Apologies and Why is My Dietary Intake So Darned High

        Hello Internetworldland!

I do apologize for not putting up a post last week. I…just…didn’t. You know what I mean? I felt super badly about it, but just couldn’t bring myself to write a damned thing.

It happens, I guess.

This past week, I went to an appointment for intake to a place that offers counseling and psychiatry. Looks like I might be on my way to being properly medicated for my brain! Yay. I mean, my body is medicated correctly, so it’s time my brain caught up.

As I’ve mentioned, I’m currently taking a couple of what I will refer to as “Optional Medications” for sleep and mood regulation. The time has come for me to go non-optional, as I’m really quite depressed, and can’t really just go with mood regulation anymore. Also, my ADHD isn’t really controlled anymore, either, so time to mix those meds up a bit, in order for me to function as a normal human. At some point. I hope. 

I’m quite tired of being shiftless. I know, I know. I’m not. Trust me, my recommended calorie count has helped me figure that out. I do a ton of stuff, and I’m actually more physically active than I ever was before. My recommended dietary calorie intake, for weight loss, mind you, is 2400 per day. If, as I did Thursday, I work off all of my caloric intake in the first hour of therapy, well, I still have to get 2400 in the rest of the day. This is what works for me, obviously. One weird little factoid is that I actually burn more calories just by nature of being disabled, which I know sounds insane, but bear with me here. I have to put conscious effort into not falling over several times per hour. Sitting, walking, standing, doesn’t matter. I could tip over at any time. 

Yay for equilibrium issues. 

Seriously though, no. No yay. It sucks. This is actually common with many disabled people. There’s just more effort involved in existing. Even with my cane, which has a small quad attachment for the part that comes in contact with the floor, I wobble more than a freakin’ Weeble. I bounce off walls, doorways and my piano on a regular basis. We’re working on it at therapies with a few different things, including but not limited to: habituation therapy, kickboxing, and golf.

The habituation is my least favorite, though I love my therapist who does this with me, and no, I’m not just saying that because she reads the blog. I really do. She’s the one who told me to find a game to play every day to help my memory get more effective. Habituation is hard work, though. All of what I do in that session is, really. You wouldn’t think so, looking at it, but it is. I do all sorts of different things to get my brain and body just used to the lack of awareness of myself and space I deal with. It could be walking up and down the hallway and finding words that represent groceries in a store, or walking down the hallway alternately looking back and forth with each step, or looking up and down with each step. It could be playing giant Yahtzee in the hallway (one of my favorites), or doing modified Eppley maneuvers (those happen when I get, hmm….lucky and have both the equilibrium issue and vestibular dizziness at the same time, and are my least favorite, but also most effective for getting me back to baseline). I honestly dread the day I tell her that walking fast is easier for me than walking slow. Oh. Well, I guess she knows now.

I very much enjoy kickboxing. That was quite literally the last thing I expected to be learning at 46 with brain damage. I practice punches and kicks, and we also do Tai Chi. All of that works toward improving my balance. It’s also a lot of work, and in combination with the 15 minute warm-up before the rest of the hour (yesterday it was a stationary bike), is what burned off my entire breakfast on Thursday.

Golf is also quite challenging. I think it’s probably making my grandparents happy too, wherever they are now (they passed back in 1997). I had golf lessons when I was in 3rd grade and was AWFUL. I did remember enough to do well on that section in PE (I went to a rather well off high school, and we would practice hitting golf balls on the practice soccer field), but mostly, it wasn’t my thing. Now it is my thing, though, and I aim to play my first game this summer. You need balance for golf though, or you end up on your butt in the grass.

All of these things are done for a reason, though, and I do them, mostly without complaint, because that goal is important to me. It’s important to me when I remember it, when I’ve forgotten it, when I’m working on it and when I’m not. This particular irritation of not being able to really know where my body is in relation to everything else is HUGE. I strove every day of my life before the stroke to be graceful. I more often than not achieved it. Now, you can hear me barrelling down the hallway from the next house. You can hear me walking across my yard the second I get off the porch. 

