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January 23, 2014

Every time I sit at the computer to write about something relating to Temporal Lobe Epilepsy, I wage a small war with myself. I don’t write because I enjoy it. I don’t write because I think I am good at it or because I like the idea of someone reading about my experiences. Quite simply, I know what it is to feel very alone in this illness, and something about that experience compels me to write about it in a place where others who may be suffering in much the same way can discover it. I know from my own search that sometimes the smallest piece of information, something that seems ordinary or even a little odd, can fit a piece of the puzzle into place.

My experiences at the museum seem to be hanging in my mind like pieces of a puzzle which have yet to drop into place.

Our family decided to take a trip into Houston to visit the Museum of Natural History during the Monday holiday. Our group included my husband, older daughter, son-in-law and their children, aged 4 and 2. We went in their van, driving on very busy highways. I sat in the front of the van to avoid as much of the problems with movement and merging as possible, but anyone who drives through Houston realizes there’s always a whole lot of merging going on.

Lately, I had been having a lot of problems while in a car, both as a driver and as a passenger. I know that the movement from outside the car sometimes causes me to go into a seizure cycle. I won’t have a seizure at that moment, but the experience is like adding water to a glass: add enough water to the glass during the day and boom, the seizure will, well, seize me when my body relaxes at night in the process of going to sleep.

There have been other times when I had major problems in the car. Others kept telling me it was an “emotional” thing. I was made to feel childish, broken or incompetent because of my inability (and then reluctance) to drive. I stopped driving around the time that I was 19, and did not resume until I was around 28. It never occurred to me that the size of the car, the streets I went down or the condition of my brain at the time had anything to do with it. I had been branded “hysterical” and the driving was just another symptom.

Only recently did I start to look at the possibility that the driving issues were due to photosensitivity that includes problems with patterns. I recently read a few articles that describe these types of triggers. It is good to find these articles, and to actually know what to look for to understand this type of symptom. My neurologist told me that I was photosensitive as a result of an offhand comment. No conversation about patterns, lights, triggers, etc. Gee. Anyway, I had problems on the way to the museum and not because I am hysterical.

When we arrived at the parking garage, I realized I was off-center. I was angry and didn’t want to be touched. I took a few deep breaths and I told myself everything would be all right.

The museum is huge with lots of dinosaur bones, gem samples and special exhibits. The main hall was filled with people of all ages, all of them talking, it seems. Here is where I began to get a little worried.

Let me try to explain.

Everyone has levels of filters that allow them to move through their day. They hear the radio at work at one level while talking to a co-worker on another. Everyone has had the experience of studying, watching tv and talking on the phone at the same time. People just get used to sorting and sifting sounds. So I was stunned when I realized my ability to do that has gone away.

All the noise in the lobby seemed to be at the same level. I heard the Japanese family standing at the mechanical Tyrannosaurs at the same level that I heard my husband right next to me. The sounds of hundreds of shoes on the stone floor, of children laughing and adults talking overwhelmed me.

My heart started pounding. I became extremely distracted. I fought the urge to run. I kept telling myself that something was wrong with my senses and that I needed to tamp down the fear factor and figure out what I could tolerate.

I found I just couldn’t tolerate people walking close to me or brushing my clothing; the hair on the back of my neck stood up where this happened. I couldn’t tolerate looking up through the skylight because that caused the room to spin as if I were drunk or lifting off the ground. I couldn’t bear any kind of sound.

The Carl Faberge exhibit was fairly empty and quiet. The blessed quiet along with the beauty of the pieces gave me the opportunity to take some deep yoga breaths, sit on a bench and try to determine what triggered inside my brain that caused this reaction. Lots of traffic, but no “bad” lights, the fluorescent lights that guarantee seizure and pain.

I thought of Alice and how it seemed as if I had drunk from a bottle labeled LSD. I remembered what it had been like on Topamax, something I recall frequently. Before the drug almost killed me, it had provided the filter that made me feel completely separate from the rest of the world and perfectly safe.

Just like most people walking around. Only they take it for granted.