Internal Something: 5 - In Dreams...

Internal Something

5 - In Dreams

“Last night somebody broke into my apartment and replaced everything with exact duplicates... When I pointed it out to my roommate, he said, "Do I know you?” -- Steven Wright

While that has always been one of my favourite jokes by Steven Wright, my all-time favourite stand-up comedian, it rings a bit too true to me now. Coming up on six months since the stroke, this entry will focus on one of the more "difficult to explain" experiences I've faced: Altered perception of reality.


I once listed the phases of my first few months post-stroke as follows:

• Thinking everything is just wonderful. (Euphoria)
• Thinking there is something horribly wrong with everyone and everything around me.
• Realizing that the "something wrong" was me.
• Shock.
• Realizing that the "something wrong with me" was my brain.
• Shock and confusion.
• Discovering slowly through time and many Google searches what exactly was wrong with my brain.
• Learning what could and could not be done to fix it.
• Learning to adapt with what I can not fix.
• Everything since then...

Okay, so maybe I've included a few more phases now at the end, but I've come farther since then. Regardless, that is essentially the path I have been on since mid-October. If you include back through mid-September (what I call "negative time"), it would include a few phases involving a lot of paranoia and delusional states... but I'll write about that in another post.

The joke at the start of this entry relates very directly to the second phase in my list. For about a month or so, I felt that absolutely everyone and everything around me had somehow turned "different." Like I had been plopped down into an alternate dimension where everything and everyone was exactly the same, except ever-so-slightly different in a way that was practically undetectable. I could feel it, but I just couldn't figure out what it was. There was just something... off. Everything had been replaced by duplicates... Exact duplicates. This was my toothbrush, but it wasn't my toothbrush.

This sent me into a constant state where I was silently examining absolutely everything and everyone for any differences. The subtle details. The little things that, upon discovering them, might provide some relief to this feeling of everything being "wrong." I had friends that definitely treated me differently, as if they were replaced by evil doppelgangers. People close to me seemed angry with me quite often... which in hindsight was likely just my inability to read facial expressions, body language, and vocal cues.

I recall one night sitting on the sofa watching TV, and I glanced at the clock, realized how late it was getting, and thought to myself "I should be getting home soon." The problem with this was simple: I was in my apartment. My pillow didn't feel like my pillow. (I have since bought a new pillow.) My clothing didn't feel like my clothing. (I have since purchased new clothes.) My kitchen didn't feel like my kitchen. (I have since rearranged nearly everything in the kitchen, and even as recently as yesterday continue to do so.)

Some days, sitting at lunch listening to my friends talk (This was before I was able to really join into conversation again, so I sat listening a lot.), I would observe how much like themselves they still were, even though I felt they weren't my versions of those people. It reminded me a lot of the "Redverse" and "Blueverse" versions of characters from Fringe. Different versions of the same people are still the same people, right?


Once I made it through the next few phases and all of the inexplicable shock that followed, I came to understand that it was not the things and people around me that had changed... It was how I perceived everything. I was no longer understanding reality in the way I used to. Visually, it was all pretty much the same, but the feeling of everything was different.

To help people understand in a way I think most have experienced, I liken it to those dreams that are not good dreams by any means, but are not necessarily nightmares either. Those dreams that just feel dark and unsettling, and for some reason stick with you for days after you awaken. The problem I face is that I am awake for all of it, and the closest I get to "waking up" are the occasional days when I feel just a little closer to reality than I do most often.

A recent documentary called "My Beautiful Broken Brain" described it as "living inside a David Lynch movie." Those of you familiar with the extended works of David Lynch understand exactly what I mean. That scene in the diner from "Mulholland Drive" is a prime example. (https://www.youtube.com/watch?v=yusKlHgtvIE) I live that each and every day. Sometimes it's a little more like "INLAND EMPIRE" which is a film I won't even bother trying to explain. You kind of just have to "experience" it... but I also wouldn't recommend that.

It's not so much that I experience a "different reality" so much as I experience the same reality in a different way than I used to. The world around me feels more ominous and foreboding than it did before. Things feel darker and the air feels thicker... As if every bit of joy and hope has been sucked from existence, and I'm pushing my way through a post-apocalyptic wasteland that only I am aware of.