I HATE it. With a fiery passion.

I really want my grace back. So that’s what I’m working toward more than anything. And, as I said, it’s a lot of work. 

Some days I don’t feel like getting up and going to therapy to work on it. Some days I just want to sleep instead of taking an hour and a half long plus bus ride to just go and work on my brain for 7 hours, plus an hour lunch, 3 days per week. But then I shut off my alarm, stop whining in my head, and get going. 

This is what goals can do for a person. 

Sure, I could sit at home, eat ice cream all day and feel sorry for myself because wah…poor me…my brain exploded for no clinical reason and I can’t do the things I want. But what good would that do? Heck, I could have given up long before now, way back when I was in Rehab, working every day to get my rudimentary functioning back. But I didn’t. And you know what? I am so PROUD of that. I stuck with it. I kicked some serious butt.

There are a bunch of us at therapy who feel this way. We may not be where we once were, but you know what? We’re all a damn sight better than we were after our events. If you happen to be a disabled person, give yourself a pat on the back. If you can’t, tell whoever is there with you to pat you on the back for me. You’ve kicked so much butt already, and I imagine you’re not done yet. You deserve the recognition!

Ah, Memories. Wait, what was I talking about again? 04/15/2020

I left my notes for blog ideas at home. This, of course, isn’t surprising, just another part of my life. 

Today I’m at the place I go on Fridays. It’s nice, relaxed, and the place to see some now familiar people.

It’s not always the easiest place to be (though by no means a bad place to be). The day program itself is more geared toward seniors, so I’m a little young for it. But, it helps my husband for me to come here, so I do.

It’s honestly not all that fun to know that you are a bit of a problem for someone. I don’t mean I cause trouble on purpose, because I don’t. I’ve only really gotten myself into an issue once, way back when I first got home, and decided to try to find free things on the internet. Oh, the spam. The spam! It’s tapered off over the past couple years, finally. I know better than to do it now. I knew better than to do it then, too, but I didn’t have much self control. It was at the beginning, we were still getting used to how I am now, and we hadn’t yet realized that my ADHD was back in the moderate+ category.

So, I screwed up my email for about 2 years. Like I said, it’s gotten better, which is good. I didn’t put my phone number on anything, so I didn’t have to fix that, which is better. And, perhaps best of all, I didn’t buy anything. Complete win on that!

No, I’m not some kind of compulsive spender. I am a compulsive online window shopper, but I really like looking at things, putting them into a cart, and then just deleting them after an hour. So, I get the fun of shopping, and of finding things, but then I don’t have to purchase things. 

This has been a huge source of comfort, in a way, as it’s a way to exert some control on my circumstances. If I find something I really do want, I keep it in the cart and send a text to my husband, who will ask me to see the item when he gets home. Or when I get home. Whichever. Maybe we’ll buy it, maybe find it cheaper somewhere else, or maybe not buy it, whatever works with our finances at the time.

This likely sounds like I’m being a bit controlled, and I am, but not in a bad way. What I really am, though, is impulsive, and this is not a good adult trait. So we’ve figured out workarounds. This way, I don’t look for free things on the internet, I don’t overspend, and I still occasionally get things I want. 

I pretty much always have the things I need. We’re old hands at not having quite enough money on a regular basis, so this is no different. And I do have a say in household finances, things we buy, things we want, and things we need. We’re going to get another car kind of soonish, and I have a say in that, too, even though I won’t be driving it, as I can’t drive anymore. 

I’m only semi-OK with that part. 

However, when I think about it clearly and not just stew on it all angry, it makes a lot of sense. Driving would be a Really Bad Idea. I don’t have a great short term memory. I have very little concept of actual time passing–I’m not time blind, but I don’t always have a good sense of when something happened. For instance, I can’t quite remember the time between getting home from rehab and now. I know a few events that I can place by where I was at the time, but most of it’s just a blur. 

“But Nocturne,” I hear you saying, “I can’t remember all of the past either. Surely that’s not a result of your brain injury.”

