Emile Barrios

Emile Barrios

Random notes from wherever I am.

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On Becoming a Saponiphile

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If you have a compromised immune system, one of the things you must be concerned about is catching a virus, like the ones that cause the common cold. With the body at a disadvantage in fighting these viruses, infections can linger and go into strange places. I’ve been struggling the past few weeks with an inflammation in my shoulders, hips and knees – the ongoing result of a cold virus I caught in early May.

The Human Rhinovirus

Conventional wisdom is clear on this point – to reduce your chances of catching something, wash your hands often. This, of course, is because bugs are easily attached to your hands, then get inside when you touch your face. It’s amazing when you become aware of just how often your hands touch your face – try it sometime.

So I have become a frequent hand-washer and hand sanitizer. I’m much more aware of simple things like shaking hands or opening a door – and I try as hard as I can not to touch my face. Small bottles of hand sanitizer have sprung up all over the places I frequent (joining the eye drops and reading glasses that already are there). Is it possible that your sense of touch can be changed by this kind of awareness? When I find myself in a situation where there’s someone with a cold, or just in a large group of people (at the weekly AA meetings I attend, for example), I get this kind of cold sensation in my hands, and I think: where is the nearest sink and soap dispenser?

Oh yeah...

Naturally (if your brain is wired like mine), you start to become a kind of soap connoisseur (a saponiphile?). I tend to like those wall-mounted things that dispense fully-formed suds (much less work), and look coldly upon the store-bought bottles of Soft Soap that teeter precariously on those little sink indentations designed to hold a bar of soap (talk about your outmoded technology).

I don’t think I’m on the way to a Howard-Hughesian germophobia (though I suppose one easily can be both a germophobe and a saponiphile at the same time). But it’s interesting to me how the realities of a chronic illness can change you in so many ways. Some are easy to accept (hand sanitizer), some are more difficult (gaining 50 lbs.).

Michaelangelo's masterpiece "God Telling Adam to Wash His Hands Before Eating the Forbidden Fruit"

All this talk of hand-washing reminds me of a saying that was common in my house as a kid: “Cleanliness is next to Godliness.” The vision of Heaven going around at that time was indeed very, very clean. God, with His white beard and white robes, standing on a huge expanse of pure white clouds. No dirt under those fingernails. And I guess if everything is perfect in Heaven your hands stay clean and a new white robe just appears whenever you need it – without the need for soap or a sink or a washing machine. Eating ribs must be a very different experience up there.



Written by Emile

June 26th, 2011 at 3:31 pm

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If Your Life Was On Videotape

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I read this morning that Apple has – in its own Apple-tastic way – killed its popular Final Cut and Final Cut Express programs in favor of a new app that (surprise!) doesn’t have the functionality of the old stuff, but costs more.

They must be reading from the Mircosoft playbook.

When I was doing PR, I got the idea of teaching myself to use FC Express as a way of getting into the video production business. Funny how the bar is now so low to do that kind of work. Back in the 80s when I was producing TV spots and industrial films, studios were huge and very expensive – $250 an hour, I recall.

JS in happier days.

Irrelevant aside: Once during my ad man days in Baton Rouge, I arranged to have a bunch of radio public service announcement dubs made at the then-new Jimmy Swaggart Ministries media production center – at the time the finest in the southeast. I was given a tour of this palatial facility, and I was amazed at the equipment and studio space. Much, much nicer than what I was used to. At the end, I was taken to the main studio, where a couple of guys were editing one of Jimmy Swaggart’s TV programs. Overcome by the all the bells-and-whistles I saw, I involuntarily exclaimed “Jesus Christ!”. They were not amused.

Where was I? Oh yes, learning FC Express. So anyway I bought the software and a book and before you know it I was producing rudimentary videos, which my clients loved because they were so, well, cheap. Since I could write, shoot, edit and voice the things myself, it was profitable for me at the same time.

