It’s like being on a mental tight-rope. I’ve said this before. It’s very easy for me to get thrown off, or to lose my track, or even… like my brain isn’t ‘buffering’ enough information. And I stumble. I’m thinking about a conversation, for example. A conversation that causes me to think and not be the ‘funny/schticky’ guy. Um. But that’s why I use this recorder even. I can’t seem to access uh, parts of my brain while I’m busy – distracted by the immediate. So I’ve kind of thought for years in fragments. And I’m only now getting better at starting to record and say these things in a way that I think makes sense. But that’s about as far as I’ve come in 6 years.
Cognitive issues – always present, but intensity follows my baseline
Recorded scrap of paper – 22 May 2014 6:47PM
22 May 2014 – 6:47PM
Was thinking about – for example – Ferf just texted me. I don’t know why, I don’t know if it’s because I’m detached… I don’t know what the problem is. I don’t, I don’t have… I can’t switch to the gear to respond or think of what I would say to respond. It was simple, whatever it was. It made me think of how it is for me. Say my Mom calls – or if anybody calls – if I don’t see that I missed it – or if I don’t see it when they call and I miss it. Once my phone notifies me that they called – I don’t – sometimes I don’t answer. A lot of times I don’t answer cuz I just don’t have words for whatever it is the person wants. I can’t switch gears to whatever that is. And um. And I’m just so spaced and out of it. So detached from the phone I’m holding almost. Like, I mean… yea. Kinda like it’s the ‘movie’ part. I don’t know what part causes it, but…
Anyway, by the time – a lot of times by the time I am a little bit better or more connected mentally to the world and it’s speed a little bit better, by that point usually so many other things have gotten my immediate attention – which is all I really have , is my immediate attention. Um, I can’t have things floating in the back of my mind to do – it just doesn’t ever come out. But, by the time Im able to do stuff a little bit better, other things have gotten my immediate attention. Be that making Breakfast. Or Aedan asked me a question – and those are rough sometimes for me to answer – or, uh, I mean anything really. I have to go get up to go to the bathroom or … any of that stuff is enough to grab my immediate attention. However simple it is, gets my immediate attention. And that’s it. I don’t ever get back to whatever it was. Like say for example somebody texted me earlier today or yesterday. I don’t remember about it because I’m already onto something else and that little immediate attention span that I have is filled with whatever it is… the tasks of my day, getting through the day – the pain – whatever. The pain gets my immediate attention a lot. But… hope this made sense.
22 May 2014 – 8:30PM
My brain… you know. I was just thinking – because I was going to try to make something to eat. And so I – like I always do, I do it in stages. I take the things out of the refrigerator and let them sit in an obvious place that I need. So I can see them. Which… uh if I pass it to go to the washroom or something it’ll remind me. Um, and it just occurred to me ,again, and I’ve done this from time to time – set a reminder on my phone. Which on my phone is a simple thing. The clock. I just push on a button and I’m essentially there. And so it sometimes bothers me when people don’t understand. They make a very – genuinely nice suggestion: “Make yourself a reminder” or this or that. My phone would of course would be a good place – they usually suggest writing down a list which doesn’t help me – which I’m getting to. I’m frustrated that it doesn’t help me. I’m not frustrated that people suggest it – that’s not why I’m frustrated at that moment. But the thing is like with my phone. I was thinking to myself I’m like “I know this” and I was frustrated with myself for a minute – well, not with myself but just frustrated. I guess.
Looking at my phone right now to see if I can go through and remind myself what the Hell I was just thinking… click on the clock… create alarm… okay. So um, but, the trick is that then I have to remember to do these things. Right here I see in big numbers, pretty easy to change. I want to rest for… (phone making sounds as I set alarm) I have to do these things in chunks. I can’t do it all at once, it’s a pretty big task… so it’s 8:53 now, about 20 mins… 9:13 – Name alarm… See today I can get through this it’s still a little, uh, tough. And I like this thinking out loud thing, it’s helpful when I can do this… hang on… (setting alarm) “Make…” (clicking sounds heard from phone…). Okay. “This alarm is set for 19mins from now”. See that’s very helpful to me (that phone tells me when alarm is set to go off). A lot of times I screw it up.
That’s why I have to create a new alarm each time. The two steps I just did weren’t too bad… let’s go to ‘Alarm Repeat’… This is where it always messes up. It’s different days of the week. So if I want to remember this on a Wednesday or something randomly to make something. I can’t just have the same alarm because it’d be Wednesday instead of today, being Thursday, when this… I’m confusing myself.
