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A Sample Day In The World Of Chronic Fatigue Syndrome

Successfully dragging myself from the bed at 6:58, I’d gotten dressed. As I sat there resting afterward, I found myself mulling over the discussion that I’d had with five new friends that I had discovered on Twitter the day before.

A lively exchange ensued, an we typed freely as if we’d known one another for years, and in a way – we had. We all suffer through the same relative hell. I can really connect with someone who speaks my language. No one else does.

“I need to get in there to try and start writing while my brain is fresh.” I told myself.

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‘Fresh’ is a relative term these days. I knew that by 11:30 – which in normality, would’ve been my “wide awake and running on all eight cylinders” time – I would be approaching worthlessness. On a good day, I might even be able to stave off ‘The Fog’ until 12:30 with the application of copious amounts of coffee and nicotine via vaping.

Here, one might say, “Oh, I have mornings like that all the time,” or “There are studies that suggest that too much coffee is bad for you,” or “nicotine is a dangerously addictive drug, and may be carcinogenic.”

Well, let me take this opportunity to clear up a few misunderstandings. I’ll take these in the order in which I presented them.

1) No, you don’t have mornings like this. Don’t patronise me because it pisses me off more than you could ever imagine.

In all of my 51 years before contracting CFS, I never ‘had days like that’. Never.

Not even on those ‘mornings after the night before’ when I was in my twenties. After playing music while sweating profusely, expending energy as if there were no tomorrow, drinking tons of beer afterwards, smoking cigarettes, and staying up until 2:00 in the morning.

2) Coffee and Nicotine are what keep me running – no – idling until the effect wears off. You have your drugs, I have mine, and I utilise them for a completely different reason now. My headache is usually anywhere between a dull ache above and behind the eyes, to a really bothersome piece of shit on the crown of my skull. Caffeine keeps it at bay. In my world, that nullifies all of the studies anyone can throw at me. I won’t take aspirin for reasons which I’ll outline later. Nicotine actually provides a bit of sharpness to otherwise dulled cognitive skills. Gives the brain a bit of an edge, albeit a dull one. Vaping removes all of the bad things relative to smoking and leaves you with the single saving grace. Besides, although it may be addictive, so are lots of things that the FDA approves, except that nicotine doesn’t come with a laundry list of side effects.

Besides, I’ve been through the entire health kick, beginning in my thirties. Lived the life. Quit drinking, quit smoking, quit eating at McDonald’s. You get the picture. But a little wasn’t enough, so I kept going. I lost a little bit of fat, began walking. Miles. After a few months, I began weight lifting. Then I bought the Trek 1000 and began the cycling routine I’ve written about before. I was in the best shape I’d ever been in. By God, I’d earned it too.

Until I was three months into my 51st year. Within a two week period, I went from 50 – 70 mile rides to feeling as if I were fighting the gravitational pull of Jupiter.

I had a doctor say, “Well, you are getting older…” Then I outlined the above scenario. No. Not that quickly did I ‘get older’.

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Okay! So I’m dressed and up. First order of the day: Make the freaking coffee. Drink a big glass of water. Then clean out the litter boxes, and fill the water bowls. Sitting down to rest afterward, of course. The activity that I just described ‘exhausts’ me. I inhale deeply, and blow out forcefully as if I’ve just completed a half days work.

Yes, it is embarrassing to admit. What else can one do? I’ve just gotten started, and already I feel the same way I felt when I finally lay down the night before. This is no exaggeration.

Nonetheless, having only begun I get up after a couple of minutes, grab the floor duster and do the kitchen. This is something that requires a serious application of sustained energy. Then sit down to rest. Huffing and puffing.

Repetitive actions are the worst. I used to do building renovation. Carpentry, drywall, painting, laying tile. All of those tasks require repetitive action. Hammering, sanding, sawing, or the constant back and forth motion of brushing or rolling paint onto a surface. Hell, I can’t even knead dough now without giving out, so I can’t enjoy baking bread like I once did. Sometimes preparing a meal takes two entire days.

The CFS affects every part of my life, and completely ruins what was once a great living.