Oh, but it is. I’ve been a bit of a memory keeper for most of my life. It’s honestly caused a few problems here and there. Now, I don’t really have to worry about it. If something upsets me, it’s over and then poof, gone. This actually fits in with how I was before my stroke, to an extent. The things that truly upset me, or truly hurt me, I would kind of file away. My husband often has to remind me when I’m extremely angry with someone, because I would just forget. This has been a thing with us for years, though, because as a sanity saving measure, I asked him to. If I hung on to something, I would end up obsessing on it–not on the person responsible, just the memory itself. My husband never made a big deal of it, just said something like “you’re really not happy with that person, and you were avoiding them for a reason.”

It’s been tough to get used to just forgetting all of the things, however. I used to be a walking rolodex for all family phone numbers, all doctor phone numbers, all work numbers, all bill collector phone numbers. Not anymore. I have to look most of them up. I can recall a few, but not all. I used to remember recipes off the top of my head, and I can still recall a few, but I have to write the rest down, or I’ll forget I even made it in the first place. I used to know all the birthdays, and now I can only remember the ones in November (everyone has a heavy birthday month, that’s ours). And then there’s the most infuriating thing: We play Minecraft as a family, for fun. I have certain things that I like to do, mainly just mine all I can. Now, though, if I’m mining and I get blown up by a creeper or something, I won’t be able to remember what I was doing before the creeper blew me up. So, all of my stuff is just poof, gone.

I realize this isn’t the biggest issue in my life, but it’s still aggravating.

Actually, many things that have to do with my lack of memory are aggravating, as I’m sure you can imagine.

Some aren’t. I can sometimes completely forget I’ve watched a tv show, or listened to a podcast, or read a book. I actually freaked myself out a bit over a year ago (or so, it’s honestly just a guess on the time frame). I’d been avoiding reading books for the entirety of the time since the stroke, as at first I couldn’t really get my brain to actually understand what I was reading, or I would forget where I was in the book. One day, I apparently just really got into a book and read it for hours on end. I put it down, and then picked it up the next day, completely forgetting that I’d read it the day before. As I started reading it, I already knew the plot…and kind of lost it. I didn’t remember reading the book the day before, I knew I hadn’t read it before having the stroke, and yet I knew the plot and what was going to happen. I stopped reading it pretty quickly, feeling like an extra in The Twilight Zone. I told my husband about what I was feeling, and he told me I’d read it the day before for several hours. 

That freaked me out so much I didn’t try to read anything again for another 10 months. I switched to strictly listening to podcasts and listening to books. I seem to do better hearing and remembering than reading and remembering. I have a book now that I started, and remember starting. I want to read more of it, but I need a certain type of environment to do so, and spring is not that time, unfortunately. Too much going on. I’ll revisit when things are less…springy.

At this point, I’ll let you in on a little plot twist: I had been explicitly told to read a book I had already read as my first book after the stroke. I can’t remember who told me this (surprise, right), but I know it was one of my therapists, likely either Speech or OT (both help with coping mechanisms, in the programs I’ve been in, anyway). So, I’d been told, and likely thought “Eh, I’ll be fine,” freaked myself out, and didn’t try reading again for almost a year.

Bit of advice: don’t do that. If someone tells you to do something a little differently after a brain injury, maybe at least try it their way first, you know? I mean, at that point they will likely have gotten to be a trusted source of info in your life, and with good reason, usually an entire degree or several. What they say could really make your life easier, and maybe even less creepy.

Pain and Dizziness and Numerical Values 04/10/2022

I’m not really sure what to write about today. 

I’m pretty calm. My back is feeling a bit better, too. So, relatively little pain.

Maybe I’ll write about pain tolerance. But that can be a loaded subject, can’t it?

I think most everyone thinks they have a high tolerance for pain. I’ve met precious few people who literally up and say “Nope! I’m a wimp. If something hurts I’m immediately dying.”

No, I’ve seriously heard that from people. And the strangest thing is, they’re always far more understanding about pain than people who live with a lot of it. 

