For the Love of Words: MS Edition

There is plenty of Latin-based medical terminology that is now a part of my vocabulary, thanks to MS. The gift that keeps on giving. For example, I learned that the word sclerosis comes from Medieval Latin and means the hardening of a body part. But here is my question: Why can it never be my abs that suffer from sclerosis?

One of the lobes of the brain is called the Parietal, from Late Latin, meaning “pertaining to the wall of an organ.” I’m not sure why the Ancient Romans had need of such a word. But nevertheless, they had it. I’ve learned that one of the responsibilities of the brain’s Parietal Lobe is to tell us which way is up, which is important information. Especially when we need to pee. But apparently, those Latin brain walls are not the grand protective barriers of, say, the Great Wall of China. It seems my immune system has breached my brain walls quite handily.

I discovered a bunch of great words while I was Googling my symptoms. Dr. Google is always the most reliable way to arrive at a solid diagnosis and a treatment plan. The good Dr. G also helped me realize that I might have leprosy and possibly testicular cancer.

Here are some more big words for little MS symptoms:

You know that light you see in your eye when squish your eyes closed? It’s called phosphenes, and it is the phenomenon of seeing light without light actually entering the eye. It’s magical. For the first five minutes. Then, you hang blackout curtains, have people get in your bed to see if they can find the light’s source, and try various sleep masks. After that, you will find yourself spending a great deal of time with your eyes dilated or lying on your back and being shoved into an MRI machine.

Then there is the MS fatigue, marked by dysania (finding it extremely hard to get out of bed in the morning). This is not to be confused with clinomania (an obsession with bed rest). It isn’t a compulsion that keeps me in bed, it is genuine exhaustion coupled with medication hangover, which leaves me feeling more marcid (incredibly exhausted) than when I went to bed.

Aside—how much does it suck that they are changing the SAT? I spent so many hours learning words like the ones in these posts! Hours! Never mind that those words are of absolutely no value in my life and that I have not even thought of them--let alone used them--in 20-some-odd years. Stupid standardized testing.

I love the word yuputka. It’s from a Native American dialect and it has no English equivalent. It describes that phantom sensation you feel after walking through a spider web. The feeling of something crawling on your skin.

My hands experience yuputka, while my legs often suffer from obdormition (Pins and needles! Pins and needles!) As my body destroys my own myelin, my brain cicatrizes (heals by creating scarring) the damage. And these scars are what show up during an MRI.

Eunoia is a word describing the relationship a presenter builds with an audience.  But, it is also a medical term indicating a state of normal mental health, a well and beautiful mind. Are my days of eunoia behind me? Actually… Did I ever actually have days of eunoia? I’m not sure.  Can I blame that on MS? I’m not sure about that either, but I’m gonna. And I’ve seen pictures of my mind. Lesions or no… it is smokin’ hot.

Here’s a fun fact: eunoia is the shortest word in the English language containing all five vowels. We’ll take pretentious vocabulary for $600, Alex…

I’ve always been novaturient (seeking change in behavior or situation). I’ve always desired change, even if my ideas of what needed to change were nebulous and ill-defined. But there are two words--better word--that perfectly articulate my feelings about my MS diagnosis: quatervois (a crossroads, a turning point in your life.) and metanioa (a journey of changing your mind, heart, and self).

And this word has always captured my imagination: koyaanisqatsi. When I was in college, my photography professor screened the 1982 film titled Koyaanisqatsi: Life Out of Balance. If you ever get a chance—which will be difficult, as it is out of print and rare—see this film. There is no dialogue, just a wonderful Phillip Glass score over various rural and urban landscapes of America. Since seeing that movie, my own life’s balance has been something I consider from time to time. It is that meaningful of a film.

In the Hopi language, the word koyaanisqatsi means unbalanced life. A life so out of balance that you need a new way to live. I am trying to re-balance my life after a series of events that have sent me spinning. I think I’m getting closer. A little.