As I become more and more aware of the differences in my perception and reception of reality from how things "really are," I have to adapt. I can now better interact with the world around me, because I know what "my" reality correlates to in "yours."

I explained it to a friend the other day in terms of seeing color differently. (An analogy, as I don't think I see color any differently, but who knows? Maybe I do, and I just don't realize it yet.) If I began to see "blue" as something more "dark pea green," I would, for a while, think things are dark pea green... Once I become aware that what I see as dark pea green is actually what other see (and I used to see) as blue, I can begin to interact with those things as if I see them as blue. I wouldn't, but I could "act" as if I did. I could say things like "That blue car over there..." knowing that others see blue even though I would be seeing dark pea green.


I'm getting used to my new reality. I have to. Until my perception returns back to "normal" (which it might never do), I don't feel I have much choice but to adapt. Sometimes I might seem perfectly fine to others, and for the most part, I kind of am... It's not entirely bad understanding the world around me in a vastly different way than I did before. Knowing that the world is still the same as I left it, it's easier to embrace that I simply receive it differently.


It's a whole new world to explore, and it's all mine.

Internal Something: 4 - English As A Second Language

INTERNAL SOMETHING

4 - English As A Second Language

How do we understand and process language? At first thought, a person might be inclined to respond "We just do." Sometimes it seems that way, because it's something that "we just do" on a daily basis, and have done ever since we were young. Try to learn a second language though, and the answer is far more detailed.

The way the mind breaks down language comes in quite a few steps, and without getting too scientific, let's briefly review some of those steps...

Firstly, we need to receive the message given to us... We read words on a page; we hear someone speak to us; we see someone flail their arms around using semaphore... The key to this step is attention and maybe a bit of understanding that someone is trying to tell us something somehow.

Secondly, we should be aware of what those words, sounds, symbols, facial expressions, dots and dashes, images, and so on are. Not necessarily what they mean... Not yet. Simply what they are. We see the word "Pencil" and we know that it is a string of Latin characters that make up a word in the English language. If we see a bunch of raised dots in little patterns, we can be relatively sure they make up a word using Braille.

Thirdly, we know what that word is. The word is "Pencil." Sometimes we might just say that aloud to confirm that this word is the word that we know. Pencil. This step might seem like the most simple part of language, but I can assure you, it is one of the most important.

After we are sure the word we just read is "Pencil" and have maybe said it a few times to ourselves to be sure, we then have to apply a meaning to that word. It's no good for us to just say the word without understanding the meaning. Sometimes we can sing a song or say all sorts of words and phrases in a foreign language, and we can say them with perfect diction and clarity, but that doesn't necessarily mean we have any clue what the words mean.

This step is called "comprehension" and is absolutely necessary to the understanding of any and all uses or forms of language. We often grow up hearing the phrase "reading and comprehension" without even thinking twice about that second noun... but think back to our childhood, and we might remember those books with the words and the pictures to go alongside them. We might recall how difficult it was to apply certain words to certain pictures. Comprehension is actually one of the most difficult stages of language, even more difficult than the reading part itself.

But comprehension doesn't stop at understanding individual words. It continues on to the next step, which is figuring out how all these words go together. We see a group or cluster of words, we hear someone speak rapid bits of dialogue, and we piece them all together to discover the message. "Is that your pencil?"

After that comes the next really big phase of comprehension: Determining the meaning or intent behind the words. Sometimes it's obvious. "Where is the bathroom?" is fairly simple to suss out... while others might depend on additional context to figure out the implication the sender is trying to make. Someone asking "Is that your pencil?" could be wondering where you bought it because they like it, or they might be accusing you of stealing it from them.


There are very surely many other steps and parts to our minds' understanding of language... Trying to figure out what to say and how to say it is its own horrible monster, but I'm going to stop here on comprehension, because this has been one of my biggest difficulties over the past six months.