I think it’s possible that all of us kind of assume, from time to time, that no one hurts as badly as we do. While I understand that, I still have to think that might just…not be true.

I think pain is very subjective. It’s why I suck at the pain scale so much.

I hope you don’t have to have reason to know the pain scale from firsthand experience. It’s one of the worst things about hospitals, in my personal opinion.

In my case, if I’m in the emergency room, or at a suddenly scheduled doctor’s appointment, the pain is bad. Like screeching bad. One of my doctors told me I was stoic once, and I’ve held onto that particular classification ever since. She wasn’t wrong. I just deal with pain very quietly. Making any sound, in my experience, makes the pain worse, so I kind of…enclose it I guess. Wall it off.

This made it all the more embarrassing to hear that I started screaming in the first hospital I went to for my brain hemmorage. Historically, I’ve never screamed from pain unless I was literally giving birth. That got me screaming. 

And yes, I said embarrassing. For one thing, I am a 6 foot tall woman. I am not lithe or thin. As my dad says, “My daughters are built like brick (out)houses.” 

My sister and I are not to be trifled with, to be honest. We’re tough. My sister didn’t want to tell me that she got pain relief during the birth of her eldest child after they induced her. 

When we were finally able to talk about it, I flat out told her: Pitocin means all bets are off. Have something administered that intensifies labor, then expect you’re not going to “cry uncle?” No dice, man. You sing that “uncle” from the rafters, where you are likely hanging by your fingernails because of the pitocin. I will applaud your upper arm strength, not deride you for needing pain meds.

I feel similarly to most people’s reactions to pain. Pain is a very subjective thing. I recall hearing an explanation of the pain scale once, where someone described how things might work for different people.

The pain scale is a scale of one-to-ten. One being little to no pain and ten being unbearable pain. If you are an adult, and you have experienced memorable pain, a papercut would rate maybe a 2, tops. A broken arm would rate significantly higher. Likely up there with a 6 or 7. However, if you are, say, 7 years old, and you have never felt significant pain, a skinned knee might feel like a 5. A broken arm might be unbearable, and a 10. However, if you are a child who broke their arm when they were 5, and then they break their wrist at 9, they might think the wrist is only about a 6. 

See? Subjective. 

I think about things way too deeply, apparently. I second guess how much pain I might be in on a regular basis. I’ve literally caught myself thinking “Well, I’m not screaming in a hospital, so it’s not bad at all.”

I’ve caught myself thinking this in the last week, when I haven’t been able to stand up straight because my back has been in spasm.

To be clear, this wasn’t a 10. Not by a long shot. The beginning of the week was an 8, and it’s gone down from there to now being a 2. My personal 10 has classically been childbirth, which, as I alluded to above, was without pain meds (again, having pain meds for childbirth is not a weakness, at one point I found myself thinking I was crazy for not having them available). Now, my personal 10 is “should I be screaming right now?” If the answer is yes, then that’s a 10. Spoiler alert: I haven’t had pain that would make me scream in public since the stroke. 

That being said, I’m still embarrassed about screaming at the hospital. I’m glad I don’t remember it. That’s another thing about having a 10 on the pain scale. It’s highly unlikely that your brain (whether exploding or not) is going to let you remember something like that, even without being damaged. My brain sure didn’t, which I am profoundly grateful for, to be completely honest.

You may be thinking “But I thought she said she hates the pain scale. Why does she bother to have her levels of pain classified, then?”

It’s because I need to. 

I now get asked on a regular basis to rate things on a scale of one to ten, primarily my dizziness. As a result of the stroke, I am constantly dizzy, usually in two ways. I have some vestibular dizziness, though not a lot. I have some dizziness that is caused by my vision being messed up a bit (due to a palsy of one of my cranial nerves, my left eye sees to the right of and slightly below my right eye) and also, possibly an equilibrium issue due to either pressure from the ventricles being overfilled and/or a midline shift of my brain (the two hemispheres shifting slightly within the skull). 

All of that is a bit more complicated than I can explain, really. However, it comes down to the fact that I don’t always really know where I am in space all the time. This translates to dizziness, sometimes careening into walls, not sitting too gracefully, and sometimes suddenly falling on my butt for no reason.

