The "Doctor" Is In

Trey Smith

Most of the posts I pen concern philosophy and politics, but from time to time, I share with you my ongoing challenges from the variety of conditions I have been blessed with. I have written quite a bit about my trials and tribulations with Klinefelter's Syndrome, Asperger's Syndrome, Fibromyalgia and Schizotypal Personality Disorder. There are two reasons for this, other than the fact I am basically an open person.

For starters, being autistic, I have hard time figuring out proper social boundaries. While the average bloke may have a good sense of knowing what is too much personal information, I tend to be clueless! So, rather than trying to unravel a knot that generally is lost on me anyway, I tend to lay it all out there. I suppose it's a good thing that I am disabled and don't work because, in this day and age where potential employers farm the internet for information about job applicants, I probably have shared enough personal information to scare any of them away! :D

There is another reason why I am so open. Many of the conditions I have are ones that people generally don't talk about, except in hushed tones. If an individual suspects or has learned that they have one or more of these maladies, it often engenders a lonely feeling. It leads to questions like, why me? How will I ever cope? How can I lead a "normal" life?

Because of my writings on these topics, it is not uncommon for me to receive emails from individuals who suspect or have recently been diagnosed with Klinefelter's Syndrome, Asperger's Syndrome, Fibromyalgia or Schizotypal Personality Disorder. While I most certainly am NOT a doctor, I can reach out to say it is not the end of the world. All of these conditions and syndromes are merely labels. They don't change the person you are; they merely define many of the challenges you face.

Since I have made it to 55 and I'm still going, it is a testament to the fact that a person's life doesn't end when you learn of your label[s]. This is not to say that my life has been a piece of cake -- it definitely has not -- but I somehow have been able to continue to muddle through. If I can do it, I see no reason why you can't either.

Is It Really All About the Kids?

Trey Smith

Yesterday, the US Supreme Court took up the issue of gay marriage in a case concerning California's Proposition 8. While a lot of legal arguments were tossed around, I want to focus on one.

Charles Cooper, legal counsel for four Californians seeking to uphold the results of Proposition 8, barring gay marriage in the state, told the court on Tuesday that the inability of same-sex couples to have children together meant that to allow them to wed would change the historic definition of marriage.

Time and time again, this has been one of the central arguments by those who oppose gay marriage. Though I do not happen to be gay, this argument, if upheld, would mean that people like me would be barred from getting married as well.

I was born with Klinefelter's Syndrome. My body does not produce sperm and there is no operation or therapy that will change this fact. According to Cooper's argument, since I am unable to procreate -- I certainly can and have had sex, I just can't produce babies -- my marriage to Della HAS changed "the historic definition of marriage."

But, of course, my marriage has done no such thing! The institution of marriage is alive and well. So, if Della and I can be married without procreation, why can't Steve and John or Cindy and Sara?

T Is For Aggression?

Trey Smith

Those creative folks in the pharmaceutical industry have invented a new condition for males to get all worked up about: Low T.

You see, as males age, their testosterone level slowly decreases. It's a very natural process. I suspect that the aging body doesn't NEED as much testosterone as it did when it was younger. But, according to drug manufacturers, diminishing levels of this hormone is not what any upstanding male should desire, so they've come up with a variety of concoctions to keep testosterone levels artificially high.

I think I have a better understanding of testosterone than the average bloke due to the fact that I have Klinefelter's Syndrome. Because of this condition, my body does not produce adequate amounts of the hormone. Were it not for hormone replacement therapy -- I'm on the patch -- my compromised health system would be a lot more compromised.

I didn't discover that I had abnormally low levels of testosterone until I was in my early 30s. My 20s represented the worst decade of my life to date. I was beset by horrible mood swings that led some medical professionals to think that I had Bipolar Disorder. When I was up, I was sky high. When I was down, I was way, way down. I contemplated suicide many times.

It wasn't until my late mother insisted that I get my hormone levels checked that it was discovered that I had the hormonal makeup of a post-menopausal woman!! 

The normal range of testosterone for males is 200 - 1100.  I checked in at a very low 100.  As my endocrinologist explained it to me, the hormonal deficiency was most responsible for my dramatic mood swings.  Getting my hormone level up to the minimum end of the range would help to mitigate some of my issues.

At this juncture, you might be asking yourself: Why this post today?  What does this have to do with the stuff Trey's been writing lately?

Glad you asked!

For one, it has to do with an article I read today on CNN.com, "Masculinity, Mental Illness and Guns: A Lethal Equation?"

Motivations are hard to pin down, but gender is the single most obvious and intractable variable when it comes to violence in America. Men and boys are responsible for 95% of all violent crimes in this country. "Male criminal participation in serious crimes at any age greatly exceeds that of females, regardless of source of data, crime type, level of involvement, or measure of participation" is how the National Academy of Sciences summed up the extant research.

How does masculinity figure into this? From an early age, boys learn that violence is not only an acceptable form of conflict resolution, but one that is admired. However the belief that violence is an inherently male characteristic is a fallacy. Most boys don't carry weapons, and almost all don't kill: are they not boys? Boys learn it.

While I certainly agree that males tend to learn that violence is an acceptable mode of relating to others, I think there is another important facet to be considered: biology.

Getting back to my personal experience, once it was determined that I had very low testosterone levels, I was put on testosterone replacement therapy. After my very first injection, I had to deal with something I wasn't prepared for. My doctor had warned me that I most likely would experience a sharp increase in my libido -- that had never been an issue for me, so I didn't experience much of any change in that area -- but I did come face-to-face with a surge in feelings of aggression.