But hey, I’ve got to begin writing, and it is now 7:30. Time’s a’wastin’ as my grandfather liked to say. So I park my ass in front of the computer. I have the screen turned down to perhaps 33% brightness because the disease has also affected my eyesight. Bright sunlight or artificial light makes my eyes burn and hastens the headache. Nobody knows why.

I gather my thoughts and begin typing. This time is crucial, because no one is up yet. It’s Saturday and the others are sleeping in. Which is groovy, because the slightest thing is capable of distracting me. Gone are the days of multi-tasking. I’m lucky to be able to concentrate well enough to do any one thing well.

Paleface is pawing at the water bowl. It is empty. Did I not fill that damn thing up? I stop what I’m doing to inspect. The one that he has chosen to drink from is bone dry. What the hell is wrong with me?

Did I not mention the constant forgetfulness that accompanies CFS? I look back across what I have typed. I haven’t mentioned it. What the hell is wrong with me?

I begin to type again. After two cups of coffee and working for some time, I ‘come to’. I am hunched over not unlike Quasimodo. I feel as if I’ve sat this way for a week. I straighten up and it hurts. I check my phone. Did I hear it alert? Where the hell is my coffee cup? Holy shit. It’s 9:30. I haven’t thought about what to do for dinner. If I don’t get cranking soon, I won’t have dinner done by 6:00 this evening. I’ll feel as if I’ve been beaten with a hose by then, so I have to start now.

And speaking of eating – sooner or later, one must eat. I hate eating these days, because this signals the end of my morning. Food does me the way that Valium used to. It hammers me like one cannot imagine. I have to lie down and sleep for two or three hours after eating, and I’ve tried everything. Eating lighter, different foods, nothing works. I can eat a few graham crackers with peanut butter (crunchy) and have a spoonful of honey. BOOM. The ‘edge’ afforded by the caffeine and nicotine becomes as dull as a rubber knife within fifteen minutes.

After I wake up around 4:00, I never regain the edge that I’d achieved that morning. It’s like running on fumes the rest of the day, until, finally, I will take two aspirin, one Benedryl, and go horizontal at 9:00. I’ll feel marginally better in the morning, but not for long.

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But that doesn’t matter. People are stirring now, and my concentration is shattered. I have to get dinner going.

You guys have a good day. Captain out.

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The World Is Changing and Has Taken Me Hostage

Many years ago, I came to the conclusion that I wanted to own a shortwave radio. Nevermind the fact that I didn’t know anything about shortwave, or what would be waiting for me there. The medium simply offered the capability of hearing things I’d never heard before, and the radios had all kinds of knobs for adjustments and tweaking. Besides that, nobody else I knew listened to shortwave broadcasts, and that gave me even more reason to pursue the endeavour.

My first exposure to these fantastic devices came to me by way of the thick annual Radio Shack catalogue which at one time came through the mail. Radio Shack seemed to have one of everything back in the days before mobile phones and computers came along. They should have never attempted to change their business model, because they had a developed a unique niche in their market, and lost their identity in the newly booming digital world.

But out of all the items that the catalogue featured, my favorite section was all of the specialised radios they offered. There were receivers specifically designed for eavesdropping on police, medical teams, fire departments, train yards, ham operators, and yes, shortwave stations.

The primary impediment for me at this time, was of course money. Multiband radios were generally big, and expensive. Back when twenty dollars could purchase what two hundred will now buy, $229. for a radio was a dream that I could only envision. I used to think to myself, ‘If I were rich, I’d buy a shortwave radio.’ The thought of boats, automobiles, and houses never entered my mind.

My initial infatuation with the shortwave waned, and as years passed I married, and started a family. But within three short years, my fate once again changed as I found myself single again and embroiled in a messy divorce. The year was 1981.

With young daughter in tow, I moved back to the town that I was raised in, got a couple of part time jobs, rented myself a small house, and concentrated on the acquisition of new audio recording equipment in order to re-immerse myself in the music industry.

One Friday evening, after getting paid, I dropped my daughter off to visit my parents for the night, and then stopped into Radio Shack to pick up a couple of microphone stands. Something in the window caught my eye and made me stop in my tracks before even entering the store: The big DX 200 shortwave that I had lusted after so many years ago was displayed there, with a hand written sign which read, Closeout Item! Last one left. 50% off!

