that means I'm likely remembering a snippet of a dream, which I don't usually remember at all, not at this point anyway. Either way, it's very hard for me to tell the difference between a dream and reality. Messed up, but true. Short term memory is a bit more complicated than people might think.

This all amounts to, in my mind, temporarily at least, self-gaslighting. 

My husband isn't doing it at all. I am. I'm just going along with my life, gaslighting myself about once per week. He deals with all of this like a pro. Like I said, honestly a saint, and no, I'm not overstating it.

I don't think there's an actual phrase for what I do to him, though. Most of the time, he just calmly states the truth of the matter. Sometimes he chuckles. Very rarely, he gets a bit upset about it. I can do this about the same topic several times in one day, sometimes for more than one day per week.

I mean, I'm not doing this maliciously. It's literally a thought process issue. I know that, he knows it. But he knows it much better than I do. So, I feel guilty. I can't be the easiest person to live with, sometimes. But, I guess, not many people are, really. 

We're human. We make mistakes. In some cases, a part of us that usually governs the making of mistakes has had a major shock, and no longer governs very well. We still have to give ourselves a little bit of grace, though. Still need to cut ourselves some slack. You can't hold on to every honest mistake you've ever made, blaming yourself for this, or that, or those things. 

At least two songs from the '80s told us that we're only human, bound to make mistakes. One was by Human League, the other by Billy Joel. I think of those songs often. They're good reminders, really.

Whether you have brain damage or not, give yourself some grace. Don't be too hard on yourself. 

Stream of consciousness. At least I think I'm conscious. Ish

(Note: This post is now about...I think a week and a half old. I forgot I wrote it for a while. Again.)

Well, today I'm trying something different. As I still seem to be having difficulty writing regularly, I want to test myself a bit and just write a blog post cold. I mean, it's warm in here, don't worry. I just mean I'm not going to figure out a topic and then research it a bit, write it and do two to three editing passes. That's my usual process, but I want to do something different. As a result, you may well need to prepare yourself for some possible rambling, maybe no clear conclusion to the post, and possible (though maybe unlikely, as I correct while I type, usually) spelling errors. 

I'm not all that sure what I'm going to write about, to be honest. Maybe start off with the fact that even though I write it a lot, I misspell the word hemhorrage all the time. Ah. This time for instance, I left out an H. Hemhorrhage. Nope, that's not it either. Hmm. Hemorrhage? Ha! Got it, Finally. So I misplaced the H. Let's see if I can remember it this time. I'll try again at the end of the post.

The past few days have been difficult for me. Since Wednesday, I've had a migraine. As I had to deal with these, on average, every other day before my brain injury, I used to know what to do to get them to go away. 

I'm not so good at this anymore.

So, since Wednesday, I've taken a dose of acetaminophen once per day each day. It didn't help. I tried to sleep well. That didn't work. Today, I gave up and decided on having red meat for my protein at lunch (just so you know I totally misspelled protien back there, and again, just now. PROTEIN. Yeesh).

Obviously, a migraine is a bit concerning. Well, it's obvious to me, anyway. I'll catch you up. As I have mentioned, I had chronic migraine before the hemorrhage. It was a pretty difficult thing to deal with, as I could lose anywhere from 2-5 days per week to the whole migraine process. I had to develop coping strategies, alternative med regimens, and try out a couple of different prevention meds over the course of 8 years. I used many things from over the counter antihistamines to an anti-seizure med, to either prevent the migraines in the first place or to get rid of them once I had them. It was a complicated dance of treat, rest, or ignore.

Not that ignoring was easy. Migraines are demanding little buggers. They don't like to be ignored. They want all eyes on them. Probably why so many of us need dark rooms, so we can just keep our focus on that attention loving pain. 

Anyway. I haven't had more than one migraine in the past 3+ years. That last migraine happened while I was in rehabilitation in 2019. So, it's been a while. 

Well, all that blissful, brain-pain free time ended on Wednesday. I felt it start and convinced myself that it was just a normal headache (I've had a couple of those over the past three years), and that acetaminophen would likely fix it.