If you’ve ever done this kind of video editing, you know that the interface involves a timeline on which you insert video clips one after another, applying effects, adjusting the audio, etc. You can shorten, lengthen, replace, remove and even play things backward if you like. What this gives you is a powerful sense of control, of being completely in charge of the world which you are editing. That’s one of the things I enjoyed about it. Of course it’s only a video, so that sense of control is only an illusion.

You have a bright future in television, young man.

When I was a producer of TV news programs, this illusion of control was very reassuring to me. Even while my actual life was spinning into chaos, I took comfort in the fact that, twice a day, I packaged an entire world’s worth of news, sports and weather into a tidy 30-minute package, complete with commercials. And I put it on the air – live.

What I took less comfort in was that every time my show finished, it was gone, and I had to leave the studio and go back into the real world. In tropical Louisiana, the studio was heavily air-conditioned, so when I stepped outside the thick humid air really slapped me in the face. There has to be a metaphor in there somewhere.

Steve Goodman

Obscure Reference du Jour: The late Steve Goodman, a wonderful folk-singer from the 60s and 70s, wrote a song called If Your Life Was On Videotape:

If your life was on videotape
Wouldn’t everything be all right.
If your head hurt the morning after
You could always roll it back to late last night.

Check out his work.


Written by Emile

June 23rd, 2011 at 4:18 pm

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Goodbye to All That

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Over the weekend we had dinner with some friends of ours who have political views that are, well, quite different than mine. I’ll say at the outset that I am a lifelong Democrat who is fiscally conservative and socially liberal. My views have been formed by a lifetime of participation in our political system. I studied the system in college. I covered politics as a journalist. I made TV commercials for various political campaigns.

Well, at least they're wearing suits...

And I enjoyed it. Watching the ebb and flow of one party gaining power, then gradually losing favor and giving way to the other party. I found it fascinating, and it gave me a tremendous faith in how our democracy works – in effect, our country is so strong that no one can screw it up.

At dinner some political subject came up, and a lively discussion ensued among our dinner partners and Cee Cee. I was mostly silent, because I was becoming completely enraged by what was being discussed (the particulars really don’t matter, as you’ll see).

This isn’t the first time. In fact, I find myself getting angry just about anytime I read something, hear something or talk to someone about current political issues. I really used to like the give-and-take of talking politics with someone who had the opposite view. Now it seems I can’t do that anymore.

For me, anger is a mask for fear. So the question is: What am I afraid of? I think the answer is that I no longer understand how the system operates. That scares me. The other scary thing is the powerlessness – a sense that there is nothing I can do to influence or change the terrible mess we are in.

Here’s what I mean: My enjoyment at talking politics stemmed from the basic idea that all of us were a part of the system, that there was room for everyone and their ideas, and that, though our opinions may differ, we respected one another.

Now that’s gone, and the idea seems as outmoded as the vacuum tube.

The Vacuum Tube: Once relevant.

Today, it’s all about power. Getting it, holding on to it, and trying to convince the electorate that you are by-God entitled to it and the other side should shut the hell up and submit. Say and do whatever it takes – lie, misinform and count on the fact that most people won’t see through the obfuscation (and a lot of people don’t). Take no prisoners.  My point of view is correct because I can yell louder than you. Not only do I have to win, you have to lose.

And look at where we are as a result.

I don’t recognize that system. I fail at being a part of it because I don’t have the killer instinct it seems to require (this is also why I never did well working in corporate environments). It scares me to see what our political discourse has devolved into. It scares me to feel so powerless. So I get angry.

Like so many things a middle-aged person experiences, I can only conclude that I now fall outside the target demographic for politics. So the best place for me is outside the system. Don’t get me wrong – I still intend to vote in every election (as I have done since 1973). But as for watching and listening and arguing my point – and especially when it comes to the crap that spews out of TV, radio and the Internet – I’m out. Someone else will have to take the job of being right and making the other guy wrong.

