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.
Category: Recorded Scraps of Paper
When I had words, or at least what seemed to me to be sensible thought, I’d record my fragmented thoughts on a recorder I wear around my neck. I’m not always able to get words out to describe what I’m thinking. So when I do have words (even if it’s tangential babble) I tried to record in hopes that I’d someday be able to pull something useful out of my recordings. Mostly my intent was to be able to then use these recordings (or even the written scraps of paper) to relay my symptoms/issues/needs to physicians. I have hundreds of recordings and transcribing a 5 min recording takes me over an hour – I work in small increments, a few mins at a time. So far I’ve transcribed some of my ‘brain’ recordings and a few of my ‘eyes’ recordings. I’ve placed some of my transcriptions in the timeline according to date. I *might* put more here, just not sure if I’m comfortable with that yet as I’m not sure they make sense to anyone but me.
Recorded scrap of paper – 04 July 2014
I looked forward to this for weeks. I rarely get to leave the house, and in order to be able to go with my family on the 4th I saved up all of my energy for several days. I do very little as it is but this meant I couldn’t spend any energy – I didn’t try to pick up my son, take a shower, etc. – for days. I also saved up what little Glutathione I had on hand and did injections for the days leading up to this, and also right before we left. I stayed in bed to conserve energy… and this is still how it turned out.
It’s the 4th of July and we, uh, drove – not too far away up in Longmont and we were in the parking lot at Target, watching the fireworks. And um, the parking lot was full. Almost everyone in the parking lot was tailgating so-to-speak. And um – (Oww, my eyes) … Um… it didn’t seem so bad when I was watching the Fireworks, but I went to go try and drive home I had a real hard time seeing. Um I mean, I could drive straight, I could see enough to make out where I was – I mean, I was safe – I couldn’t see street signs. Everything was not just blurry… I could… when I got closer to the street sign then I could make it out for that split second and then it would be blurry again, and then it would be … um, I mean not totally blurry – it’s hard to describe. But my eyes. They even hurt. Not badly, but enough that it – I mean it hurts. They don’t feel good at all.
Even when I close my eyes I feel like everything is just moving. At night – uh, there was so much glare. I was driving down darker roads and the street signs are bright (and lit from the inside). With better eyes it would have been very easy. But my eyes just got real tired and it got real bad. And right now its real bad, there’s no way I could read a book. I cant make out things. Um… Everything seems not so much blurry… I mean uh, kinda blurry… but definitely doubled. And it’s very straining on my eyes. So its just a big contrast of being out vs. being home. There’s nothing worse about today, this is just what happens. I uh, I just normally don’t leave the house (especially at night) and it just got tested just now. And for some reason my eyes are… really are bothering me. And it’s difficult to see very well. (sigh) This just sucks.
Continuing the last recording about my eyes…
My sensitivity to light is significantly worse and I have to turn the lights out. I noticed quite a bit of relief – when I walked in from the Garage to that little hallway there and the light was on. That light really bothered my eyes. And when I turned the light out, it was very noticeable – ahhhhh. Bit of relief, you know. And um, I just walked into the dining room where Nikki and Aedan were – are – and uh, Nikki was reading the Series of Unfortunate Events book. Or one of those books. Chapter book – one of the ones I read a few pages to Aedan at night sometimes. I tried to make out the letters on it and I just couldn’t. They were doubled, and it was very straining to try and focus. Um, its hard to describe. I can make things out, but it takes a lot of strain. Especially I notice when I’m trying to read the smaller letters, that they’re doubled. Very slightly but they’re noticeably doubled. And uh, it’s very weird but very uncomfortable feeling. My eyes… they really bother me.
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 – 19 March 2014
The light really tires my eyes out. Nikki and I just got back. We went and picked up the boy from school. Right before we did that, we took a drive for about 45 mins or an hour. Up Canyon or one of those roads into the foothills. You know, just to see nice scenery for a change and not stay home. But uh, I mean I generally can’t do that for very long. And now I… I can tell my eyes are just tired. They feel puffy and numb and like they don’t want to focus. Or that they’re slow in focusing. And uh, light really bothers me. I really have to stay in a house that’s pretty dark. Blinds are drawn, and uh, it’s been a long-standing problem. That sensitivity to light, but… it seems like about an hour and a half or so is the most I can be outside. And that’s wearing a shading hat and glasses – really good polarized glasses, and being in a car. So it’s not like I’m outside in direct sunlight even. It’s just being outside in an area that’s brighter than our house. You know. It’s a big problem for me.
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.