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Not long ago, I was talking to a physician in the hospital about my temporal lobe epilepsy. He would not admit it, but he did not know much about TLE because he kept trying to convince me that I did not have epilepsy.

As a matter of fact, he refused to believe my MRI. He wanted me to believe I was the victim of some unremembered sexual assault (which was purely “grab at any straw” speculation because we had not discussed anything about my past not directly related to my TLE and treatments). To this doctor, I couldn’t have TLE because he didn’t know anything about it.

He said something else that caught my attention when I stopped reeling from his response. “Well, you know, most people experience déjà vu. It doesn’t mean that you have epilepsy.”

(Quick note. Déjà vu, from the French for already seen, is the strong sensation that you have already done or seen what you are doing or seeing at the moment, which may not be true.)

I laughed and said that I didn’t have many déjà vu experiences as a rule, but I often had jamais vu. As he looked at me with a puzzled expression, I realized he didn’t know about jamias vu. That’s when I began to think about what jamais vu meant to me and how often it was recognized in other people.

The best definition I have seen of jamais vu comes from the Merriam-Webster Medical Dictionary, “a disorder of memory characterized by the illusion that the familiar is being encountered for the first time.”

When I look back at my jamais vu experiences before my TLE diagnosis, I remember a great deal of shame and embarrassment.

I did not have incidents where I failed to recognize a person I knew, which is often the example you find when looking up the term. Instead, it was always an act or a process that completely caught me off-guard, like the time I went to dial the phone (in the days of a rotary dial) and just looked at it, having forgotten how to use it. I felt frozen in the moment as if something had gone terribly wrong, but I didn’t know what.

The fact that I remember that incident all these years later is probably an indication that it resulted from something other than stress, which happens to all of us at some time. I have looked out at an audience of 500 individuals waiting for me start my presentation, only to forget what I was going to say. That is a stress-related incident, which is probably not what we are talking about here.

I am not sure how you can really separate a stress reaction from jamais vu in some circumstances. I’m not a doctor, remember?

Other events are easier to label jamais vu:

  • Hearing words, as a child, and not recognizing them;
  • Forgetting how to put a key in the lock on my door; and
  • Leaving out the main ingredients of a recipe, such as eggs in deviled eggs.

The deviled-eggs incident happened after church when I was supposed to fix the eggs for lunch. I had all the ingredients except the eggs. I was staring at the bowl when everyone came home from church, trying to figure out why my eggs didn’t look my mother’s eggs.

So, people labeled me as acting dumb or being dopey. And honestly, I believed them.

My anti-seizure drugs, or anti-epilepsy drugs (AEDs), actually caused me to have more seizures, which caused me to have more jamais vu when it came to recognizing and identifying common objects like a table. I knew what the table was, but I couldn’t reach far enough into my memory to grasp the name.

These days, my jamais vu usually involves seeing something that I have looked at every day, sometimes for 20 years, and thinking it is new, having no recollection of having seen it before.

A small area of chipped paint on the bathroom wall is visible only when I’m taking a bath. This chip has been there since we moved into the house 18 years ago, but more than once I have looked at it and gotten upset about it. And I would be upset for about 30 minutes before I remembered it was not new.

I look at books and wonder when they showed up. I see a picture on the wall, one I pass by several times a day, and go into near hysteria trying to find the old one that should be there, only to realize I gave it to my daughter years ago, which I had forgotten during the better part of the hour I spent tearing up the house looking for it.

Needless to say, I try to stay as quiet as possible about my “discoveries” until I can figure out if they are true or the result of a seizure. Thankfully, my husband has some indication of the distress on my part and will patiently help me reconstruct an event when it seems that I am not going to pull it back in myself.

It is because these episodes bring distress and confusion that I think it’s important to recognize they are happening. It’s my opinion that jamais vu slips through the cracks when we’re looking at all the other aspects of TLE.

If jamais vu is a simple seizure, you should be aware that you are having one. If you are like me, it’s also good to know you are not just being ridiculous.

You can read about jamais vu if you search online long enough. And when you do, you’ll find many theories on what is happening, some of which are ridiculous, in my opinion.

But, more important, if it is happening to you, look at it, remember everything you can about the events surrounding it, and come to your own conclusions about what it means for you. Don’t let people label you as being dumb or dopey or any other label that makes you feel badly about yourself and your condition.

TLE is difficult enough without having to deal with the belittlement from others.

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