Epilepsy Update 27 February 2017

A part of me is always working in the background to remain calm in the face of threatening anxiety. 

"Don't believe that nameless, undefinable feeling of dread", are the words that constantly repeat themselves over and over again in my head. "That feeling is only an illusion." 


My mind wanders to the hundreds of people with Epilepsy I've met in blogs and chats who all deal with that same feeling, and I know that what I'm going through isn't anything exceptional, nothing to "worry about", not a sign that there is anything distinctly wrong in my case.

I am "normal", so to speak...

The sign says Uncertainty, established 2008. The end of January 2008 to be exact, when I had my first grand mal seizures out of the clear, blue sky. No prior history, after 48 years of pretty much perfect health. Up till that point I took it for granted that I would be the same when I woke up the next morning as I was when I went to bed the night before. Making plans for the next weekend wasn't a problem either- there was no worry as to how I might be doing when the weekend got there. 

All of that changed when uncertainty became established in January of 2008. Now uncertainty rules my life. I never know how my brain will be when I wake up the next day. When friends ask me over on the weekend I cannot say yes with absolute surety, because I cannot know what condition my brain will be in. I could be fine on Friday and barely human when I wake up Saturday morning, or barely human on Friday and fine on Saturday morning. 

Also, the beautiful things in life are made uncertain- and even filled with a certain amount of justifiable nervousness. 

Take the coming weekend for example. The 2nd of March is my oldest daughter's birthday, and the 4th of March is mine. For years now we have normally come together around that time and celebrated both of our birthdays together in some fashion. That's a beautiful thing, and a thing you look forward to. This time- the coming Saturday- we will gather in Würzburg (where both of my daughters live), they and their boyfriends, as well as some friends of theirs. It is likely that my Conny will not be able to come along, meaning that I will have to take the train to Würzburg. Under normal circumstances I love riding the train, listening to music with my iPhone and bluetooth headphones, looking out the window and watching the scenery go by. I just love travelling. Most of all seeing my girls is one of the most wonderful things on earth. Any parent with adult children knows how important that is after they've grown up and have lives of their own, and you don't get to see them that often anymore. 

Enter the uncertainty of Epilepsy...

I can have no idea how I will be doing when I wake up Saturday morning. It may be good. It may be bad. It may be pure torture. It may be somewhere in between. I have ridden the train before with my brain so lost in that epileptic daze that I looked up at the timetable board and could not process any of it, eventually fighting my way through to the knowledge that I needed to get to track 9, or whatever track the train was leaving from, then standing there until it came to me that the next step was to somehow find that track, and that the first step to that was to look for signs pointing to where the tracks are. Suddenly the fear engulfs me that I might get on the wrong train and end up in Berlin instead of Würzburg and I find myself paralyzed! My brain begins to sizzle. I am nothing but a cauldron of torture inside.  Automatic processes take over and I begin to calm myself, reminding myself that I just need to go really, really slow, one step at a time, not panic. I "come to" and realize that I'm still standing there in front of the timetable board and no closer to the track that I need to get to. I look around and see masses of people moving in every direction and making all kinds of noise in a scene of complete chaos, and feel a sense of despair wanting to wash over me. All of my strength threatens to leave me. It's all I can do not to give up, not to sit down right then and there and just cry. Instead I breathe deeply, calm myself as much as possible, gather as much concentration as I can, and find the sign that points to the track number I need. Then I slowly, carefully begin to make my way through the crowd toward that track. I turn the music up in my headphones to drown out everything else around me so that I can focus on my own little world and my one goal in life at that point: find that track! Having found the right track, the next step is to make sure it's really the right train that I get on. Once on the train I can finally relax. That is normally when I have a couple of complex partial seizures, when the stress lets off. 

At such times I have then spent the whole day in that Epileptic daze, totally lost and barely able to follow what's going on around me- and trying to hide the fact from my daughters all the while out of embarrassment, burning vast amounts of energy just to stay afloat. When the visit is over that whole thing with finding the right track and getting on the right train begins again...

On the other hand I've traveled to Würzburg on the train when my brain was ok and really enjoyed it!

It is not too often as debilitating as the situation I wrote about above, but there is always the fear that it may happen again, or that I could have a massive complex partial seizure- or even a cluster of them- while on such a trip alone. Still, I will have my rescue medication along. On top of that I live among a very helpful people. I could always find someone who would help me if I were to need it.

So what will it be this coming Saturday? Who knows?

At least nobody could ever claim that life with Epilepsy is boring...