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).

Second 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…