Epilepsy Update 28 December 2016

As much as I hate to admit it, I've been battling against sadness, or depression, or whatever, since the day after Christmas. 

As I sit here right now, trying to formulate thoughts into words, my brain is revolting. I see scenes in my mind that I'd like to write about, and desire to describe how they connect to what I'm feeling right now. But it seems so hard to do! I see it in my mind, barely begin to grasp the meaning, and it slips away again before I can get hold of it. It's all swirling around up there in my head, without any structure or pattern. It would be so easy to give in to depression at this moment, to wonder what the purpose of all of this is, to a life lived in an epileptic daze, never knowing when or where the next seizure is going to hit- or when a really bad one may come, to a life where even the normal, everyday tasks and activities cost 10-1000 times the normal amount of energy, depending on your condition on any given day. As the picture above says, all seems dull and pointless. Yet that's nothing new. That feeling comes over and over again, and it always goes away again, sooner or later. When it's there I try and be as quiet and still as I can and wait until it goes away again. 

One of my daughters was out of the country over Christmas this year, but the other one spent Christmas day with Conny and I here in Aschaffenburg, and that was beautiful. My brain was somewhere in the middle between bad and good, and I just tried to take it nice and easy, not become sensory overloaded. My daughter is used to my condition and can deal with it pretty well. That daze was a little worse the next morning, the 26th, when she left, and it felt bad not being able to think right, not really able to feel, confused, not able to do anything about it. I wanted to say some kind of profound words to express the love I feel for her, how proud I am of her, etc, but there was just no way I could formulate any profound words.

The epileptic daze stayed stronger than the day before that whole day, like my brain was immersed in oil or something, or stuck in a fog. I wanted to go right back to bed after my daughter left in the morning, let down the shades, and stay there for the rest of the day, but I didn't. I puttered around the apartment instead. 

Conny and I went out to eat in the evening and I scraped all of my energy together, every ounce of concentration and will, because I wanted to be there for her and be present and able to converse with her. She really needs that. It did work to a certain extent, but part of what she talked about was very difficult for me to take. She talked about how important talking is to her, having conversations, and especially about how she feels she generally has too few opportunities in her life to talk about herself and the difficulties she goes through in her social life and at work. Now listen to me: Every time I have any kind of capacity at all I give her everything I have, right down to my last spark of energy. We're generally talking about evenings after work and on weekends, of course. I normally listen to her just about every evening when I'm in a good phase, and at least a couple of evenings a week during bad phases. But it's not enough for her. That doesn't feel good. It makes me feel like I can't take proper care of my woman. 

So my brain was even worse yesterday, the 27th. What a nasty, nasty feeling. You don't feel like doing anything. Just nothing at all. Yet I got dressed and walked into town anyway. My girls had given me an iPhone 5 for Christmas and I wanted to buy a bumper for it, so I walked to the mall to get one. What I saw when I got there should have made me turn around and go back home immediately, but it didn't- I almost never do what I should do. I could swear that all 70,000 residents of Aschaffenburg were at the mall! I've written before that crowds are one of my seizure triggers- sensory overload, I guess. I decided I really wanted that bumper though and I wanted it now and would try and get in and out really fast, but that proved difficult. Now I am by nature a peaceable man who wouldn't hurt a fly- except in defense of my family or myself- but that crowd set me so on edge, what with people blocking everything and stopping right in front of me without warning, and just generally jamming everything up, that I was tempted to go into TaeKwonDo mode more than once and teach people to stay out of the way. Listen, there I am, for example, standing in front of the iPhone accessories at Media Markt, brain in an epileptic daze, trying to figure out which bumpers are for the iPhone 5, and which of the million varieties I want, when three people step right in front of me, completely blocking my view, and stand there looking for bumpers themselves! I had to fight the anger that came welling up within me- as well as the knowledge that a spinning roundhouse kick would take all three of them out in one fell swoop...;-)

Thoughts like that are only fleeting, of course, and what I did do was to kind of carefully shoulder between two of them and grab the bumper I'd been looking at. One of them looked at me a little funny, but I ignored him. I paid for my bumper and got back home as quickly as I could. Once there I put on my training gloves and pumped some iron...

That evening Conny wanted to talk, and she did, for two hours...

I'm feeling sad right now and getting all of this off my chest, yes, but I don't think I'm feeling sorry for myself this time. These are simple facts of life. 

My life with Epilepsy...