I never would have thought of this before it happened. I retired a few months ago, and there are other things going on, but this post is about retirement.
The other day, my partner called me, frantic because he thought he had left his vintage trumpet on his back porch when he left for work, and he was pretty sure it would disappear before he got home to rescue it. He’s a postal carrier and can’t just duck out for a half hour for an errand, so he called me. My first stop was at the post office to look inside his vehicle; there it was, despite the fact that he couldn’t remember putting it there. So….problem solved rather easily.

But.

As I was driving to the post office, it occurred to me how wonderful it felt to have a purpose, however mundane. I was on a mission to help someone, and I realized that I have had zero purpose in my life since I retired. I had a *very* responsible job, with an entire public utility depending on my thought process, creativity, and dependability for protection against untoward events on its transmission system. In short, I had a major purpose in my work life.

Then, blooey, gone. I know many people flail about in retirement, and as I said, I have other things going on that make it even more difficult for me than for most, but this one thing, lack of purpose, was not something I had recognized. If I could find a purpose that I can pursue with my current physical limitations, it would help me out.

It’s astonishing, sometimes, to run headlong into a culture one has read about but not experienced first hand.

I’m at a KOA in northern California, in a tent. Last night, as it approached dark, two vehicles arrived that were both full of people of a different culture. One that I recognized based on their dress and language, but I won’t identify it beyond that. What I will describe it as, is the polar opposite to what I would expect from the Swiss, espeically the German Swiss.

Twelve people and a dog piled out of these two vehicles and bedlam ensued. Children started running around screaming, the dog started barking, the adults were also barking at each other, and they appeared to be going to set up camp. In short, Bedlam had arrived, en masse. Amidst all the loud talking, running around, and dog barking, a large bundle was removed from one of the vehicles, and several smaller bundles. The driver of that vehicle, which was an extended cab pickup truck, then decided to move his truck out of the way, which meant moving it up a slight incline to get it back out of the camp site. It has been unseasonably rainy here and the ground is wet. He proceeded to spin the rear wheels trying to back up the truck, gassing it even harder when it slipped. He did this for several minutes, trying numerous times using the same technique, which didn’t work any better on subsequent tries than it had on the first. Finally, he realized that he could pull forward, go in a circle, and drive the truck up the incline forwards.

Harbinger of things to come.

 Next, they decided to set up what was their tent, something I have never seen the likes of. Think of the top of a covered wagon, with the hoops, but make it very, very large. It was like watching the Three Stooges try to set up a tent; they would set up some of the hoops, and then a great hue and cry would come out when the hoops fell down. No concept whatsoever of how to do this simple task; a complete lack of what I would call the Swiss-German way of doing things, that would have had a logical sequence to get the job done. No, there was just all this exclaiming and running about, with completely haphazard attempts showing a lack of even the concept of organizing a task before attempting to do it. Meanwhile the children running all over the place yelling and screaming, the dog barking, and general mayhem.

 Well, they decided where they wanted the tent, and a branch on a tree was in the way, so they just ripped the branch off the tree. No matter, the tree has more branches, right? They did finally get the tent set up, but that was after I packed up my stuff and moved to an entirely different area of the campground, one out by the road that I had rejected a week earlier for noise problems. However, the noise problem of the road paled in comparison to the noise problem of this group of campers, who at 9 PM were “just getting started” on their evening, with a big roaring fire and the continuing loud talking, children running around, and the dog barking.

I think that’s the end of public camping for me.

For the last six years I have been teaching someone to take over my responsible position when I retire, which is in three weeks. The person I call my “understudy” started very slowly due to cultural expectations that were pretty far off from what he encounted in an American company, but after a while he became competent and I was confident that he could handle the upcoming summer months with all the things that can go wrong. We still didn’t have anyone who could do the intensive software design that goes with the job, but he was able to modify what existed to work, even if he wouldn’t have been able to make major changes as called for.

So then he up and quit. He was training yet another understudy, but that person is only barely out of kindergarten, so to speak, and not able to take on what needs to be taken on. In short, my company is in deep doo-doo. It isn’t a matter of just slowing things down until the new guy gets better at it; this job deals with real-time scenarios and emergencies, and when one of those occurs, there isn’t time to hop on the learning curve. You have to be damn good, able to think creatively on your feet, able to trouble-shoot complex software that is reacting to what is likely something it has not seen before, and get results yesterday, sometimes in the middle of the night.

