Toots Is Gone

Toots Thielemans was the premier harmonica man in European and American jazz for many decades.  He lived to be 94 years old.  And he finally moved on just yesterday.

My Toots experience is another one of those things which underlines heartbreak of my own making; an offshoot of ignorance and distorted view of reality hammered into me by family, which was way more extreme than most would ever believe.

Cemented that much more from living in a very shallow, mean and base-minded community, and a neighborhood which ridiculed behind your back relentlessly.  And to your face if a big enough crowd was there, willing to help the humiliation.  There were those who never ever bucked the crowd, for fear they would become the target.  Moral cowards.  I was rarely confronted directly, but I knew my family was odd one out.  Boy, did I ever know!  So I won't attempt to paint that picture further.

When I met Mr. Thielemans, he was being a bit mischievous, but at the same time offering me an opportunity like few musicians ever get.  I was too screwed up to bite.  So, adios, Toots, you at least gave it a shot.

Here's a pic from six years ago.  Money and maybe a sane, decent nature, along with talent and the ability to make others feel worthwhile tend to attract good mates.  No wonder; I am an empty bucket on all counts these days. 

The growing self hatred for my shortcomings may not be a constructive development.  Need to shop for that parasail, and scout the highest peaks for the best launch for a long long flight.  

A life of regret is hardly a life.  Certainly it is not the ideal way to best treasure this amazing phenomenon of living.  Getting sick in a chronic, if not necessarily immediately terminal way, did help me see the awesome aspect of all living things.  Existence, itself, is beyond anything that makes sense.

Mr. Thielemans was an example of one who did things right.  As nearly as I can tell, he was a more humble, decent person than what jazz and other music often enjoy.

He actually began as a guitar player and had good success with that, playing with the top big bands of late 40's early 50's.  He kept going until 2014 when his health caused him to cancel concerts and retire.  He died in his sleep.  Probably a happy man.

That is a good reason to finally quit being so sad; better to die happy than to exit wondering what the heck this whole misadventure was about, and why was it so poorly managed.

Anyway, thank you for your overture toward me way back then, and sorry for my stubborn self destruction and misguided ideas of everything which caused me to miss my cue.   You were most gracious.  I wish I had known something.  Otherwise, I wish I had never become even slightly involved in performing.   I wish so many things could be different, but they aren't, and this is what people most see as something I do that is half way competent.

Truthfully I was a much more naturally gifted mathematician or physicist or engineer than I was anything to do with music or art.  I rarely like the kingpins of the arts or music.  They are pushy, and annoying, and will shut down others out of petty jealousy and self aggrandizement.  They are not the best of society.

The inventors of machines which make the air clean and of comfortable temperature, of machines that can take you from point A to point B safely and comfortably, of medical breakthroughs, etc.; those are the heroes.  Beyonce and her thug buddy Jay Z are nothing.  She can sing and is great, but can't hold a candle to any great engineer.  We have it upside down for who is admired.  We admire con artists and scumbags whenever possible it seems.

Anyway, Jean-Baptiste,  our little conversation stuck with me.  You tried.  I have never known exactly how to try.  Or even how to cry and be done with it.

So, what overly stupid thing am I doing now?  What bliss is being offered that I cannot see?  Why is sadness and illness all I know?  I am in good enough shape.  To others I "look better than (they've) ever seen me!"  Really?  wow.  They haven't known me that long.

Seriously, one can only handle so much.  I wonder what will happen when I do reach my limit.  It must be near because I am not finding surviving this level of the muck to be a sustainable experience.
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Soothing the Savage Beast

Once again we played Demille's Italian restaurant on Adams ave.   At first there were only a couple of people there, and for the longest time.  Then it filled up.  We were outside on the outside dining patio or whatever one might call that.  People on the sidewalk can lean on the wall and watch.

Several did.  There is a bus stop just across the sidewalk and down about ten yards.  A couple of people opted to let the bus go on and waited for the next one so they could enjoy the show.

I felt good about my efforts and everyone else's tonight.  Amazing how nauseous I have been feeling but when I play, none of that has power.  Plus I have my little remedies.  Still, playing, when I can feel some freedom--meaning I am half way familiar with material and everyone is on pitch and making sense--then I seem to float in a different dimension.  It was a very happy place tonight.

That must be my "safe space".  But I rarely chase people out for being white or some other misnomer of a description.

I kind of enjoyed pissing off some facebook folk.  But ridicule politics have just about run my patience and self restraint into the ground.  People who play the intellectual are all up in arms when their side is the recipient of nonsensical cheap shots, photoshopped propaganda, etc., yet they jump on the bully bandwagon of personal attack and insult any chance they get.  I called them on it.