I walked out of the store that day, not with mic stands, but instead a big box with the coveted radio inside. I stopped at the corner market and got a six-pack. This party had been a long time coming.

As the sun sank lower, I popped a beer and began to build a long wire antenna, which would be required to hear the transmissions on the radio. I didn’t bother to ask my landlord if I could install it, because I knew that it would be all but invisible. I stealthily twisted a screw hook into the eve of the house and, tying a length of paracord into a slipknot, slid it onto the hook and tossed the other end of the paracord into my window. Once back inside I assembled the insulators and bare copper wire and waited for nightfall.

Soon it was dark, and I tossed the finished antenna out the window, grabbed a ladder and sneaked to the garage apartments behind my little house. Propping the ladder softly against the building, I uncoiled the antenna, climbed the ladder, cranked another screw hook into the apartment building and, hoisting the antenna up, pulled it taut and tied it off and scurried back inside with my ladder. My covert work had gone smoothly, and undetected.

I filled a bong, and when it was cashed, I went back into the room with another beer and prepared for the moment of truth.

After attaching the antenna lead to the radio, I turned it on. The big drum dials lit the room up with a warm glow, and the static was punctuated with unfamiliar undulating howls and electrical crackling. I cranked the dial and before long, a big, strong station was booming through in English. However, the news programme was full of strange headlines and weird stories of World War II. Finally at the top of the hour, a powerful voice boomed out, “This.. is the External Service of Radio Moscow!”

I flipped out. I was listening to a Soviet broadcast!! I turned down the volume and looked around. I began to wonder if this was even legal activity, or if I would be viewed as a Communist sympathiser if anyone found out.

I reckon I stayed awake most of the night listening to Radio Beijing, Swiss Radio International, Radio Yugoslavia, and the BBC World Service, among others. I was in complete awe that I could lie on my bed and listen to a radio station on the other side of the World. The impact of how amazing this was at the time will probably be lost the younger reader. These days, we’re so used to turning on the computer and getting Tweets from all over the globe, and news broadcasts from Al Jazerra, the world seems like such a small place in comparison. During the eighties, when cable television was just coming into widespread availability, I was the only person that I knew who was able to get news from other parts of the world, without being at the mercy of the American news services ‘filtering’ what they thought I ‘needed’ to know.

Flash forward to a couple of nights ago.

I climbed into bed, plugged my Sony MDR-7506 headphones into my android, opened the University of Twente website (which is located in the Netherlands*), accessed the Wideband WebSDR, and began sliding my finger across the screen to tune into shortwave stations that were audible in that area of Europe at 2:00 GMT.

As I lay in the darkness, I stared into the screen, and wondered why this hobby no longer held the excitement for me that it once did.

* For anyone who may be interested, go to: Faculty for Electrical Engineering, Mathematics and Computer Science

The Mercurochrome Link to White Knuckle Gaming

That does it. I’m suing everybody for everything. Nothing is my fault and I just realised it.

I thought I was over it. The Nintendo 64 had been sitting on the shelf for years, untouched.

Sure, I’d played the 64 with my son when he was a kid. You know, why not? I had the toys, the candy bars, the paregoric, the mind-numbing Loony Tunes. I had the comic books, the Matchbox cars, and the model locomotives. Shouldn’t he have had a chance to enjoy it all, too?

So his mom bought him a Nintendo 64. The games were largely innocuous and cute: Zelda, Mario 64, Rainbow Six, Mohammad Ali Championship Boxing, Madden 98 (nothing to make him want to go out and mutilate anyone like the Black Sabbath, the Judas Priest, and Blue Oyster Cult did that I used to listen to), Aerial Assault, Star Wars… Oh…..and Mario Kart.

I looked at the dust covered gaming console too long. I remembered too much. Suddenly, I was a recovering heroin addict who was having his old drug of choice proffered to him again.

God damn Mario Kart. Images of Peach and Yoshi drifted through my mind. My blood boiled anew. I slowly reached for the device, and my palms were already moist with perspiration.