So the under-understudy called me during my concert today (yes I had the cell phone off, good little girl me) and the entire thing is blowing up on him big time while he, on a Saturday, is trying to get results yesterday. And so I, once again good-little-girl me, am here at work trying to make it break the way he made it break, and, well, I cannot make it break. I’m sure he did some thing that will embarrass him when he figures it out. Meanwhile I have to do part of his job for him (the part that he couldn’t get to work) so that he can do the rest of it, which hopefully is not broken on his end (yes I tested it on my end.)

So once again here I am, the only one who can do this.

No, I am not delaying my retirement. Nope. Ain’t my problem. Oh, did I mention why the other guy quit? Because they kept delaying a well-deserved promotion. First it was January, then it was “Oh we’re sorry, it will be April.” Then it was, “Oh, we’re sorry, it will be June.” And surprise, surprise, he went and got another job. So my company is getting some pretty intense karmic payback, and perhaps learning a few things in the process. The younger crowd doesn’t know loyalty, and if they are young enough that they don’t lose much in the way of retirement, they just wave goodbye out the door. If you have positions that don’t require five years of training to be good at, no big deal; you just train another one and away you go. But when you have a job like mine, that is extremely experience-intensive, it’s just downright stupid to treat people that way.

Other departments are losing people at a record pace, too. Funny about that. Some of it can be out-sourced sucessfully, and a lot of the people who work for the contracting companies are, you guessed it, ex-employees of my company who are making twice as much as they were, working for a contractor.

So, pension in hand, I think I”ll go live in another state where I can watch from a distance.

…then you need to read this and think about it a lot:

http://www.explorejournal.com/article/S1550-8307(10)00291-0/fulltext

If you’ve read much of this blog, you’ll know that I have struggled with some very knotty health problems over the last decade or so. I’ve posted this-and-that which I found to have some benefit, but always have been frustrated at not being able to find out, from anyone at all, degreed or not, expensive or not, what was wrong and how to fix it. I have had much, over my life, of the pat-pat-on-the-head-oh-just-relax-you-are-a-hysterical-female-take-this-drug approach. Idiots all. Not all of them male, either; some of the worst offenders were women.

Thank God for the internet. Without it I would be toast, diagnosed with Alzeimer’s in the near future, making the decision at some future point to take my Final Exit into my own hands rather than rot in a nursing home.

The story:

A friend of mine writes books and blogs. I’m on his distribution list, and often read what he has to say even though most of it is about history, which bores me even though it is his passion. He is someone who is driven to contact what I will simply call “the rest of him,” and those of you who don’t understand that, I don’t have time to go into it. Anyhoo, he just mentioned in passing once, that his life-long asthma had gone away (at the time he was 67.) I grabbed onto that and wrote him with a query. He put me in contact with a research organization run, not by a doctor, but by an engineer (heh.) I ended up on a yahoo list owned by this engineer, and started in on some of the recommendations of the people on that list who had recovered from Lyme disease. Yes, I said recovered. Some without any antibiotics at all, and the longest recovery time was about a year, with the shortest just a few months. These were people with long-term chronic Lyme, not people who got bitten by a tick last week. People who were debilitated.

I got a remission of some of my worst symptoms, that lasted a few months, and which then slowly reverted to the prior state. I went nuts trying to figure out what I had been doing that I changed. I did figure it out, finally, and now, a year later, am near to where I was then, but with other things not improved and some very much worse. The improvement is that I can again eat protein without causing myself to go off the rails psychologically and physically. At least I can eat it for breakfast if not dinner. The things that are worse are in the realm of mental function: it is no longer possible for me to do the complex analysis that was the bread-and-butter of my career as an engineer. I am still piddling along with process design and software to implement, but it is clear to me that I am running on just a few cylinders.

Meanwhile I ventured into other yahoo lists; one for Bartonella, for example. Somewhere on one of these lists, someone said to read Dr. Ritchie Shoemaker’s book Mold Warriors.

And there it was.

The answer.

After all these years.

After a couple of months I tracked someone in a nearby town who treats biotoxin illness, and got the blood tests to determine what genetic makeup I am dealing with. The bad news: I have both mold genes and also the post-Lyme gene. Fortunately only one half of each pair, which is why I still function even if at half-mast. In other words, it could be worse, much worse.