I never, ever thought I would say something like this. From my days as a cub reporter, I was proud to play a part in how America worked. I still have faith that our system is so strong that no man or no party (read that: either party) can screw it up permanently. But man, how that faith is being challenged now.

Written by Emile

June 20th, 2011 at 11:53 am

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Such Stuff as Dreams Are Made On

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The Bard

Yesterday we were having lunch at the Cheesecake Factory, and I noticed that our server – an attractive blonde in her early 20s – had something tattooed on her arm. It was the phrase “We are such stuff as dreams are made on”, written in beautiful script from her wrist to her biceps. (Shakespeare, The Tempest, Act IV, Scene 1, in case you’re interested. And yes, I had to look it up.)

I talked in a previous post about tattoos and self-expression, but this isn’t about that. Seeing this tattoo made me think of how we can take in certain words or phrases (or even entire books) and make them permanently part of our being, our psyche. Like our server’s tattoo, they are always there to help us remember who we are and how we see the world.

Consider this sentence: “My life was the best omelette you could make with a chain saw.” That’s from Thomas McGuane’s novel Panama, and for me it perfectly represents the chaotic drug-and-alcohol infused time I spent in my 20s. I can’t think of one without thinking of the other.

Or this: “So we beat on, boats against the current, borne back ceaselessly into the past.” The Great Gatsby, of course. One of my genuine Achilles’ heels always has been dwelling on mistakes I made in the past  – especially during that chainsaw-omelette phase. Every time I read Gatsby that line gets me.

Aunt Flavia (not learning her lines).

I remember my very first attempt at creative writing. I was six years old, and I wrote a play about my Aunt Flavia coming to our house. (Coincidentally, Aunt Flavia was on her way to our house when I started writing.) Act I went something like this:

Me:  Hello Aunt Flavia, how do you do?

Aunt Flavia:  I am fine.

Me:  Won’t you sit down?

AF:  Yes, thank you.

Unfortunately, when Aunt Flavia arrived she wanted to talk to my mother and wasn’t very interested in participating in my play (actors can be so fickle!). But I can still see my words scrawled on the coarse page of an elementary-school writing tablet. Poor Aunt Flavia passed away 40 years later unaware of my literary tribute.

RC getting his scowl on.

When I think of the writers who have influenced me the most, Raymond Chandler is at the top of the heap. His directness, his economy of words, and his astonishing ability to turn a phrase have always mesmerized me. Here he is at the beginning of the story Trouble is My Business:

Anna Halsey was about two hundred and forty pounds of middle-aged putty-faced woman in a black tailor-made  suit. Her eyes were shiny black shoe-buttons, her cheeks were soft as suet and about the same color. She was sitting behind a black glass desk that looked like Napoleon’s tomb and she was smoking a cigarette in a black holder that was not quite as long as an umbrella. She said, “I need a man.”

Ray Bradbury (tempering the bitterness of life with a wonderful sweetness), Richard Ford (amazingly rich, almost real-time detail), Richard Brautigan (poetic imagery), Flannery O’Connor (plain words masking gothic sin and punishment), Michael Chabon (imagining a complete world within the novel). These are my literary tattoos.

Writing is all about creating something that will stick in the mind of the reader, communicate some meaning, become a part of that reader. Even if that reader is only yourself. A few years back I set out to write a story about a dangerous drifter who comes to La Jolla. Sitting there looking at a blank screen, this came to me:

If you ever decide to visit La Jolla, you should try to arrive right at dusk. Stand on the grass in Ellen Browning Scripps Park on Coast Boulevard below Prospect Place and watch the sunset overlooking the cove. If you’ve chosen the day wisely, the air will be of that precise temperature that makes your skin tingle just slightly and invites you to inhale its refreshing saltiness again and again. Let yourself be hypnotized by the continuous rushing crash of the waves. Then, when the sun has gone far below the horizon and the sky above your head is a deep and irrevocable blue-black, turn away from the ocean and watch the warm glow of the hotel windows and storefronts grow brighter as the day disappears. The moment of trading one light for another. That is La Jolla at its most beautiful.

