I don’t like having seizures, but then who would. I don’t have photosensitive epilepsy, actually, I don’t have epilepsy at all and so it really sucks getting seizures anyway. I’ve been on various anticonvulsants and given the choice between nasty daily side-effects or a handful of seizures a year, I choose door number two. I remember the arguments with my neurologist in particular over this decision. Photosensitive seizures can’t be controlled well and I used to try and avoid all possible stimuli, but then realized it’s easier to avoid the precursors. Generally, flashy lights alone doesn’t trigger a seizure. Something else has to happen first to lower my seizure threshold a bit, such as not sleeping, not eating, stress, dehydration, heatstroke bla bla bla. I’m as careful as I can be, but life is risky and so I’m not neurotically obsessed. Do I take unnecessary risks? I don’t think so.
I popped into VH again today despite having a seizure due to its graphics yesterday. Does that make me stupid or brave or both? I still don’t think avoidance is helpful. The things that get me is everywhere. Sunlight particularly at sunset or sunrise that flickers through slatted shutters or when driving, through trees by the road. Flashy lights, dodgy fluorescent bulbs are a nightmare and most TV shows and video games come with plenty of high contrast flickering and flashing. I can’t avoid it all. Rather than avoiding it completely, I try to minimise. Chris has the habit of covering up my eyes with his hands instinctively when anything begins to flash, the looks we get for that in the cinema is priceless. Friends are often extremely helpful by paying attention for me and giving me some advanced information on television shows, games and youtube video’s so I’m a little better prepared to miss the dangerous parts. I do my homework, particularly when it comes to WoW, but past a certain point, it’s about getting out there and living life. I know I have to change my screen angle in VH if I’m going to be okay. I know that a mage spamming arcane explosion, which tends to happen every time I let Chris into a battleground or a timed CoS run with me, is a headache. I deal with it in creative ways of not seeing and not looking and not noticing. It’s an art.
If I’m lucky, it just gives me a very bad headache for a few hours or a few days. If it’s summer and I’m hot and tired and stressed, it’s probably going to be worse. The biggest problem is that the more likely I am to have a seizure, the more likely I am to put myself in a situation that may instigate it. The worse off I am, the less I can think and reason. It feels as if my capacity for logic shrinks more and more and its something that scares me. On a normal day, I can play chess with Chris and have no problem whatsoever planning 10-12 moves ahead. On most days last week, I had issues remembering which pieces move in which way and whilst playing the computer on easy mode, I had to enable the function to highlight possible positions as I kept trying to move my Bishop in a straight line or my Castle as if its my Knight. Needless to say, I lost every game. I wandered into VH whilst Chris was at work and got caught by the visuals because I looked straight at it, thinking ‘isn’t that pretty’. Go me.
I’m generally a sensible and smart person. My judgement at times may drown in awful, but most of the time, I would hope almost all of the time, I know how well I’m thinking. I have little circles of trust in my head. Chris and the cat gets to stay all the time. A couple of friends are okay to annoy most of the time. A few more is fine to hang out with when I epitomize the stereotypical dumb blonde and only if I’m at least reasonably with it will I engage with anybody else. It’s a good strategy to employ and mostly it’s one that works pretty well. I don’t find dislocating joints upsetting any more, not even when I can’t get it back in, but I still find my complete lack of common sense disturbing. One should be able to trust one’s judgement. Most of the last week is a big blur. I used to worry about what I did or say and now do not remember. Chris insist that I should keep histories of conversations, but I refuse. Spending my day trawling through old chats to see if I said something stupid horrifies me. I have more confidence in myself than that. I know that I know better than to spam the guild or general chat when I don’t feel well. I may join a PUG in a bit of a haze and run a heroic, but I won’t talk whilst I’m at it. I have pre-written macro’s for the standard replies so I’m all set. There’s only five people on my msn list for good reason and if I say something silly I’m sure they’ll let me know or just accept that putting my foot in my mouth or running around logical loops has got to be part of my charm. I can’t fix what my exhausted brain does and so fumbling is inevitable. It’s reassuring to know that almost always, its okay.
Deciding whether I can do something or do something competently becomes an easy decision to make compared to can I communicate with someone and communicate well and appropriately at any given time? I spent years avidly avoiding video games because it may trigger a bad migraine or seizure just like I spent years not talking to anybody because I may say the wrong thing at the wrong time to the wrong person. It’s taken a while, but I made the decision to take risks. The risk of playing a game that with every new patch makes me worry about the unknown and how I’m going to get past the seemingly impossibly difficult bits and the risk of making friends and trusting people to listen to what I mean to say rather than to what comes out of my mouth. Accepting that I stumble a lot and often has made making decisions easier. If I trust someone with the good on the good days, it means that I trust them with the bad on the bad days. Easy decision. Or is it? I’m a perfectionist and it’s difficult to realize that there isn’t always a best decision. It’s tempting to just step back, stop doing the flashy stuff, stop talking to people other than the cursory small talk and stick to solitary pursuits that’s safe and virtually risk free. But if I did that, I would’ve missed out on the most meaningful and fun stuff I’ve done this year. I value solitude and when late Thursday evening physical things started to go very wrong, I made the decision to let Chris sleep and left my computer turned off for a while. Some things do not require an audience and when things go very wrong, I go quiet and people do not even enter into consideration. I do routine things on autopilot and it never occurs to share what’s going on even with the people that really matter.
Chris put some washing on this morning and asked ‘what the hell happened to the towels in the tumble dryer?’ as he pulled a once lovely white and cream set out that was stained all over. My reply: ‘I bled a little on Thursday evening/Friday morning, remember, I told you about it Saturday evening?’ He used to be exasperated with replies like those, but now he just says okay and bins the towels. I don’t mean to not tell, I don’t even mean to downplay, I just go to that cold and quiet place in my head where language disappears and everything else becomes a clumsy fumble and I try to do the best I can with what resources I have left. I’m a difficult person to live with, I’m a difficult person to be friends with and the most difficult part is explaining that I mean well and have the best intentions, but it all gets fuzzy and the world spins too fast and I get lost in the twirling and loose my way a little. Luckily for me, there’s a husband and a cat and friends and evenings in the backgarden staring up at the sky that invariably help me find my way back. I wish I could make the right decisions and say and do the right things, but the best I can do is minimize the damage and have faith that everything will in the end, work out okay. Perfect, in any case, is so overrated.