The concepts in short, for those of you unwilling to find out for yourselves:

One’s genetic makeup determines your ability (or lack thereof) to bind and eliminate biotoxins. Biotoxins come in many forms; Lyme spirochetes produce them; as do the common Lyme co-infections, such as babesia, ehrlichia, bartonella, and others I can’t remember right now. And molds produce them. (The syphilis bacteria, BTW, is also a spirochete, and it was a very long time before medicine was able to take the wide variety of symptoms, many neurological, that people with long-standing syphilis had, and figure out they were due to this one spirochete.)

If one CAN eliminate biotoxins, then one will react to a mold-infested building with some respiratory distress, maybe some coughing and nasal stuffiness. But if one can NOT eliminate biotoxins, one is in trouble. The thing is, that 75% of the population can bind and eliminate biotoxins, and they can be working or living in the same building as someone who is in the 25% who cannot, and will think the 25% is malingering, hysterical, or insane. If a genetically susceptible individual lives or works in a moldy environment, the consequences are severe. You end up with people diagnosed with things like CFS and fibromyalgia, which are fancy names meaning “we don’t know what is wrong with you.” And instead of having the cause treated, the sufferer is given drugs for the symptoms. How would you like to have a long-term, flaming case of syphilis-gone-neurological and be given drugs for the symptoms? Huh?

So I’m in the 25%. All indications so far are that I do not have Lyme disease (although for a time I thought I did) and that my neurological problems are due purely to mold toxin exposure.

One more word on mold; the mold we are talking about is not your generic basically harmless mold, but super-mold; think MRSA to get the concept across. MRSA came about because of overuse of antibiotics (or maybe just “use,” period) and super-mold occurred because of anti-fungals used on crops. So there are super-molds just like MRSA is a super-bug. The best known in the general populace is stachybotries, the “black mold” you sometimes hear about. (Not all black molds are stachybotries.)

The 25% of us who cannot bind and eliminate biotoxins are in deep doo-doo.

These super-molds are everywhere; people who are highly reactive have to live outside, on the move, and stay away from what they call plumes of airborne mold toxins that they react to violently if they come in contact. No, they are not nuts; they are trying to not die. Many of them have lost their career, all their possessions, and their life savings trying to get away from mold toxins. Every time possessions become contaminated, they must be discarded and new ones acquired (from mold-free sources, which is becoming more and more difficult,) which, of course over time, also become contaminated and must also be discarded. Being highly mold-reactive is an incredibly expensive situation to be in. You can’t just wash your clothes because washing does not get rid of mold spores. We’re not talking “complete” mold spores either. Like anything else, mold spores can get broken apart, but the extreme reactors react to a particle of mold spore just as they do to an “entire” mold spore. 

Being nearly everywhere, super-molds get into buildings easily. The problem is that if they find an environment they like, they set up a stronghold. Outdoors, there are so many checks and balances, that they can’t set up strongholds; they are held in check by everything else out there. (So far, at least.) Inside….they can get into a wall, on top of ceiling tiles, anywhere they can find. Usually the colonies are hidden; you might see a water stain on a ceiling tile. They might be growing under the carpet padding; inside a wall; just about anywhere that they have found hospitable, usually from the presence of water. It doesn’t take long, only about three days after a water exposure, before you can have a serious problem. And they continually release spores in the attempt to establish new strongholds. They love anything made of wood or wood products; they love plastics. The only thing I know of that they won’t grow on is bare metal, and some of the people who are severe reactors are living in bare metal buildings in the middle of nowhere.

The really, really bad news is that if you are in the 25%, you become more reactive on every successive exposure. Permanent organ and brain damage occurs. Just to clarify, this is not an allergic reaction; it is an inflammatory reaction and can be measured in blood tests. The reason why I and people like me have had the litany of “all your tests are normal” for decade upon decade, is that the wrong tests were being done. Inflammatory markers were not being checked; it was like the drunk who is looking under the street light for the keys he lost in the dark alley. When queried as to why he is looking under the street light, he replies “because I can see here.” It doesn’t matter that that is not where the keys are; it matters only that this is the only place he can see so he looks there. So all his tests are normal too, but he doesn’t find his keys.