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When I was a kid, we’d all be outside playing, and sometimes one of us would fall and tear part of our tender little bodies open. It was an occurrence that we all dreaded and that we would try to wish away. One day, I ripped my knee open pretty badly. All of the other kids stopped playing to assess the damage as well, and looked at me solemnly.
“Are you gonna have to go home?” they’d ask.
Another would inquire, “Do ya’ll have Merthiolate or Iodine?”
“No,” I’d answer, “all we have is Mercurochrome.” My response would send a shudder throughout the group that you could feel and see.

Mercurochrome is how I developed my four octave scream. Even today, uttering the word even makes me tingle in a way that is vaguely uncomfortable. It conjures up something dark, evil, and foreboding. Mercurochrome.

Now, any compound which has, as its root words Mercury and Chrome, can’t be too good to smear into an open wound of any organic being. But as a kid, we were all routinely dipped up to the neck in this shit.

The kid who lived across the street from me rocked incessantly and would cry when jets flew overhead.

Another who lived farther up in the neighborhood would suddenly snap and beat other children up. He’s the only twelve year old I ever knew who had the “hundred yard stare.”

Me? I had a little fling with OCD. I hid it most of the time, but I’d give it free run when I was out playing by myself. I say the same word over and over and over and over and over and over and over. I’d hold my breath and then stagger it until I got it all back in time with something that I didn’t understand. I was a slave to ADD all throughout my time in school, although I wasn’t diagnosed until I was in my forties. All of my afflictions came out in the form of art or music or mailbox bashing. I got over the bat wielding, but the effects of the Mercurochrome still make themselves apparent in my music from time to time:

http://www.reverbnation.com/johnnynowhere/song/10524830-equinox

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Or…..when I play Mario Kart.

And before I know it, there I go. I’m hooking up the console…desperately seeking RCA patch cables. I can’t find them after a two hour sweep of the house, and I find myself hunkered over my project bench, soldering cables up in the sweltering heat of the halogen lamp… and I know that it already has a hold on me. By God, I’m giving it to Mario Kart. Next I’m blowing in the cartridge, washing my hands, using alcohol and then talc.. getting ready.. to win. Charlie Sheen is right. It is all about winning, and my son’s ancient Nintendo 64 has shown me the way.

I go white knuckle so fast, and want to kill Toad and that stupid little lizard. As a matter of fact, I get to where I can’t stand my own driver. I’ll crash him into walls and see if he can virtually die if he pounds the wall hard enough. I hate the controller. I want to jerk the game out of my mind by the roots because I know that I’ve blown the lid off of my self-imposed moratorium and am completely re-addicted. I won’t stop until I win every course, curse every driver to hell, or hurl the controller through the television screen in total disgust.

Or until drained, I slowly rise from the couch and turn off the set and awaken from this video induced hypnotism. My God, it’s two thirty in the morning. It seems like it was just eleven a.m.

Telling myself to just unplug the game and put it away, hide it in a closet, or take the evilness to the Goodwill outlet to bait some other poor fool, I go to bed and cry myself to sleep at night.

But the console sits in the floor still. Until the next time that I look at it, and feel that shiver of excitement… and then the uncontrollable rage.

So you see.. none of this. is.. my fault.

I’m suing everybody.

Johnny Nowhere is a songwriter who is currently undergoing therapy.

Voluntary Versus Involuntary Personal Slavery

I know this big, friendly fellow who had a severe heart attack a couple of nights ago. The prognosis isn’t good. A wife, three teen-aged children, and there he lies today, not yet forty years old, in a coma, somewhere in the middle of time itself.

As in all such instances, the fragility of life got me to thinking about my own achievements, or lack thereof, made in the time that I’ve been so far given. As I’ve aged and suffered setbacks, I’ve become a pretty reliable authority on how to do things.

Mostly on how not to do things, unfortunately. But one way or the other, we learn.

As far as my own choices go, I like to contrast my life against that of Arnold Schwarzenegger. It keeps me humble.