Oh boy, so of course the ridicule turns to me.  Geriatric internet badasses, being just insulting enough that I might be tempted to kick them in the crotch, with ferocity, should we be using the same language in person.

And, I understand with places where we try to nation build or other intrusive foolishness, but Canada?  I don't get all up their face over Canadian politics.  It would be impolite.  I find it impolite when foreign people, not living here get overly involved in our crazy governmental affairs.  For one thing, their info is even more skewed than ours because they aren't here to experience it first hand.  **Even though much of our local news is best found in foreign media**.  We are ill informed as it is.

But, you get a better sense of a place if you are there.  People forget that in their haste to jump to conclusions about debatable or unclear circumstances, some distance away.  If the info available is through an AP or other fine journalist, then God only knows what the truth actually is.

Like hands up, don't shoot.  That scenario never happened.  It was proven, but those who trade in chaos and racial hatred hate the truth as much as they hate people in general, and white people in particular.

Truth is, guilty whites who are set in a way in which they have nothing to lose are the ones who invent most of the racial hatred talking points, like the misguided guilt over "privilege".  These people think Blacks are too stupid to fend for themselves or even complete normal achievements in particular circumstances s well as whites.

====really, everything about the present setup seems designed to maintain a hostile racial divide with a large number of Black neighborhoods being anything but diverse, happy, healthy, safe, or anything else positive. But they get the votes in a friggin block, wrapped neatly.  The whole thing is screwed up.  I have seen real discrimination, and real hypocrisy.  Either content of character, acts and deeds trump race, or they don't.  The pandering elitist trying to hide their colors seem to go with the "don't" option.====

Seriously, Black people are not stupid or weak, but the culture of the 'hood, promoted by pandering white elitists, is unworkable, without much merit, and not constructive.  It keeps people living, culturally, like predatory animals, and it keeps them uneducated, irresponsible for children and much else, and angry at everyone.  This pretense of helping while doing anything possible to decimate an ethnic culture (the redneck-like culture of the hood is not African or anything but redneck--gang attitude etc. See Thomas Sowell's book on the subject. He explains where the redneck culture came from originally.  Not funny, country boy redneck, but proud-of-ignorance redneck.

It blew me away that Sowell's take on what redneck is, for want of another word, is not necessarily confined to a race, but absolutely to behavior.

A culture of anger and resentment is being fomented; and to a large degree by elitist white people pretending to be "fighting for" whatever the mob wants..  Just take a walk in your local 'hood, and if you come out alive, you will know this is true.

I blame the white politicians and demagogues as much as I do the Jesse Js and Al Sharptons of the world for the half truths and the cult of anger and lack of conscience in the inner cities, and even the outer.  You can either celebrate anger and throw gas on the fire, or seriously clean up the situation and quit enabling self destruction.  The advent of "white privilege", insistence upon pretending that institutional racism this huge issue harming all "people of color" [[**Keeeeryst!!! do these people even hear themselves?  Not that long ago the phrase, "of color" would have had all the people obsessed with race all over you.]] is a dangerous approach to take if you want a peaceful heterogenous society.  Or even peaceful segregated.

You have all these racial chauvinists, claiming they aren't racist because they are not white, yet they want separation.  And even more violently racist goals.  Enter the Hillarys of the world.  Let's not only promote half truths, but make sure that all our verbal efforts lead toward hatred and divisiveness based upon race and/or ethnicity; or other physical things like tarnsylvestia

Opportunists do not care about the damage done to strangers, the culture, anything.  The most conspicuous battles for power in our field of view and experience is between opportunists.  Amoral people.  Some of what passes as morality is not, in my book.   But with no code of values you are a lower form of life.  All people are not equal, except in their opportunity to make their own good time and not at the expense of others.

Otherwise, I would consider the deceivers and thieves and thugs in all walks of life, particularly government, a lower class of person.  Those who respect the rights of others, natural rights, are the people you want in your neighborhood.  I do.  And in my life.  period. or should I say "dot"?  Well there already is a period.  Maybe two.  Or more.

Anyway.  Today I am wanting to tell everyone off.  Why, I do not know, really.  But when I was playing with Sande and the others tonight, no negative image or thought while we were actually playing.  I felt good.

Soothed, even

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It's a Yoyo Life, But Hope May Be The Pragmatic Approach

My comment about hope being pragmatic is the result of my own recent experiences and experiences shared on forums about aquagenic pruritus and such.  One lady on the AP page said she wants to just give up; can't take it any more.