Um, anyway. That’s what happens. And so… what made me think of that? Oh. Um, when it says how long the alarm is set from now. That helps me know. Otherwise it’ll say 2 days and 3 hours from now. Then it helps me know it’s going to actually happen. Cus it’s happened to me a bunch, that I set a reminder to do something and I don’t remember and the food just rots – well, it doesn’t rot. But it certainly sits out till I go to bed. Which isn’t good. Or sometimes it just doesn’t happen at all. I forget to do whatever the task was.
Anyway, I guess my point was that I have to remember to remember to make these alarms. Or, I have to remember to remember to look at a list. And even if I do, that doesn’t always mean I can get through it. I’m grateful today that I can get through doing this. I can’t always count on my abilities to do that. And then a lot of times, I can’t, like with a list, I can’t necessarily process a list. Or, uh, I can’t – like changing the direction of my thought, from one task to another or from one place or thing to a… like getting up and going a different room to do a task. Means I have to switch my focus from, uh… how am I going to explain this? it’s not… Doesn’t make sense…
Over the years it got frustrating too. Thinking about something and as I start to talk about it, I fall off that mental tight-rope and uh, it doesn’t make any sense and it’s not describing at all what I mean to say. And I get frustrated. So, um… yea. It’s a bummer. It was a good thought. I guess that’s why I started to record I suppose huh? I hope some of this made sense.
Recorded scrap of paper – 28 April 2014
What I really needed early on was for some of the Drs who believed that SOMETHING was happening and I wasn’t making it up or it wasn’t in my head – or that kind of thing. And you know, sometimes they’d say you need to go see this kind of Dr… or you need an Internist one might say.OK. I didn’t know what that was – I was very slow – I couldn’t – I mean I could understand what they were saying but processing that or doing something with that was impossible for me at the time. And I really needed the Dr’s to perhaps call one for me. And back me up or give me something that said that at least (that something was happening). Because to me, um, and my brain was very – was very hard and slow – and I couldn’t word concepts or things in my mind that I wanted to. I couldn’t phrase it or couldn’t find the word. Like “weak” or “heavy” were words that I couldn’t find for the first 3 or 4 years. It was very hard – I tried so hard to seem “put together” and not freaked out – as much as is reasonably possible.
I tried so hard to tell them what I could. I couldn’t say much. After the treatment that Id gotten – Im thinking about Dr. C. when I was in California – he was great. And he DID give me something. But… especially after the Mayo Clinic – but even by the time I got to Dr. C. I wasn’t comfortable enough to just say it. By that I mean, um, admit that something was also wrong with my brain. And I was just having so many symptoms and sensations that I couldn’t describe. Even now that sounds crazy. It would have taken a very special Dr to hear that (my symptoms) and go with it I suppose. But um, I think I – even now I’ve done that. And now that I realize I do that, I’m thinking about the last time I saw Dr. O. – I certainly couldn’t tell her what I wanted from her or I didn’t understand how to answer that question [She asked “So what is it you’d like me to do for you”] – I just thought you could just go to a Dr and say “here’s all the things that are happening to me “ – Okay… Now, do something. Not the case.
And I certainly never felt comfortable to also tell them “look – my brain isn’t right and I’m having some cognitive issues and things are slow” I just didn’t have the words that I do now anyway – so I certainly would have only been able to get out “My brain is slow” or something. Maybe. I couldn’t think. Especially couldn’t think of all the things I’d have to tell them at once. Or were happening at once. I couldn’t think of them. I didn’t know how to say things. And when it looked like they didn’t believe me I’d get worried, of course. But… But at least I was just kind of able to say some things. And I felt more comfortable. And um, it just seemed like they didn’t understand the words I was trying to use at first. And they weren’t asking questions… and they were challenging me mentally in ways – I certainly couldn’t respond. I just needed a loved one, or something, to be there and fight for me. Um, or speak for me maybe I mean.
