First Things First

 Well, the title indicates "Firsts." But I'm not actually writing about firsts.

Now that I have done that thing where I've read the same word so many times it has lost its meaning in my mind, let's get to it.

Today I am writing this post from my phone. I'm doing this because I left my laptop at home, after checking to make sure it was by my backpack, which was by the door so I would remember everything on my way out.

Ha. Remember. Haha. Yeah, no 

I didn't remember, obviously, as I'm writing this on my phone. 

So here we are, and I think today I want to address memory loss issues. Ironically enough, I can't remember if I've covered this before. However, as this is what's really on my mind today, this is what I'm covering.

I also have this wild idea not to proofread my post before putting it up, but I don't think I want to do that. Text-typing is a bit of a pain with all the possible spelling and grammar mistakes, and I don't really want to post without the necessary clean up. 

So, I'll continue. 

I've heard a few people say things about memory, and how you just have to want to remember something and you will. However, there is obviously more to it than that. 

I can remember my birthday, my kids' birthdays, my husband's birthday, my families birthdays, my anniversary, the general time of April in which my husband and I first started to be a couple, the recipe for the sauce I make for halupki when I make it, and many other things that I knew before April of 2019. 

I can't remember what I made for dinner on Tuesday of this week, or the last time I actually saw some of my friends, when I last called my best friend (who I need to call--AJ, I'm thinking of you, I swear), what month we bought the car we have now, my youngest son's teachers' names or on occasion where my eldest son works. 

To some, though no one in my life, I have heard this sounds like "selective memory."

It's not. And, just by the way, if you think this about a person you know who has a brain injury, and if you have said such a thing to this person, cut it out. You're not thinking about it clearly at best, and being flat out insulting at worst. 

Look, I get it. We're pretty frustrating to deal with. We forget important things and trivial things with what seems like wild abandon. We burn food on the stove or in the oven with startling regularity, and we suddenly forget to do things well established in our routines with seemingly no cause. 

Trust me, it frustrates us, too. 

Think of it this way: you know when you run into someone you're absolutely sure you know, but can't remember their name for the life of you? That feeling of embarrassed frustration and being caught completely off guard?

That's something we feel pretty much all the time. 

Maybe we don't forget faces or names, maybe we don't forget when appointments are even. Maybe we don't even forget when we're supposed to do something, but when you have short term memory loss, you forget a lot of stuff. 

It's frustrating, embarrassing, irritating, maddening and makes you feel pretty defeated on a regular basis. Having a loved one tell us that it's "convenient" we forget anything is, much as you may or may not mean what you say, extremely hurtful. 

I get that too, that you feel hurt when we forget things. We feel pretty bad about it too, even though we might not look like we feel all that bad about it. Heck, we may look like we have little to no feeling about it at all. Sometimes those facial expressions are really hard to put on. They take time and effort, and as weird as that sounds, we don't always think of the silent language we tend to use as humans, body language. Sometimes its part of the brain that is damaged, sometimes it's just that we're focusing on so many other things at the same time to appear normal, sometimes we're just too tired to muster it at all. 

I used to say, a while back, that among the therapists we all see, the Speech Therapists are the ones that remind us to act more human. 

We lose a little of that with brain injuries. We can get it back, over time, but we often lose a bit of tone and inflection at first, some of us lose speech entirely, we sometimes lose the quicker empathy reactions. Those arent easy to get back, either. Pair that with the loss of conscious facial expression awareness and well, we can sometimes look not unlike robots. 

Here's the thing though, no matter how long it may take us to realize we need to actually make some of the more subtle gestures, we're usually still quite human and very sensitive and emotional creatures on the inside. 

Tough thing is, you on the "other side" don't live where we do. And we are notoriously bad at describing what we're feeling. 

We still feel sad about sad things, and happy about happy things, and angry about irritating things, etc. But the information you're giving to us may or may not make it into the part of our memory that makes sense. 

Sometimes, our brains store memories properly. But most of the time, it either doesn't store the memory at all, or stores it in the wrong place. My mom used to tell me to think about it as an old fashioned card catalog. Mostly, people have that card catalog in working order, properly alphabetized and everything in the right place. 

We don't, usually. Ours is more like the card catalog from that library scene in Ghostbusters, where all of the cards have flown all around the room, some are mired in ectoplasm, some are on top of the light fixtures...it's a mess. I literally have some events from my stroke rehabilitation that are stuck 3-4 years before the event. I have some that I didn't think happened yet (I had this weird period of time when I truly didn't understand why I wasn't able to remember the future), all sorts of wacky things, really. 