That didn't happen. I still had the headache when I came into therapies yesterday (Thursday). It was getting more stubborn, and I finally admitted it was a migraine when I began to feel the familiar, yet unliked, nausea develop. So, lacking any acetaminophen with me, I went and bought a 2 pack of extra strength pills at the dollar store and took those. No dice. Still had pain for the rest of the day. I just kind of shunted it off to the side, as I didn't really want to lose any more time to it. 

After dealing with the pain through last night and then waking with it this morning, taking the last dose of acetaminophen I plan on taking this week, I decided my husband was right, and I would have to get a lightly caffeinated beverage with my lunch today, So, I got an iced tea, along with a steak and cheese wrap, potato salad, and a cookie (because cookies are good, and I'd had a headache for like 60 hours).

That has worked, for the most part. 

That wraps up that experiment. True to my word, I didn't edit except for a couple of (to me egregious) grammatical errors as I was typing. 

Oh right. Hemhorrhage. Nope. Dangit.

A Question You May Have Wanted to Ask, but Maybe Never Really Wanted to Know the Answer to

What is my brain injury? Well, that’s kind of…neat. Yeah, we’ll go with neat. My brain injury is, as far as I know, classified as “otherwise unspecified.”

 

That’s right. While they know I had a brain hemorrhage, they don’t actually know what caused it, or exactly what it did to my brain. 

 

See? Neat. I mean, I guess. 

We do know what the injury has caused, but other than that, it's...well, it's honestly kind of like The Nothing from The Neverending Story: Amorphous, Dangerous, and Mysterious.

 

I’ve been able to narrow it down to a couple of things, with the help of my nurse practitioner. The injury to my brain is caused by pressure from bleeding and swelling. The location is all over the inner parts of my brain next to the area of the ventricles (all four, as all four filled during the event), and all around the parts of my brain nearest my skull, from the swelling caused by the ventricles filling with blood. 

 

Usually, your ventricles are filled with cerebrospinal fluid. It’s where this fluid is manufactured and stored, as far as I can understand it. This fluid is then shunted by your body to the spinal column and area around the brain. Cerebrospinal fluid is also responsible for removing waste and delivering nutrients to your brain.

 

They do rather a lot, for what many might think of as empty space.

 

According to one of the doctors who told my husband what was up during the event, this is the stroke he “would want to have” if he had a stroke. From what I understand, there are two reasons for this. One, there is often not a residual paralysis of half of your body.  The other is that you either go out of this all at once in a sudden blazing wink (think the deadly kind of aneurysm), or, it shunts the bleed to a part of the brain that has some space in it, like the ventricles. In addition, if you live through the first week to the first month, you’re probably not going to die. Well, you’re not going to die from the stroke, anyway. Alas, this is no way to achieve immortality.

 

So, yes, essentially, my husband was told “we don’t know if she’ll live through the night, next couple days or the next week, but if she does, she should be good.” There was a lot of wiggle room in what he was told. I can’t imagine it was anything less than terrifying.

 

Then of course, there was some initial partial paralysis, over a month of immediate therapies, another month and a half in a different hospital for more targeted therapies, and an additional 3 months (or so) in a brain injury rehab residential program. After that I was good to go home, which came complete with in-home rehabilitation therapies, then outpatient rehabilitation therapies, then a transfer to a brain injury program. I still attend this now, and I travel two and a half hours round trip (minimum) per day to go to three days per week.

 

I imagine you might be wondering how I pay for all this. 

 

The answer is, I don’t.

 

I blew through the catastrophic deductible of $10,000 I had with our health insurance the first night, with an ambulance trip of 163.2 miles. After that, my insurance had to cover all of the things. Small favors, am I right? Well, I mean, smaller than gigantic favors. Though this was a pretty gigantic favor from fate to me, to be honest. OK, then. Thank God for large favors then. After that, I got the honor of going on Medicare and Social Security. This was a rather pleasant surprise for me, as I was told (in high school) that there was no way there would ever be enough Social Security to pay my generation when we could retire. And of course, ta da, I’m pretty much retired. I might get a job at some point, but it couldn’t be anything like the job I was doing.

 

Whatever the case, we are, of course, still paying off my one day of emergency transport. Likely will be for a few more years, truthfully.

 

That is, in a nutshell, frankly the most tumultuous time of my life which I have little to no memory of. Weird how that works.