When my confidence as a writer falters, this passage is like a talisman to me. If I can write something like that….

Written by Emile

June 16th, 2011 at 3:08 pm

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The Medium (T-shirt) Is the Message

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My friends Marty and Glenn both have very impressive t-shirt collections. Now, these t-shirts aren’t your run-of-the-mill Disneyland souvenirs or tattered reminders of Foreigner’s 1987 world tour. And they aren’t novelty t-shirts, like the one I saw Saturday on Cops that said “This is the shirt I wear when I don’t care”. It was being worn by a father who had just pulled a gun on his son, who was threatening him with a knife. Good times.

Rock on, Wayne. Rock on, Garth.

No, Marty and Glenn only wear shirts that reek of cool (and nothing else, since they are both well-groomed men). They mostly tend toward obscure indie-rock bands (actually you would think most indie-rock bands are obscure) and interesting images – Glenn last week was featuring the Heisman trophy. Go figure.

Seeing this continuing parade of great tees made me want to get in the game myself. I’m not much of a t-shirt wearer anymore, though I once owned a shirt that had the album cover of the Eagles’ Hotel California…uh…well, that was back when Reagan was president, so maybe it doesn’t count. I wanted to get hold of a t-shirt that would shock and awe, that would turn heads (and I mean like what’s-her-name in The Exorcist).

Naturally I thought of Barrier Kult.

Up the violent transitions.

To the uninitiated, Barrier Kult is this kind of underground skateboard group that has taken as its oeuvre those white concrete barriers you see in highway construction zones. As in skating up and down on them. They mix this with gothic horror images and heavy metal music. To say that I am outside the target demographic of this group is whatever the next thing beyond understatement is. And before I forget, props to Marty here for introducing me to BaKu (yes, they have their own abbreviation) via a YouTube video that was completely incomprehensible. (Watch at your own risk.)

This is what I need, I thought. A Barrier Kult t-shirt is my ticket to entry. No more solid-color button-downs for me. I’m relevant once again, baby!

So off I go to the BaKu web site where I find just what I’m looking for: the “Culting Knife Ritual” shirt, which has just about the best product description I have ever read (caps are theirs, not mine):

If only...


I think “Printed in Canada” is by far the most chilling part, don’t you?

I have my credit card at the ready, when suddenly I am thwarted! BaKu doesn’t offer this little number in a size that a middle-aged guy like me needs! Curse you, Barrier Kult! I will take my rolling knife and stab and drag you into and up the violent transitions. Or at least write a very huffy comment on Yelp.

Alas, the search continues – for both t-shirts and relevance that fit me. Suggestions are welcome.



Written by Emile

June 13th, 2011 at 3:00 pm

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Golf and the Tasmanian Devil

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Later today I’m teeing it up with two good friends – Jeff and Steve – at our local muni. We play together so often I refer to them as The Usual Suspects. Great guys.

Amen Corner at Augusta. I wish...

What I love about golf with The Usual Suspects is that there is absolutely nothing at stake. We don’t bet or compete with anything except the course itself. We just enjoy each other’s company, on a beautiful day (after all, this is San Diego) in a beautiful place. We have a lot of fun.

I wrote in an earlier post about how, after The Darkness, I am playing golf as poorly as I was pre-Darkness – generally shooting in the mid- to low-90s. But something is different: I’m handling golf’s inherent frustrations much better. And that is great news.

Few things bring out the dark side of my personality more quickly than golf. I have always had a powerful need to prove myself to other people. A golf shot – in terms of distance, accuracy and consistency – was an easy benchmark to use. As anyone who plays golf will tell you, golf is a tremendously difficult game to play well. It takes a lot of practice, and even the best players will play poorly a certain percentage of the time.

So frustration – and how you handle it – is an important part of the game.