Prior to the replacement therapy, I would have been described as passive-aggressive. I rarely confronted anything straight on. I don't think I had a directly aggressive bone in my body! But all that changed dramatically once I started receiving testosterone injections.

It took me several months to get a handle on it. I simply wasn't used to having feelings that, when angry, I wanted to punch somebody out. It frightened me that I even would think such a thing. It was so outside of my frame of reference.

The upshot here is that, while I agree that some aspects of violence are learned, I think various forms of aggression come more readily to males because our testosterone levels are higher than females. Part of the explanation is born of biology.

The second motivation of this entry is as an addendum to my earlier post of today, I Keep Deleting This Post. These three conditions that I must deal with -- Klinefelter's, Asperger's and Schizotypal Personality Disorder -- make me a rather unique case. I think that the interplay amongst them has a lot to do with the challenges I face.

They each possess their own distinct symptomatology and a lot of these symptoms bang into each other. At times, a symptom of one mitigates a symptom of another while, at other times, a symptom of one exacerbates one or more symptoms of the others.

No wonder I feel so screwed up about half the time!

Spam I Am - It's All About Size

Trey Smith

Like everyone else who does email, I receive spam. Some of it is offensive. Some of it is annoying. And some of it is funny, though I don't think that is the intent. I've decided to share some of it with you periodically in a feature I call, Spam I Am.

In western society -- particularly here in the US -- size matters. Yes, the B-I-G-G-E-R the B-E-T-T-E-R! A big car tells people you are strong and powerful. A big diamond on your engagement ring means you are a great catch. A big house means you've made it to the big time. A big salary means you are indispensable. A big burger or steak means you work hard and so you need big food to be fed.

If you are a male, the best way to prove that you have the machismo that matters is to have a BIG, BIG...penis?

MaxGentleman Enlargement Pills have been featured across major media outlets around the world, including ESP and Fox News, with dozens of positive reviews.

This is the only Male enlargement supplement that has been PROVEN in clinical trials to enlarge your penis safely, quickly, and importantly PERMANENTLY.

Here were the results in 5,000 randomized male subjects who took MaxGentleman for 6 months:

• Increase in penis length by 1-3 inches
• Increase in penis width by 20%.
• Aids in preventing Premature Ejaculation.
• Achieved longer, rock hard erections
• All gains in penis length and width were 100% permanent...

You know, one of the impacts of being an individual with Klinefelter's Syndrome is that I'm a bit undersized in a particular area. So, a person might think that ads of this nature would, at the very least, pique my interest.

Sorry to disappoint, but I simply laugh at this kind of spam! I take a rather Taoist approach to myself -- I am what I am. Some parts of me may be a bit larger than the norm (i.e., my nose and ears) and some parts of me are bit smaller than the norm (i.e., ahem). While size is one way to adjudge something, it's certainly not the only way.

In my book -- fortunately, my wife agrees! -- quality matters more than size.

Derivations on a Theme - The Creative Power of Angst

Trey Smith

It's interesting that I seem to need a source of conflict and disagreement, in order to have something to write about. This is not a bad thing is it?

I mean there is only so much poetry a person can write glorifying the beauty and perfection of a moment. When things are perfect I just want to sit and be and enjoy it, soaking in the moment of bliss in silence, only occasionally do I feel called to write about it. When there is nothing going wrong, I tend to not have much to say.
~ from Effortless Flow by Cym ~

In fact, in many ways, endlessly talking or writing about a problem or political issue or whatever, is a great way to avoid really dealing with it, really doing anything about it. It's easy to sit back and pop off about global warming, the 1%, political corruption, the hungry, the poor, the million different things a bleeding heart liberal like me can feel concerned about, but what it really achieves is a distancing, an objectivization, a rationalization... but not action.
~ from Notes from the Outside by Brandon ~

There is a beautiful song recorded by Céline Dion called The Power of Love. I think there can be no question that there is a wondrous creative energy that love produces. Yet, as the forces of yin and yang illustrate, a wondrous creative energy can be derived from angst as well.

Many of the world's greatest poets, authors, actors, singers and other creative performers are people who have taken the festering sore of angst and transformed it into the fuel to create something that dazzles the eye and ear. While I certainly wouldn't refer to myself as a great songwriter, angst was the foundation of my once prodigious output.

Until my early 30s, I was an angst-ridden individual. It's a typical response by a person with autism to a world that you don't really understand. A common refrain from Aspies is the feeling that you are living on the Wrong Planet!

My estrangement from the world ran even deeper than that. It was in my early 30s that I received a definitive diagnosis of Klinefelter's Syndrome (often referred to these days as XXY Syndrome). It was discovered that my body was producing too little testosterone and this lack of hormone meant that I faced a double whammy. Not only did my brain interpret the world differently than the norm, but I lacked the emotional energy to deal with it!

My worldview changed drastically when I started on hormone replacement therapy (a therapy I continue to this day). It provided me with the emotional foundation to begin to deal with a great reservoir of angst.

On the whole, it has improved my life immensely. It has helped to strengthen me both mentally AND physically. However, for all the positives, it has robbed me of something dear -- my poetic voice.

Before my diagnosis, I was known as a [published] poet and songwriter. The angst that nearly drove me insane and to suicide served as a platform for me to create beautiful works of written art. Creative writing seemed to be the only way I could open the pressure valve in my soul to let out some of the steam. If I had been unable to write poetry then, I am certain I would have done in myself long, long ago.