There were plenty of times that I found myself able to read or hear words and know the words themselves... while left dreadfully unable to make any sense of them. Other times, I was simply left unable to understand context and meaning behind what people were saying to me. (Specifically, there was a period of time I thought everything said to me by anyone was an attempt at starting an argument.) Luckily, there was not much occasion where I found myself unable to read or hear words.

My receptive sense was fairly decent, while my comprehension was greatly lacking in many different ways. Eventually, I realized that I was "translating" English. My understanding of the English language, my primary language, was similar to that of a second language. My ability to process was slow and broken into very deliberate stages, often times having to spend time creating mental images to apply to the words I was receiving, before I could even begin to attempt sentence structure.

This not only led to plenty of frustration, but also a lot of misunderstanding. Not even three months ago, I failed a "reading comprehension" test a good dozen times in a row before giving up completely... and I mean failed. Not just partially; completely. I've had to mentally take myself back to elementary school and essentially re-learn some of the English language. I spent months relying often on vocal and facial cues, as well as filling in the gaps between the words I completely knew, to get by in communicating with others.


I have been trying to write this one blog post for a good month or so, reveling in the irony of not being able to figure out how to write about communication... And a week ago, I was finally able to completely pass a reading comprehension test of the kind I had failed only months ago.

I'd call that "progress" if I could be sure that meant what I think it does.

(Fun fact: I misspelled the word "progress" four times.)

Internal Something: 3 - Disaffectation

Internal Something

3 - Disaffectation

I've spent much of the past few months agonizing over a certain emotional state that I simply could not name. I knew what it felt like, and I knew it contained a lot of frustration and strong emotions... but what the name was for those feelings?

Trying to figure this out sent me into so many spirals of thought, normally resulting in a complete breakdown of function. I called those "Error 11" or "BSOD" or my favourite, "Kernel Panic"... My thoughts, emotions, and actions were quite incredibly disconnected, and everything about it felt and seemed logically like a paradox.

Occasionally, if I was tired and cognitively fatigued, the results of trying to figure things out would be me lashing out in anger, my emotions and actions connecting in ways that my thought processes were left very viciously out of... Similar to a system dump when a computer crashes, complete with bizarre output of numbers and words. I simply could not understand how these two things correlated beyond the frustration involved in trying to interpret these feelings, whatever they might have been. I wasn't angry, so why was I acting angry? I had no idea.

A week or so ago, after another one of those BSOD instances, I wrote a lot about the situation and some of the feelings I was having and how I could not define them... Then I thought about it some more, from a different perspective... Then I talked to a friend, describing some of those feelings and emotions. I came to a conclusion.

It was anger. Plain and simple anger. Pent up, repressed, and very strong... Anger.

I had said many times that I wasn't angry and that my actions didn't come from anger. I firmly believed that there was no anger behind things I said or did. Why would I even think that if what I was feeling was so simple? This is where the mind gets interesting.

I had no name for the emotions I held. I knew logistically what anger was, as a concept, but my understanding or concept of what anger FELT like was completely different than what I was feeling. What I felt did not FEEL like what I knew as "anger" so I spent months denying it, both to myself and others.

This is actually a very weird concept even for me to understand: I did not know what anger felt like. Even reading that seems a bit absurd, but it has happened to me with a few other emotions already. I suppose this is just another that I've figured out.

It should come as no surprise to me though that the areas of the brain that manage every other problem and issue I have dealt with (frontal lobe and amygdala, specifically) also manage emotions and our understanding of them. It just seems so "second nature" to us though sometimes... We feel something; we know the name for that feeling; we do something about it. I never expected that the one strongest feeling that I've had the most difficulty defining would end up being something so simple as just plain old-fashioned anger.

And what was I angry about? Well, it's actually a bit personal between a friend and me, but suffice to say that it's something embarrassingly dumb. Granted, it was something very important to my mental state and the struggles I have gone through, but it's also so very stupid in hindsight.

I'm pleased to say though that since figuring this all out, I haven't even felt this "anger" anymore, and I am no longer frustrated by trying to figure out this weird emotion. Now, in regards to the situation and the results of it all, I simply feel sad... but maybe that too will pass.

At least I know what sadness feels like.

