Conny and I drove to Wiesbaden yesterday and picked out, and ordered, our wedding rings! We went to a woman, an artist, who makes them by hand, of mixed materials.
I had written in my blog entry yesterday that the tension and anxiety were beginning to loosen a little, and they continued to loosen a little more the rest of the day. We're talking millimeters of progress, but believe me, every little bit helps when one is in such dire straits. They eased enough that I could work with it, not let it get to me quite as much. I was able to give my attention to Conny and converse with her as we drove to Wiesbaden, and we even took a walk along the Rhine river after we'd taken care of the rings.
It's so strange: such a joyous occasion, yet that joy is encased in a brain that hurts, that doesn't work quite right all the time anymore, and that causes a lot of emotional chaos- as well as feelings of guilt for even thinking of doing this to her, marrying her in this condition. Wouldn't it be more humane to set her free? Yet I have encouraged her to seriously re-consider her decision a number of times, based on my illness, and she says there is no question in her mind that she's sticking with me. Amazing! I just don't get it, but there it is...
The tension and anxiety may have eased just a touch yesterday, but I had a couple of unpleasant complex partial seizures, albeit short ones. The first one happened as we were going to the car to leave for Wiesbaden. All was well for a while after that. We got off the Autobahn somewhere short of Wiesbaden and drove through a number of small villages, when something very unusual, and very unsettling happened. Something which hasn't happened in quite a long time: I had a series, or cluster as they say, of auras.
Epileptics who have an aura before a seizure can lay down- especially before a grand mal- in time to minimize the danger of injury when they fall- as well as getting into a safe position. Epileptics who don't have auras just suddenly fall over wherever they are, no chance of trying to get into a safe position before the seizure begins.
My doctor's words are always at the back of my mind: my case has progressed to the point where it's no longer possible to completely stop the complex partial seizures, and it is no longer possible to rule out generalized, or grand mal seizures, and to keep my emergency pill close at hand.
That cluster of auras yesterday caught me completely off guard- and scared me. What did it mean? Was it possible that I was about to have a grand mal seizure??? That would sure mess up my life- even more than it is messed up now. Just thinking about what it would do to my career alone sends shivers up and down my spine, because it would no longer be possible for me to work on the project that I'm working on now, working with complete self-responsibility as I do. I don't think they would fire me, but they'd likely think they would have to assign me to a different project than I'm on now, one where another person would always be near me, with an office where I wouldn't have to use any stairs, no more contact with outside companies or government offices, etc, etc, etc. They would strip me of all of my independence.
Try and imagine what was going through my head at that moment with Conny, in that car. I've been in such a bad way for the past few weeks and hardly able to pay Conny any attention. Now I'm finally able to give her some. We're on our way to pick out our wedding rings. It's a beautiful, sunny, unusually mild day. We're driving through idyllic little German villages. Then suddenly I start having auras, that I shouldn't even be having- unless the medication isn't working right, that is. If a grand mal hits me while we're driving I could fall over onto Conny and we could have an accident. Should I tell her to stop so that I can get out of the car and sit down on the sidewalk until it's over? But that would destroy this nice time for her that we're having, after so many bad days! Am I just overdoing it? In the end I didn't say anything. In the end the auras stopped and no grand mal came.
Here's how those auras were: we would be driving through a village when I would see something, like a building, or a fountain, etc, and would suddenly have a strange sensation of deja vu, like I'd seen that before in a dream or something. Right away I would feel a sense of dread and fear, and become sick to my stomach. At the same time the whole world would change, look different, feel different in some in-explainable way. It would ease after a second or two, and then the next one would start. That happened maybe 4-5 times. Now don't get me wrong: all of this was very weak compared to how it was before the medication. Back then those auras were so extreme that you were engulfed by panic instead of fear, and instead of dread it was pure, unadulterated horror that went to the very core of your being, just before your consciousness was sucked down into a funnel- and you later came to at the hospital. Those auras yesterday were weakened examples, maybe one hundredth power. They were very unsettling and gave me a feeling of dread, as opposed to horror and panic.
I worked out after we got home, as usual. No light workout this time however. I used a little more weight and forced myself to work harder, to not be such a weakling!
What is the sense in all of this???
As my head begins to clear a little I realize that I think I know what's been bothering me unconsciously for the past couple of months, why I seem to have completely crashed- and especially since my vacation started: I'm just plain sick and tired of all of this! I just can't take it any more! It's simply too much for me to handle. Now don't get me wrong. I'm not suicidal in the least. I'll go on plodding along as long as I live, on all fours if necessary, but I'm sick and tired of it all. I don't feel like going anywhere or doing anything because my brain just won't work right and concentration costs so much energy, and I've lost my courage, my stamina at the moment.
What good does it do me to be on vacation when I know that I'll have to go back to the grind again soon? Back to the uncertainty of not knowing how each day is going to be when I leave in the morning? Always waiting and hoping for another good phase to come, then when one does come it lasting only a week or so, then feeling terrible again for another 2-3 weeks? People, I'm sick and tired of it! I'm sick and tired of trying to act like everything is ok in front of other people, sick and tired of not being able to live normally, sick and tired of being sick and tired all of the time. Yet what can I do?
I've comforted myself for a long, long time by saying that it would get better again, or that the Lord would heal me when I'd learned certain lessons from it. I finally realized a couple of months ago that none of that is going to happen after all. I have Epilepsy, and that is that. It will never be good again. I guess I fell into a big hole emotionally when that became clear to me.
Anyone reading this may think I'm only feeling sorry for myself, and maybe I am, but hey, try Epilepsy for a month and then we'll talk, ok?
Imagine you're making your sandwiches for work in the morning and forget what to do with the knife for a moment or two, until it comes back to you? Imagine you hop on your bike and pedal out into morning rush hour traffic with a raging migraine, maybe even having your first seizure of the day along the way? At work you barely get your PC fired up and your colleague walks in and begins chattering incessantly before the door can even close behind her- and you've got to have a report written within an hour because you have an appointment with a very difficult client after that? And you have to stay calm, cool, and collected through it all.
I'm just sick and tired of it...
The lady from the Epilepsy counseling says I need to think about reducing my hours at work, but I can't even consider that, at least not at this point. My team leader at work says I should consider getting a handicapped ID so that I'd be entitled to one more week of vacation per year, but how is an extra week of vacation supposed to help the day by day struggle with seizures and migraines, and above all those blasted emotional storms? Besides... getting a handicapped ID is like crossing some kind of a line for me...
I'd appreciate any thoughts or comments anyone may have...
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