As a result of the hormone replacement therapy, I was better equipped to deal with many emotional issues. In no time at all, the angst began to ebb and, as the angst oozed from my mind and body, I found I couldn't write poetry anymore. I tried hard to rekindle the creative magic, but it was gone.

I still deal with a lot of anxiety issues and my obsessive-compulsive disorder, but these aren't the same as my former angst. I still write -- this blog is a testament to that! -- but, for the most part, I've switched to expository writing because that's the only vehicle still open to me.

Do I miss my poetic voice? Hell yes!! That said, I don't wish to trade places with my former self. I'd rather be healthier than poetic.

But I do understand the idea that angst (or conflict) is an engine that can produce things of great beauty and movement. Angst, though painful, is needed. Our world would be far uglier without it.

Derivations on a Theme - God Must Really Hate Me

In the comments section of the post, Let's Talk About Sin, at Fallen From Grace, Hoo Boy wrote,

Homosexuality is the unnatural copulation of like-sexed beings. Simple observation shows it is against nature as it does not lead to procreation. It is against the God-ordained order and is clearly ungodly and bad...

Of course, I have seen and heard this rationale countless times before. Homosexuality, we are told, is wrong because queers who have sexual relations can't make babies.

If that is the sole criteria for deciding what is godly and ungodly, then the Christian God must really hate me!! I can't play a role in making babies either.

Due to my genetic mutation (Klinefelter's Syndrome), my body doesn't produce sperm or, to put it as one of my doctors put it to me three decades ago, I shoot blanks!! I could copulate 24/7 and no babies ever will be born as the result of my activities.

And here's the operative part: God made me this way (if you buy-in to the "God" thing)!

Why would he do that? Why make a creature who can't procreate IF the inability to procreate makes one ungodly? This would seem to indicate that God -- who supposedly loves me -- wants me to be ungodly.

If he wants me to be ungodly, then how can he love me?

I think God needs a psychiatrist.

Why Me, Lord?

It is not uncommon at all, when we are beset with hurdles or tragedies in our lives, to ask, "Why me?" I consider myself a bit fortunate because this singular question does not dog me. I am sure that when I was a wee lad I most likely posed the question a time or two, but I have not become mired in the unknowable answer.

The way I see it is that troubles and even anomalies are normal. They occur on a regular basis. For every animal or plant born, there are mutations and aspects that aren't in the range of generally acknowledged parameters. Consequently, my abnormalities are part of the normalities of life.

So, while I have escaped the self-pitying question of "Why Me?", there is a question that I do wonder about from time to time: "Why so damn many anomalies in one person?"

While the various medical and mental health professionals I regularly see are constantly trying to update their diagnoses of this odd human specimen (me), some of the labels attached seem to be more fluid than permanent.

Klinefelter's has been definitely established based on my karotype panel and blood tests. Osteoporosis has been clearly demonstrated via x-rays and MRIs.

Beyond that, the rest of my assorted maladies don't have definitive tests that indicate their presence yea or nay. Diagnoses are rendered due to a variety of tools: medical and family history, various types of imaging services, blood tests, cognitive tests, behavioral observations and I'm sure many tools and factors I'm not even aware of.

On the muscular-joint front, my current diagnosis is fibromyalgia. In the past, some of my doctors have had suspicions that I suffered from Lupus, Multiple Sclerosis, Rheumatoid Arthritis, Mixed Connective Tissue Disease and/or at least two other conditions that I don't recall off hand. In my own ongoing research, I recently noted that a great deal of my physical symptoms match up well with Sjögren's Syndrome. I think I will mention this to my primary care physician at next week's appointment.

On the psychological front, my two current working diagnoses are Asperger's Syndrome (autism) and Schizotypal Personality Disorder. One or both are associated with the comorbid conditions of Obsessive-Compulsive Disorder, Social Anxiety Disorder and a general Anxiety Disorder. In addition, as mentioned in my last post, I have a long-term problem with verbal paraphasia (which typically has an organic cause).

That's a helluva lot of stuff for one person to deal with!!! Several of these disorders and conditions intersect with the others and they tend to reinforce and exacerbate some of the chief symptoms. I often feel like a human being that has been placed in a blender and then poured out after several runs through the chopping and mixing cycles.

So, while I don't dwell on the "Why me?" question, I do frequently ask, "Why so many all at once?"

No one -- not Tao, God or the Great Spaghetti Monster -- seems to provide an adequate answer to the question.

The Root of the Problem

Before we return to our regularly scheduled blogging topics, I decided to share two other bits of information regarding my "situation" (the second to follow this post). My continuing research has shown to me that the root cause of most of my physical and mental irregularities is the fact that I have Klinefelter's Syndrome (my 23rd chromosome should be XY, but it is XXY).

While some males with this syndrome escape many of the associated maladies, I seem to be a poster child for a good deal of the chief symptoms as well as many of the comorbid conditions. According to the website 47xxy.com, males with Klinefelter's may suffer from (the ones in green are those I have suffered/do suffer from):

• infertility
• incomplete masculinization; feminine, or pear shaped, body and body hair distribution
• decreased libido
• altered brain structure (still in the investigation process)
  
• osteoporosis
• taurodontism
• venous disease
• learning, emotional, and mental disorders
• autoimmune disorders such as lupus
• low energy
• low self esteem
• communication difficulties, especially with expressive language
• frustration-based outbursts
• motor skill issues
• developmental delays
  

Other research I've read indicates that autism, anxiety disorders and schizophrenic spectrum disorder are more prevalent in males with Klinefelter's than for the general population. You go down the list and, with only one or two exceptions, you have a really good picture of me.