Internal Something: You Look Great! - Inside A TBI

INTERNAL SOMETHING

You Look Great!
Inside A TBI

This installment is not technically about me, but is about a film and a book by a survivor of TBI, or Traumatic Brain Injury.

First, to get records straight, what I am personally dealing with, while very similar to TBI, may or may not be specifically that. TBI is a form of ABI, or Acquired Brain Injury... and much like how all squares are rectangles but not all rectangles are squares, TBI is a form of ABI. Brain injury is acquired through many means, and physical trauma is one of the most common. Many people just lump them all under the banner of TBI, but I wanted to make the distinction here.

I say that my personal experiences may not be TBI because to be brutally honest, I am still not entirely sure what happened mid-September that set these wheels further in motion. While I have sustained many head injuries throughout my life, what I know for a fact about recent experiences is only that my brain suffered a loss of blood, leading to a definite ABI. Whether, in September, my head was physically impacted in addition to my spine/neck is really beyond my recollection. The memory is just not there.

So I will merely go with walking a fine line between ABI and TBI, while recognizing that that line exists... The catalyst is different, but the results and effects are similar, if not the same.


Now, about the film. Below is a truncated six-minute video from a survivor of TBI, putting into words and visuals many of the things that I have been wanting and intending to write about here in my blog. Not all of the experiences are exactly the same as mine, but enough are close to have put me to tears while simultaneously smiling from ear to ear. Someone else knows. Someone else realizes that other people don't.

While I still plan and need to get my own experiences out into structure and words, I highly recommend this film to anyone who may or may not have any desire to "get" what I and many others have been going through.

The full 55-minute long film can be seen on YouTube in 6 separate parts, or at the following link: https://vimeo.com/25150928


As for the book, it is filled with many more details, and was written as a helpful resource for survivors and carers alike to help assist them through awareness, acknowledgement, acceptance, and hopeful recovery through an experience that is typically very confusing, frustrating, frightening, and equally amazing. It is compiled from the experiences of survivors alone, and not medical professionals who often have never experienced life with a brain injury.

It is available in physical form and also on the Kindle app (how I am reading it) and it is well worth the time and small amount of money. I have set out to highlight every aspect that jumps out to me as something I can relate to or have wished to express to others, and I honestly don't think I've ever highlighted so much in a book in my life.

The book can be obtained here: http://www.amazon.com/You-Look-Great-Strategies-Living/dp/1463621248

I am only personally 14% through the book, but I am already highly recommending these to everyone. I hope to hear from anyone who might watch or read, survivors or carers alike, and I would definitely like to thank John C. Byler for putting the effort and struggle into creating these wonderful resources. They are much needed.


"Let me show you the world in my eyes..." -- Depeche Mode, "World In My Eyes"

Internal Something: 2 - A Short-Term Effect

INTERNAL SOMETHING

2- A Short-Term Effect

"Did I say that already?" That must have been the twentieth time I had said that all day, and it was only noon.

"Say what?" asked Janine, looking up from her phone.

"I don't know. What was I talking about?" I couldn't remember. I knew it was something though. Probably nothing important.

"You weren't really talking about anything. You've just been kinda staring at the table, and I've been looking at my phone."

"Oh..." I could have sworn I had been saying something. Did I say that out loud? I might have just said that out loud. I was sure we were talking about something, but I guess she's probably right. I returned to staring.


I was told recently by a different co-worker, Catherine, that of the few times she had joined us at lunch a few months back, she had noticed I had been a bit quiet. "We used to have conversations, but then for a while you'd just kind of sit there and say 'Yeah.' 'No.' or 'Mm...' more than anything." She also agreed that one of my most common phrases lately has been "Did I already tell you this?!" and that most of the time, yes, I had already told her whatever I was saying.

One day, only a few weeks ago, I had the same exact conversation with Janine at least twice that same day, possibly three. I'm not really sure if it was two or three times... Possibly more, to be honest. My recollection is mostly of her telling me that I'd already told her every little thing already, and that I could only recall talking to her before, but not what about. Even now, I remember the first time I had talked to her and that I had been pretty alert for 6 in the morning, but I don't recall telling her any of whatever it was I told her again at lunch. I also remember telling her something at lunch, her patiently waiting and listening until I was done, for me to ask "I've already told you this haven't I?" noticing by the slight smile on her face and the look in her eyes... And I remember saying "Yeah, I don't remember that at all. I was awake right?" Right now, I don't remember what it was that I had told her in either of those occasions... but I am pretty sure I tried telling her again the following day.

