Antisocial media

I used to enjoy social media. It has been a great way to publicize my writing and to connect with old friends. I have made several new friends, the majority of whom are other writers. Just like your job, we do not all think the same, the difference is we are eloquent when we disagree, and we tend to use verifiable facts in our arguments. We also rarely misspell insults. I’m not “spoiled,” this is how it should be.

Over the last few weeks there has been a change. Those of us dedicated to accuracy have been run over by a mob of semi-literate terrorists. In the interest of maintaining my spectacular blood pressure of 110/80, I have abandoned social media. I remain disturbed, I cannot organize my thoughts through all the static.

The storm has been brewing for some time. Civil discourse was a precious commodity, shared almost sacredly among writers, although thoroughly unexpected when interacting with the masses. In public comment columns it is disturbingly normal to see retorts such as  “your stupid,” and “goggle it” (when a person is too lazy to provide references and demands you do it for him, while misspelling the name of the most popular search engine). Insults and attacks are on the rise (US representative Maxine Waters recently called for mob action), and much like when I was a child and heard Archie Bunker use words which I did not understand outside of the fact they got a reaction, the actual words used as insults are meaningless. “Racist” and “NAZI” have both been used so excessively they mean nothing (sad because actual racists and NAZIs actually exist and now can fade into the background), and rather than become more accurately descriptive, the insults have just gotten more vile (vile people use vile words. . .), now “motherfucker” has become the go to response for the inarticulate.

If it were only the language it would not bother me nearly as much as it does, it is the lack of reasoning that chills me. The above example of “goggle (sic) it “, represents an expectation to be believed without question. Skepticism, perversely, is both embraced and rejected, fitting for a schizophrenic society. Doubting news sources became a political pursuit some time ago, giving birth to fact checking websites, which almost immediately were identified as biased themselves. The first news source to be vilified via political leaning was Fox news, or as it’s detractors prefer “faux news.” I’m guessing the poet who created that name pronounces the two words the same way. Fox faced the spurious charge of being the only biased news source, allowing the following corollary; if everything Fox broadcasts is false (because it is a conservative viewpoint), everything else is true. In a world defined by virtue signalling, skepticism about beliefs that are unpopular is good, while skepticism about beliefs that are popular is bad, with “popular” becoming the new definition of “true.” Believing everything is either good or bad results in binary thought processes; a world of black and white contains no grey. Schrodinger’s famous thought experiment could not have been created by a binary mind, in fact, not many works of art or even engineering could exist without the ability to see in between the extremes.

I can understand Fox news being dismissed by a partisan mind, the partisan mind has no interest in accuracy. That goes for anyone, conservatives dismiss liberal news sources, liberals dismiss conservative sources. It has gone beyond that. Recently I saw several people dispute a memo from the Department of Homeland Security (DHS). In the frenzy of crying children which the main stream media considered “reporting” on the story of families being separated at the border (full disclosure, I have never been separated from my family at the border in scores of crossings, call it “citizen privilege”), DHS released a paper on what was actually taking place. You know, the people actually involved in separating families, arguably the best possible source of information. I watched several keyboard brown shirts dismiss that information as inaccurate, some citing a story in the New York Times (NYT) without a link to the actual story, which they claimed quoted a memo from the Attorney General. One possible story in the NYT which appears to be the one referenced does not actually contain the “proof” it is claimed to contain, which might be why it was not provided as a link.

I understand there are people who trust the New York Times more than the Department of Homeland Security. There is a remarkable number of people who believe the Earth is flat, they just don’t get as much support from the media. The NYT has a Wikipedia page dedicated to their retractions, while DHS has never found the need to issue retractions. The media, after a long process of building trust that includes Murrow, Brinkley, and Cronkite, has squandered their reputation with talking heads whose interests are ratings rather than accuracy. Print media has lowered itself to the point that USA Today, once a joke among journalists, is scolding AP and Time over their standards.

Retractions may appear to indicate integrity, but they do not. The recently “corrected” story in Time about children separated from families cannot be unread, the cover cannot be unseen. That information remains out there, and despite the notice stating it was “corrected” (for people who show no regard for language, they’re awfully careful about the words used to describe their activities), I have seen people produce retracted stories as evidence, twisting their interpretation of the retraction into meaning the story is true.

The internet has produced a breed of “citizen journalists” with no concept of journalistic integrity. Crowd sourcing the news only creates static, as the loudest voices push their point of view. It is the theatre of bullies.