Had I found no relief, I would be right there with her.  But, from time to time, I have found relief and it can be a huge relief, and a big surprise at once.  I had been so free of the attacks that I almost headed to work on Saturday without my usual one or two extra T shirts and shirts,  And extra pants.

I have carried spare clothes for a couple of years because if an attack started changing to a clean dry shirt often helped, and if I had to shower etc, I needed the clothes.  At one outdoor show, I changed three times before the start.

I was doing so well I was not doing the spare clothes routine.  But, just to be sure, I tossed a couple of t shirts and a shirt in the car.  Good thing.  I had an attack, and nothing I could do. I had to use the shower to make it gop quickly and to reduce the extreme discomfort.  I was so mad.

Just free floating anger.  I am not one who thinks God is a sadist because I am having a little trouble, so I don't start in on that tack.  I just pounded the steering wheel in my car and acted like a two year old, mostly.  Auto's AC wouldn't do the trick.  Good thing I could avail of the shower that day and still be done in the ridiculous amount of time we had.  I wonder if my coworkers hate me.

I do everything I can to make up for my glitches.  When I can come in over night I work late late late.  Safest time.

Even with the return of the nasty pruritus attack, I'd say the overall trend with health is improvement. For the last couple of years it has isolated me, made crazy, limited me like you would not believe.

Now most of the time I am not ultra foggy.  Or I should say I am not that way all the time as much as I was.  I am gradually finding energy.   I am not positive which of a few actions I have taken may be contributing to the improvement,.  I have a pretty good idea, though.  Bit of a dilemma but that is life.  Dogmatic and rigid biases and mistaken viewpoints do not work out sometimes.

Anyway.  None of the part about making a life and minimizing this blood issue is far fetched.  It is possible.  The toughest part is probably my defeatist depression and extreme sadness, when it creeps around.

I have been so grumpy, edgy and angry that maybe it is OK.  Getting mad and refusing defeat may be what it takes to forget how lonesomely depressed I can be.  I come from a family with a few wackos in the gene pool.  Brilliant, but seriously off balance.  Did the best they could.  Does not mean I have to give in to all the insanity genes that may have come my way through either parent or both.

Well, OK.  It is too late, sort of.  But finding a life from here on out is a huge challenge because A) I do not really know how
and B) In my mind it is too late.  But I thought it was too late at 35 or 40, too.  How did that work out?

I know it is not true, but a WW2 vet I know who is 95 I think, and plays uke and harmonica, said he likes my playing the best in the state.  It is not at all the veracity of the comment that is touching, but the fact he would say that and believe it.   You would not believe this guy's wind.  He can blow one of those Hawaiian conch shell things for a healthy spell before coming up for air. When I was smoking I think he could beat me.  He is  a good harmonica player too.

How do I so often forget the good fortune I have with people I come to know?  I guess I often hide from them for fear of talking to anyone distant when I am so down.  Really.  I have shut off from my favorite people because outside of specific music obligations or work, I couldn't talk to anyone.

It is like trying to hide because I feel like the real me during those periods would be a sap on the positive energy of good people.  Or I can't face the shame of being such a colossal under achiever, especially since I should have known better.  How come I didn't?

I think abuse, and maybe a touch of autism and my own secret retardation, mentally challenged MF syndrome, is partly to blame.  But mostly it is because I asm not a very astute person.  Not a bad person I don't think, but not too good, either.

Government Promotes Senior Traffic Death

Journalism ought to be my profession.  By that I mean it pays me enough to be way better off than now I think I am.

Here's how they operate.  They have medicare part xyz or maybe ABC.  Who cares?   And if you are like me and suspect you could need the good stuff, you get the gap insurance sort of thing.  Normally, a rip off.

So.  Your glasses of the last five years break because you fall on them.  You were falling a lot there for a few days.  Got that out of my system for awhile.  It happens every few months, or years.  One can never really be certain.

The prescription sunglasses are intact but so scratched up it is hard to say what is being viewed, in detail.  I van discern large from small animals and vehicles.  I figured regular glasses are the priority in case I have to read really fine print and clear specs have a slight edge over shades.

Well, the insurance only pays for glasses after cataract surgery, and maybe if an eye falls out.  Even then, you select from North Korea's latest eyeglass fashions.

They actually fixed my old glasses.  I am impressed.  I should have abused their good will and run off without spending money.  But, nooo.  I had to go for the progressive lens, with no political implications,  with amalgamated, wisteria-clad-radonium, and memory-shatter technology.  You never know when you need your lenses to double as a satellite dish and transponder.

