Whose Temporal (lobe) Reality Are You In?

Now I lay me down to escape "that way"

Now I lay me down to escape “that way”

I wade knowingly and willfully into dangerous waters where I have no business splashing around. The following is about getting old and about humor.

A few days ago I was in a friend’s apartment. I had arrived moments before. I greeted my friend, put down the bags of groceries for our dinner, petted the cat, and put my cane out of the way. I went into the bedroom to change from the long-sleeve shirt I was wearing into a T-shirt I had brought along in case we decided to take a walk. All of this took perhaps five minutes.

I noticed myself in a mirror, and commented silently to myself that I thought I was wearing a different shirt. Then I remembered I’d changed my shirt. That is, I thought I remembered. But I wasn’t sure I hadn’t dreamed everything I’d done since I parked in the Neiman Marcus garage around the corner. None of it seemed real. Even my thinking about the present moment was not real. I was watching myself from a place that seemed to be outside my head.

I know from experience that if I accept the proposition that what seems to be happening is happening, eventually I will know—and not simply have to pretend I know—it is. That is, know with as much certainty as any human being can know.

OK, so back to earth.

If you’re still reading and (perhaps) wondering why I’m making a big deal out of something that you and everyone else has experienced many times in your life, I’ll let you in on a secret: you may have had such “out-of-body” experiences. I’ll bet they are neither as in-your-face nor as frequent as mine are. Or as scary as mine used to be.

The first time I remember having this experience was in Mrs. Hall’s second grade class at Longfellow School in Scottsbluff, Nebraska. 1953. I clearly remember nestling my head in my arms on my desk hoping “feeling that way” would soon pass. I named the feeling  early on so I could manage my life around it.

My temporal (lobe) reality

My temporal (lobe) reality

It seems a little strange now that it took me so long to realize that I could predict when I was going to “feel that way.” It was after the high B-flat (three octaves above middle C) ringing in my ears that lasted an undetermined amount of time and then exploded into white noise. Those events almost always preceded my checking out of reality, sometimes for a few seconds, sometimes for quite a while. And I came to realize that more often than I hoped it would, everything that I experienced while I was “feeling that way” happened over again. Not always, but often enough that it terrified me.

Here’s the humor. Imagine a seven-or-eight-year-old kid in Western Nebraska in 1953 trying to explain all of this first to his parents and then to the family doctor. The important concept here is “1953.” Read up on the history of neuroscience and see what medicine knew about these little quirks of my brain at that time.

I lived with “feeling that way” until 1981 when I was seeing a psychiatrist (for something entirely other—another bit of humor or bitter irony) whose best buddy in medical school had been Dr. Donald Schomer, a protégé of Dr. Norman Geshwind (Google them).  For the first 36 years of my life I never heard the words “temporal lobe epilepsy,” and then I were one.

This is an amorphous diagnosis. Neither Dr. Schomer nor Dr. Mark Agostini (neurologist at UTSouthwestern Medical School in Dallas, “my” neurologist) can pinpoint the lesion in my brain. My diagnosis is 100% from my description of my recurring experience.

Here’s the senescent part of the story. I haven’t heard the high B-flat or the white noise for years.

The last blackout seizure I had was in 2005. I went to Target to buy some Christmas lights. The last thing I remember is saying to the assistant manager of the store, “I don’t know where I am or why I’m here.” Then I was sitting in the MacDonald’s there with two policemen asking if I thought they should take me to the emergency room. I said, no thanks, my car was right out there. They said they’d take me home—I wasn’t driving anywhere.

Here’s a description of the uncharted waters. My TLE is not really “intractable,” but

The largest determinant of quality of life in intractable epilepsy is emotional health. Unfortunately, this is one of the most complex and least understood topics in epilepsy care. It is frequently neglected in the clinic, where physicians focus on seizure burden and medication side effects. . . . epilepsy itself can cause specific difficulties with mood, emotion processing, and social behavior (Hixson, John D., and Heidi E. Kirsch. “The Effects Of Epilepsy and its Treatments on Affect and Emotion.” Neurocase (Psychology Press) 15.3 (2009): 206-216).

Getting old is getting old. I don’t know if feeling much of the time as if I’m just waking up from a dream counts as humor. I’ve begun to think so. However, I know the IRS is not amused by my tentative grasp on reality.

Whose temporal (lobe) reality do you mirror?

Whose temporal (lobe) reality do you mirror?