But I didn’t know that really. I just couldn’t tell them. They’d absolutely think I was nuts. “Here’s a list of very vague list of symptoms that don’t sound like anything you’ve heard of on Gods Earth. Oh, by the way, my brain doesn’t work so good”. So, I had a very unique challenge where I also – even if I had someone who wanted to hear more about the brain stuff, or the other symptoms, I just. I didn’t have words. I mean, I could speak. Things would come out of my mouth. Almost like Auto-Pilot. I couldn’t recognize that at first, but…
Recorded scrap of paper – 22 March 2014
This comes from a Garage Session, but uh. Aedan has a playdate over and one of the parents just came to pick up the other boy that Aedan was playing with. This is typical, this kind of things happen a lot. Where, um, because I’m so detached from reality and very, I don’t know. Like a dreamlike state almost, kind of. But it feels difficult to interact in a normal way with people and the world around me. Besides the world being too fast and all the other stuff, but… So I’m here in the study. I hide kinda. You know. Because I feel so weird when trying to communicate, um, even when I have words. I feel… its just different and it’s very off-putting. And I feel, uh, I feel weird. It’s a perceptual thing. But I hide so I don’t seem weird to people if I’m spacey or skittish or flighty or, I don’t know. Or whatever I might appear, you know, when they try to talk to me. Or uh… I don’t really look at people or things too much that move – it gets to be too much. My eyes just get tired and it gets harder to visually process and mentally process. So I just kind of stare off usually, at another place and I feel awkward and weird that I’m not communicating, or…
I was in a better state for about 5 or 6 days in a row, maybe a bit more even, where I wasn’t as detached as I have been. Starting yesterday and far more so today, I’m just quiet. And I don’t feel like I have words. And I’m just very, uh, very detached. Besides everything else, um… so it gets harder. But there are times that I feel a little bit more connected and it’s a little bit better. And I feel I can communicate a little bit better. But that’s not, uh… its rare when that happens. And now is definitely one of those times where I’m just, I’m not able to. I’m just too detached and too mentally tired. And its hard for me to process the world. Its way too fast today. Again. As always I guess.
Recorded scrap of paper – 2 March 2014
Nikki and Aedan got this paper airplane book, and uh, Aedan just asked me to go into his room and help him. And he was trying so hard to make paper airplanes himself out of this book. And it’s one of those ones where it has pictures that you cut out, of the planes. Each one has a different design you do it. It’s really not that hard, but for ME, uh, it is. It’s one of those types of things. And um, so I was in there with him and he was asking me “How do I make this?”. And I’m thinking to myself “Aw shit. I know this is going to be a problem for me (making it) and I can’t field his questions and give him the answers he needs because I don’t understand either”… So I was trying to look at the 4 or 5 pictures, simple pictures there was in the book on how to make this thing. You know, just fold the bottom and fold this, fold that.
And it’s just so hard for me, I don’t know why. I don’t know if it’s just visual or… but it’s hard for me to look at this and associate that with the paper I was holding. And then okay… how do I fold this… and where… and it gets real confusing. And then it tires my brain, so as I try longer it seems my brain gets tired and it gets harder. And uh, it can be frustrating, you know, because when he asks me “why can’t you do this Dad?”, uh I don’t want to tell him. You know? What do I say?
You know and I try to tell him “I can’t do this with you buddy”, and he starts to cry. And I’m like “no, I – I – I really – I would LOVE to, uh, I want to. So bad. I do. “ How do I tell him? What do I say? You know? I don’t know what it is. But it’s no different really than when he had this simple train track set. A Playskool plastic train set that even had a giant picture on the box of it, you know it was a super simple toddler train track set. And I just couldn’t seem to understand how to put it together. But then there are things I can do sometimes. It takes me very long, if it’s a familiar task maybe I can get through it. It takes me a lot longer, but I can. It just seems like something new that I have to figure out is extremely difficult. Which is odd considering what I used to do for a living. But… same reason I have a hard time, besides the visual part, I have a hard time understanding how to make myself a profile, uh and get on Facebook. Until about a year ago or so (Nikki set it all up for me). Same mechanism and I hate it… I hate it.
Recorded scrap of paper – 1 March 2014
I was thinking about my brain and how, uh, when I don’t know what to say in a conversation it would be… uh, like with Doctors – just thinking about, of course. I would go to the appointments, I would think for days of what I was going to say and how I was going to say it. So that, uh… I was paranoid I guess after the reactions I got initially, you know, from the Doctors all the way up through the Mayo Clinic even, and uh… I would go there and get out what I could, you know, with the fragmented thoughts I have and so I would just say that, for example, I could only be thinking about one thing at a time. It’s a struggle for me to have thought that back then and have written it down on a scrap of paper, or recorded it… But then when they would ask, reasonably so, but they’d ask what do I mean by that or ‘give me an example’ and I can’t get to it in my mind at the time. I didn’t realize how bad I was doing I guess, but I was failing pretty miserably at communicating what I needed. Because if I didn’t come prepared to say it, which I couldn’t say much and it took a lot of fragmented thought and struggle to concentrate on only the upcoming appointment and what I would say. I couldn’t figure out how to use words for what I was feeling physically, or what I was thinking or needed to say. Little bit less of a struggle now, but it’s still pretty rough. So I would leave the appointment and I would have not communicated my needs well or my issues well. But I would remember a good portion, or most, of the conversation later. It’s like this whole middle ground of memory doesn’t do so well. Once it passes out of my immediate memory, it’s kind of gone for a while. But eventually I would remember a good portion of the conversation and what I would have wanted to say. It takes me days or weeks – sometimes longer- to actually get the words from my brain out of what I wanted to say then, and that’s kind of how I’ve re-learned to talk on the subjects that I have. I still do that, thinking about an upcoming appointment. Although now I write… But… I’ll have to make another (recording).