It is often hard for places to get a progressive lens right, at least so it feels right to me.   This pair is as good as any I ever had.  The ones I got in Memphis were good.  I have to say, that place broke all of my Memphis customer service stereotypes.  They were my best ocular health and vision experience.

But the point is, if you have medicare, either you are a sap, or you are poor.  Glasses can easily be too expensive for the elder coot.  Not leaving your lonely, solitary rural abode may be out of the question as well.  So the pretend insurance of medicare figures maybe you'll blindly run into a tree and save everyone some money in the long haul.  They are out to kill you.

Forget death panels, it is systemic, institutionalized homicide.  Government assassins posed as unhelpful health bureaucrats.  Really, how sneak is that when they make old people drive blind.  And you wonder why they often drive oddly---cost of glasses to replace the broken pair.

Not that anyone owes me glasses.  Just don't pretend to wake up wondering what you can do to help idiots, seniors and other groups who lap up pandering nonsense.  You don't even care if the old losers can see.  If they can't even afford glasses then to hell with them.  They are just dead weight and worthless nobodies.

I am not sure we have any candidates running for Pope of the US who would both abolish the IRS, as we know it, and insist that if we are going to pretend insurance for the old and useless poor, then givem some dang glasses.  And not that North Korean junk.

One Step Forward and a bunch in all other directions

People may think I whine, but they have no clue what I really experience.  When the fog gets this heavy, it is a little scary.  Can't get up for more than a couple of minutes without felling sick.  It sucks.  But if I can establish some order and adhere to a reasonable schedule, I may survive OK>

Right now, I don't know.  I pushed too hard, as was evident on ride back from work yesterday; several potentially fatal lapses in situational awareness.  I think I was conscious, just in and out of the present reality.

Now I am stuck in an uncomfortable fog of fatigue and a little confusion.  This sucks.  I cannot give up yet.

I wish I truly believed in everything any religion has to offer.   I cannot lie about that.  I lost any faith some time ago.  No idea why.  Maybe lack of discipline, practice, or just being stupid.  People who have faith are better off, I think.  It almost doesn't matter that there is no proof, or the details of what it is they choose to believe.  I do not believe those fools who think they know all there is about life and existence, claiming a belief in science.  What does that mean?  And how can you actually pretend to be scientific if you close off possibilities outside your immediate understanding?  

The academia club can be a disgusting, annoying bunch of tripe.  Never have I met more closed minded people than those who consider themselves the elite of academia, therefore the world.   But right now,  I am too weak to even slap any of them.

My whole body feels like big heavy slap of clay.  Movement is not something it wants to initiate.

So many days, I say to myself, or the God I don't know if I believe exists, "Please.  Not today.  I can't die today, with this mess for others to sort.  Please wait until I have things responsibly ordered.  Then i will accept it.  But for today, please do not let me die.

That is when I feel so heavy, and weak, and foggy, and dimwitted.   I feels like my heart or a blood vessel in my brain could go at any time.  So, I mentally prepare for the monumental effort it takes to sit up, and get up, walk across the room to swallow one low dose aspirin, as prescribed.   I better do it.  Maybe this change is because my blood has gone haywire.   Too many platelets can be big trouble.  Too few can be dangerous, too.  I have tested with both conditions.  Had to cut down on the hydrea when they tanked.

Now I can't wait for night, cool air and maybe a little sleep.,  This tired mess is not so good.  But there are others who have no say so at all.  They can't even move at all.  SO I probably can do OK

Times Are Changing--great gig at the naked place

Physical changes are definitely occurring.   Hardly any of the fiery itch attacks, but fatigue and fogginess have jumped.  I stayed over night at work to get everything done.   I worked into the night on Monday.  I thought it was about 10 PM when I finished.  Yikes, it was way past 1 AM

I did not get much sleep, I suppose.  I will blame that for being so unsafe because I kept zapping into waking dreams on way home.  I almosyt had head-ons, almost hit the embankment on the side of the road, almost hit the end of the guard rail.  On and on.

It was strange and weird, and clearly unsafe.  I kept thinking I was ok, then the next thing I know, in my mind I am elsewhere, either doing something like riding a bike, or talking to someone, etc.  Then zap, I am in reality heading for a giant bolder head on.

Man I cannot do that.  Someone could get hurt.  But they didn't.  I made it home.  The good part is that for the last 25 miles of the journey, presence of other cars and humans are at a minimum.

Even though all the work and exercise and playing help fight fatigue, they do not prevent the cause.  But to a point, being active is therapeutic when I can get rolling.