Highly dignified, right?

So, when asked how dizzy I am on a scale of one to ten, I have to think of an answer. My baseline constant dizziness is a 2, solid. I’m never at a 1. I’m always slightly off. If I have vestibular dizziness too, that puts it up to a 4. This past week, I’ve been on muscle relaxers for my back, which have a side effect of dizziness, and boy have I felt that. It’s completely different from the other two I usually have.  Most days have been a solid 6. I can define why, though. Muscle relaxers relax muscles, they’re not particularly interested in which ones. So my eye muscles have been weaker as a result. Adding that little extra craziness to my left eye makes a pretty big difference. Though I just realized I haven’t fallen this week despite all this, which is a win, really.

I do have a 10 for dizziness. I had a couple of vertigo episodes before the stroke, and those were 10s. I had nystagmus, which is your eyes scrolling not unlike you’re watching the end credits to a movie at lightning speed and trying to read each line. I wasn’t able to walk without help from another person, and was sick every 10 minutes or so on the way to the hospital. So that’s the worst I’ve ever had, worthy of the highest number.

I think at this point I’m super done with one to ten scales. I mean, I could work in a few more. Maybe “rate this pasta dinner on a scale of one to ten,” or “rate this banana split on a scale of one to ten. That I could handle.

Existence; Or Deep Thoughts Without Jack Handey 04/08/2022

     Existence; Or Deep Thoughts Without Jack Handey

    Well, this is significantly later coming out than I had hoped. It's been a whole week since my last post. 

    There is a reason for this, of course.

    Last Sunday, I threw my back out.

    The usual question I hear after saying that is, "What did you do?"

    Quite simple: I stood up. Then I felt the familiar sensation of the muscles in my back immediately tightening, and that was it. Down for the week.

    Well, most of the week. I finally got out and about yesterday, Friday, back to my semi-normal schedule. I've missed all three days of my therapy this week, and got nothing done on Wednesday, when I have a day at home. Thursday I was able to go to the drug store and through the drive thru of Dunkin's with my husband. It was the first time I'd been out of bed, really, in nearly 5 days. 

    This whole experience really made me quite angry. I mean, here I am, brain damaged, unable to work and be a productive member of society, and now I can't even cook, take care of my house, play video games, or even watch television with my husband. Why on earth can I still get things like this after my brain literally blew a gasket and ruined my life?

    Then I was reminded of people who felt similarly about some of my clients, back in the 2010s. 

    People have this preconception that when we become elderly, we for some reason are magically cleared of our previous mental infirmities. We don't think this in conjunction with high blood pressure, diabetes, MS, ALS, or any physical issue. But mental disorders, there's this misconception that the elderly grow out of it.

    Me, I'm sitting over here like, dude, people don't even grow out of ADHD, or learning disorders, or even most physical disorders. There seems to be this prevalent idea that if you have something major already going on, you won't get something else. Like, if you have a major congenital issue, you can't have, say, a major disease pop up. Not all people think this. There are many people who realize that bad things can, indeed, happen to sweet people. Or that bad things can happen to mediocre people. Of course we think that bad things happen to awful people, because we usually believe in some sort of karma. 

    However, life is more...complicated than that. The Universe at large doesn't always, or even usually, punish the awful, or reward the truly good. 

    That can be extremely difficult for people to grasp. All the Major Books tell us there is punishment for the wicked, that there are rewards for the virtuous. We have whole afterlives dedicated to the good and the bad with suitable treatment for each. Some even have an afterlife for the meh, which is usually, well, meh. 

   This concept of rewarding the good and punishing the bad isn't really a thing in this lifetime, though, is it? We see it time and time again.

    Not to get too philosophical, but of course bad things happen to good people. Bad things happen to most of us. Even those who seem to have fully charmed lives have their difficulties. While I still don't know if karma does or doesn't exist (this particular fact that I've just related doesn't really negate it for me, though), I still have my doubts that there isn't Something/Someone that guides us through life, as the very least of their duties. 