Of the various symptoms/conditions listed above, the one which may well cause some of you to shake your head is "communication difficulties." I am a good writer and so this ability in this medium may cause you to think otherwise. But while I do seem to have an ability to communicate through writing, I do far less well via speech and interpersonal relationships. I seem to experience a great deal of difficulty getting my point across when I talk.

Two other odd communication difficulties I have suffered from for most of my adult life -- each seems to be growing worse -- are called semantic and remote paraphasia. Both occur quite frequently when I talk or write and they sometimes appear on this blog when I don't catch them in the editing process. Wikipedia describes each this way:

• Semantic paraphasia - The substituted word is related to the intended word. e.g. "I spent the whole day working on the television, I mean, computer."
• Remote paraphasia - The substituted word is, at most, distantly related to the intended word. e.g. "You forgot your musketeer, I mean, umbrella."

These two forms of verbal paraphasia drive me crazy because, no matter how diligently I try to concentrate on what I am saying or writing in the moment, I can't seem to avoid them. What is even worse is that my mind is thinking the correct word, but my mouth or fingers are sending out something different.

For example, my mind may formulate, "The big black bird flew across the sky," but I will type "The big black ball flew across the yard." When I proof my text, my eyes will identify the words ball and yard, yet my mind often will interpret those words as bird and sky. So, I leave them as they are and then my blogging compatriot Baroness Radon invariably will point out my goofs in the comments section. ;-)

Doofus Here

This morning I dropped a rather weighty can on my left foot. It hurts like the dickens and it's now a tad bit swollen. I've got it packed in ice right now.

I must say that I'm one of these people who is an accident just waiting to happen. It doesn't seem to matter how much planning I put into anything or how careful I am. If there is a conceivable way to injure oneself, I'm sure to discover it!

Part of my clumsiness and unsteadiness most likely is the result of my Klinefelter's Syndrome. Males with this affliction tend to be physically awkward and lack the muscle mass that is more the norm.

Of course, it may be a simple case that I was born a klutz! There are lots of people in the world of either sex who, for whatever reason, can't seem to avoid accidents. I am one of them for certain. :-)

No Excuses

There is this woman I know -- more an acquaintance than a friend -- who is Bi-Polar. I know that she's Bi-Polar because she has a penchant for telling everyone about her condition. She feels the need to tell everyone constantly because she's not a very nice person. She is rather crude and crass. Whenever she offends or upsets someone else -- happens quite frequently -- she announces that the other person can't be upset with HER because, of course, she's Bi-Polar and Bi-Polar people can't help but be crude and crass.

Bullshit!

Bi-Polar Disorder is no excuse. She happens to be crude and crass because she chooses to be so. She has chosen to be self-centered and not give a damn about other people's feelings.

But this post isn't about her -- it's about me. I don't want anyone to think that because I'm beset with anxiety disorders, Asperger's, Klinefelter's and Schizotypal Personality Disorder that I think any of these conditions provide me with a ready excuse to be an ugly person. While each of my maladies provides its own challenges to navigating life, not a single one of them can cause me to be rude, mean-spirited or nasty to other people.

The way I see it is that I simply have to work harder at social interaction than the average bloke. Many aspects of social communications -- like body language and typical social assumptions -- don't come easily to me and, when I try to guess what is being conveyed, I tend to guess incorrectly. So, while I hope that those close to me take into account much of my social awkwardness and difficulties, I still believe that the onus falls squarely on me.

If I appear to others in a manner that is not consistent with my intent, then it is MY responsibility to figure out how to alter the appearance so that the real me shines through. It's a misnomer to think that having a personality disorder or a neurological condition grants a person the license to be brutish towards others.

It doesn't.

Against One's Own Nature

One theme that we meet again and again throughout the 81 verses in the Tao Te Ching is this idea that turning against one's own nature creates problems. Both Nina Correa and Diane Dreher have underlined the point that, by not allowing ourselves to be who we really are, we generate stress and tension that results in anxiety, pain and disease.

As I have been working my way through the series on the TTC, I have taken these thoughts to heart and, recently, I have come to understand how this principle has influenced my life. For more than one decade, I tried to be something I am not and I'm suffering the consequences now.

As I have detailed in this space many times before, I'm a very introspective and introverted person. Since my formative years, I've been out-of-step with most of the world. I loathe crowds (particularly social gatherings) and spend the majority of my time alone -- usually deep in thought.

For the first 30 years of my life, I tended to keep to myself. This is not to say that I didn't have any friends -- I had several -- but my life was very compartmentalized. I spent time with a small group of pals (both individually and collectively), but always needed a lot of alone time to recharge.

To provide an example, as a young person, one of my favorite activities was hiking. I hiked all over the area in and around Hot Springs, AR. Most of these excursions were solitary ones. From time to time, a family member, friend or one particular girlfriend (my "now" wife, Della) would accompany me, but I didn't really enjoy the company!!

I felt most energized and spiritual when it was simply me and nature. When other people were there, I felt crowded. Anyone who knows me will tell you that I have a very large "personal space" and hiking with another person always made me feel as if that space was being invaded.

In addition, when someone is with you, a modicum of conversation is expected. When I hiked alone, it was sort of like energetic meditation. Consequently, the expectation of conversation interrupted my contemplative state.

In the summer of 1990, I entered Grad School at age 33. My chosen degree was a MS in Social Science with a political philosophy emphasis. Up until that juncture, I had been rather apolitical. About the only political thing I did each year was vote. Other than that, I generally ignored politics.