Stay tuned, readers! I’m working on For the Love of Words: Derby Edition

For the Love of Words: Heartache Edition

Remember the television show The West Wing? One of my favorite things said by President Bartlet was:

In my house, anyone who uses one word when they could have used ten just isn't trying hard.

Except sometimes, a single word can express ideas that are rich and complex. They encapsulate the nuance of a thought better than any ten words. I like to collect those holophrastic* words. Yes, I am a total nerd. No, I don’t use them everyday or try to shoehorn them into a conversation. But, they make my writing more interesting. And they help make me hard to beat at Scrabble.

So here are a few words about heartache that I have filed away over the years. While the vocabulary might be varsity level, I think that the meanings can be universally understood.

You know that feeling when you meet someone the first time and you know—you just know—that you are going to fall in love with them? The Japanese have a word for that: koi no yokan. Certain recent life lessons have made me wary of koi no yokan. And being afraid of that feeling makes me sad, because it is such a beautiful, dangerous, exhilarating feeling. And a tiny part of me hopes I won’t feel again.

Another beautiful but dangerous word: sillage. French perfumers will often refer to the scent that lingers in the air, even after the wearer has left, as the sillage. But there is also the sillage of a person who leaves your life. The invitation to attend the Pink Prom. The email from your favorite Ogden restaurant.  The brochure in the mail with the summer symphony schedule. The picture you tucked away in a book because it was too painful to look at. That picture will always fall out of its hiding place at the most emotionally vulnerable time. It’s a given.

Love has a sillage. I both wish and fear that it lasts forever.

The Germans have a flair for poetic words. The chess term Zugzwang—a situation where every decision is a bad one that results in damage and loss—is often fitting beyond queens and rooks. The Germans also coined Schadenfreude, the shameful joy you might feel when you learn that some jackass you used to date in college has gotten a black eye because he is a Backpfeifengesicht (a person who needs to be punched in the face).

German is such a beautiful language.

For the record, I am discovering anagapesis (no longer feeling that ferocious, dramatic love for someone) can be a wonderful thing. It makes room for redamancy (loving one with that love returned in full). It also allows for a true friendship to gain a foothold. The la douleur exquise (the pain of loving someone unattainable) really doesn’t last forever. Don’t prematurely induratize (to harden yourself, resisting love) your heart. And remember, there are as many ways to love as there are people that are worthy of your love.

I knew all those creative writing and poetry classes would pay off. Take that college advisor. Pfft… math and science. Who needs that? Not when there is vocabulary! And keep an eye out for part two in the series, For the Love of Words: MS Edition

*Holophrasis: (n.) the expression of complex ideas in a single word or phrase

Road Warriors

Did I mention it is MS Awareness month? Several of my friends and coworkers have asked to donate to MS research on my behalf. That is an incredibly kind and generous thing to do. And please don’t.

MS affects half a million people in the United States. And that is a huge number. There needs to be money for research. Scientists need to develop therapies. But when the pharmaceutical companies charge $1000 for each shot of medicine, it’s hard to believe that they are pushing very hard for a cure. If their drugs keep us MS patients alive and forever taking their medicine, they might not be in a huge rush to change that.

The average lifetime cost of an MS diagnosis is $1.2 million. That’s a huge number too. We do need to find a way to cure and prevent this disease.

But I have a little number for you: 1.

That is the number of kids in my house counting on Bikers Against Child Abuse to feel safe. If you want to donate some money in my name, send it to BACA.

BACA, a non-profit organization, empowers children who have suffered abuse, standing ready to lend the support of an established, united organization. They send a clear message to all involved with the abused child that this child is part of the BACA family, and they are prepared to lend physical and emotional support.

BACA stands at the ready to shield these children from further abuse. They don’t condone the use of violence or physical force in any manner. But, according to their mission statement, “if circumstances arise such that we are the only obstacle preventing a child from further abuse, we stand ready to be that obstacle.”