To give you an idea of how bad I was at that, consider that a group of guys I used to play with every week chipped in and bought me a cap with the Tasmanian Devil (wielding a golf club, and not in a good way) embroidered on it. I once threw a pitching wedge so high that it got stuck in the top of a tree (it is still there, as far as I know).

Any resemblance to persons living or institutionalized...

I’m happy to say that I don’t do things like that anymore (insert blanket apology to my former playing partners here). I was getting better pre-Darkness (helped immeasurably by taking lessons and practicing – duh!), and now I find that The Darkness has somehow stripped away my need to prove anything to anybody. I have been given the gift of being able to see myself as I really am, without the murky lens of my low self-esteem. Golf is not some battle I have to fight to prove myself to my playing partners. It’s just…well…golf. The Tasmanian Devil cap now resides in the closet.

I wish all this self-knowledge could somehow cure my slice. But with my ex-radio deejay voice, at least I can yell “Fore!” louder than anybody.

Obscure Reference Du Jour: Robin Williams’ famous rant about the invention of golf is not nearly obscure enough for this space. Instead of a literary or musical reference, I’ll offer this story from my childhood. When I was ten, our family moved to a new house whose backyard was adjacent to a municipal course. Naturally, I got interested in the game, and in the summers I used to walk right out of our yard and onto the 11th tee box – the course offered a junior all-you-can-play card for five dollars a month. This would be 1966-67.

My father was not a golfer. But one day he was walking the course with me and one of my cousins. The cousin hit a bad shot and slammed his club into the ground. My father then proceeded to offer him advice on his stance and his backswing.

“I don’t play golf,” he said. “But I know how to teach it.”

Yep. That’s my Dad.


Written by Emile

June 11th, 2011 at 12:15 pm

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Sign of the Times

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I read today that signs warning about the presence of certain types of playground equipment must now be posted in parks and recreation areas in California. Like this one, alerting the public that a seesaw is near:

Look Out!

I’m sure a person (like say, a personal injury attorney person) could imagine a scenario where a parent, unaware of the seesaw threat level, would let loose their innocent child onto a seemingly bucolic and risk-free playground. Only to have that child be horribly injured (bonked on the head? held cruelly in the “up” position by a bully?) moments later.

“Oh, if only I’d known there was a seesaw!” the distraught parents would tell the judge. “If only there’d been a sign! I mean, who knew that there could be a seesaw on a playground?”

Judgment for the plaintiff.

I have two questions. First, how bad is this seesaw awareness problem? Is there really a large segment of the parental population that needs a sign to help them understand their responsibility for the safety of their children? (and, if so, how do I contact them about a large Nigerian inheritance to which they are surprisingly entitled?)

And second, what are those two kids in the sign thinking?

Kid 1 (up): “Do you think this is dangerous?”

Kid 2 (down): “I asked the crack dealer over at the picnic table, and he said no.”

Really? No razor blades?

It reminds me of a sign I see sometimes in airplane toilets. This example shows just a hand, but I’ve seen them where that international symbol man is dropping soap, cutlery and razor blades into a helpless toilet. What can he be thinking? Is he having a really bad day? Or has he simply been driven over the edge by the claustrophobic confines of the toilet itself?


Here in California, signs were put up a few years back along I-5 north of San Diego warning of illegal immigrants running across the freeway to avoid detection at a large checkpoint. The signs became kind of a joke, of course, but I can’t look at one without imagining the scene before the image in the sign takes place:

I brake for pigtails.

Mom: “Okay, mi hija, we must fix your hair in pretty pigtails before we dash across the freeway.”

Daughter: “Mama, what happens if I don’t run fast enough?”

Mom: “Then I will pull your arm until you become airborne.”

Obscure Reference Du Jour: My making up stories about street sign characters probably started six or seven years ago with a series of Pearls Before Swine comics. If you’re not familiar with this comic strip, find it. It’s fantastic.

Anyway, this series is about a bar whose patrons are all road signs. Signs with distinctly human characteristics:

©2006 Stephan Pastis. All rights reserved.




