Category Archives: disease

Catatonic

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I remember the catatonic victims of the sleeping sickness epidemic on the Jersey Shore leftover from the early 20’s. Forty years later they sat frozen and staring like ancient mannequins in wheelchairs being pushed slowly along the boardwalk. Sometimes it was nurses in white uniforms pushing the wheelchairs. Sometimes it was just people, their children, apparently, or grandchildren. Some might have even remembered four decades before when this inanimate person they were pushing along was as animated as all the people on the boardwalk were now. The person in the chair just stared, frozen, never moving. People walked by, some unnoticing, some staring and whispering like we were doing. It was rude to stare, but it was the eeriest thing I’d ever seen when I was a kid. I couldn’t take my eyes off each of them. There must have been a convalescent home nearby. Maybe more than one. There had been thousands of people who’d been stricken with sleeping sickness in that part of New Jersey.

Encephalitis lethargica was the medical term for it. Victims could scarcely move. There were five million cases world wide in the 1920’s, a third of them died (in comparison the Spanish flu pandemic killed 10 to 20% of its victims.) Nearly all the rest recovered fully, except the small percentage who never unfroze. There were probably hundreds of those people in New Jersey, especially on the Jersey Shore, where the disease had clustered. No one knew why there were so many cases in that part of Jersey then, I have no idea how much more they know now. I read once that doctors theorized it might have been some bizarre after effect of the Spanish Flu that had swept the world a couple years before, like how you get shingles if you had chickenpox. Not everyone who had chickenpox gets shingles. Not everyone who got the Spanish flu came down later with encephalitis lethargica. Apparently it’s still unproven. All they know for sure is that it’s only seen in very rare instances anymore. No epidemics. It’s forgotten.

But when I saw Awakenings four decades later it brought all those memories back. A beautiful summer evening in Asbury Park. I was eight or nine or ten. A statue rolled by in a wheelchair. Then another. Are they dead, I asked. No, the poor things are alive, they just can’t move. Like they’re frozen? Yes, but look at their faces, my grandmother said. The one being wheeled past was smiling. I still remember that frozen, unlaughing smile. The eyes looked at me, through me. The hand waved, never moving.

Everybody on the Shore knew what they were. They got the sleeping sickness and never recovered, my grandmother whispered, Lord have mercy on them. I don’t think I heard it called encephalitis till years later, and I never knew their catatonia was a particularly tragic variant of Parkinson’s Disease till I read Oliver Sacks’ medical memoir. I just knew sleeping sickness came from a mosquito bite, though it didn’t. It was some viral thing. African Sleeping Sickness was passed on by a bite from a tse tse fly, and terrified folk wisdom assumed this sleeping sickness came from a mosquito bite, like yellow fever. A frightened public mixing up epidemics. I know I was terrified of being bitten by a mosquito and freezing and staring, but my mom said it didn’t happen anymore. My terror subsided and we moved to California and I never saw one of those profoundly paralyzed victims of encephalitis lethargica again. They became part of my collection of Jersey Shore memories with the elm trees and salt water taffy and the sad but funny bloated faces of puffer fish left way up the beach after a storm.

A lifetime later the memory is still vivid as I remember the people in their wheelchairs on the Asbury Park boardwalk. Watching them stare frozen as the summer crowds streamed past them, as the years streamed past them, as time itself streamed past them. I feel a dead chill inside. A ten year old’s quiet terror. Stop staring, my grandmother said.

Alzheimer’s

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I see a lot of people lightly tossing the word senile around today. Senile was what they called Alzheimer’s before it had been officially diagnosed as a disease. There were other dementias that came under the heading of senility, the various neurodegenerative illnesses that sometime accompany old age, but Alzheimer’s is by far the most common, an epidemic becoming a pandemic. The number of cases is definitely increasing, doubling since the year 2000, though as with all neurodegenerative diseases Americans find it very uncomfortable to acknowledge. Indeed, it’s rarely mentioned anymore in celebrity obituaries. I remember that Mary Tyler Moore died of Alzheimer’s. That is about the only celebrity death from Alzheimer’s this year in which was mentioned in the media. It certainly was not the only one. You can figure that a full third of celebrities in their eighties or older either died of or with Alzheimer’s. So there is a disconnect in America in the awareness and recognition that Alzheimer’s kills millions of people annually, even when the incidence has doubled in the fifteen years. Researchers don’t know why it has doubled, but you’d think a galloping increase like that would send the nation into a panic. Instead it’s had the opposite effect. The more common it becomes, the more we pretend it isn’t there. People used to talk about Alzheimer’s, obituaries used to list it as the cause of death. You can find all kinds of lists of celebrities who died of Alzheimer’s yet oddly, they list very few from the past few years. It’s a secret condition now, embarrassing, shameful. And at the same time Americans stopped talking about Alzheimer’s you started seeing a lot of comments on Facebook about so and so (usually a celebrity or politician) being senile. It’s been a while since people have bandied the term senile about so freely. It used to be very politically incorrect. Because when you joke about someone being senile you are generally joking about them having Alzheimer’s. After all, senility is an obsolescent term for Alzheimer’s. But Alzheimer’s isn’t funny, we’ve all seen it, all known someone with it. And a lot of us will die of it. The longer people live, the more will die of or at least with Alzheimer’s. Most people live into their 80’s now, and one out of three of them will have Alzheimer’s. As other causes of death are reduced the number of people killed by complications from Alzheimer’s will only increase. That is the reality. Now I admit it’s not as funny as calling some old person senile. Not that I’m telling people what they can or cannot say. I make no judgments. Feel free to call old people senile. But it is funny when people who are so hypersensitive about other slurs make unintended Alzheimer’s slurs on Facebook. I read the comments and wonder how they forgot just what senility means. It’s almost like they’re senile.