BACA is there for these kids any time they are scared. They ride by their homes, just to remind the kids that they are not alone. They support these kids during court and parole hearings, making sure that they don’t feel frightened or intimidated. These kids are surrounded and protected by some pretty intimidating guys. That helps when you need to be brave.

I love every single one of these guys.

When Kidlet hears the deep rumble of half a dozen Harley Davidsons headed down the street, he breaks into a smile, knowing that his biker family is coming for a visit. He runs to put on his motorcycle club vest, embroidered with his biker name: Ace.

And Ace talks and wrestles and tells Teddy, Rocky, and Red all about his latest karate belt test and good report card. Then he dons a helmet and jumps on the back of a bike to go for ice cream.

These men of BACA help replace the pain and scars of abuse and betrayal with the truth that not all men are monsters. The truth that some men will dedicate their lives to building positive mindsets and memories. Some men are good men.

Ace has Rocky’s phone number programmed into his phone. Rocky told him that if he EVER needed help, all he needs to do is call. Rocky told me that if I needed him, call the police first, then call him. And that he would arrive before the cops do. Ace and I both sleep better knowing that.

These amazing people use their vacation time to escort a child to court. They take precious time away from their own family to visit these kids. They are the most kind-hearted, amazing people. Until you hurt a kid. Then, they will stand in front of that kid for as long as needed.

These guys are bikers. They are exactly what you are picturing. They wear leather. They have tattoos and beards. They are big and intimidating, and there are a lot of them. BACA can scare the hell out of a child abuser with just one look. And the abuser should be scared. BACA isn’t playing games.

Like everything else in our world, all this costs money. BACA is funded by donations from the public. If you would like to donate money in my name and on my behalf, send it to them. I think they need it more right now.

In the upcoming months, BACA will be walking down the hall, escorting Ace to the courtroom where he will tell his story about the time he was hurt by the tsunami, Robert G. Freeman.

For a detailed account of the nine first-degree felony charges of abuse filed against Robert Freeman, you can look them up on UtahsRight.com. They are of public record.

Robert Freeman currently lives in Henderson, NV with his third wife and baby daughter. This Oracle employee, published author, and member of the LDS church is looking at what I am sure will be a very uncomfortable jury trial. With a lot of really large bikers sitting in the row behind him.

Ace is going to be just fine. His entire family has his back.

To make a tax-deductible donation to BACA, go to:
http://www.bacausa.com/Internet/Merchandise.php
Buy a shirt or a mug. Send the Wasatch Front Utah Chapter of BACA some money. I think the people with MS would understand.

Please spread this information. All of it.

Oh My God. I Think I’m a Nihilist

I’ve noticed a trend. I read sad books. I don’t intentionally seek out stories of despair or depression. I just sort of gravitate to them. While a friend was exploring my considerable book collection, he kept asking what I thought of particular titles. I didn’t realize that I kept answering his questions with a version of the following brief review:

“It’s really good, but so sad.”

Things Fall Apart: It doesn’t end well for anyone.

The Old Man and the Sea: You know Hemingway.  He has the whole “shoot-yourself-in-the-head” vibe.

The Lovely Bones: Well, the protagonist is a murdered 12-year-old…

Sophie’s Choice: No. Just no.

This also happened when I was looking through my audiobook collection for titles to loan my sister.

The Passage: Post apocalyptic vampires in a dystopian world.

Horns: Guy falsely accused of his girlfriend’s murder wakes up one morning with devil horns.

She’s Come Undone: Overweight, ostracized girl loses her mother and goes off the deep end.

And the very worst, very tragic, poke-your-eyes-out-to-avoid it… Fifty Shades of Grey. It’s not the story here that is so depressing. It’s that someone made so much money with such terrible writing.

My love of depressing literature got me thinking: Am I a nihilist?

The philosophy of nihilism starts with the basic idea that life is without meaning, purpose, or intrinsic value. Morality does not inherently exist. Knowledge is not possible. Reality is an illusion.

