Things calmed down a few days after my last entry- the 17th of October- and I had 4-5 good days. As a matter of fact 2 of those days were absolutely perfect! No sign of Epilepsy at all! There were only minimal discomforts on the other days. I breezed through those days with a song in my heart, full of energy, my body feeling young and healthy. I enjoyed being around people and even conversing with people.
What a relief! A time of rest. Time to recover and re-charge my batteries and prepare for the next round.
Yes, I'm finally beginning to accept the fact that there will be a next round. I'm learning to stop trying to convince myself that I have finally achieved the ultimate, permanent "good phase" when I do have a good phase, the good phase that will never end.
They talk about the "power of positive thinking" and I've always lived by that principle and have always been, in fact, a positive person, but thinking the Epilepsy will not flare up again while in a good phase is a bad thing in this case because Epilepsy IS an up and down thing and it WILL flare up again and I will only be in for a big disappointment if I believe otherwise.
The good phases are for resting up and recovery. For re-charging my batteries. For reflection on the last flare-up and how I coped with it, what may have helped and what may have made it worse. In other words to learn from the last bad phase in order to be able to cope with the next one better. The power of positive thinking doesn't apply to stopping bad phases in this case, but rather to coping with them better in the future. They cannot be stopped. They are a part of life and always will be.
So I enjoyed those few days of freedom and health, and reflected on how I coped with the last bad phase. It was obvious that I had allowed the emotional storm to defeat me once again, to beat me down and suck the very life out of me. I en-devoured to try and stay in control of my emotions and not let myself fall the next time- to stay calm and still inside and just ride it out. That's what the experts tell you:
Stay calm and let it happen...
The project I run at work deals with adults but there are many other projects as well. Three of the other projects, all of them dealing with young people doing rehab apprenticeships, are required to take them on an educational field trip each year. The problem is that they have around fifty young people all tolled and there are only female employees and they wanted to have a couple of men along for the trip this year. So they asked me and our company psychologist to come along, and we both agreed. That meant a long bus ride on a chartered bus and three days at a youth hostel in Stuttgart, and many activities while there. Now "only" about thirty of the clients actually showed up for the trip but there were some behaviorally challenged individuals along. We left on the 2nd of November and returned on the 4th. I was actually kind of looking forward to it. I had gone along last year and it had been a great time. Plus, here I was having a good Epilepsy phase. I was feeling so good that I had even driven one of my own clients to a clinic in Frankfurt a.M. in a company car the day before we left for Stuttgart! Hey, you know I've got to be feeling really good before I get behind the wheel of a car! That only happens like three times a year or so!
I was feeling a tiny bit fuzzy as we all got into the bus on the morning of the 2nd of November to go to Stuttgart, but no big deal. I told myself to just stay nice and calm and everything would be fine, it wouldn't get any worse. I didn't feel much like talking and found a seat by myself and mostly just stared out the window for most of the ride down there. None of the kids knew me so they didn't try and talk to me anyway.
I did see some indications that I was dealing with a bunch of over-sensitive babies when I had to go on the bus intercom and try and set up a WhatApp group to insure communication during the trip. I had to swallow some impatience that wanted to come up inside me that made me want to snap at them and tell them to grow some balls! In the end it wasn't possible to set up that group and I was forced to set up some kind of complicated broadcast that I'd never done before because they were so finicky and fussy and prissy.
After having ridden the horses that I've ridden and climbed the mountains that I've climbed in my life I get a little sick to my stomach when confronted with the sissified youth of our day, whose idea of roughing it seems to be going more than 10 meters from home without a soft, pink pillow for their tender feet.
Oh well, I did the best I could and went back to my seat and stared out of the window for the rest of the ride. After arriving at the hostel we checked in and ate lunch.
Our first activity after lunch was to go to the planetarium. I used to love the planetarium as a kid but hadn't been to one since like the turn of the century, and I was really looking forward to it.
I soon discovered that the planetarium is an Epilepsy trigger for me...
I came out of there reeling...
We let those young people go for a couple hours after that and we colleagues went to a cafe for a cup of coffee. My brain was fried and my whole body was trembling. I was having motor-skills difficulties- but tried to act like everything was fine in front of my colleagues. We found a cafe and sat down.
Suddenly I got hit by a bad complex partial seizure... 
I tried to tough it out and not let it show, as usual, but it kept intensifying and I finally had to go outside. I stood out there on the sidewalk leaning on something, too ashamed to sit down even though the ground was pulling at me with all its might. Deniz, our psychologist, came out at one point and asked if he could do anything for me. What people don't realize is that asking if they can do anything for you while you're having a seizure is the wrong thing to do because it's so difficult to talk, and not being able to talk right makes you feel like an idiot, which in turn makes the whole shooting match worse than it already is. All you want is for someone who cares to just be there with you, but be quiet. It does a lot of good if they comfort you after the seizure ends .
That trip was over for me at that point...
A bad seizure had been triggered by the planetarium and I would not recover from it for the rest of the trip...
That seizure lasted for maybe fifteen minutes and left me with a terrible migraine that raged on for the rest of that trip, and for several days afterward as well, complete with all of the trimmings. My brain was scrambled eggs. My nerves shot and I was extremely irritable and short-tempered. I was in a permanent state of sensory overload.
The perfect condition for dealing with a bunch of special snowflakes...
I think the worst thing was, however, that my emotions completely and totally crashed during that seizure. I fell and hit rock bottom.
I spent those days hyper-aware of my "lone-puma" existence in this world, as I do during every Epilepsy related emotional crash. My professional life consists of listening to other people's problems and my private life is full of people who mainly talk about their problems, yet I myself have had no one to talk to for decades. All attempts I've made have been met with rejection. I do not even try. I cope with the fact very well almost all of the time and actually need no one- with the exception of such times as I'm describing.
Still, I tried to put on a brave face on that trip when with others, but I literally broke into tears and balled my eyes out each and every time I was alone.
Hot tears of deep, deep sadness and loneliness.
I lost my temper with those sissy snowflakes a couple of times! I lost all patience and really went off the deep end and became very unprofessional in my discipline. On the 2nd occasion I basically had them sitting in a circle and I went up and down in the middle like a drill sergeant, berating them bitterly for being a bunch of sissies who weren't fit for the realities of a dog-eat-dog world. I basically told them they'd better grow some balls or else quit right now and go back home to their mamas and stay there- not forgetting to fill out a welfare application on the way!
I did admit to them the next day that I'd overdone it, and apologized...
Conny was waiting for me when the bus pulled into Aschaffenburg the final day of the trip. I got off the bus, threw my bag into the trunk of the car and she drove me home. Once home I just took my clothes off and went directly to bed and slept for several hours.
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