So back to me: finally I know why I have not been healthy for my entire life, and why the last decade has been a continual, desperation-inducing descent into disability. Not only is my workplace contaminated, but the house that I bought nine years ago is contaminated, giving me near-continuous exposure. Once I was coached to observe not just where I felt better (outside; I love to camp because I feel so much better when I camp) but where and how I felt worse, it became painfully obvious. Now, I know that just walking inside my house after I have been outside, causes me to instantly start coughing. All my attempts to find out what I was ingesting at work to cause me to get running sinuses and a sore throat an hour after I got there, were wrong. It is the environment itself, not something I’m eating. I gave up so many things….tea, coffee, all the stuff that I like to have in the morning, because my reaction to the environment fit the time frame of when I ingested them. The reaction to the environment happened to coincide with the time of ingestion. Phooey.

An unfortunate and very, very common symptom of biotoxin illness is something that is called brain fog. That is, thoughts don’t remain around long enough to be acted on; intellect is not working well enough to form a plan. It has every appearance of Alzeimer’s. (Did you know that 7 out of 10 autopsied brains of those who died of “Alzeimer’s” contained Lyme spirochetes?) Getting out of a moldy environment requires an exquisite plan; otherwise, all those people who have lost their life savings would not have lost them; it happens because they are so mentally fuzzy that they just can’t get it right the first ten times. They go in stages, hanging on a treasured possession only to find that it contaminates their new environment. They move into a moldy apartment (from an old moldy apartment) and can’t afford to drop the lease. And so forth.

The doctor who did the genetic tests told me that I have to get out of my house. Mold Warriors said the same thing: the very first thing you have to do if you are mold toxin susceptible is get out of the environment that is toxic. But if your brain is not working, you can’t figure out how to do that. Yeah, I could go rent an apartment, but what is to guarantee that it is not also mold-infested? Do I just eat the lease, go rent another one, eat that lease, and so forth until all my savings are gone? Many people have done that.

I refuse, until I can get in fresh air long enough to clear my mind, and until I can get a sufficient quantity of detox-enabling supplements in me, over time, to do some good. I’m sort of holding my own but not doing well. Two months ago I started sleeping in my garage, which has screens up high that bring in fresh air. I could tell an immediate difference in my functioning; not quite like camping but sort of in the same category. However, the stuff I took out to the garage was of course itself mold-spore infested. Because the garage is almost outside, I don’t think any strongholds have been set up, but I am still breathing mold spores from my sleeping bag and jammies every night.

I work at home on Tuesdays and Thursdays. This is Saturday; this past Thursday I set up the laptop outside on the back porch (we are having gorgeous weather right now.) I worked out there all day. I felt incredibly peaceful, an unimaginable state of mind working either at work or inside my house. Just the fresh air was the entire difference. All this time, it hasn’t been “the work” or “the people;” it has been “the mold.” Sitting here now, at my computer inside my house, I feel crappy (It is too windy to work outside today.) I can tell that the keyboard has mold spores all over it; even though I brought the computer out of the room that I have determined is the worst one in the house, it still affects me greatly. I vacuumed it and wiped it down with a damp cloth; it is still contaminated enough that if feels like the Breeze of Hell is wafting over me as I type.

But I must get this out there, even if if helps only one person.

I was looking into buying a bare-bones cargo van, bare metal, to travel in (and, frankly, live in,) this summer. But it won’t fit in the garage. It is seven feet tall and my garage door is six feet; a support beam is also less than seven feet. The way I have kept my current vehicle from being contaminated (unknowingly, but the urge was strong) has been to have the windows down every night, in the garage that itself is open to outside air. But I can’t do that with a van that won’t fit in the garage, and we are not able, in southern AZ, to leave a vehicle outside with the windows down because it will go to Mexico without us.

So I am grateful to finally know for sure what is wrong, and stymied as to what to do about it. I know I need to live essentially outdoors (or in a VERY drafty building) for at least a year; I don’t know how to get rid of my house, though. If I sell it cheap and make it very clear that I think it has mold, the most likely scenario is that it will be snapped up by someone who will simply re-sell it at a profit and pocket the difference, keeping mum about the mold. Competent remediation (we’re talking Hazmat suits) can be astronomically expensive, costing more than the house is worth. I do not want to subject someone else to what has happened to me: character is what you do when no one is looking.