I had always considered myself a liberal, but, after reading a lot of the works of Karl Marx, I realized I was a quasi-Marxist! (I say quasi simply because, unlike a lot of dogmatic Marxists, I didn't view the man as a god-like figure. While I think his analysis of the modern world is spot on in many areas, I also grant he got several things wrong.)

As I studied the political process, it began to dawn on me that almost everything in our lives is, at least, small p political. Politics permeates families, social groups, companies, churches, and, of course, government. If I wanted to help affect positive social changes, I needed to get more involved in the political process.

Of course, this created a serious dilemma for me. To become more involved in the process meant I would need to become extroverted because the only way one can be influential WITH groups is if one is an active participant IN groups. With much soul searching and trepidation, I slowly eased myself into the kiddie pool. In time, I found myself in a crowded swimming pool at the adult end!

Not only did I become involved in many progressive organizations, but I served as a leader in many of them. I organized conferences, led marches and demonstrations, conducted workshops, and testified before state and local government bodies. On three occasions, I ran for public office: governor, congress and the local transit board.

However, almost all of these public activities made me very uncomfortable and, as I've detailed here before, I still kept the masses at arm's length. I was always looking for a way to escape -- even if only for a few minutes or an hour or so -- to get by myself to allow me that precious alone time. My favorite escape strategy was to disappear at lunchtime -- when everyone else was networking and socializing. It became a common joke amongst my colleagues as almost everyone got to play the "Where did Trey go?" game.

All this public involvement went against my nature. While I have suffered with Asperger's, Klinefelter's and arthritis all my life, my physical and neurological problems began to intensify during this period. I began to encounter serious bouts of fatigue, tremors, vertigo and intense pain. As the 1990s turned into the 21st century, my health was going downhill rapidly.

It was during this time that I was diagnosed with fibromyalgia and my Asperger's tendencies were becoming more and more prevalent. It got to the point in which I realized I simply couldn't keep going this way. I was driving myself mad. And so, slowly but surely, I began to deactivate my public self. Today, I border upon being a hermit.

This whole experience has provided me with a valuable lesson. By fighting against my own nature, I unwittingly exacerbated many of my maladies and changed manageable conditions into hard to manage ones. I created enormous amounts of internal stress and tension by trying to be someone I am not.

Today, I'm wrestling with the fallout in my experiment in extroversion. My overall health is only so-so and I don't think it will ever be right again. That said, I'm much more content with my solitary lifestyle than before. I no longer beat myself up for being a loner. I no longer push myself to fit into other people's external definitions.

I'm now living WITHIN -- not against -- my nature. My chief way of connecting with the world is through my writings on this blog.

My purpose in writing this long personal reflection today is the hope that it can serve as a warning to others to try to live the life consistent with the person you are. When we try to be who we are not, we often create the framework for our own downfall. This has certainly proven to be the case for me.

Lessons

Like most everyone I know, there are times that I eat too much or the wrong things. There are times when I overexert or I don't get enough sleep. Simply put, like the rest of you, there are times I don't take as good care of myself as I should and my body lets me know.

Each time something of this nature occurs, there is a lesson to be learned. Usually, the lesson is to cut back on my excesses and to center myself to find balance. As I've aged and matured, I don't have to keep relearning this lesson as often as in my youth. Ah, one sign of wisdom!

Unfortunately, being that I'm a person afflicted with Fibromyalgia and Klinefelter's Syndrome, there are many times when my body goes into revolt and there is no direct lesson involved. There's nothing I can do to ward off the pain and discomfort because it is an internal infirmity. I can follow all the dietary and exercise rules I've come to live by and yet the flare-ups still come whenever they feel like it.

Yet, while there isn't a direct lesson involved, every experience in life can teach each of us a thing or two, if we are open to learning. Out of my chronic pain, I think I've learned to be more compassionate. I don't necessarily show it very well because of my Asperger's, but I think I've learned the lesson, nonetheless.

I've also learned to think and contemplate the world around me more. When a person is feeling really raunchy a good deal of the time, you have a tendency to feel sorry for yourself. You can have excessive pity parties. I've been there. However, once I came to grips with the fact that I'm stuck with these infirmities for life and working a regular job is no longer in the cards, I realized that this freed up my time to become a philosopher of sorts -- to spend a lot of time pondering those fundamental questions that most people simply don't have the time nor energy to ponder.

And so, in many ways, this blog is made possible by my chronic pain. If it didn't have such a big hold on me, I would lead a more normal lifestyle and I would be far more busy which would mean less time to blog.

The big lesson for me is that pain and my weird neurological wiring have upsides as well as downsides. You're looking at one of the former. : )

Dealing with Terrible Angst

When I was a young man, I dealt with a lot of terrible angst (a great deal of my emotional state had to do with undiagnosed Klinefelter's Syndrome). At times, I contemplated suicide and/or thought I would end up in the loony bin. When my emotions got to the point that I thought they would consume me, the only thing I could do to relieve the stress and tension was to write!

I wrote all sorts of things: poetry, screenplays, sermons, commentaries, one entire movie script and, most importantly, song lyrics (sometimes I even crafted a workable tune to go with it!). Once I was diagnosed with KS and began testosterone replacement therapy, the vast majority of my angst melted away instantaneously.

For the most part, this was stupendous! I felt like a new and more confident person. But for all the positives, I lost something I cherished -- my poetic voice. Where I used to write poems and song lyrics like a dervish, I ceased writing them altogether. I no longer suffered from the angst and misery that I used as the subliminal fuel to siphon off my woe in a positive and creative manner.

