There is always a temptation to write in the “we” so it sounds less pointed or personal, but I am afraid it’s just me saying the things I intend to say today.
There is no “we” in this case, only me outlining my weaknesses with the hope that someone out there will find my words useful.
I see what people write on Facebook sites all the time. Their entries run from ridiculous to frightening. Most of the time they ask questions, wanting answers about doctors, medications, their own seizures, and, finally, what is normal.
My sister says normal is merely a dryer setting and not a true barometer for one’s life. I tend to agree with her on that; but, for just this moment I would like to look at “normal” as the way the rest of the population perceives the world without distortion or filters of fear, anxiety, pain, self-loathing, and a kaleidoscope of memories and impressions that sometimes pours in.
I am talking about looking out the window, seeing a blue sky and green grass, neighborhood buildings, and perhaps hearing the sounds of children playing or neighbors leaving for work. Along with these sights and sounds are thoughts centered on a busy day, planning a meal, or feeding the dog. Nothing more. This is normal for me, and I wait for it, cherish it, and wonder at it when it happens.
I begin my day looking out the back window into the world outside, but I never know what my brain will tell me. Many times my thoughts are overlaid with feelings or impressions of the past. I look outside and I see a neighborhood in Houston, but my mind, my emotions, tell me it’s a cotton field in Arkansas, a parking lot in Louisiana, or a dorm in Indiana.
Until my diagnosis, I thought other people lived like this. After my diagnosis, I realized there is a difference between remembering something and experiencing something mentally that is out of your control. I now know this experience is part of the seizure cycle. For those of us with TLE, the seizure is only part of the disease.
I have a theory based on no medical information, just observations from my experiences. My theory is that when temporal lobe seizures strike, in an area of the brain that stores memories and emotions, they irritate surrounding tissue, and that is what we see, feel or think following our seizure.
Once, while I was still working, I went through a horrific meeting filled with a lot of yelling and nastiness that would have been more suited to a day care than a healthcare corporation. I got up and left the meeting, aware that I was going to have a seizure. I went into a stall in the women’s restroom looking for a measure of privacy so I could pull myself back together. It was there that I had the seizure, the electricity flowing over me for a moment, along with the nausea and the pain.
But it was what happened afterword that I found really interesting. While still in the stall, I was mentally transported to a job I held right out of college. I could hear the music that was on the 8-track player, smell the dyes in the clothing, and I see the face of a woman I hadn’t thought about in years.
Her name was Alice, and she had these really long eyelashes. At that point I saw her so vividly I could have counted each lash. Clearly, this memory had something to do with the seizure because it had nothing to do with my day or the experience of the meeting. It was completely random.
And so it has always been for me with these emotions and impressions that I cannot control. I have learned to talk to myself about this when I am in the cycle so I am not carried away with what I feel or sometimes see. Policing my thought, as as it were.
It is the “normal” that I use to gauge where I am in the seizure cycle. An absence of uncalled memories has become a beautiful thing. It’s the normal I wait for each day, hoping it will stay awhile. The normal outside of the seizure cycle allows me to be in control and not the other way around.
So I wait. The music of Ben Fold’s Annie Waits running through my head: Annie waits for the last time / Just the same as the last time. / Annie says “You see this is why I’d rather be alone.”