When people move, trying to get to a mold-free environment, they must discard all their soft goods: furniture, clothing, bedding, mattresses and box springs, anything made of wood or plastic or fabric, that $40k heirloom Persian carpet that has been in the family for generations, all those paintings that you love, the 1770s cello that one has spent half a career playing. You take only things made of metal that can be successfully cleaned. You can take your tuba, but not the case you keep it in.

How to do it? I can’t do it without a working brain, and I’m not going to have a working brain until I do it.

Ha. In some ways it’s definitely the Beginning of the End, but that is trite and besides, it feels more like a beginning to me than an end.

What is ending is my bondage to Corporate America. Lo but these last decades have felt more like I was in jail but being paid to be there. Paid well, but it was still jail. A good friend who has observed the effects of the bondage on me over many years, observed that I was going to be uncontainable come my freedom. I said, well, I think I am uncontainable now due to my need to escape my chains, and that come freedom I will be ever so much easier to be around. We shall see, won’t we?

As of July 1st I will be officially retired; about a ~ $40k pension plus social security when I decide I have the time to apply for it. Plus a quite reasonable sum in the bank. Others in my income bracket have expensive cars, expensive toys, fancy clothes, houses in exclusive neighborhoods, they eat at fancy restaurants, drink fine wine, etc. Me…nah. My entire reason for taking on this bondage at about the age of 40 was to secure just such a retirement as is now imminent. In retrospect, I have wondered if perhaps I could have made a better choice by taking on a “gubment” job, which would have secured a larger pension, but then again….the “gubment” stuff is starting to make squinching noises from too much out-go and too little in-go. It may have been the best decision to make the choice I did, after all. Public utilities have their problems, but the electricity has to be on, and the company will continue one way or another. Rate cases keep them afloat. Mine has been working people way too hard and simply refusing to spend money, even money that needs to be spent, but it is afloat and had no layoffs. There is something to be said for that, and with a little distance my attitude towards them may change somewhat.

Will I miss my comrades in bondage? Yes and no. I think I hit the jackpot in terms of the type of work I ended up with and the type of people who do it. It is in the far reaches of egghead types of work, a small coterie of engineers doing what is essentially research. We talk to each other in acronyms, have inter-cubicle discussions of how this or that affects reliability of the transmission system, or how this or that definition of federal criteria is going to affect things. For someone intellectually centered as I am, in some ways it was heaven, IF you discard the bondage aspect.

The happiest I can remember being (it really stands out in my mind) was when I was driving from Rhode Island to New Mexico on my way back to school in the late 1980s. I had sold almost all my stuff at a tag sale, UPS-ed myself four or five boxes of things that would survive the trip, and then spent a week figuring out how to load my hatchback with the rest of my stuff. I had a LOT in there, including things like a small desk, a rocking chair, a stereo with large speakers, and all my clothing and kitchen stuff. A LOT. Packed to the roof like a suitcase; I had to buy a mirror to put on the passenger side so I could see to back up.

So I was off, to a new life, happily leaving behind the old one of struggling to make a living, having people hound me to play the violin that I was so good at but did not enjoy any more. Freedom personified. There are two things I remember most about that trip, other than the incredible sense of freedom: one was driving across the Texas panhandle during monsoon season, when there are scattered thunderstorms. Everywhere I had lived before, you could not see beyond the next hill or the next grove of trees; if there were scattered thunderstorms, all that meant was that suddenly it would start raining and then a while later stop. On this trip, scattered thunderstorms meant that I could see five of them from where I was on the road; you could see to the horizon! One storm over here, one over there….maybe one approaching, but I could see it coming! Woo hoo!

The second thing, probably also in Texas, was pulling up to a stop sign to get on an entrance ramp for the freeway, after stopping to eat or something. There were two, quite tall, quite large stop signs. They must have been ten feet off the ground and three feet across, each. But for someone who had always lived with trees, this was astonishing: there was no vegetation around them; they were just sitting there in space. A completely new visual/spatial experience for me. Astonishing!

And the plants were the same way; in this arid environment, each plant had many square feet to itself, needing all that room for nutrients and water, when the water fell. Dots of things surrounded by bare ground.