Takes every bit of concentration I have to operate this body and to go through the routine that I’ve struggled to remember. And get through… and uh, anything changes, if I have a protein shake – if I’m too tired to make the eggs or another kind of breakfast for me, then I don’t, I won’t remember to take any of my supplements cuz I have to do it on my routine – it’s gotta be. With the same breakfast meal everyday at the same time area, somewhere in the early or mid 7 o’clock hour. And then immediately after I can remember to take most of my morning supplements. I don’t really remember to take the ones later in the day, after that, especially on my lower baseline days. But uh…
Recorded scrap of paper – 19 February 2014
I need a page separator (I call it) between parts of a task to get through it. For example, this morning, I was making breakfast for myself, because I can do that most mornings now, and I’ve gotten in the routine which really helps. So I can make eggs in the pan and then I reheat some sausage. So today what I had to do – and I do this frequently and it’s with every meal or other similar tasks – um, so I would heat up the pan a little bit. But I would do it slowly, and that’s one part of my task. And then I’d go out in the garage and sit in a chair for a minute or two. And then I’d go back inside and by that time it’d be pretty close and I could put the eggs on. And then… so on and so forth. Like last night, I was able to get through making myself a frozen pizza. And like I do always, I set the oven to preheat. And that was one part of the task. Then I had to go into the Garage, the garage is my space. It’s my quiet space. So I go sit for a couple minutes and I listened to the XM radio a little bit last night. Then I’d go back in and put the pizza in, and then I’d be able to set a timer on my phone. And then go sit down in the space again and be quiet. Or if I’m going to switch tasks, um, I think… I forgot, uh, I was going to do something but uh, at any rate I always need a page separator. Hopefully I’ll talk more about this, I’m tired.
Recorded scrap of paper – 10 February 2014
Garage sessions are what I call it when I go outside to think…
Garage Sessions again.
Mentally I’m like a kid in a lot of ways. Even on my best days, the B12 has been helping a whole lot, but uh… even on my best days mentally I’m still like a little kid in that while my brain works a little bit better, if I don’t have someone there full-time to coach me or to help direct my attention and energies I can’t really accomplish much. Well I can’t accomplish… I don’t seem to be able to accomplish much of anything. And even on those best days, when Nikki is trying to help, or even when my Mom was here trying to ask me questions or help get some things out of me to help me write a letter… its extremely difficult for me at best. But it’s at least somewhat possible. Also too, if I don’t have someone here to say “Michael, eat”, somebody calling me doesn’t help because when I get off the phone it’s weird. I’m still in a movie too, so uh, it’s hard for me to… as soon as I’m off the phone I forget it. And I’m back on my own again and I’m confused, or disoriented and uh, I don’t know how to say what I’m thinking right now, um… I’ll have to make another one.
Recorded scrap of paper – Christmas 2013 breakdown
Christmas 2013, I broke down and I cried…
It’s uh, it’s Christmas. And uh, you know, I never get a break from this. But it’s Christmas. And uh, my little boy was so excited to play Battleship. And I haven’t played it since I was a kid and I thought it’d be so much fun. I played on his side and Mama was on the other side. And uh, and it was physically hard to sit there, and you know, there was a lot of light in the room – I can transcend that – and I was having a good time, except that all those little holes in the board – the fast pace of the game, even though it’s not a fast paced game – the intellectual engaging of trying to figure out ‘Okay… I missed on this spot, is there a battleship on this spot’, you know, whatever.
It just irritated my brain so much and I tried so hard – to uh – to not let it show. But it irritated my brain so much that I’m now in such an irritable mood. Not towards my family, you know, cus I don’t take it out on my family at all. But I was in such a great mood, it’s Christmas.
You know, and uh, my body. I get through what my body does. But I just wanted to play a game with my little boy. And uh, I cant ‘ – I can’t do anything. You know? I can’t play any games that tug at my brain at all because it irritates it so bad. I can’t do anything physically. But why do you got to take my brain? I just wanted to sit there with my little boy. And play a game. It’s 5 years later and I still can’t play a game. I just want some minor little bit of existence here, you know. I bet you all the f**kers who did this to me are sitting with their kids. They’re having no problem playing a game. They have no problems taking their money and going home. Look what they did to me. I just want to play a f**king game. Give me just ONE day… It’s f**king Christmas!