I could go on. But I’m off to the park to sound the warning about seesaws.


Written by Emile

June 10th, 2011 at 4:19 pm

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Every Picture Tells a Story

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A friend of mine, who by any estimate has an above-average number of tattoos, said this to me when I asked him about all his “ink”: “Sometimes the pain on the outside had to match the pain on the inside.”

A recent survey showed that 36% of Americans between 18 and 25 had at least one tattoo. More than a third. Wow. Any stigma about getting a tattoo (which, when I was in the 18-25 demographic was pretty much still limited to sailors) is gone. Great. Nothing wrong with that.

BFFs: Tattoing all 152 of your Facebook friends on your arm.

It got me thinking about the why of something like a tattoo. Leaving out the tattoos done in a fit of passion (see Angelina Jolie), or those done in a drunken stupor (see Helen Mirren, for crying out loud), most tattoos are the result of carefully considered decisions made by people who understand what getting a tattoo means (i.e., it pretty much ain’t coming off).

So whatever the tattoo actually is (words, symbols, pictures), it reflects some facet of its owner. In other words, it tells a story. No surprise there. I mean, tattoo parlors often call what they do “body art.” And the essence of art is one person reaching out to others through the use of some medium. This is who I am, what I’ve seen, what I’ve done. Me trying to make sense of the world. Writing, painting, singing, the same idea.

The obvious difference, of course, is the “forever” factor. Unlike a short story or a novel, which I can write and change hundreds of times or discard altogether and start over again, tattoos are removed or changed only at great cost (both physically and monetarily).


The permanence of the tattoo is part of its appeal. In effect, it solidifies some particular moment in the life of its owner – no matter how far they go in time and place from that moment, it’s still there with them. Like my friend who talked about the relationship of his many tattoos to his frightening inner demons. Somehow, he needed to reach out and make visible his struggles. Tattoos were the medium he found for that expression. Bright, colorful and complex, they remain with him long after the struggle has ended (he is now one of the finest men I know). He wouldn’t have it any other way.

Not every tattoo is so dramatic, but I think that in a time where things rush by so fast and we are overwhelmed by fleeting messages, bits of data, and advertising images, having something so personal and permanent on your body is a kind of comfort. Something that is stopped, unchanging, and which helps you tell the story of who you are to others. Regardless of the medium, we all need some of that.

A great read.

Of course, I can’t end this post without an off-the-wall reference. Today, with all the talk of tattoos, it is the short story collection The Illustrated Man by Ray Bradbury (one of my all-time writing heroes). A man meets a vagrant who is covered by beautiful tattoos. The vagrant tells the story of how he was tattooed by a mysterious woman from the future. And as he talks, each of his tattoos in turn begin to move and tell their own story.

I read this book when I was around 13 and already obsessed with Bradbury’s work. I could not believe that someone could use words to create something so beautiful, compelling and emotionally powerful. At the time, the first cheap cassette recorders were available, and I remember recording the introductory passage of The Illustrated Man and listening back to it over and over, feeling the impact of Bradbury’s words. I think this was when I first knew I wanted to be a writer.

I love the story of how Bradbury himself decided to be a writer. You’ll find it here.


Written by Emile

June 9th, 2011 at 12:43 pm

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When the Little Head Does the Thinking

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I know this is going to sound like piling on, but can we just review this Weiner thing for a minute? (Weiner thing? Oh God, the double entendres are starting already.)

I mean, this guy who was elected seven times to the United States Congress was sending pictures of his tackle to anonymous young women he met on Twitter? And he thought that these anonymous women, knowing who he was, would keep these photos secret? Really? Really? Then, after those pictures were made public he tried to say that his account had been hacked – like no one could check on that?

At his press conference yesterday (at which his wife was conspicuously absent), Weiner said sending naked pictures of Mr. Happy to strangers on Twitter was “a very dumb thing to do,” “a hugely regrettable mistake” and “destructive.” As the Tweeters say, OMG! WTF!  If stupid were a felony, Weiner would be serving life.