My first trip to NM was by plane, for freshman orientation. (Wild, being old enough to be these people’s mother!) I flew into El Paso in early July. (That was my first view, from the plane, of those plants surrounded by bare dirt. Polka dots!) It was the type of airport, back then, where you got off the plane and then walked to the terminal. First, there was the heat; I think it was about 105 out, with near-zero humidity, and the air had a very pleasant odor that I had never encountered before. I found out later that it was what we call the creosote bush. I still love that odor and would keep them as pets if I could get them to grow inside.

Then there were the five years it took me to complete the last two years of my degree, but I had learned that at my age I could not take more than barely full time and expect to succeed; I had also determined (correctly) that when it came time to get a job that grades would be more important than how long it took me to get the grades.

After the five years, there was the start of the job that first looked like an incredible opportunity for a near-poverty-all-my-adult-life person such as I, and then as I finally got used to having an income, started to look like bondage. I also remember looking once at the little 1987 Toyota Celica I had bought used, and thinking how marvelous it was to be able to have and drive a car! And how people did not realize what they had, most of them. Everyone I was working with seemed to be striving to have more and more, instead of my then-focus on Wow! what I had.

I seem to have digressed from The Beginning of the Beginning to First Stage of Life Review, but what the hell.

A very interesting email from a friend:

Dear Eaubeauhorn,

As you know, I have embouchure dystonia which is known in the medical
world as focal dystonia, a cluster of involuntary motions that focus
around a particular activity, body part or both.  I’ve worked very
hard to overcome the symptoms by developing various Jedi mind tricks.
I’ve been able to play about 95% of the time w/o seriously disruptive
symptoms, but sometimes, I can’t control it, especially if I’m
nervous, hungry, tired, stressed out, in pain, etc.  Under these
circumstances I play with a constant slight vibrato… not so pretty
on a French horn.

For Christmas I was playing in a quartet.  My dystonia decided to act
up so badly at the second rehearsal, I could hardly play anything
right.  I apologized to the group explaining that my dystonia was
acting up.  One of the other horn players said, “I know what dystonia
is.  My wife has dopamine responsive dystonia, DRD.”  He explained
that she’s gotten complete relief from Sinemet, a drug that supplies
the brain chemical known as dopamine.  I’d never heard of DRD, but decided to
research it.

I found a website that described DRD, which usually strikes young
children with a  crippling disability.  But it also described a
recently discovered and milder form of DRD in adults that can present
with only one symptom:  a focal dystonia.  “Wow!” I thought, “could
that be me?”  Could it be possible that I could take a pill and be
able to play like a normal person again?  I didn’t think it would work
for me, but felt compelled to try it.

I got a Sinemet prescription from my family doctor.  After I took the
first dose, I found I could play normally, but was afraid that it was
a placebo effect or just a “good day” phenomenon.  So I continued to
watch & wait and experiment with the dose for the next two weeks.

Well, the undeniable results are in:  I’m getting a good reponse from
Sinemet, which means I probably have DRD.  I’ve been getting relief
from the symptoms by taking only 1/2 of the smallest dose of Sinemet,
so there’s virtually no side effects.  The relief lasts for about 4 or
5 hours before symptoms return.

If this is true DRD, I will probably never need to increase the dose
and there’s a chance that the dystonia symptoms could still go away on
their own.  Because it’s such a borderline, thing, sometimes this
happens.  But if it doesn’t go away, I’m still happy because I can
play my horn normally now without having to use Jedi mind tricks!

Anyway, that’s my big news!  Way cool, huh?

And, BTW, I got my fist 90 generic version of Sinemet tablets for only
$5.00 from Walmart.  Good cheap drugs — too good to be true, huh?

<signed by the friend>

The end of stage fright?

History: ever since my early 20s I have suffered from horrible stage fright. I’m not sure where it came from, but by then it was in full swing. I came to think of it as a conditioned response, which would start as long as three days before a performance. So how do you get Pavlov’s dog to stop salivating? It is much, MUCH harder than getting it to salivate in the first place. And salivating at the ring of a bell is not career-threatening, which stage fright can be, if it is the kind I have suffered with all my adult life.