Let’s give that a moment to sink in.

Does my taste in books make me a nihilist? Maybe not by itself. But the thing that really got me thinking about my nihilistic leanings was True Detective.

I binge-watched this HBO drama with hardly a bathroom break. I was pulled in, completely absorbed. And that is a little bit troubling. For those who don’t know, True Detective is a crime drama series in which two homicide detectives in Louisiana track down a serial killer. Think Silence of the Lambs meets Soren Kierkegaard.

Aside—As phenomenal as this series is, I hesitate to recommend it to anyone. And it is phenomenal. The writing is brilliant and tight, the directing is inventive and adds so much depth to the story. Even the soundtrack is perfect. But it is incredibly dark and hard to watch. You’ve been warned.

Anyway, one of the things that really drew me into this series was the wisdom of Matthew McConaughey‘s Detective Rust Cohle. (Put all your money on him winning the Golden Globe.) He embodies this incredible mix of pathos, raw nerves, and intelligence. But it is his philosophy that I found so magnetic:

“Love is just a human construct, designed to distract us from the fact that existence is ultimately meaningless.”

“Certain linguistic anthropologists think that religion is a language virus that rewrites pathways in the brain. Dulls critical thinking.”

“Linear time is an illusion. I’ve walked by before and I’ll walk by again. Time is a flat circle. “

And that last one is lifted right out of Nietzsche. My favorite philosopher.  Nietzsche's nihilism is a state of tension caused by the disparity between what we want and the reality of living in the world. That knowledge creates in us an existential crisis.

Nietzsche's believed in our eternal return, trapping us in an infinite circle of time.  "This life as you now live it and have lived it, you will have to live once more and innumerable times more.” That idea is both terrifying and beautiful to me. It sounds a little like the Big Bang Theory, doesn't it? The universe is forever expanding, collapsing on itself, and expanding again.

So, there’s all that in the Nihilist column. What else lands in that column for me?

How about my love of the Dadaism art movement and Marcel Duchamp? The Dadaists claimed that Dada was not an art movement, but an anti-art movement. The origin of their art pieces often started with existing art or found objects.  I would compare it to the way a hip hop artist or DJ pulls existing music into the layers of an entirely new piece. Dadaists tended to devalue art, which is what led many art scholars to equate Dadaism with nihilism.  Mark it down.

What about my favorite villains? Batman's Bane. Or The Joker who says "The real joke is your stubborn, bone deep conviction that somehow, somewhere, all of this makes sense!" Or General Grevious. (That dude has four light sabers! Four!) Or that insane villain--with my haircut from second grade--in No Country for Old Men. Nihilists all.

Check, check.

Then there is the whole punk rock movement. I missed as it was happening because I was too young. But I gravitated to the music as I discovered it while working in the record store during college. The Sex Pistols, The Ramones, The Velvet Underground, Black Flag. Actually, I think the Black Flag thing might have more to do with Henry Rollins.

Then there was the heavy metal music of Black Sabbath and Metallica. The alternative metal of Tool, Ministry, Alice in Chains, Nine Inch Nails.  Marilyn Manson’s Antichrist Superstar also draws from my good friend Nietzsche. I still have all these bands on my iPod.

Check, check, check.

And the movies! The glorious movies! Nihilism is an important building block of The Matrix, Full Metal Jacket, Taxi Driver, There Will Be Blood, and Fight Club. Oh how I love ye, Fight Club.

Check, check, check, check.

When most people think of nihilism in movies, the first thing that springs to mind is The Big Lebowski. OK, maybe not most people. But most of my friends do.  After all, the bad guys are flat out called nihilists. Walter Sobchak has what may be my favorite line in the movie:

"Nihilists! Fuck me. I mean, say what you want about the tenets of National Socialism, Dude, at least it's an ethos."

So when I tally all the marks in the nihilism column, does it add up to being a nihilist? Do I have an ethos? Can I find any meaning in all of it?

You know what? It doesn’t really matter.