Ruminating over brain damage and other fun things on a Memorial Day weekend‏

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(2008)

Fighting off a bug this weekend and catching up on my reading. So I’ve been going through a big stack of cognitive/neurology newsletters I get…why I get them I don’t recall. Brain in the News. Interesting stuff, though, all kinds of articles. There’s a lot of talk about brain injuries suffered by Iraqi veterans (this was 2008), particularly due to concussions caused by roadside bombs. Not much good news. Very profound after effects with a lot of changes in memory, skills and most fascinatingly behavior–victims can get quite nasty, vile and dangerous even. Scary. It is astounding how much damage can be caused to the brain by concussion alone.  Which got me to thinking….

I wonder during the First World War, especially on the Western Front, just how many concussions were inflicted upon the soldiers who were subjected to all that shell fire?  Millions of shells were fired. Hundreds of millions*. Falling in a very small area, upon enormous numbers of men, for four years. Even accounting for all the duds and the non-explosive gas shells, that is an incredible amount of explosions in a small area upon a lot of guys over a long period of time. Who knows how many of those soldiers were concussed, and how often? There must have been, then, enormous numbers of men in postwar Europe who suffered from the after effects. So……….did those after-effects collectively have an effect on post war Europe? Did those hundreds of thousands–maybe millions–of concussed soldiers with all those classic symptoms of paranoia and hostility and rage and depression and confusion—were they in numbers sufficient enough to actually alter the social and political atmosphere of societies and nations in the post-war years? Pre-war and post-war Europe were much different places. Post-WW1 Europe was much more violent, rent by extremism and sociopathic political movements. And I wonder if any of that mass brain damage among the men of Europe in the twenties and thirties somehow made Nazism possible? Would normal people ever have fallen for it? Hell, was Hitler himself a victim of post-concussion effects…is that what made him so evil?  He spent time in the trenches, exposed, and was nearly blown to hell a couple times. A lucky bastard….but did he suffer after effects?

Just an idea. But the Europe of 1918 to 1945…man, that is one inexplicably berzerk place.

Another horrible phenomenon that fascinates me is all these incredibly violent ‘armies’ of boys in Africa. They seem to be raised from the masses of orphans left by AIDS. There must be tens of millions of orphans in Sub-Saharan Africa, and in many places so many adults have died or are dying that the social structure is simply not capable of taking care of them. Hence sociopaths collect them, Manson-like, into armies and as they’re just kids they make ideal killers. Of course, HIV is becoming less lethal as the more virulent versions kill their hosts and like malaria soon it’ll just incapacitate but leave the hosts capable of bearing and raising children. The supply of AIDS orphans will drop, and those armies will disappear. Funny how that happens.

It’s interesting that the Spanish flu pandemic had a mortality demographic somewhat similar to AIDS in that it killed almost exclusively people in the 18 to 35 year range (roughly..I can’t remember the exact age range but it was young adults. The reason for this, incidentally, is that people above that age and kids below hat age had a resistance they’d developed after being subjected to a flu strain that the vulnerable group in between missed…and perhaps missed because of a strain of flu they had as children.) The flu killed tens of millions in Europe in 1918-19. I am guessing, then, that it left millions of orphans, especially combined with so many fathers having been killed in the war. It’d be interesting to see how many young Nazis in the early thirties were orphans, if the incidence was higher.

Anyway, a little something to ponder on Memorial Day I guess.  War and it’s leftovers seem to linger long after the shooting stops.

Notes: Continue reading →

Chick magnet

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(Email from years ago.)

There was a kid here at work a few years ago, a nice kid, good looking, sensitive, Appalachian, smart as hell, woodsy, a musician. He’s a member of a local comedy troupe that are popular in Hollywood as those things go. One day he came to me looking depressed and scared and said he’d been diagnosed with multiple sclerosis. So sad. Welcome to the short bus, motherfucker, I said. I always say that. One of those cognitive issues in-jokes. He laughed. Being that I was the big brotherly epileptic guy in the office, he asked for advice about how to remember to take his meds and how not to lose his car keys, things that seem minor unless your memory is degenerating. I filled him in best as I knew on sundry disability things like the Americans with Disabilities Act, which helped him get a permanent medical leave, and where to leave those car keys (the exact same spot every night.) About how leaving notes around doesn’t seem to work and all you do is find notes around later that you forgot were there. I told him how to make himself a little boring, unchanging, because deeply seated memories, rote things, seem to have a lasting power that regular memory doesn’t. I went over some tricks with names you can’t remember and faces you can’t recall. I tried my best to cheer him up, but the poor kid was so depressed. I said look, you’ll adapt, your life will continue. He said no, it’s over, no job, no more playing guitar and no more comedy. Certainly no girlfriend. Not even a date….what girl would want to go out with a guy with MS? I said dude, you don’t get it: you are now a Chick Magnet. He shook his head. I said Yup. You’ll bring it out in them. They’ll love you to death. He was skeptical. No way, he said, and moped off to wallow in the thoughts the brain impaired wallow in.

Fast forward a few months and he’s still playing guitar and still doing improv. And he’s dating a big six figure television star. She’s rich, successful and nuts about him. Even talked all about him on late night TV, in front of god and studio execs and everybody. He blushed. I laughed. If it hadn’t been for his mildly damaged brain, his MS, she would not have paid attention to him at all. Well, maybe, but he would have just another cognitively fully functioning guy, and you know how dull they are. Dime a dozen, perfectly self-sufficient and always seem to know where their car keys are.

Play your cards right and a little brain damage might be the best thing that ever happened to you. Remember that. Of course you all can remember that. But we have to leave little post it notes around the house, and you know how well that works.