Those of you who think stage fright is butterflies or nervousness, have no CLUE what I am talking about. What I’m talking about is physical shaking such that it is difficult to even hold an instrument, much less actually play it; I remember a performance of Brandenburg #1 in which I was shaking so badly that it was literally difficult to get the mouthpiece on my face, because the motion of my arms was greater than the size of my mouth. I remember a performance in a professional orchestra when I was a violinist, in which I suddenly started seeing stars and almost fell off my chair; I had to put my head between my knees to stay conscious. I would get “extreme diarrhea” DURING a performance; it wasn’t like those people who throw up before a performance, go out on stage, and then they are fine once they get going. I did not become “fine” in any sense once I got going. My limbs would not only be shaking but also stiff. Have you ever tried to maneuver a bow arm with muscles that are not only shaking but also stiff as boards to boot?

And as anyone knows who has been through this, it is not voluntary. It is anything but voluntary; from the sufferers point of view it is purely physical. Yes, there is self-talk that goes with it, but not what you’d expect: the self talk is not “Oh, I am not prepared; I can’t really play this music.” No, the self-talk is “DAMMITALLTOHELL MY GODDAMN BODY IS PULLING THIS UNBELIEVABLE CRAP AGAIN. HOW AM I GOING TO GET THROUGH THIS?”

The only times I could play and not enter into shaking/fainting mode were when I played in a brass section and could effectively hide physically from the audience. Even then there were times (like Bbg #1) when that was not sufficient.

I tried everything: bananas, which I had heard were natural beta-blockers. Nope. Actual beta blockers; nope. A dose that was sufficient to quell the over-the-top adrenalin reaction was also sufficient to make it impossible for me to keep my place or even halfway know what I was doing (I have since found out that I have a genetic variation that makes me react to medications such as beta blockers in extreme ways due to not being able to clear them from my system.) I did a lot of self-talk, which had no effect. I tried loving the audience (more effective than anything else I tried, but it did not keep me from having to put my head between my knees several times when on stage, and it did not stop the shaking or fainting. All it did was calm me somewhat emotionally, but this is not an emotional thing that is going on; the emotions one has are in reaction to the physical thing that is going on, rather than the converse.) I tried hating the audience (well, might as well do the opposite, right?) I tried ignoring the audience (impossible; it was the presence of an audience that caused the problem.)

For me, the physical reaction that I have labeled stage fright occurred regularly enough that I simply stopped performing in any situation that brought it on. Any situation that brought it on was a) a “real” audience as opposed to a gig at a retirement place; b) any of a) where the audience could easily see me. This stopped dead in its tracks my participation in a concert band that I had hitherto enjoyed, because my new position as oboist put me smack in front on the outside, and after many years of hiding in the brass section, I once again found myself almost passing out four separate times during that one performance. I quit that band immediately. No one understood why, and I wasn’t in the mood to be laughed at so I didn’t tell them why.

So I went back to playing euphonium in the local British-style brass band. I do not sit on the outside, and all but one of the gigs are non-threatening in terms of having a “real” audience. For that gig, I work the lights and sound and we are all happy with that.

But one rehearsal, the euphonium player whom I hide behind, and whose sound I also hide behind, was going to be absent. For some reason I decided to go anyway, but I also tried an experiment. I have embouchure dystonia (discussed elsewhere on this blog) and I was curious if the amino acid L-tyrosine would help with that; the dystonia is worse when I cannot hide, also. Stress is a known aggravator, so I’m not unusual in my response. Since I regularly take 1000mg of L-tyrosine when I get up in the morning (excellent mood elevator) I knew already that at worst I can’t tell I’ve taken it. It’s more like I notice a little bit if I don’t take it. (However, before you go honking off to try this, please note that I have read that some people become extremely agitated on as little as 200mg; clearly they have a different biochemistry than I do. One of my friends had that reaction, but then later she told me she doesn’t get stage fright, so why did she try it? Beats me.)

But I digress. I took 1000 mg about 12 hours after my morning dose. I got to the rehearsal; it had no discernable positive or negative effect on the dystonia….but!! but!! I would have had pretty bad nerves just being the sole euphonium player there, even though it was only a rehearsal. What I had….was a heightened ability to concentrate, which is kind of opposite to stage fright of the kind I experience; when I am in the throes of that reaction, concentration is exceedingly difficult due to the astonishing things that are going on with my body; I mean, how can you concentrate on the music well enough to do a good job when you are having to put your head between your knees to keep from fainting? When you can’t manage to paste your mouthpiece to your chops because your arms are shaking to a blur? So….no stage fright; instead, heightened concentration. I was fascinated, and took note.