According to Arnold, he was a poor kid from Austria who had developmental issues, and one side of his body was a good deal weaker than the other. As a result, his doctor prescribed weight training to address the problem. Arnold quickly adapted to the regimen and decided to take big, giant steps to become the best he could be. And he did.

He came to America, although he barely spoke English. He lived in his car for a while. He took lots of risks, but he believed in himself so strongly, he didn’t allow anything to stand in the way of him and his dreams.

His abilities and achievements are a direct reflection of his dedication to, and practice of, his craft.

This same thing can be said for each and every one of us as musicians and songwriters.

One can argue with this logic all day long (mostly in defense of one’s own lack of achievements), but at the end of the day, the fact will stand as testimony to the undeniable truth that can be found there.

Universal truths are glimpses of universal facts, tucked into timeless proverbs.

For instance, if one wishes to be a guitar player, yet practices drinking beer more than he practices guitar playing, he will become a better drinker than guitar player. The facts bear my words out. I know some devoted drinkers who play guitar only tolerably.

Several years ago, I quit drinking and applied myself to the craft of practicing guitar, within five years my guitar playing improved 1000%. Seriously. But I was encouraged early in life to play to my strengths, and one of my strengths was to make rational decisions. I decided that I wanted to play guitar more than I wanted to get a buzz.

A man who I much admire once said, ‘a man who wishes to become a Man cannot sit between two stools for very long without losing everything’. Now I, at fifty-eight years of age, understand the meaning of his words all too clearly.

I wasted time sitting between stools, and by the time I got good enough at my craft to write and record suitable compositions, the music industry had taken a hard turn. Within a decade, a once thriving business was going down like the proverbial Titanic. The model changed, largely on account of the digital revolution, and it caught a lot of musicians with their pants down around their ankles. Others perceived the coming cataclysm and diversified.

But the losing horse blames the rider.

I went through that phase for a while. It was bullshit, of course. Now I blame no one but myself.

I still have beautiful melodies arise from the ether in my noggin, and I, ever dutiful to the Muse, pick up my instrument and do my very best to transpose the sounds in my head onto tape. I do it for a different reason now. But I do it. And I do it the best way that I know how.

Unconscious, or Involuntary Personal Slavery is a terrible thing. It is the worst form of slavery, for it is the hardest form to release oneself from. It is so much easier to designate a scapegoat. Most people who cling to Involuntary Personal Slavery secretly love their chains. They’ll come up with every excuse under the sun to justify staying chained down, rather than rising up and leaving the plantation. Most of the time, fear is the prime motivator for remaining clapped in their imaginary irons. Fear of failure. Fear of nothing of real value in the free Man.

This type of slavery takes many forms; addictions to food and alcohol, religion, sex, fame, anger, notoriety. All such slavery is simple stupidity. Until one can break these chains, one will never truly be free. But most people do not really wish to be free, for slavery gives them the option to apply blame to an outside instigator or oppressor.

Let us use the analogy of slavery in America. Now, slavery hasn’t been practiced in America in over 100 years, but most modern Americans have been taught very little about the role of slavery in America, or of the War Between the States for that matter, which was more over money and states rights than slavery. Even free blacks owned slaves in America before the War, but that is never discussed because it cracks the mold; and although most modern American blacks wouldn’t recognise a cotton stalk from a corn stalk, they live as if they are still on the plantation.

And in one sense, they still are.

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African blacks regard American blacks with disdain. They think that they (much like the modern Jew) are big crybabies who have every opportunity to make something of themselves, yet who prefer to spend all of their time and energy making themselves out as victims, blaming past events for keeping them in their present set of ‘circumstances’.

Ask anyone who has spent time getting to know the blacks who inhabit the continent of Africa. African blacks are very tribal. If an American black is unable to trace his tribal ancestry, he is not considered a ‘long lost brother’. He is just another Black American. Neither is he referred to as an ‘African-American’. African blacks will tell you that they would gladly trade places with any American black in order to be able to take advantage of all of the opportunities available to them. However, African blacks, in spite of all of their difficulties, such as walking miles daily simply for water, are among the happiest people in the world, always smiling, always joyful.