 

 

I most likely will return to social media. I was silenced, but as I considered the words of Elie Wiesel, I realized I must speak. There are plenty of voices out there, the majority of which are misinformed, ill informed, or just flat out lying. I had left my inner warrior behind, but I cannot be silent as my country is torn apart.

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Assault

Some funny things have come out of the #MeToo campaign. Okay, I use the word “funny” to describe things which have no humor about them.

The stated intent was to show victims of sexual assault they are not alone. This result may or may not have been achieved. We are certainly aware a large percentage of people, both women and men, have been comfortable enough to say “Me too.” This is enormous. Although the campaign was originally supposed to be about women, many men have come forward as well, uncovering the secret that any discussion about sex includes all sexes. Unfortunately, even with the barrier lowered from “experienced sexual assault” to “experienced sexual harassment,” the experiences have been exposed as, and this should come as no surprise, personal. One person’s assault is another person’s compliment. This has been difficult to digest for a digital world unaccustomed to nuance.

Society requires sensationalism. It is no longer satisfactory to say Susan doesn’t like Charlotte (who happens to be black), Susan is a racist.  If Andy is uncomfortable with homosexuals he must be a homophobe.  If Henry lets everyone in the room know he’s available he’s a sexual predator. If Cindy voted for a conservative she’s a NAZI.

One of the reasons a large number of victims of sexual assault did not come forward in the past is because they did not feel they would be believed. There are two parts to the reason they felt so. The first is because the primary defense to such accusations was to blame the victim, and in cases of sexual assault the psyche of the victim had already been crushed once. The second is that a fair number of accusations were false, because even the accusation is enough to destroy some lives; one false accusation can be used by countless defenders of the genuinely guilty.

I do not like to denigrate anyone’s pain. We all have different tolerances, and while in many of the experiences described as “sexual assault” no assault took place, the victim was damaged in some way. The important thing to remember is that damage does not refer to the act, only the result. If Charlie walks into the office and says “How is everyone today?” and Norma is having the very worst day of her life, Charlie did nothing wrong. Neither did Norma, until she claims Charlie harassed her by asking. Making claims of abuse when none has taken place is abusive in itself.

Some of the more abusive claims I have heard in the last few weeks have included a woman who claimed her assault took the form of a man referring to her as “honey.” One word, one time, no other context. Another woman claims to have been sexually assaulted by former President George H. W. Bush, four years ago when he was eighty nine and confined to a wheelchair. Mind you, in both these instances the word “assault” rather than “harassed” was used.

My own most frightening instance of sexual assault was only intimidation, there was no physical contact. I was twenty, driving an ice cream truck through the projects in California when I was surrounded by a gang of Chicanos. One reached through the window and removed the keys, a couple other ones started rocking the truck, tipping it enough the wheels would come off the ground, and the leader hung on the window telling me how they were going to “bone” me. As it was, I had another key and was able to escape, but I was terrified as I lived across the street from the projects and parked my truck out front, it was altogether possible they would see me at some point. I quit that job and moved across town about a month later. So I understand that no physical contact is required to create fear, but I maintain the threat of violence (in any form) is a requirement in order to designate assault.

I have been party to other conversations in which I was told that a difference of opinion threatened the person’s very existence. Fear is present, with no threat. Fear is beyond understanding, it is irrational, which is why it holds little legal standing.

This is why words are important. Assault is a crime, claiming you were assaulted implies someone committed a crime. Falsely accusing someone of a crime is a crime by itself. The lesson we should all learn from the #MeToo campaign is communication is crucial, and without words that have common meanings communication is impossible, often at the time it is needed the most.

It is fairly normal to be uncomfortable from time to time (sorry millennials). The level of that discomfort is the measure of trauma involved. I feel safe in saying everyone has at some point in their lives been uncomfortable in a sexual situation. This does not mean everyone has been sexually assaulted, what it means is that we all deal with life differently. Each and every one of us. My first “sexual assault” (different event, heterosexual) might be described as someone else’s fantasy; I was just unprepared that time and it was outside my desires. It was however an assault, I had no interest and the woman forced herself on me. I would never consider the millions of times I have been referred to with “terms of endearment” as sexual assaults, anyone who does is in need of psychological counseling as they are incapable of social interaction.

My hope is that the #MeToo campaign encourages conversations (dialogues rather than monologues), and those conversations create understandings. Some of those understandings are going to result in trust, some of them may result in discovering over sensitivity, most will result in growth. That would be a good thing, and the world needs some good things.

 

Conflicting memories

There is this feature on Facebook called “On this day.” It is a collection of posts you made on the date through the years, I usually see things I am happy to be reminded of, even the less than pleasant moments show I have survived.