    I can't explain my thoughts. I can't even really define them fully, as evidenced in the above jumble of words. 

     Having the stroke didn't shake them, though. I still very strongly believe in an...infinite spirit. A universal life force, if you will. (Yes, I totally just went to a thesaurus online for those. See? I can't define it.)

    Strangely enough--okay okay, it's not strange, it's just a thing--I credit my abiding belief in something greater than ourselves, or anything we can properly conceive of in that way, to my Catholic upbringing and my college literature course. The Catholic upbringing gave me my unwavering belief, just not in what they intended. My college literature course introduced me to Candide by Voltaire, a book about how not everything is for the greater good. It's about much more than that, and is actually the first book I'm going to put on the reading list for this site. It won't make everyone happy. It's satire, and morbidly funny, but also shocking, as most satire tends to be. If you can handle everything we, as a society, hold dear being poked fun at, it might be for you. I suggest an annotated version, as it will help with understanding some of the completely whack nuances of life, the universe and everything. The second book I'm putting on the list is The Hitchhiker's Guide to the Galaxy. It's also good to get you not to see the world too seriously. I mean, we really shouldn't, you know? Life is kind of ridiculous. There are so many strange things that exist, yet so many things have a purpose of some sort. There's animals like the platypus, which makes no sense, really, and insects like the honeybee, which make dire sense.

    When you look at human existence as a whole, it kind of looks like it was designed, doesn't it?

    This doesn't mean that I believe in the technical definition of Intelligent Design, but the phrase itself definitely makes sense to me.

    I have my reasons to believe, most do.

     I very rarely pray for anything, as I have done this in the past, and while I got an answer, and it was "yes," it felt like asking a genie for help. I got an outcome, but not the one I'd hoped for. One of those times was actually not long before my stroke. I had experienced chronic migraine for 8 years. It was a chronic illness that didn't present as a "normal" chronic illness. I was not diagnosed as disabled because of them, though they were disabling. I was on medication for a while that damaged my thinking process temporarily, and when I went off that onto a different one, the new one didn't really help the migraines. I had recently gone to a neurologist for a consult, asked her for help, and had been told something along the lines of "They're migraines. They'll go away when you hit menopause, and there's nothing we can do to stop them until then." I left her office in tears and devastated by her lack of...anything, really.

    I was in a hospice volunteer training course around that time, as well. We were asked by the instructor "How would you feel if you were given a terminal diagnosis, and told that you would die in the next three months?"

    Everyone else said "I would be devastated, and make sure I said my goodbyes before I died." 

    I said "Relieved, because that way I would know there would be an end to my migraines, and soon."

    I was the only one in the class who answered with a positive feeling.

    One day, after yet another migraine I had to somehow work through, I simply asked the Universe to take them away. I wasn't specific as to how. 

    Then, I had a stroke. Out of nowhere, as far as anyone could tell at the time. After I could recognize existing as a thing again, I had no migraines. 

    They were just gone. 

    Now, I cannot say that the stroke cured the migraines. I mean, literally, I can't say that because the doctors can't say that. But I see no other explanation for the lack of maddening pain in my head every other day, which was the frequency with which I got these horrific headaches. They literally disappeared. My husband says I've had maybe one or two migraines since that truly horrible day almost three years ago. I don't remember, because, again, memory issues. I do, however, have more ability to do things now, most of the time, than I did with the migraines. I was experiencing mild aphasia before even having the stroke, where I would just be completely unable to find the word I was trying to say. I had a foggy memory back then, as opposed to just not remembering. I had issues with time management. I was on an extremely strict diet to avoid any potential triggers.

    So...like I said, technically, prayer answered. 

    I'm still not going to pray much, though. I want to be really, really serious about what I pray for from here on out. 

    Whoever/whatever is out there seems to be very...literal in their interpretation.

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.

 Originally written on 03/27/2022

Imposter Syndrome and You: A shortish explanation

    As I have already stated, I have disabilities.