Anyhow, as I was typing the post, "I Really Tried", it got me to thinking about my life as a young adult. One of the songs I wrote during this period, "What Will You Decide?" just popped into my head. Here are the lyrics from memory (some 25 - 30 years after the fact):

What Will You Decide?

I've walked these streets in silence for far too long a time
I've been waiting for a moment for the light to shine
But the darkness still continues; it's there both night and day
Only you can manage to take it all away.

Darling, what will you decide?
Do you dream about me too?
Have you ever really tried
to say the words, "I love you?"

My life hangs in the balance, I don't know where to turn
Sometimes I am amazed at the lessons never learned
I haven't been the friend I had always aimed to be
Only you can salvage this dream inside of me.

Darling, what will you decide?
Do you dream about me too?
Have you ever really tried
to say the words, "I love you?"

The lives we lead won't last us forever
One day the leaves will fall,
the songbird will not call
and we'll have missed our chance to be together.

I've walked these streets in silence for far too long a time
I've been waiting for a moment for the light to shine
But the darkness still continues; it's there both day and night
Only you can end it with your radiant light.

Darling, what will you decide?
Do you dream about me too?
Have you ever really tried
to say the words, "I love you?"

Darling, what will you decide?
Do you long to hold me too?
If you'd dig down deep inside
you'd know our love is true.

[Note: Lucky for me, I didn't get the girl! If I had, I wouldn't be so overjoyed married to my darling Della.)

My Stubble Along the Path

One of the time-honored rites of passage between fathers and sons is learning the proper techniques of shaving, that morning ritual most males engage in beginning near the time of puberty. Some dads teach their boy[s] with disposable razors and others the electric razor. The process tends to involve many tried and true accessories like the father's preferred shaving cream and the after shave splash of cologne (Aqua Velva or Skin Bracer?)

As a young man with Klinefelter's Syndrome, I missed out on this rite of passage. While my high school-age contemporaries were sharing time in front of the bathroom mirror with dear old dad, I was not. The problem was not a lack of interest; it was a lack of stubble. I had virtually no whiskers to shave!

By my junior year of college, I actually began to develop a few whiskers here and there. However, it wasn't enough to support the act of shaving daily; it was more like once or twice per week. During the second semester of my senior year, I decided not to shave at all -- just to see if I could muster some facial hair by graduation day. On said day, I looked like the average guy who hadn't shaved for a day or two!

It wasn't until I started on testosterone replacement therapy in my early 30s that I began to have a need to shave every day or so. Mind you, even at age 51, I still don't have whisker coverage as much as the average adult male, but I have enjoyed growing a mustache and goatee. A few years ago someone remarked that I looked like a white Malcolm X and I took that as a compliment.

After my recent gallbladder removal surgery, I decided to take it one step further. I wanted to see if I could grow a beard! I ended the experiment yesterday because it became very obvious that a beard is not on my path. So, I'll happily stick with the mustache and goatee!

The lesson I gleaned from my little experiment is to learn to be happy with who we are. There's nothing wrong with trying new things, but such things shouldn't be forced.

A Personal Dichotomy

One of the enduring messages of Taoism is flexibility. This can be seen in the references to the bamboo plant. Bamboo can withstand tremendous winds by bending, yet not breaking. Another point of illustration is water. Water itself is formless and flows in the areas of least resistance. Place an insurmountable obstacle in the river channel and the water will simply flow around it cutting a new course.

Both of these metaphors -- particularly the water -- appeal to my spiritual self. There have been many times, when faced with a challenge or a dilemma, that I've asked myself, "How would a river handle this?"

Yet, while my spiritual and intellectual selves embraces this principle, my physiological self is anything BUT flexible. Both my physical and emotional selves tend to be rigid.

From a physical standpoint, the key hallmark to my life is the pain from fibromyalgia and degenerative arthritis. When a part of the body hurts, I don't want to move it much. So, I tend to hold it rigidly in position to avoid unnecessary pain.

I'm also a quintessential klutz! Clumsiness happens to be common symptoms of those with KS and AS. During my youth, my parents took me to the local emergency room an average of twice per year from the ages 2 - 18 and I had many more major accidents that simply necessitated a visit to the family doctor.

Here's a brief list of my youthful "accidents":

• Struck in the head twice by moving golf clubs;
• Had a hockey stick broken over my head;
• Knocked unconscious by baseballs;
• Kicked in the face (with cleats) during soccer match;
  
• Left foot sliced from big toe to heal by jagged glass;
• Several stitches to left index finger caught in moving bicycle chain;
• Bites and scrapes when attacked by a German Shepherd;
• Stung multiple times in groin by a swarm of yellow jackets;
• Swallowed entire bottle of Children's Aspirin (age 2) -- had stomach pumped;
• Broken left arm from falling off of bicycle;
• Gravel dug out of knee from falling off of bicycle (different incident);
• General injuries from falling out of a tree;
• And, my personal favorite, getting a hypodermic needle stuck 2" deep in my right heel -- was yanked out with pliers by ex-Marine neighbor.

Due to all these accidents and more, I try to be as sure-footed as possible (it doesn't help though!) and I don't like trying to move with the situation because it almost always means I will end up injuring myself!

As I've chronicled here over the past month, my AS causes my personality to detest change in all its various forms. I plod through life following my rituals and I tend to come unglued if any of these rituals are interrupted or altered.