I used to be a photographer, and one of my influences was Henri Cartier-Bresson. Cartier-Bresson conceived the photographic concept of “decisive moment,” as he said “To me, photography is the simultaneous recognition, in a fraction of a second, of the significance of an event.” I took this to the mechanics of film photography, where an exposure could be 1/1000 of a second. There are nine hundred ninety nine thousandths in the second which are not captured in the photograph, along with the countless seconds, minutes, etc. in which no camera was present. A story can be told in 1/1000 of a second, and it may be a completely different story 1/1000 of a second later.

Some days I posted several times on Facebook, there was usually a mood I could get from reviewing the posts, a pattern which gave me some insight into that day. Some days I wonder what I was thinking, how those seconds reflected my mood.

On this particular day, three years ago, at 1003, I posted a video from the concert I had attended the night before (Beck). I remember how much fun we had, how we were dancing so much the video is hard to follow. At 1740 I posted “If anyone needs a roommate, or would like to share a nice place in Princeton, it looks like I’m single.” About an hour later I posted video of a song by the Cars I had taught my step-granddaughter to play on her toy xylophone fifteen years earlier, I commented she was in college by then (2014).

I looked through the comments on the “looks like I’m single” post, and realized again how abrupt it had been. A month earlier I had thrown a lawn party to celebrate Lieve’s American citizenship. We had met not quite four years earlier, and now three years afterwards we don’t speak at all. Somewhere along the line I should have gotten angry with her, I’m sure there were moments, but I had kept my happy memories, and continued to care for the belongings she left in America until she returned. She swept into my life, found what she wanted, and swept out.

Yes, there is insight from this. I am a doormat. I look only slightly deeper and see more similar behavior on my part, my next girlfriend moved in, spent most of her time in Florida, and abruptly moved out, then claimed she couldn’t trust me with her belongings after complaining about how I took care of Lieve’s things (her opinion had been I should throw it all out, we actually argued about it). That entire relationship took only six months, I had become a more efficient doormat. I still collected the things she missed when she left, and brought them to her door, delaying only to avoid leaving them in the rain. Looking farther back, through the lens of a brain injury which has left me even more peaceful, I can see that with the exception of Emma, my third wife, I have always been a doormat. Probably with Emma as well, she just didn’t take advantage of it. I see it as my quality, and find myself doing it even now; thankfully Sam does all she can to avoid treating me in the manner I fall so easily into.

I know I was miserable for months when Lieve left, but I don’t remember it. I know there were signs we were drifting apart, and although I have no memory of purposefully ignoring them I must have. It seems obvious to everyone I talk to about it, yet somehow I missed it. I remember a woman pretending to slap me across the face and calling me a doormat, people told me but I thought I was being a better person, turning the other cheek and not reacting to betrayal. I still believe this to be true, I appreciate the lessons I have learned from being walked upon, and although I have volunteered for a repeat performances, I now know how to avoid them. The surreal quality of all of this puts me in a peaceful state of mind, which may seem incongruous. I am comfortable in knowing I responded with grace despite the (sometimes literal) attacks.

The artist Rene Magritte said “Everything we see hides another thing, we always want to see what is hidden by what we see.”

This is not a pipe

This is an image of a pipe, it cannot be smoked, the first step in seeing what is hiding behind what we see is recognizing what it is we do see. I see a happy carefree life, and while I desire to see the reality of the moments I remember as happy, I don’t wish to enhance my existing depression. Fortunately, I am able to see it all as a path, I am happy now so this was one path to happiness, clearly there are others.

I let go. I let go of the pain, but not the memories. Not that such an approach has assisted me in avoiding repeats. I have started to let go of the memories, largely because they suggest to me some friendship or relationship remains possible, and that moment has passed. When I see a day such as the one represented by Facebook, I realize I must leave those kind thoughts behind, I do not wish for anyone to be hurt, including me.

 

Genders

There has been a great deal of discussion about gender lately, yet no information. By that I mean many people are speaking about gender, but actual pertinent facts are rare. I typically prefer to start with a dictionary.

gen·der
/jendər/
noun
noun: gender; plural noun: genders

1.
the state of being male or female (typically used with reference to social and cultural differences rather than biological ones).
“traditional concepts of gender”
synonyms: sex
“variables included age, income, and gender”

Okay, the first problem exists within the definition. Gender is synonymous with sex. Back to the dictionary. Synonymous means “a word having the same or nearly the same meaning as another,” and if more people could comprehend the difference in “nearly” and “the same” more issues would be resolved on this planet than I can imagine. Even the text of the definition, “(typically used with reference to social and cultural differences rather than biological ones)” waffles on a solid definition, and “the state pf being male or female” assumes there are only two genders to match the two sexes. So misunderstandings are understandable.