I guess being stupid isn’t limited to the private sector, but wouldn’t you think that by the time you get elected for the seventh time to Congress you would have developed some kind of, oh, I don’t know, maturity? Gravitas? A sense of the importance of your job? A clue about how to treat women with respect? Ah, would that it be so. Sorry ladies. In the case of Weiner we must inevitably conclude that, once again, the Little Head was doing the thinking. In Congress, in corporations, at the IMF, around the world and in your neighborhood, the Little Head will have its way.

John Hiatt put it thusly:

Baby in my heart I’m faithful
This two headed monster is distasteful
Forgive me when my instincts start stinkin’
I’m just so easily led when the little head does the thinkin’

Oh Little Head, why do you seem to make so much sense? Do you send some powerful stupid hormone to the Big Head? And is that hormone carried to the Big Head by beer? Is there some kind of ego event horizon that, once crossed, suspends the laws of physics (and common decency)? I’ll leave those questions to the philosophers (and the cable news commentators). But the thing that interests me is my first thought upon seeing Weiner’s mea culpa (damn those double entendres!): It’s freakin’ 2011! Are we still this dumb? Well, duh!

Speaking for my gender, I can only say that the Little Head has been around for a long time. It’s very good at what it does. And I’m closing my Twitter account.



Written by Emile

June 7th, 2011 at 5:34 pm

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The Darkness

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After getting better for about a month, I’ve been feeling pretty rotten the past couple of weeks. Still tapering off the prednisone. But now something new has cropped up. Some kind of inflammation in my joints that is making it hard to walk, stand up, put my arms above my head, etc. Painful. So far the doctors don’t have any answers.

I try very hard to be philosophical about periods like this. I mean, no one wants to hear me complain about something that neither one of us can do anything about. What’s going on with me today reminds me of The Darkness – the period from January to April of this year when I was deeply in the throes of prednisone side effects. In those days of not being able to do much except lay on the couch watching TV, it was very dangerous for me to think about the future, because the future was filled with questions like “Will I feel this bad tomorrow? Next week? Six months from now?”And the past was all about “Will I ever again be the person I used to be?”

So what I was forced to do (because I’m not that good at it otherwise) was focus on the moment. Try to simply be with whatever I was feeling. Because (a) there was nothing I could do about it, and (b) I had to learn to live with it. Just for that day, that hour, that moment. My brain, my instincts told me that I needed to run away from what I was experiencing. What I actually needed to do was face it.

My way of focusing on the moment is to try and name what I’m feeling. My shoulders hurt. My stomach is upset. My back aches. Then I think about anything I can do to mitigate those individual symptoms. If laying on the couch makes my shoulders and back feel better, then that’s what I do. I found that eating a carton of yogurt made my stomach feel better, so I do that. And so on. Until I could get to the end of the day.

In other words, I had to stop fighting. I had to accept what I was feeling as being OK just the way it was. I had to try and integrate my condition into who I am, instead of seeing it as an enemy that was attacking me. After all, it was the treatment for my FSGS that was causing all the pain – not the FSGS itself.

Chronic pain changes the way I think. After awhile, the pain is all I can think about. And when I focus on that, what follows is fear, anger, desperation and depression. I was there. That’s why I call the darkness The Darkness. Because on some days I can be philosophical, and on other days I’m stuck in the fear of the future. I can’t remember what it feels like to be 100%pain free, and that scares me. Today I go to the doctor again to try and figure out a diagnosis. And even though the pain of this inflammation is not even in the ballpark of The Darkness, I think about having some other problem on top of the FSGS and I wonder what that will mean.

Late Update: Apparently this joint crap is being caused by the Pravastatin I’ve been taking for my heart,


interacting with my immuno-suppressants. Doctor told me to stop taking it. One less pill. We’ll see what happens. Also, my FSGS is officially in remission. A day of good news.



Written by Emile

June 6th, 2011 at 11:56 am

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