I didn’t have a chance to test this again until last weekend. I had a concert with a “real” audience, in a large hall, on multiple instruments. I am a glutton for punishment in rehearsals; the more different things I can do, the happier I am. In this concert, I was playing 2nd oboe on Haydn 104; I was reading the 1st horn part on Swan lake, on the oboe (I don’t transpose; I read by concert pitch. Go look it up.) And I was playing the euphonium on the bassoon part in Showboat. Showboat was first thing on the program, and in order to survive playing euphonium without the dystonia’s taking over completely, I must do a very complete warm-up. There was nowhere to do that except on stage; most of the rest of the orchestra was composed of community college students just out of high school, and it was pretty much beyond them to go out on stage before they had to. So I was out there all alone, not hidden even slightly, in a large hall with a real audience already sitting down. I had taken 500mg of the L-tyrosine an hour ahead of time, in the hopes that it would help with the stage fright. I didn’t take the whole 1000mg because it was a 3pm concert and not all that long since the 1000mg a.m. dosing.

So…guess what? I warmed up, thoroughly, for a good ten minutes on stage by myself. I was not nervous; I even showed off a little bit. Astonishing. Amazing. Unbelievable. During the actual concert, I had a few instances of some minor butterflies and maybe even a shudder or two….but nothing, NOTHING like I have gone through before. The only variable I have changed is the L-tyrosine.

If this continues to work, my plans to simply stop trying to perform altogether may warrant reconsideration. It just has not been worth what I go through in terms of performing; I play in musical groups because I like playing the music, but I have always HATED performing, as you would have too had you had to go through what I’ve had to go through.

I’ll report the next excursion if there is one.

I lost my soul mate of 18 years a couple months ago, and it was heartbreaking. I’m a little better now, but there are still situations where I walk in the house and expect to see her sitting there ready to say Hi.
Sigh…
I finally understand why some people go and get another cat or dog when theirs dies; I never could do that, as it takes me two years to recover from a loss like that. But this time, I actually found comfort in putting a rolled-up furry thing in the position of a cat sleeping, where she used to sleep. It was less painful seeing the fake cat sleeping than it was to see nothing. So I finally get why people go get a replacement; it is just less painful to do that.
However, I had planned to be catless when this one died. I did not expect her to die so soon, as she appeared completely healthy, robust even, up to a few days before she died. I guess she was just fantastic at hiding her malaise, which is typical for cats; you don’t notice, unless you are really atentive, until it is very far along.
Goodbye, my sweetheart; I’ll see you on the other side.

Another update of sorts: I found out last fall that I have another genetic condition that I didn’t know about. I certainly knew about the effect it has had on my life, though.

For the few of you who read this and know who I am, this may make sense to you: I found out that I have Asperger’s Syndrome. That is, I am in the autistic spectrum. It explains my life: why I can’t figure out the rules of social interaction, why other people are often uncomfortable dealing with me, why I don’t get much information from facial expressions and instead look for clues in body language, why I have melt-downs in situations that don’t even bother other people, why I take everything literally, why I have intense insterests, why I can’t function in a noisy environment, etc, etc, etc! It is not as obvious as it might be because I’ve had 60 years to develop coping mechanisms, and there is considerable IQ at work to do that. People think I’m normal but unreasonable, much of the time. They don’t realize that I’m not normal and am not acting unreasonably given what I have to work with.

It explains basically everything. For those of you who would appreciate the similarity, rent and watch the movie Mozart and the Whale; I bear a very strong resemblance to the female lead character, and have some characteristics of the male lead character too. Fascinating and freeing to know this; I don’t have to keep trying to be normal when I don’t have the brain capability to do so. I’m going to concentrate on enjoying my assets and stop worrying about my deficits.

When I found out that this was a possibility, I started attending a support group for adults with Asperger’s. I was astonished to meet people there who were basically just like me….I would never have guessed they were anything but eccentric. There are a couple who are more obvious; the guy who stares at the floor while he talks; the woman who says repetitive things; but most….were not that different from me. Often testy, having a hard time dealing with the same environmental issues I do, problems with digestion and food allergies, etc. I’m encouraging many of them to get tested for pyroluria since it is behind many of the symptoms, and life can get better if one is treated for it.