These native Africans have every reason to wear their daily struggles like a badge, but they choose to have a bright outlook on life, unlike American blacks, whom the Africans think are a bunch of brainless fools, shooting one another up, running drugs, and rapping about how ‘hard’ life is. African blacks feel that American blacks know nothing of real struggle.

I pretty much agree with the Africans, because the so-called ‘struggles’ of the American blacks are primarily imagined. The mindset is passed down like a disease from one generation to the other. These days it is referred to as ‘white privilege’. Meanwhile the genuinely enfranchised class becomes extremely jealous of their lawfully granted privileges: Although American blacks, who in the past thirty years have been born into a society which, through all sorts of legislation, grant them more rights than most other American citizens enjoy, the majority of them still choose to blame their own failure to act on white people, primarily because it has been made too tempting to whine about some perceived inequality.

And many whites exacerbate the image. They choose to believe that they, via inheritance, are partially to blame for the black population’s imaginary suffering. This further allows the American black population to keep themselves ‘down’, while allowing many of the white population to actually defend the mindset.

Both attitudes, incidentally, insure the continuation of the Status Quo.

The squeaky wheel gets the grease, but once the squeaking stops, the greasing stops. Some American black ‘leaders’ have figured this out, as ‘spokesmen’ in order to keep the wheels greased, as well as their pockets.

What a sad joke. It is unfortunate that so many people buy into the whole facade, because there is no solid foundation on which to base the belief, only a lot of justification for imagined anger.

The point I am attempting to make here, is that this is just another form of Involuntary Personal Slavery.

This form of slavery almost always takes on the form of justification and false inculpation.

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If one cannot look objectively at one’s position in life, one will never be able to make the most of one’s skills and talents. Merely mimicking another person’s way of doing things is not being true to oneself.

I discovered that until one is made aware of the fact that he is indeed a slave, he never feels the need to escape. This is a fact that I did not discover this on my own.

By quite accidental and ‘miraculous’ intervention, I found the student of a teacher of a ‘school of another kind’, who tempted me to ‘look’ at myself. It was said that if I could only realise that I was enslaved, that I might, through cunning, obtain certain metals in order to devise tools which would then enable me to design and file a skeleton key which might then unlock the shackles of imagination, but nothing was guaranteed. The prescription was not an easy pill to swallow. The idea, in and of itself however, was painfully simple. It required me to sacrifice my ‘self’ to the will of another for a period of time, to sacrifice my imaginary suffering, and suspend all of my beliefs. This can be thought of as Voluntary Personal Slavery. I found that this was much easier to discuss than to put into practice. This work necessitated a great deal of inner struggle, as one of the requirements was to mercilessly destroy all of my idols. As prescribed, it took years to reach some semblance of achievement. It also caused me to become very calloused.

What I found left was nothing more than an empty shell, a raw animal, devoid of form. There was nothing of my self to be found. All of my ideals were baseless. I was an idiot in the truest sense of the word. All of my opinions were those of others. All of my ‘beliefs’ turned out to be little more than silly Jewish fables parroted to me in my earliest days, from one hyperventilating idiot to the next.

Then I was sent to ‘school’, where I was ‘educated’. Simply put, school gives us ‘vocabulary’, teaches us how to crunch numbers, and instructs us in all of the vogue sciences of the day, but gives us very little solid knowledge.

It took me far too long to shake the shackles of my musical influences, The Beatles, the Doobie Brothers, and the ‘singer songwriter’ phase that I went through. I was none of these. I was simply trying to copy someone else, but wasn’t aware of it.

This was the slavery that my so-called ‘freedom of thought’ consisted of.

It was during this extended period of ‘wandering the wilderness of my soul’, that I experienced a ‘shifting of poles’, wherein everything seemed very superficial and inverted. But then I began to practice my instrument in a certain way, and things began to take order.

Robert Fripp’s school of Guitar Craft was extremely instructive in this regard.

Robert was also a student of the same particular ‘school of thought’ which I had discovered, and there was a ‘secret language’ of sorts which I immediately recognised as school terminology. His instruction in guitar led to further ‘enlightenment’ for his approach to practice was completely different. It was only then that I began to distinguish the Muse from otherwise distracting thoughts, and gave myself over to it.