All of a sudden they are talking about cannabis solutions on the AP forum.  Aquagenic pruritus. That is the best term we have for this symptom.  Water; humidity, perspiration, and any moisture, in general (along with heat) are triggers.   Many of those people have the type of blood disease I have, or something in that family.  Those with JAK2 mutation almost always have "the itch".

Some are affected as I have been, and some do not experience that intensity of discomfort.  The ones who off themselves apparently do.

So, now people are finding hemp/cannabis solutions.  I think CBD oil--the one which is not so psycho-active or narcotic, may help.  It has been a life saver for certain conditions which manifest in seizures.   Also I know of a man who has really defied the rule with his mesothelioma for the last 6 years, since his diagnosis.  His wife did tons of research and started giving him cbd oil with some thc at night, while reducing chemo etc.  You would not believe how well the guy is doing.

CBD is believed to attack some cancers. Really, they do not know much, even about drugs they have prescribed for years.

I have availed myself of patient groups and information in order to try to keep this condition from preventing me from working and doing things.  Living.  My disease is relatively rare, and my subtype and symptoms narrow it even more.  This limits the scope of info, but what info I have found is good and useful.

I have a way to get cbd oil, and I have not had much in the way of attacks for weeks.  Right now, I am not sure if it is the cbd accounting for the change or not.  It could be my situation is changing,   With all the fatigue it may be morphing into myeloid fibrosis.  Only bone marrow biopsy can say for sure.  I have suspected this from the start anyway, but without proof, we do not know for sure.  Reduction in itch, increase in random deep bone pain and joint pain, much increase in heavy footed, stumble-bum fatigue.

It gets embarrassing when I fall easily or bump into things constantly,  It happens with heavy fatigue. Co-workers just think I am clumsy.  I really am not clumsy.

The Gypsyfest gig was fantastic.  I risked all by going up Friday afternoon, pitching a tent, camping for the weekend.  I had to try.  It took forever to put up the tent.  It is a simple tent.  I took a lot of breaks.
But it worked out.  I could not have survived in the heat just setting up a tent, let alone staying there for a couple days, for at least the last two years.  Maybe more.

Some people there do not wear clothes.  It is an optional thing.  The good looking woman with the smirky creepy German guy were camped near me.  They did everything neatly and perfectly.  She was one of the naked ones.  And I like her.  I wish she'd dump Franz.  Of course there appears to be some money there and it could be his.  Otherwise why do nice women hang with jerks of his ilk?

Oh well.  Even the naked ones get way these days.

I have to say, the bands and musicians were pretty cool at this thing.  A somewhat eclectic mix of music.  The people were very nice and respectful, naked or not.  People did not leave trash around.  They pick up after themselves.  Unlike your garden variety "protestor".   I had protest mobs.  I just do. It is not the holy, pure thing we've been told. Mob action and mob psychosis are to be loathed, not promoted.  Not to say rebellion is not often called for.

Protestors are usually totalitarianists trying to stack the deck in their favor, playing victim, minding the business of others--the standard drill.

Enough of that.  You have no concept, I wouldn't think, of what a solid landmark it is that I slept in a firggin tent, and had such a great campsite that it was the hangout for the band and others.  Parking and all that.

I went ahead and played water volleyball in the early morning sunday.  I was in the water without severe itch.  I was able to exert.  You cannot imagine how weird it is to do such things when two months ago, such activity would be out of the question.

I forgot when next appointment is, but with physical changes, no-itch rashes, fatigue, ability to sweat without convulsing and being wiped out for the day with horrible itch, I think they better draw blood and see what's up with the levels.

This series of events marks a very significant, and maybe positive, change.  It is possible that cbd is causing the influence and prevalence of the wacko JAK2 gene to decrease so that the actual disease is minimal or even retreating.  We shall see.  I can be clinical and scientific enough to look for other explanations for the change, even though it coincides with CBD oil intake.

Playing was a little tough.  Certain facial and mouth muscles just kind of froze when I tried to do certain things.  I could not articulate those techniques, so I faked it.  It happens.  The next night at Comedy Club, no such trouble so that is good.

This is way too long.  If you knew what it was like to be me, and if you believe in miracles, you would tend to wonder if me being able to spend even one hour at that desert canyon resort wasn't a miracle.  And the fact I actually camped.  Outside on a hot sunny day...geez.  I was in shade most of the time though.

Maybe I will delve into sub-stories from the Hooplah in Jacumba (hah-CUM-bah) later on.  As well as the whole comedy club thing--a big success--sold out house, best looking crowd I ever played.  Lots of trophy there.