So, I seem to have a bit of a split in my make-up and I'm having a devil of a time trying to bring these different pieces together to form a whole.

Celebrating Weirdness

In my last post, I talked about how discombobulating it is to discover you have Asperger's Syndrome (AS). Now I will discuss the other side of the coin.

In a manner of speaking, finding out you have AS is liberating! It means my weirdness is not derived solely from selfishness, arrogance or stubbornness. It means there is a neurological explanation for many of my tendencies and the same is true for many people who have suffered in silence for years or even decades.

It's often difficult when a person has a condition or affliction that does not manifest itself in a change in a person's physical appearance. While I'm certainly not suggesting that life is a bowl of cherries for a person stricken with polio or cerebral palsy, when you encounter such a person, you can immediately see that something is different about them.

However, when a person suffers from a congenital defect (Klinefelter's Syndrome) or an autoimmune disease (fibromyalgia) or a neurological disorder (AS), nothing jumps out to meet the eye. You look to others as a "normal" person. There is no readily available sign that you suffer from one or more differences.

It's not uncommon for friends, family and colleagues -- even many in the medical community -- to think it's "all in your head". Some people will say you're just a malingerer or you are merely seeking attention or you're trying to get out of toeing the line re social expectations. Hear these things enough and you start to question yourself too!!

So, learning that there is an organic cause to your symptoms certainly provides you with better peace of mind. It's not all in your head or it is, but in a physiological sense.

But this sense of liberation comes at a cost. While learning you have a particular condition or malady is good, on the one hand, you have to be ever cognizant that you don't use this discovery to rationalize your behavior to the nth degree. Just because you have AS or Klinefelter, this doesn't give you a license to be a dolt. In other words, you have to be watchful that this label doesn't become a routine excuse for bad behavior.

Regardless of AS, I don't possess a license to hurt or offend others. While this will happen from time to time because of the differences of viewing and interacting with the world, I must learn to make compromises with those around me. While I hope others will learn about the many aspects of AS in terms of how I relate to them, I too need to be a better student of how my actions and words affect others.

I can't simply tread down my path with blinders on and expect others to get out of my way. I can't go through life like a bull in a china shop and, when I do or say something awkward or outside of social norms, merely exclaim, "Hey I have AS or Klinefelter's. It's not my fault."

As my motto states -- on the top left column of this blog -- I am part of the world and the world is part of me -- The One -- Tao. I simply have to figure out my realtion to the world and Tao as an aspie. It's not the easiest assignment I've ever had, but it's one I must complete.

A Possible Link?

One of the great advantages of using tracking software or services with a blog or other website is the kind of information one can glean from it. For example, I use SiteMeter and I can check it any time of the day or night to see where visitors hail from or the referring url. Earlier today I noticed that a visitor from England came to The Rambling Taoist as the result of a search on Google with the search terms of "klinefelter and asperger".

I followed the link and discovered a recent study published this past March that suggests there may be a link between these two syndromes. Because I have both, this is a very interesting potential development!

The high levels of autism traits in XXY men suggest that Klinefelter syndrome may be associated with an increased genetic vulnerability for autistic features. Interestingly, our finding of high rates of autistic traits across all dimensions of the autism phenotype suggest that vulnerability for autistic features in Klinefelter syndrome may not be restricted to impairments in social behavior and communication, but may extend to other aspects of the phenotype as well. Although this observation suggests that XXY men may display the specific combination of various individual traits that are all part of the autism phenotype, some of the traits and symptoms of autism are not specific for the autism phenotype, but may also be seen in individuals with other psychiatric disorders. Therefore, it is possible that men with Klinefelter may not only have an increased vulnerability for autism, but also for other psychiatric disorders.

In addition, I've read before -- though I don't have the citations offhand -- that there are some indications that those with Klinefelter's have a greater propensity for auto-immune disorders. So, the underlying root cause of my fibromyalgia and Asperger's Syndrome may be the abnormaility in my 26th chromosone.

Wrong Planet

I've really been completely out of sorts lately. Over the past two weeks my life has been turned upside down. My entire definition of who I am, what I believe and where I fit in the scheme of things has been torn asunder. I feel like a lost soul drifting in the ether.

I've been seeing a psychologist (Bill) -- mainly to help with my disability claim. However, during one of our sessions, the topic of autism came up. I remarked that, for many years, my wife has said that she feels I might be autistic. I always pooh poohed the idea because...well...autistic people have trouble communicating and many have developmental disabilities. That certainly doesn't describe an intelligent fellow like me!!

Bill thumbed through his DSM. He read me the description and symptoms of a particular neurological disorder. As he read, I perked up. It seemed to be describing me to a T. What is it, I asked. The answer? Asperger's Syndrome (AS).

Since that meeting, I've done a lot of research on AS. I took a test that provides strong indicators of the presence of AS. It says that a lot of people who score above 32 (out of 50 possible points) are prone to have it and I scored 46.

This revelation explains a lot of the problems I've had throughout my life. I don't do well in social situations and I don't seem to have the capability to "read" people. While I'm a very sympathetic individual, I don't seem to have the skill set to be empathetic. I am an extremely routinized person who doesn't deal well at all with change and I seem to enjoy repetitious activities.

In other words, I have what they call high functioning autism.

I've visited several websites that deal with AS and have read what others with the condition say about their lives. One recurrent theme is that many feel as if they're living on the wrong planet. I can truly relate to this sentiment as I've often thought this same thing throughout my life.

I will most likely be writing on this topic in the days to come both as a form of education to others and therapy for myself.