So...if our brains are kind of like card catalogs, when you have a stroke that affects your memory, you are essentially living life like that exploded card catalog in Ghostbusters. 

It's really, really weird. 

I used to swear I lived the same day over and over again. All day long. For weeks at a time. To others though, it was still just Monday, the day after Sunday, which came after Saturday, etc. I would actually get so frustrated I'd cry because I didn't think I'd see my husband for a week, even though he was coming the next day to visit. I couldn't see that, though, because I was still living my 3rd Monday that week, and everyone else was just acting as though it was a normal day.

See? Reality gets messed with. Time bends into weird positions. It's all together brain-melting. 

Except the brain already melted, and is now trying to make sense of everything. 

I'd like to say that goes away completely after a while. Heck, maybe it does, but I got stuck on Wednesday just this week. Even though I'm usually able to pull the truth about time together now, it still, well, it still sucks. 

Also, it's worse when we're stressed. I mean, how could it not be? The whole phenomenon also causes stress. That also really sucks. The whole time you're trying to figure out what is up with time and get it back into a semblance of making sense, you're stressing out, which actually makes it worse. 

Honestly, sometimes there's nothing for it except taking a nap. 

Which you likely wake up from thinking you've slept all night, and it's tomorrow. But it's actually still Monday. 

You see what I mean? 

It seems to me that people trying to crack the secrets of the Universe might be stuck on the wrong thing. "Time isn't a circle, it's a straight line!" Or "it all exists at once!" Or any other weird argument you can come up with.

What you find out with a brain injury that affects your short term memory is that a:  Time is actually subjective. 

That will burn the brains of some budding physicists, and I'm sorry, but really, it is. 

Sometimes, I think about time a lot. 

Yes, I know how that sounds, but I do what I can with this, you know?

Anyway, we base our time here on planet Earth on how long it takes our planet to rotate once, then how long it takes our planet to travel around the star at the center of our solar system once, and so on and so forth. 

We say that a day on Venus is 116 days, 18 hours and 0 minutes.  Mars is almost the same length as our day, about 24 hours, but its year is 687 days, nearly twice as long as a year on Earth. 

See? Time is subjective, depending on where you happen to be. We just base it on our own experience. 

This, of course, makes sense. It is, after all where we live in the solar system and the size of the planet that determines what our time looks like. 

All of this is highly comforting to me. If time is subjective, then maybe I'm not all that screwed up, you see? Maybe having one Monday last for 3-4 days isn't too bad, in that light. 

That said, I am finishing this up after a rather long weekend. Only the usual two days, though, thankfully. It was just a packed timeframe. Many things happen in November for our family. Tons of birthdays, Thanksgiving, and of course Black Friday. But you know, that also means that I've been writing this post for 3 days now. No really, this time it's true! 

So I'm done for this week. Happy Thanksgiving week to all the USA people, and happy 4th week of November to everyone else. 

I mean, probably.  Heh. I kind of crack myself up. 

Why I Won't be Working for the Weekend

 Welcome back!

 

The summer was far busier than I anticipated, strangely. But it was good! Nothing really earth shattering happened, so that’s a plus. I went to my youngest cousin’s wedding at the end of August, which was a lot of fun. My mom was up to visit us for about a month, and my dad came to visit for the last two weeks of her stay.

 

We all did so much cooking. So. Much. Cooking. Fantastic foods came out of my ridiculously small kitchen for weeks. My younger son started 6th grade, my elder son got a new job, which is teaching him a new skill set, and his fiance got a new job, as well.

 

We also got a new car earlier in the summer. Well, not new, but new to us, and also it’s only three years old. So that’s fun. What wasn’t fun is that we had to get it because our old car died on us. Whomp whomp. And, we had to buy it in the midst of the pandemic. Which, in case you may have missed some things, makes everything extraordinarily expensive.

 

I came to the conclusion that I can’t get a job. There are too many things that are inherently difficult about it. For one, we can’t afford another car. I mean we just got the one we have, I don’t have a license yet, either. I’m still working on it though. It’s just a bit of a process. I have to get my divided attention in better shape, and that takes time. I’ll be taking a driving class before I go for my license, as well, which I appreciate, as it’s been a really long time since I’ve driven anything anywhere at this point. 

 

However, even when I do have a license, my husband and I are not too sure we want me to drive much on my own, as I still have the memory issues. 

 

Not having my own car or driving my husband’s car by myself means not working.