In this realm, the music has existed from the moment of the beginning of time, and the musician is merely an instrument which makes himself available to the Muse. In this respect, the music makes the musician, rather than the opposite. The feeling is much like being taken down a wooded path blindfolded. Often, the musician is only vaguely aware of what he is doing until he is done. Music is a moving and ‘religious’ experience.

Everyone already really knows what I mean: The annual television cartoon ‘Merry Christmas Charlie Brown’ is really only good because of the music. And everyone gets that fuzzy feeling inside when Linus quotes the short biblical scripture and everyone begins the a cappella ‘oooh’s to ‘Hark, The Herald Angels Sing’ around the proud little Christmas tree. You don’t have to be religious to feel religious. The secret is the music. Not the religion.

That’s precisely why all churches make use of music. Closer to God. It’s that simple. Oh, some denominations will split hairs about the use of instruments and whatnot. That’s just a lot of nonsense. God invented music. Don’t believe me? Just go to church and tell everyone that you don’t believe that music or singing have a place in the church. They’ll look at you as if you’ve lost your mind.

But you won’t do that, will you?

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Since finding my Muse, I have developed into an instrumentalist which I would have never imagined myself, and have ‘ghost written’ many tunes which It has presented to me. Fame and fortune were not to be mine, but I would not trade my task for anything in the world.

My achievements are mine alone, and the rewards are likewise.

Due to illness, there are many activities that I have been forced to discontinue, but my guitars and my Muse will be the last things that I will surrender when I follow the others into that timeless void that John is edging ever closer toward tonight.

Chronic Fatigue Syndrome Primer for the Unafflicted

I generally don’t write about my ‘self’ in my blogs. Most of my readers don’t even know who the hell I really am anyway…not that it matters. I mostly stick to the peripheral stuff, that most often being music, and less often the insanity of politics.

Today, however, I want to discuss a physical malady that a lot of people, including my ‘self’, seem to be suffering from, which, in my opinion, is a wholly misunderstood and misrepresented affliction: Chronic Fatigue Syndrome, or CFS (also known as Myalgic Encephalomyelitis in Great Britain and Australia), is a physical affliction which is poorly understood by most medical professionals, family members, defense attorneys, judges, and…well, anyone who doesn’t suffer from it.

Moreover, I’m primarily writing this article in defense of those individuals who are being forced to live with the frustration, the humiliation, and the downright anger that results from having to live with this ‘disease’.

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My beloved Trek 1000 road bike leaned against the wall covered with a light coat of dust. I walked over to it and gently rolled it out from behind the chair where I had begrudgingly rested it years earlier. The tires were deflated. I removed the frame mounted pump, and with effort, re-inflated the tires. To the familiar, gentle clicking of the drive assembly, I wheeled my bicycle outdoors where I washed every part until again it gleamed as I once always kept it.

I stood there afterward for a while holding it steady, looking down the steep drive that I had muscled it up so many times after all of my rides, and began to cry. I knew that I had climbed the drive for the last time, and the reality of my mortality finally overcame me.

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Almost eight years ago, before CFS came a-calling on yours truly, I was a very healthy 50 year old who weighed a strapping 167 pound with a BMI of 12%. I was then an avid road cyclist who regularly took 50 mile rides, and who sometimes would ride another 25 just because I felt like it. I worked eight hour days as a carpenter, or more accurately, a self-employed Jackass-of-all-trades. The point being made here is that I was, and always had been, abundantly energized. I loved physical exertion. I relished sweating. Conquer and overcome, that was my credo.

Then, one November morning, while working at my craft, I observed that I didn’t feel quite ‘myself’. A day or two earlier, I’d noticed that I had a swollen lymph gland in the fold of my upper leg and my lower abdominal area. The client that I’d been working for dropped by, telling me about his morning, and mentioned that he’d just been to get his influenza shot, and that I should take advantage of the deal he’d received.

“I may have already waited until too late,” I replied, “I feel as if I’m already coming down with it.”

“Not to worry,” he assured, “Since you’re about to wrap up here we can start on our new project any time next week you feel like it.”