    I have not already stated that I was actually classified as a gifted child, at one point.

    This is valid to mention for the reason of Imposter Syndrome.

    I am very familiar with Imposter Syndrome (which, according to psychology, isn't so much an actual mental illness as it is an experience) as I am pretty horrible at anything in algebra. It’s almost, but not quite, to the point of a learning disability I’ve had ever since I can remember. Algebra, which is pretty much logical to most people, baffles me. For me, the formulas don’t always work, even though the rules usually do. I’m much better with geometry, which is more concrete, as everything already has a value, and you can find values you don’t know pretty easily. Yes, yes, I know–by using algebraic equations, but hey, mental blocks don’t usually make sense. 

    This was difficult to deal with as a kid in the G&T program in fifth grade. Most of the kids in that group understood pretty much everything effortlessly. I did not. I was actually in a lower level math class than the rest of my peers. 

    Hence the feeling of being an imposter.

    I get that now too. The brain hemorrhage left me with numerous issues. None of those issues is hemipelagic paralysis. So again, I am not quite the same as my peers. 

    I believe most people experience imposter syndrome from time to time. We feel inadequate when compared to others around us, whether we are actually inadequate or not. It could probably even be described as a common human condition.

    There are things to consider in my feeling this way now. For one, I am relatively alone in my diagnosis. My type of brain injury is pretty rare. Let me explain this. I had what is called a cryptogenic intraventricular brain hemorrhage. First of all, about 15-40% of strokes are cryptogenic. Secondly, only 13% of all strokes in adults are hemorrhagic. Most are ischemic, which means parts of the brain die due to lack of oxygen from a blockage, usually by a blood clot. From what I understand, most hemorrhagic strokes in adults are caused by aneurysm. Mine was not. Next we have the intensely scary factoid of intracerebral hemorrhage causing approximately 10 to 15% of all strokes, and they carry a huge mortality rate. Hot on the heels of that fact, we have intracerebral brain hemorrhage has a 30 day mortality rate of 44%. That’s almost half of the people who get any intracerebral brain bleed die less than a month after their hemorrhage. I could go on like this for days. Essentially, what it comes down to is that 3% of people who have strokes, have a stroke like mine. We’re a pretty exclusive group. Not really a club one wants to join, however.

    Many brain injured people have similar effects to me, though. For instance, I am not the only person in my Acquired Brain Injury program who has short term memory loss. I’m not the only person in my ABI program who wound up with long term vision issues (I wear prism glasses, due to a palsy of one of my optic nerves caused by the hemorrhage). I am not the only person who has adult ADHD (as I’ve stated, I had kind of overcome it before, though I was pretty much  just masking it). I’m also not the only person in the program who doesn’t have any long term hemi issues (loss of use of one side of the body due to bloodflow loss in the brain).

    Still though, I feel like I am Not Quite Bad Enough to get the services I get.

    This is pretty silly of me, to be honest.

    My ABI program is part therapy, part adult daycare. I also go to another adult day care one day per week. I do this because I don’t really do well on my own. I get kind of…lost in the day, for lack of a better term. I fully intend to do many useful things when alone, but I don’t usually end up doing them. I get lonely pretty easily, and then just kind of stare into space for a while. I don’t even really watch tv much. I have no idea what I do all day to be honest, but it never really amounts to much.

    For the record, though, I despise the term "Adult Day Care."

    So, I have day services.

    I do qualify for in-home help, but, well, there’s a severe worker shortage all over the country, and it’s really, really bad where I live. There’s literally no one to be here to help me out.

    So I have all these services. I have this kind of ridiculously rare diagnosis. I have long term issues that I can’t ignore. And still I’m like, “but what if it’s all a lie?” This is a stupid thought, and I know it. Doesn’t stop it from occurring to me though. It's something I should work on in therapy for sure, and I am, actually, as of this writing. I read my entry to my therapist, and she gave me some feedback. We discussed that really, imposter syndrome with me in general isn't much of a surprise, given my background, upbringing, etc. This was quite comforting, and I left the session feeling quite a bit better than I had in a while.