 

I’m sad about that, of course, but also there is an element of relief. I’m not very good at doing the bare minimum to work, for instance. I would want to do too much, and I don’t have that kind of stamina anymore. While it’s getting a little better over time, it’s not likely to get back to what I had before the hemorrhage, and I wouldn’t be happy with that. I suppose, at some point. I might want to get a part time job, maybe cashiering, or maybe fielding phone calls. I’ve done both of those before, and know what they entail. They seem within my reach, as I said, on a part time basis. I don’t see myself taking on a full time job again.

 

Maybe that’s why I decided to write about this, I guess. There are several camps, political and otherwise, who think that people get declared disabled so that they don’t have to work anymore. I suppose some people do, but it’s a hell of a process to go through just to be able to stay home and veg all day. Plus, a bunch of people, like me, have extensive therapies to go to multiple days per week. 

 

In addition to all this, I have met precisely no one in my life who has been declared disabled and does not wish to work. 

 

I mean, think about it. We’re raised our entire lives to grow to teen years so we’re able to get a part time job to make our own money. Whether it’s babysitting or bussing, waitressing or watering gardens, Most people when we were in high school had jobs. I wasn’t actually allowed to work aside from babysitting until I was 17 and had graduated high school, but from then on, I had one (or more) jobs at a times until I had the stroke. 

 

I don’t feel quite right not working. I feel like I’m leaving all the financial responsibility to my husband. He assures me that the payment I get from SSDI is extremely helpful. It’s not a mint’s worth, though. It just barely covers necessities for the month for the three of us, such as groceries, fuel for the car, medical supplies and meds. His checks cover the rest, such as rent and car payments, some of the subscriptions, and any of the fun. 

I miss being able to buy fun, though. Have you ever thought about that? About the fact that you sometimes can’t buy fun for yourself? 

 

I mean, we all do this. We buy things we want, as opposed to things we need. We buy desires, as opposed to dire equipment. 

 

Most of the time when we have to not buy the fun things, we know that it’s temporary. It’s just for now, until we have more money available. I do shop sometimes, but I almost always have a purpose in mind. I have to not just buy things willy-nilly, because my monetary allowance isn’t all that huge. 

 

I liked being the one to buy things like dinners, or lunches for myself sometimes, or even just a pair of shoes on occasion. Now, my husband has to buy all the fun, and it makes me sad. I feel like I don’t have the opportunity to spoil him at all. I do try to cook things he’ll like, but it’s nice to give someone a present for no reason. 

 

Having to be closely budgeted is…frustrating.

 

And I’m not ungrateful for the payments I get, just…really underwhelmed by the rules that go along with it. See, the rules we have to abide by (and I understand that they are, in some way, necessary) seem literally devised to keep disabled people in poverty.

 

I wrote a whole explanation of what the numbers look like for us, and got paranoid halfway through. So I won’t be publishing that. 

 

Suffice to say that the powers that be check in on us periodically to make sure we don’t have too much money. 

 

Let me expound a second: So that we don’t have too much money for me to get help because of my disability.

 

So you see there are checks and balances. It’s to make sure people don’t cheat the system, I suppose. 

 

Kind of reminds me of when I was in college, the second time around, and had to supply my mom’s monetary information because I was under 25. She wasn’t supporting me by this time, but I still had to provide her info, because what if she was?

 

So, I find myself in a similar position now. 

 

Because other people have abused the system before (however, keep in mind that a solid majority of the people on disability need to be on disability), we have to live a certain way.

 

I don’t want to end this in some Pollyanna-esque “everything’s for the greater good and all we can do is keep living because isn’t that just the way things are supposed to be? Smile!” kind of thing. I think what I want to say is this: If you hear someone going off about “those fake disabled people using all the money and living the good life,” please quietly, but firmly remind them that by nature of the definition of the word “disabled,” we are classified as less-than by the government. Which we’re not. Also be sure to mention that we often have numerous doctor’s appointments per month and are often not able (oh, look, another way of saying disabled) to work anything more than a minimum wage job, and even that for only a limited amount of hours per week. If you have time and they haven’t just walked away from you mid sentence, you could also tell them I know precisely zero disabled people with beach front houses and indoor swimming pools.

 

Yes, I know it sounds a bit bitter. But if you’ve read this blog thus far, you know my humor is a little dry. I’m not bitter about all of those people. I’m a little bitter that I worked all of my adult life to be at this point now, but not as bitter as some might think. 

 

After all, if it hadn’t been for the stroke, I wouldn’t have met a number of very good friends, I would (likely) still be suffering from debilitating migraines (which, just as a side note, you don’t usually get disability for), and I wouldn’t have thought to start writing this blog. 

 

So, maybe a little Pollyanna. Not much.