I no longer know who I am and, maybe, this virtual process will help me to find myself again.

P.S. While it's bad enough to learn that the wiring in my brain most likely isn't wired like most people, it's even more discombobulating since I also suffer from Klinefelter's Syndrome and Fibromyalgia too -- each of which has its own life-altering peculiarities. Consequently, I'm worried that I may be on an even different planet that most folks with AS!

An anomaly amongst anomalies.

Neither Here Nor There

I think almost everyone has found themselves in a classic catch-22 situation (the term comes from a novel of that name by Joseph Heller). It seems no matter which option is chosen or excluded, we find ourselves right back from whence we started...often between a rock and a hard place. The more we try to extricate ourselves from the situation, the more deeply enmeshed we find ourselves.

As I've discussed on this blog before, I've been diagnosed with Mixed Connective Tissue Disease (MCTD) and, more recently, Fibromyalgia. Both -- individually and in combination -- can be best described as conditions in which the body attacks itself. The symptoms are hard to describe to others because they are so widespread and can involve different body systems. Flare-ups may last anywhere from a few days to months on end.

Initially, my symptoms were mere annoyances, but, as I've aged, each has become more pronounced and the periods of remission far shorter. It seems now that each flare-up brings on a new symptom that I had not experienced previously.

To offer but one example. A few weeks ago I awoke to find the entire right side of my face was swollen with an odd looking rash and a large pustule in the corner of my lower right eyelid. Over the course of three days, the swelling intensified to the point that it was affecting the vision in my right eye. Upon awakening on the fourth day, the whole thing had magically disappeared as if it had never been there at all.

This is my life now. Weird maladies appear from out of nowhere, increase in size, duration or severity and then...poof...they're gone. It is because I never know when the next flare-up will strike, how long it will last or how many body systems will be affected, the idea of normal employment has necessarily been jettisoned.

And this is where my own version of catch-22 enters.

Despite the fact that government doctors have verified that I suffer from MCTD, fibromyalgia, Klinefelter's Syndrome, Legg-Calvé-Perthes Disease, and degenerative disc disease, they have concurrently decided that I do not meet the legal definition of permanently disabled and have thus denied me benefits from Social Security Disability and a similar state-based program.

However, for the last year or so I have also been receiving services from the Washington State Division of Vocational Rehabilitation. Last week I was asked to attend a meeting with my Voc Rehab Counselor. At the meeting, I was informed that a decision had been made to CLOSE my case because they had determined that I was too disabled to benefit from their services -- helping disabled people find full or part-time employment.

So, here's where I find myself: Disabled enough that a government agency, charged with helping disabled people find employment, says I'm too disabled to meet their criteria, while two other government agencies tell me I'm not disabled enough to meet their criteria.

Maybe Joseph Heller should write a book about me.

Houston, We Have a Problem

When visiting the doctor to discover the cause or origin of an infirmity, people want substantive answers replete with detailed explanations. Most of us don't want a diagnosis based on the flip of a coin or where a dart lands on a dartboard. Another answer that is rarely desired is for the doctor to shrug her/his shoulders and say, "Beats me".

A few years back, my doctor gave me a somewhat similar explanation. He put his arm around my shoulder and said, "Trey, my friend, you weren't put together very well".

During different periods of my life I have launched into a series of medical tests to try to ascertain what are the causative factors in a variety of symptoms I possess. I've visited with numerous medical professionals with complicated titles almost always ending in "ist".

For my first 30 years, more often than not, my conditions were consistently misdiagnosed. The only afflictions that were diagnosed correctly the first time around were flat feet and Perthes Disease.

Beginning around the age of 18, I started experiencing problems that mimicked Bipolar Disorder. I exhibited the characteristic moods swings from the highest highs to the lowest lows. For the next 15 years, several doctors assumed I had Bipolar Disorder or some derivation thereof.

My symptoms began to accelerate in my early 30s. My low periods were becoming far more serious with extended bouts of depression and some limited periods of suicidal thoughts. At one juncture, I thought of checking myself into an in-patient center and to begin lithium therapy.

Most fortunately, my mother intervened and sent me off for another round of medical tests. After one doctor ordered a very expensive hormonal test, it was quickly discovered that I had Klinefelter Syndrome (KS) -- My 23rd chromosome is XXY, not XY.

KS occurs in approximately 1 out of every 500 male births and it affects different males in different ways, though infertility is universal. The main characteristic is the body's inability to produce adequate amounts of testosterone, the primary hormone that makes a fellow male.

As one doctor explained it to me early on, imagine you're in a good sized lake. While most males have no trouble at all swimming from shore to shore, the male with KS can only muster the metabolic energy to tread water.

You struggle to keep your head above the water line. After awhile, you run out of energy and plummet to the bottom of the lake. You then use all of your available energy to claw your way back to the surface, but that's as far as you get and the cycle starts anew.

In some ways, it's easy to understand why my condition was misdiagnosed for more than a decade. The metabolic pattern of highs and lows seems quite similar to the Bipolar pattern of mania to depression. That said, the difference between the two was easily borne out by a simple blood test. Why didn't ANY of my previous doctors order such a test?

I'm posting this here today for any of my visitors who come to this blog utilizing the search term "Klinefelter Syndrome". I want you to know that you're not alone and that there are hormonal therapies that can change your life in a variety of beneficial ways.

Most importantly, I want to underscore the importance of obtaining the correct medical tests. Whether you suffer from KS or another condition, proper testing often is the key to a correct diagnosis and the ability to turn a negative infirmity into a positive and fulfilling life.