If you imagine each synapse as a door to another room….

(from an email)

Brain tissue is a problem, but new brain pathways do spring up. Also, the current research seems to indicate that music thinking is a precursor to language, so it’s deeply embedded.

Well, those new synaptic pathways are also a problem for epileptics, as synapses connect in ways they shouldn’t and rerouting around synapses that should be connecting, thereby sundering the neuronal pathways to parts of the brain. It’s as if a neuron that had one hundred possible connections now has only five possible connections. If you imagine each synapse as a door to another room, suddenly ninety-five rooms have been locked shut, and everything within them is now unavailable forever. That is the impact partial seizures have on our brains, a few neurons at a time. When you realize that entire behaviors can be the result of a handful of connected neurons, it is amazing just what can be lost with even a virtually invisible seizure. A seizure is like a power surge in an electrical system, arcing currents and burning out circuits and wires and damaging machinery. As the temporal lobe seems to be much more vulnerable to this than the frontal lobe, every time an epileptic has a partial TLE seizure, some of the pathways are sundered and information is lost forever. Most we are not aware of. It can take decades to realize things are missing, though I’m sure the vast majority we have no idea we lost at all, simply because you can’t remember what you no longer remember.

Advertisements

Mañana, mañana

It is really funny how messed up things get as your executive functions slip away. You look at things, realize you used to be able to keep all that straight and organized and systemic, and wonder how. You pile a pile of them in different piles. Then you got into the kitchen to make a cup of coffee, start talking to the wife, and busy your self on some tangent. Laundry, maybe, the dishes, an old film noir, an essay, a book. Hours later there’s a messy couple stacks of things that you forgot what it was you were doing with, and you put them back into the single pile from which they came. Mañana, mañana.

Tuesday something

(written a couple years ago….)

It’s Friday morning, and here’s the old people medical news, plus a ten pen cent discount. Good article in AARP magazine about the meds you take and why you can’t remember anything. Luckily for me both my anti-seizure drugs (that sounds much nicer than anti-convulsants) are listed so now I have twice the excuse for not remembering your name or what I promised or where I am. Plus the good thing is that I have twice the excuse for not remembering your name or what I promised or where I am. And here’s an article about the meds you take and why you can’t remember anything. Thank god it’s Thursday. Or Tuesday. Though it doesn’t look like Belgium. Or Weld, for that matter. And I read somewhere that some meds affect your memory.

I was going to say something.

Memory! That’s it. And you thought I couldn’t remember anything.

Tuesday Weld, looking like she forgot something.

Tuesday Weld, looking like she forgot something.

Music

One of the more fascinating, if unsettling, things about a neurodegenerative disease is how parts of your personality slip away unnoticed as synapses wilt and whole brains parts shrivel. These past several years music slowly stopped being a vital part of my life. I find myself going days, even weeks, without listening to it except in a car. I have a huge collection of recordings–vinyl, cassette, CD, digital–I barely touch anymore. I fear I could sell them all and miss only the mementos. And I scarcely ever write about music anymore. There was a time I did so fanatically. That time has gone. Somewhere in my head, in the temporal lobe or frontal lobe or both, enough neurons have been singed to make music less important to me than, say, books or old movies. I love the music people and I love the excitement of skilled improvisation, but very little else moves me anymore like it once did. I thought a couple years ago that maybe it was just a spell, maybe being a jazz critic had burned me out, but no. It’s permanent. I still love music, but it’s no longer essential. I still hear it all the time, tunes going through my head, but somehow the emotional connection has faded. Like it’s still up in my frontal lobe, intellectually, but the feel and soul of it in my temporal lobe has shriveled away with my bruised and battered hippocampus. I wish this bothered me more, but it doesn’t. Still, I wonder with a chill what, in ten years time, will also have faded away in significance.

Father’s Day

I’ve been looking at dozens of Father’s Day posts on Facebook. They are beautiful things, those posts. Often very beautiful. Full of love. But  they all strike me as odd. They shouldn’t, but they do. Because I don’t really have any powerful memories of my father. He died way back, around 1990, I think, and it was sudden and an emotional bruiser. That I remember. I remember the funeral. I remember the wake. It was a good wake. He was German, born in Flint, Michigan,  but married into an Irish family and just loved the idea of a wake. He really loved New Orleans funerals — Dad played trombone — but the wake was doable. And we did it.

