Excuses, excuses, excuses (explanations?)

Temporal_Lobe_Epilepsy-3(You probably won’t think this is in the least bit funny. But it is. And I’m back to the Oprah-style confessional I’ve talked about before. I’ve written this experience here before. Well, it’s interesting enough—to me, at least—to bear repeating.)

Back in 1981 the rector of the church where I was organist sent me to talk to a psychiatrist who worked exclusively with alcoholics even though there was no indication that I was one. There was good reason for me to see him, but it wasn’t my problem.  It was someone else.

My insurance paid for six psychiatric visits. On the last visit it was obvious to the doctor that we had beat that horse to death and needed something else to talk about (this was back when psychiatrists were therapists, not pill-pushers). I decided to talk about my deepest darkest secret.

I knew that at times I could walk through walls. Yes, my mind was unconnected to my body, and it could pass through the wall to the next room. Several times in my life I had experimented to see if it was, in fact, true and had discovered it was not. But that did not lessen the very real belief based on the way I felt that I would eventually be able to do it.

He asked about other oddities of my mental experience which led me to tell him about the high b-flat pitch I sometimes heard, followed by white noise, followed by the sensation that I was looking down on myself and knew what was about to happen next because it had happened before. The good doctor told me he had been in medical school with neurologist whom he thought I should see. Dr. Norman Geschwind of Harvard Medical School.

Dr. Geschwind was too busy to see me, but one of his protégés, Dr. Donald Schomer, had time for me, and I very soon began my weekly treks into Beth Israel Hospital. The diagnosis was that I suffered from (suffered?) Temporal Lobe Epilepsy. Of course, CTScans and MRIs and sleep-deprived EEGs and all other manner of testing has never revealed any of the lesions in my brain that are thought to cause TLE, so I could be making the whole thing up simply for my own entertainment.

But I’m not. It’s too spooky and scary (especially as a kid sitting in Mrs. Hall’s second grade class at the Longfellow School in Scottsbluff, NE, in about 1953 when I first experienced it) to make up. And fantasy would not explain the last time I knew for certain I had a seizure—at Christmastime about five years ago when I approached the assistant manager of a Target store and told him I didn’t know where I was or why I was there and the next thing I knew I for sure, I was sitting in their Burger King and a policeman was down on one knee in front of me asking if I needed to go to the emergency room. In the meantime—well, I won’t tell you where I went in the meantime. You wouldn’t believe me, anyway.

geschwindDr. Geshwind posited what has become known as the “Geshwind Syndrome.” It’s weird:

Hyperrelogosity, Hyposexuality, Humorlessness and Hypergraphia with increased concern with philosophical, moral and religious issues, and extensive writing on religious or philosophical themes. Other features include aggression, pedantic speech, a “sticky” or compulsive personality. . . (1).

Three out of four ain’t bad. But then, other features apply, so who knows? About me, that is.

Is my extensive writing about “philosophical, moral and religious issues?” Well, yes, except I’m not as brilliant as Joseph Smith or Ellen White or Ann Lee. Do 110 posts here since January 31 (180 days ago, minus 16 in Europe when I wrote in pages on my iPad, minus the 50 or so I wrote and didn’t post) count as extensive writing? How many of them are about . . . issues? Aggression. Have I written about smashing my cane in the cathedral in Helsinki? Pedantic speech? Duh. Compulsive personality? Who, me? My friends might tell you that I have a pretty good sense of humor, but my basic outlook on life is essentially humorless (look at the description of this blog and tell me how many postings are humorous).

I have spent a good part of the last 32 years running away from the idea that God sent me to that psychiatrist for the very purpose of my meeting Dr. Schomer so that God could provide me with a name for those weird things that happen in my head. I don’t even believe in God.

Now don’t get all weird on me. I’m not claiming spiritual insight. I’ve never had a Near Death Experience, and I don’t feel the presence of God in my life. Many such experiences are connected with TLE. Read the Comings article if you want to know about them.

Here’s what I really want to say. TLE has many other co-presentations. Depression, sleep disorders, memory problems, inattentiveness.  It’s the memory problems and inattentiveness that are eating my lunch right now.
I forgot the appointment with my primary care physician that was necessary to prepare for the arthroscopic surgery scheduled for tomorrow to fix my hip. It’s caused problems for, well for everyone. I’m not saying TLE is to blame. I’m just saying that there are many things about my life that I wish were not so. I am senescent. But that kind of inattentiveness has been my lot at least since second grade. ___________
(1) Comings, David E. “The Neurobiology, Genetics and Evolution of Human Spirituality: The Central Role of the Temporal Lobes.” Neuroquantology 8.4 (2010): 478-494.

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?