Epilepsy and Working: 05 February 2017

I suppose anyone reading my blog might ask themselves how it's possible for me to even work in my condition, so I wanted to discuss that subject a little bit. Let me begin by saying that the days and times that I write about in this blog are often the "highlights", so to speak, that is the worst days I experience. There are many days in between those "highlights". or "lowlights" if you will, on which the Epilepsy is not as incapacitating and can be coped with, with a quiet heart and a few handy tools. 

That epileptic daze I so often mention and 2-3 daily seizures are basically a part of daily life. Yet that daze and the seizures are generally maybe one third to one half as strong as on those really devastating days such as I wrote about yesterday- it goes up and down in phases, up and down, over and over again, from maybe one third to one half strength. When a few really devastating days do come I always know at the back of my mind that it's only a bad phase and that I just have to ride it out somehow, some way. 

I think it's a matter of attitude:

First off I believe in God. I believe that he loves me, knows where I am and what I'm going through, and that everything good or bad that happens to me has a purpose- even if I don't understand what that purpose may be. I trust him fully and without reserve.  

Secondly I want to work. I want to be independent and provide for myself and Conny, and it is my profession to help people who are in very great need. It is important work and my charges are unbelievably grateful! Seeing broken people slowly getting back on their feet is worth paying any price, isn't it?


Thirdly, my Army training taught me to never give up. I should write a few blog posts about basic training one day. They put us through some really rough stuff in basic training. They pushed us to our limits- both physically and mentally- and then demanded that we go over those limits- way over! Anyone who would not, or could not, was thrown out! Nor did the rough stuff end after basic training. 
No, after that came many

other huge challenges where our limits were tested and expanded, such as four weeks in the wilderness at 22 degrees below zero or four weeks in the desert at 115 degrees above zero. You learned to keep on going, no matter what. You learned to get quiet inside and keep putting one foot in front of the other. Never stop, never back up no matter what. Always keep going in the face of hardship. 

Concentration and memory are huge problems when you have Epilepsy so I've learned to employ certain tools and developed certain structures to help with that. The director of the institute I work for hands out appointment books to each employee at the beginning of each year, and my appointment book is my surrogate memory/brain. It has an overview of the year at the beginning and one page for each day of the year after that. I have added pages for notes for each of my charges at the back. On top of that I have several mechanical pencils and each one writes a different color, each color having a meaning of its own. That appointment book is central to everything I do and is with me every minute of my work day. I make all appointments with that book open in front of me and everything that is ever talked about is written down immediately in the appropriate color, whether in a meeting, a counseling session, or a phone call. If necessary I ask whoever I'm talking to to repeat whatever they said- in case my brain temporarily zoned out and I missed it, for example. If I have a seizure I simply ask them to please wait a moment. Above all I try and stay calm and accept it, work with it, quietly wait it out. That system has been with me for so long, sits so deep, that it works automatically without me having to think about it. When I need any information at a later time all I have to do is flip back through the book and find it because it's all there, color coded and easily found. On a side note: Keeping a seizure diary is important and I use my appointment book for that as well. Since purple is the official color for Epilepsy I have a mechanical pencil with purple leads and I enter all epileptic activity as it happens each day into that book in purple, capping each day with an appropriate "emoji". That way I can give my neurologist a report at our next appointment simply by flipping back through my book and reading him the purple parts. 

On top of that the institute I work for provides me with a smartphone and a flat-rate on everything. All necessary information I may need on anything while on appointments is in that smartphone. I have right temporal lobe Epilepsy, and the right temporal lobe is responsible for things like finding your way, but that smartphone has Google maps and so it leads me around town wherever I need to go. I have a bluetooth headset so that my hands are free when I'm on the phone or being led around town by Google. I also have an app with which I can call up the nearest bus stop and the bus schedule from wherever I happen to be.

I also have a backpack with three big pockets especially for work, and everything I need for work is always in that bag, and only in that bag, never anywhere else. When I need something it's taken out, used, and then put back into its proper pocket immediately afterwards. Same with my keys: they are always either in my pants pocket or on the hook at home. Same with everything I own. Everything has its place and everything is ALWAYS in its place. That all sits so deep that it just takes care of itself. 

I use post-its a lot, whether at work or in my private life. I have several laying on my desk, one saying "memory stick" for example. So when I use my memory stick at work I put that post-it up on my monitor when I plug the drive in, then take it down when I pull the drive back out. That way I can't forget it. An example from my private life would be when I turn the heater up in the bathroom to get ready for work in the morning I put a post-it with the word "heat" up in the middle of the mirror so that I remember to turn the heater back down afterwards.

Epilepsy medications have to be taken at the same times every day so I have my intake times set on my iPhone, and it reminds me every day, three times a day to take my pills. 




Now all of those tools, those aides and structures sit so deep and are so routine that they simply happen automatically, unconsciously on my part, day by day, week by, week, month by month, year by year. So when one of those really devastating days hit me, such as I wrote about yesterday, those things become of utmost importance! I cancel any appointments I can on such days and tell anyone I must interact with that "I'm not quite up to par". I might ask people to speak a little slower, or more quietly, or to repeat themselves more often. I certainly don't get anywhere near as much done and don't consciously remember hardly anything later- but my system prevails and it's all written down in my book for later reference!