Within that problem is the key to several others, so many issues are considered synonymous with sex. In addition to being the term we use to differentiate egg and sperm carriers, it is also the term for combining sperm with eggs. How it is that Inuits have fifty words for snow while we have just one word for the most essential act of life is relatively easy to understand. People don’t talk about sex, so they don’t use many words. In the “sex-positive” community there are occasionally more words than I can keep track of.

Gender refers to the cultural differences between the sexes. So the parents of a baby girl with short hair hears “Is is a boy or a girl” because one of the few markers of sex at that age (hair length) is ambiguous. I have been called a girl many times because I have kept my hair long most of my life, sometimes it’s an honest mistake, sometimes it has been meant as an insult. Little girls who climb trees are often called Tomboy, society is demanding we conform to gender roles. My youngest son played with dolls, my youngest daughter played with trucks, and today they both display the depth resulting from being “allowed” to play outside their sex-roles.

 

Sex refers to genetic makeup, males have a Y chromosome where females have an X chromosome, resulting in what are often referred to as “secondary sex characteristics,” breasts, uteruses, and slighter builds for women; body hair, testicles, and greater upper body strength in men. If anyone believes those are the only differences between the sexes, discussions about the difference between sex and gender are pointless.

People who identify as transgender feel they are the sex opposite their biology. While that position was renamed “gender dysphoria” rather than “gender identity disorder” in 1973, thus removing the language of mental or sexual disorders; the fact we are taking about sex caused many to stop paying attention. Yes, we have all heard “Sex Sells,” but most folks would rather not talk or hear about it. A few years back when all the fuss was made about bathroom laws, the greatest fear expressed was that men would be allowed in women’s bathrooms. From a rational point of view this is ridiculous at even the basest level. If surgery has taken place the transsexual woman appears to be a woman. A “man” does not identify as a “woman,” so they would have no desire to use a women’s bathroom. In actuality this was an expression of distaste for transsexuals,  most people do not dance about the bathroom displaying their genitals, certainly not transsexuals, and a transsexual would receive no gratification from seeing the genitals which they identify with their own. The pretend issue was it would open the door to predators, that door has always been open. Fears about other people enjoying looking at something demonstrate the veil around sexuality.

As with anything involving humans, the discussion went from accepting the idea of three (male, female, intersex) genders to identifying every possible variant. This confuses people who confuse sex and gender, there are obviously only two sexes (generally, although I have known a couple of XXY people), so how can there be thirty one genders? For the same reason there are only four Cardinal points and thirty one flavors of ice cream at Baskin Robbins. The two words apply to different objects. There can be as many genders as there are people, it is the state of their social differences.

There is little that is binary in our world, with some investigation deviations can always be found. When it comes to sexuality, how could there possibly be only two choices? I doubt every straight monogamous couple approach sexuality in exactly the same way, so “normal” is only a range within the spectrum, not a specific act. When do you decide that someone’s behavior is deviant? When you want to be intimate with them and they don’t do it your way, you might call them deviant, but they might say the same of you. I manage a group of polyamorists, which we organized for mature adults, as most groups are filled with judgemental young people. Our central rule is acceptance, your poly might not be my poly, but you are free from condemnation in our space, hard to believe this is necessary in a lifestyle based on understanding. We have grown to about three hundred members in just over a year, and have only had to kick a handful of people out. There are a few strict rules in ethical non-monogamy, primary is ethical behavior.

Your gender is whatever you want it to be. If you want to be the opposite sex through surgery you spend a good deal of time in psychological counseling, the surgery is impossible to reverse, parts removed cannot be replaced, so it cannot be a whim. In reality, you can never truly change your sex, your forty sixth chromosome you received from your father is either X or Y, that cannot be changed. I have a few transgender friends, running the spectrum from simply being more comfortable in roles opposite their biological sex to undergoing surgery. In the same way I don’t stay up at night wondering if my cis friends are male or female enough, I give no thought to the sexuality of my trans friends. They are all people first.