But that was a long time ago. And the memories before them, of my entire thirty plus years with him, well those are faded at best, and utterly missing the rest. Epilepsy does that. Big seizures — what they used to call grand mal but are now tonic clonic — can make entire memory banks just disappear. Poof. Gone. Like they never were. I had a mess of those big seizures from maybe age 20 through 24, I’d say at least half a dozen. They were nocturnal, coming out of nowhere during deep sleep. I don’t remember them. I just know what people told me, all freaked out, sometimes screaming at me they were so scared. There’s be broken things around, and blood on he pillow from biting my cheeks. Otherwise waking up was quite blissful. The next day all the muscles in my body seemed to hurt, like I had pulled every one. I never seemed to take a day off of work for something as little as epilepsy and just went about my business, every step making something hurt. And suddenly I didn’t remember a lot of stuff. Sometimes I noticed. You notice if you don’t know your name, or who you are, or who anybody is. That all comes back quickly though. Longer term stuff, though…if that’s gone sometimes you never notice. That’s the funny thing about long-term memory — what you don’t remember want bother you. You don’t know it was ever there.

That’s where a lot of my father went. Zapped away in a big giant seizure. Gone. Poof.

But I think epilepsy affects long-term memory in other ways, too. Mainly, I think it weakens it, or maybe just shortens its retention. So stuff I still remembered after my seizures, stuff that came back to me, well at some point since then those memories just kind of faded away. Not zapped away instantly but just sort of slowly disappeared, like a morning fog in a sunny afternoon. The memories get more and more faint and then one day aren’t there at all. Not that I noticed they were no longer there. How could I? I didn’t even realize it was happening. You don’t if it’s something you don’t use every day. But long-term memory is by definition something you don’t use everyday. It’s something stored away to be remembered a long time later.

A lot of my Dad faded away like that.

Most epilepsy, though, isn’t those big crazy seizures. That’s what you think when you hear someone is epileptic, the big dramatic seizures, the falling sickness. But most epilepsy, absolutely the overwhelming most common form of epilepsy, is what are commonly called petit mal seizures. Neurologists call them simple partial seizures *. They affect little sections of the brain. Sometimes just one part. And sometimes they spread like a forest fire, one there, then one over there, then one over there, each throwing an electro-chemical spark that lights the neurons in the new section into more simple partial seizures, Have enough of them, over and over and over, for days or weeks or months at a stretch, you’ll notice things changing. Things not working right. Certain cognitive skills being impacted or disappearing altogether. Sometimes they reappear, or sometimes they can be rebuilt. The brain, extraordinary thing that it is, can do a lot of its own repairs. Essential memory seems to be recovered. Maybe not 100%, but it comes back. But I think that maybe that the brain rebuilds some of that missing capacity by taking neurons used for one thing and using them for another. Maybe facial memory (I lost most of that once, but it seems to have come back) was restored utilizing some neurons used for certain types of long-term memory. You don’t have just one big thing called long-term memory. It’s scattered through different parts of the grey matter, and is divided up functionally. You remember names here, friends here, family here, things you learned in school there, there and there, etc. And well, Dad was dead. Been dead a long time. Those neurons (what you call memory cells) that are dedicated to retaining memories of my father are neurons that the brain used to repair other damaged parts of the brain. My brain took a lot of damage in 2006. Simple partial seizures swept across it like wildfires, like a season of wildfires, month after month after month. The brain seemed to begin repairs as soon as those fires abated though. Functions slowly came back. It’s much improved from its low point. Then, a few years later, my brother is telling a very detailed story about my father and me and I realized I barely remembered my Dad at all. He was a shadow, two dimensional. A television show I watched as a kid and barely remembered. I don’t even recall what he sounded like. I’ve forgotten his voice. Imagine that. Not remembering your father’s voice. Yet it seemed more odd than sad. He was my dad after all, and you’re supposed to remember your father’s voice. But the emotional connection was gone. If you can’t remember somebody, what they sounded like, it just doesn’t bother you. It should, but it doesn’t. It doesn’t because he is no longer in your memory. Because that memory is gone. Poof.

Memory loss is a weird thing. It ought to bother you but it doesn’t, really. Not if it is non-essential memory, memories you don’t draw on every day. And you can’t miss memories you can’t remember you had. But I do know I loved my Dad, we were good buddies, he was senior, me junior. I was the first born son. He’d tell me that I was the man of the family when the company sent him off on another business trip. He taught me all kinds of stuff. But I don’t really remember that either. In fact my entire life before my first big seizures, until I was nineteen or twenty, is just a smudge. When us siblings get together and tell stories I can remember just a fraction of any of them. It’s like I’d  never been there. Or maybe had heard the story third or even fourth hand. That’s where my dad memories are.  All those memories people are sharing today, those are memories I know I had, must have had, but I have no reference point. They’re gone. Like they never even were.

Just the same, Dad, Happy Father’s Day.  I may not know what it was I’m missing, but I’m sure I’m missing you nonetheless, like a good son.

.

Notes: Continue reading