My short-term memory is shit now. I still have some gaps in my long-term memory, but I might write about that on another post. This one is about short-term memory.

That sentence was not for you, but for me to go back and read when I get on another topic after a few more miniutes of writing.


On more than one occasion, I will send a text message, put my phone into my pocket... and then pull it immediately back out, not only to make sure I had sent the text to the correct person, but also to figure out what I had just said. These sorts of "brain farts" are relatively common, as far as I can tell, but I get the feeling they happen to me a lot more often than they do to most people. It's part of every day life for me, and I know I used to be well known for my "amazing memory" before.


"What are they talking about?" I'll ask my wife as we watch TV. "Oh my god, they JUST said..." I feel a bit embarassed, but whatever, that's no big deal. "I know... I just didn't catch it." I caught it... I just forgot it already.


I have an incredible problem with being given verbal lists. When a manager starts listing off things that need to be done, no matter how slowly he says things, I've forgotten the first one by the time he's on to the second item. By the time he's at the third or the fourth, I've not caught either because I'm both trying to remember the first and trying to remember what this list is even about. I've had a bit of luck writing it down, but sometimes I forget why I'm writing... or I stop listening altogether because I'm looking at the words I've writen, thinking that they don't look at all correct. "Is that even a word? That looks like jibberish." But that also another topic for another post.


It's been getting better... but as with everything, there are good days, and there are bad days. Sometimes I don't remember the bad days, which is kind of nice. That's a joke, I think. But to be honest, it's not often I lose an entire day. Usually it's just bits and pieces, things that have been said, mostly things that I've said, and tiny fragments of moments.

For the most part, I'll remember watching a TV show, but I won't remember what had happened... or where I left off last time... I'll make it part way through an episode before I see something that makes me recall seeing it already, even though it was only yesterday that I had seen it.

I can remember when I talk to you, or send you an email, or chat online with you... but I won't often be sure what I had said, or if we've had that exact conversation before or not. Many times, I hesitate to say something, thinking that I must have said it before... but I'd rather just say something a few times than not say it at all. I simply don't remember.


Did I say that already?

Internal Something: 1 - External Silence

INTERNAL SOMETHING:

1 - External Silence

The following is from a night in mid-November when I had recently become aware of my cognitive dysfunction, although I still did not know that's what it was. The thoughts and words are as close to accurate as my memory allows me.

Where am I? Where are we going? Oh... right. Takeout. It must be Thursday.

She's talking really fast. I wonder if I should tell her that I'm only getting every fourth word or so. What is she even talking about? Okay, I caught that word. She must be talking about work. That car is loud. I should let her know I'm not ignoring her. What is she talking about? Work, right. Okay, something about a stupid person. I should say something.

"They sound dumb."

Okay, I guess that was right. I'll just keep saying "Mhmm" and "Yeah." Where is this place? Are we going to Yango's? I'm just going to assume we're going to Yango's until we don't. Aww, a puppy.

"Aww, a puppy."

I don't know if I should tell her that I'm not understanding any of this or not. Maybe if I get food in me it'll be better. Yeah, that's probably all I need is food. And some caffeine. Maybe I'm just tired. Should I tell her some of the stuff I've learned about my thing? How do I even start that? I can't just say "You know how my brain's all fucked up?" ... Can I? Oh, I think her story is done.

"So... um, you know that thing with my neck and all that..."

She just got quiet. She looks sad. I probably shouldn't bother her with that now. I doubt I'll be able to explain it right anyways.

"Anyways, I've been figuring some stuff out, so that's good... I'm hungry."

There. She looks a little less sad now. She probably already understands what's going on with me better than I do anyways. I don't want to ruin her day by going on about something even I'm not sure of... I have to tell her though.

"Ooo, an office owl. That's a good idea."

I'll tell her later.