Sunday, February 28, 2016

Internal Something: You Look Great! - Inside A TBI


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:

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:

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"

Thursday, February 25, 2016

Internal Something: 2 - A Short-Term Effect


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?

Saturday, February 06, 2016

Internal Something: 1 - External Silence


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.