Recorded scrap of paper – 16 November 2013 1:33PM
November 16, 2013 1:33PM
Concentration is incredibly difficult for me, amongst other things. There’s a lot of examples, but this morning is a pretty good example. Something real simple.
In the mornings I have a much easier time, making breakfast. There’s a much higher percentage of chance that I can do that. But come lunchtime, absolutely by dinner time, my abilities are lessened.
But at any rate, this morning, about 8 o’clock this morning, so I was about as fresh, uh, about as fresh as I can get as far as mental sharpness and abilities and such. And uh, I made my waffles. I made 3 of them. Aedan decided he wanted one. Which was difficult for me to process splitting what I just had into another plate and giving him one. Super simple, but it was tough for me. But what I’m trying to record about was we have some guys downstairs working on the basement. And um, as I was putting the waffles on my plate, one of the guys said ‘hey Michael I got a question for you, can you come here’ or whatever it was. And it was a total shift of course of subject from ‘I’m eating my waffles’ – which takes a lot of concentration – Making them does, walking there, moving my arms, everything. Every little step involved in that – reaching your hand to go get the waffles, everything takes intense concentration. And so when this guy asked me – or even mentioned my name – it broke my concentration. Sort of like what you do to a dog when he’s sniffing something you don’t want him to go towards, you break his concentration. Well the same thing happens for me in that I don’t seem to have much working memory, just the guy downstairs bringing up my name snapped me out of that concentration of accomplishing a task which was getting the waffles onto my plate. Then I had to get a fork, which was another step, which irritates my brain anyway. But when this guy called my attention, I couldn’t seem to switch at all back to my waffles. I dropped them on the counter, wherever they were and I had to go handle that. Um, because his question was important. And my instinct is to just try and respond to whatever anybody does or says, uh – still. So I just put my waffles down wherever they were, I wasn’t even thinking about it. I think it was the countertop, and then later came back to them.
It was a real struggle trying to pick back up where I was – to figure out “okay, uh, where was I” … I had to get them on the plate. “They’re not on the plate, they’re on the counter – uh… I got to get them from the counter to the plate. Shit… I need a fork. Uh… fork…” and… and I get frustrated about needing a fork because then it breaks my concentration from trying to sit down and eat. Anyway, its extremely difficult. No matter what it is – no matter who asks me what. Any break in concentration from what I’m trying to do is tough because I generally cant get back to the spot where I was when I was distracted. Sp that might mean that if, say, for the past month Im solely concentrating on trying to get words out… or solely concentrating on just getting through the day because my baseline’s lower – or whatever it is.
Um, if Nikki asks me if I want to eat something, for example. Of course I do, and I will. But that’s something – that’s something that’s a departure from whatever it was I was trying so hard to concentrate on. Even if that was just movement from one place to another. It’s gotten better in that it’s not as painful – but there’s a physical sensation. I don’t know if I’d necessarily call it pain or what. But there’s a physical sensation and I feel tunneled. My vision feels tunneled and I get very detached, even more so. Uh, this is so hard to explain. But mentally I get a big detachment and I almost feel tunneled (my vision) and I’m so disoriented. When that man called my name this morning, and all I was trying to do was sit down to eat my waffles – that’s how basic my functioning really is. And that’s how hard I have to concentrate to accomplish these things at all, or to stand a chance at accomplishing something. Even just walking, everything I do takes intense concentration. I find myself, now that I’m struggling harder to pay closer attention to my everyday – which I don’t like to do because you’ll go crazy if you do. But anyway, I’m trying to pay more attention to it. And I notice how much I concentrate on every little step – still after 5 years.
I remember this in the chair (where I was bedridden for almost 18 mos), if someone was calling me and the phone was right next to me, I knew I wanted to answer it so I could scream HELP – so someone could come help me. But I just couldn’t process how to move my arm – even if I COULD move my arm and most days I couldn’t – but on the days where I could at least move my arm enough to grab the phone or something, I couldn’t process and make my arms or body do that. Which is more of a mental disconnect. I couldn’t understand the steps I needed to take and couldn’t get myself to take them. I was very confused about the process of reaching to pick up the phone. So I remember that, but I guess I’m sort of shocked at how it still affects me every day. I’ve just learned to cope and adapt.
But today was a good example in that it’s something so horribly minor, you know. That guy just calling my name is what did it. And I was doing something so super simple. Which is just trying to get my waffles from the toaster, which I was able to do. But then I had them in my hands and somewhere in between the toaster and the plate, the guy called my name. And that was it.
I was frustrated, but I hid it very well. But its very frustrating for my brain and I cant help but be frustrated.