After completing the job, I went home and prepared for the week of misery. All of the signs of the influenza were there: eye pressure, raised body temperature, dull headache, lethargy, and that uneasy feeling that it usually brings.

Days passed. The flu never came, yet the feeling of impending illness hadn’t left. In addition, I was beginning to feel extremely exhausted. I could hardly vacuum the studio, or clean the ashes from the fireplace without having to sit and rest. Naturally, this was cause for concern, after all, I NEVER got freaking tired.

The next week I was sitting in front of a physician, explaining my symptoms. Copious notes were taken, blood work and x-rays were ordered. All results turned up negative. Next came the MRI, the stress test, another MRI, more blood tests, more this, and more that.

Five weeks later, I felt no better, and still there was no prognosis. Each time I went back to the clinic to get my results, I was prepared for the worst. I knew they were bound to finally find something that was going to be bad, and terminal. Still, nothing.

Eventually, I became sick and tired of being sick and tired. “Piss on it,” I declared. “I’ll train this crap out of me.” After all, that is what I’d always done, just push through it. And with that I donned my riding attire, hauled my rollers out onto the veranda, and pushed my bike outside. I hopped into the saddle and started riding.

After a few short sessions throughout the following days, which left me consumed, I was really irritated, and was intent on knocking this stuff out of me. I was at least going to train for an hour, come hell or high water. I finally did.

That was the longest, most grueling hour of my life. After I’d finished, I virtually fell off of the bike. I actually nearly collapsed. My muscles felt as if they were made of lead, and my muscles were burning badly. My head was pounding. I was gasping for breath.

This left me exasperated; my resting pulse rate was still 52 beats per minute. My blood pressure was 112/60…but I felt like I was 101 years old.

That was the last time that I attempted to ride my bicycle. I was convinced that I was dying.

And I was going through hell trying to explain to doctors and others how I was feeling. I told one, “After staying awake all night, you know how disoriented you feel by noon the next day? That’s how messed up I feel all of the time.”

To another I explained, “When you were a kid, did you wonder how Superman must’ve felt when he was weakened with Kryptonite? Well, now I know.”

To yet another I said, “Imagine waking up with a hangover, only to discover you are coming down with the flu. That’s how I physically feel all of the time.”

They kept telling me that they could find nothing wrong with me. To add insult to injury, I was asked on multiple occasions if I thought that I might be suffering from depression. I was appalled that a self-diagnosis was even suggested.

“Hell no”, I assured one physician, “but I certainly am suffering from a bad case of frustration, in that my condition is being written off as mental illness. I’m suffering from a physical affliction, I tell you.”

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And that was only the beginning. I had to put myself through the humiliation of deciding that I was a broken individual. I had to shatter my self-esteem and start the process of filing for disability. That took over a year.

In the end, I was denied my benefits. It was determined that I wasn’t ‘disabled according to law’. I was furious. It was only much later that I discovered precisely what ‘according to law’ implied.

In every case trial, the defense of Chronic Fatigue Syndrome has been presented, argued, and won by these jackass disability attorneys, as a mental condition. In order to win cases and thereby receive their fees, the attorneys choose the failsafe argument, because they know that an emotional illness cannot be disproven.

The winning argument, revolving around a false premise, sets an precedent, and every other case argument is based on the last determination. Every case takes ‘law’ farther and farther from the truth, but the lie obviously satisfies the Social Security Administration. The disability attorneys that you see on television promising that they’ll win your case are, in effect, authoring these erroneous laws.

Therefore, if you, or anyone you know, suffers from CFS, it is only in their mind, according to law.

It has become a wicked doubled edged sword for me. Bad Karma.

You see, I was once one of those who believed that people only suffered from imagined illnesses, and that all they needed to do was get up off their asses and get a job.

I once wished I could retire and devote all of my time to my craft.

Now however, nature having forced my retirement, stripped me of my energy to carry out the work of my primary occupation, constraining me to draw on my resources in order to make ends meet, and faced with a dreary life of struggling to maintain any semblance of a daily routine…

I swear I’d take a good days work and a long bicycle ride over a million dollars, because all of the money in the world can’t buy back what I want most.