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?

At least it’s not compulsive hand-washing!

HypergraphIa?

HypergraphIa?

I hope someday Dr. Mark Agostini of the neurology faculty at UTSouthwestern Medical School in Dallas gets into some real research about the relationship is some people’s minds among music, writing, and seizures. There’s lots of research about all of that, but I want him to do it because I know him and I want him to study me.

I MUST NOT write this morning. I have 37 essays of 1200 words that must be evaluated before two PM today, and I have to go home to take care of my cats during my 11AM to 2PM break and call three different doctors and insurance companies and my bank and get together the supporting documents to send at the last minute so I don’t lose the $1000 left in my FLEX fund, Oh, and a fourth doctor so I will be able to move without pain before too much longer. Which is more important, money or pain?

I used to have a compulsion to count people in a room. Having a meeting and want to know how Danish to buy? Ask me. Want to know how many minutes each person can speak in a crowded 12-step meeting? Ask me. Well, Dr. Mary Bret (also of UTSouthwestern) fixed that. A little higher dose of Prozac and some Lamotrigen and that necessity seems to have been somewhat lifted from my shoulders.

But here I am at 5:10AM writing this when I absolutely must be grading papers. Do you think I’m just undisciplined? Just determined to be famous for writing this wonderful prose? Yeah. Right! my favorite instance when two positives make a negative. Want to know some more? Don’t get me started.  Back, boy.

Finish this! Now! Essays to read.

I want you to read it. I want it to make sense. I want to put it out into the blogosphere. But whether or not any of that happens, I have to write this—whatever it is. I can’t not do it at this moment. If I stop now, I won’t be able to do anything else.???????????????????????????????

I’m pretty sure I used the picture of me in my “Mary Girard” T-shirt here in the last few weeks, but I can’t find it. I don’t remember what symptoms her husband reported to convince the psychiatrist she was insane so he could get her money; I remember only that students in my music classes at Bunker Hill Community College in Boston performed it, and the father of one of them, my best friend, created these wonderful T-shirts of the title of the play. I’m not insane, of course, but there are certainly days when this seems like an apt T-shirt for me to wear.

Like today. I’m so charged up I didn’t need any coffee. But all I can do is sit here and write this stuff that you will think makes no sense. Well, it doesn’t.

Hypergraphia, thy name is Harold. Gotta do it. Gotta write whether it makes sense or not. I know sometimes (like today) my mind is probably tricking me into thinking I can’t grade the student essays until I do this—because my mind knows my gut doesn’t want to do that. Then how do you explain the last 45 days of non-stop blogging?

Holy Mackerel, Andy! A guy’s gotta do what a guy’s gotta do! I had the first three paragraphs written before the coffee was brewed!

Oh, and by the way, this was going to be little essay on pain. Hip pain. Back pain. I did something fun yesterday that I (if I were a rational person) would not have done if I’d thought it through for 30 seconds before I did it. And by bedtime, the weeks-long constant pain in my right hip (most of the time low-level, but with the wrong move high-level and really annoying) had spread to my left—actually across my whole lower back and butt. I thought I wouldn’t be able to sleep, Thank you, Ambien.

The pain, by the way, is the result of—I’m sure you’ll find this in one of those 45 other postings here—one of those old man falls in the bathtub. When I fall, I can get up—so far.

Where the pain is.

Where the pain is.

So here I am writing all kinds of stuff no one should say about himself anywhere, much less in cyberspace where he can never take it back.
But if you want to know what happens to old guys who have TLEpilepsy and other weird neurological weirdnesses, just read this. You’ve probably read my stuff like this before, so it’s old news. But think for a minute. What’s gonna happen to me when I’m 85 and in the “home” and have to get up and do this before the nurses’ aides wanna be up and coping with old queens? It’s something to ponder, isn’t it?