 

Lethal Narcissism

My mail has been unreliable, apparently I missed the degrees in psychology everyone received. They’re being used irresponsibly, and the value of something that was freely dispensed to all humans can actually drop to a level beneath worthless. Nonetheless, I hear diagnoses and prognoses bandied about by folks who have had no contact with their target patient. Throw a few psychological terms about and people will think you know what you’re talking about; if they’re gullible, or you’re saying what they want to hear. In reality there are a large portion who will see through you, but there is still that seven percent who think chocolate milk comes from brown cows.

A little research reveals this to be a symptom of the narcissism which is running rampant in American society. Narcissists tend to be the first to judge, and the last to judge themselves.  Of course, recognizing there is a multi million dollar market for selfie sticks might lead you to the same conclusion. The problem with the uneducated psychologists is they do not realize you may display a symptom without having the full blown syndrome. Yes, we have taken a turn towards narcissism as a society, but everyone with a cubicle plastered with photos of themselves is not a clinically diagnosed narcissist. One diagnostic test that has worked for me is to present someone with a list of the symptoms of narcissism. If they do not recognize any of the traits within themselves, they are most likely a narcissist. A balanced individual will recognize their own faults.

We are not over run by people with Narcissistic Personality Disorder (NPD), but the number of people openly displaying aspects are unusually prevalent. They are:

  1. Grandiosity with expectations of superior treatment from others
  2. Fixated on fantasies of power, success, intelligence, attractiveness, etc.
  3. Self-perception of being unique, superior and associated with high-status people and institutions
  4. Needing constant admiration from others
  5. Sense of entitlement to special treatment and to obedience from others
  6. Exploitative of others to achieve personal gain
  7. Unwilling to empathize with others’ feelings, wishes, or needs
  8. Intensely envious of others and the belief that others are equally envious of them
  9. Pompous and arrogant demeanor

You see this all around you, just not at pathological levels. You can certainly taste it in my writing. Unfortunately, as with any psychological disorder, behavior that is not addressed self validates and increases. I am troubled for society, the expressions are becoming lethal. When national personalities call for violence, someone will be listening. If that person is less than well balanced, violence of some sort will follow. It starts with rhetoric, and when that rhetoric is challenged the response is ad hominem. I was in a discussion last week about politics, and one person went non-linear, eventually saying “I can have my opinions without factually reporting why I have them…” As I recall, the purpose of exchanging opinions was to convince people of your opinion. This person was under the impression that all that was required for me to accept her opinion as fact was her saying it. If there is truly a New World Order, this is it, “It’s true because I want it to be true.”

My ex-wife was similar. We would be discussing a subject and she would say something which had no basis in reality. When I corrected her she would argue. When I presented evidence she would say “Well, you’ve obviously done more research than I, but I still have the right to my opinion.” One time she actually placed her fingers in her ears because she did not want to hear anything which disproved her point. We’re divorced now. I don’t mind people who disagree with me, I’ve often learned new views, but when someone chooses ignorance over information there is nothing left to talk about.

The issue is not limited to a single group, discussions are becoming more difficult in general, and it’s not just my brain injury. I used to belong to several pro second amendment groups, but a few of them became unstable, with the “gun-nuts” often feared by the anti-gun crowd taking over. They disturbed me as well, so I left those groups. I’ve stayed with a few groups who promote responsibility, finding that conversations with responsible people are more satisfying regardless of topic, there is less a sense of being in an echo chamber when people speak freely and back up their opinions.

This is where narcissism can become lethal. The narcissist, in his arrogance, has isolated himself from other ideas, living in an echo chamber. He believes he is smarter than everyone else, and empowered to apply his concept of justice. The echo chamber is appealing to the narcissist. There are no voices of dissent. In many cases I find they have no intention of making sense, they just want to make noise. Louder is truer.

This week a breaking point snapped, and a man who believed his opinion reflected reality opened fire on a baseball team. He was the typical slacktivist, after firing fifty rounds the only casualty was the shooter. He did manage to wound six people, one seriously, another with a round to the foot. The story has revealed few details as the FBI has taken over the investigation, the rifle has been described as an “AK style weapon” by people who have most likely never held a firearm, and it appears he had been living on the street for several weeks. How he managed to conceal a rifle while witnesses who knew of him said all his belongings were in a bag is a bit odd, as well as how someone could live on the streets when they were carrying a $500 asset.

James T. Hodgkinson had a variety of reasons for believing Republicans should die. In his pocket was found a list of other pro-life politicians he planned to assassinate, because people who wish to preserve life should die. The logic reveals a streak of narcissism. His lack of concern for human life can easily be blamed on the severity of his mental illness, it can also be blamed on media figures who have encouraged violence through their rhetoric. Oddly (?), the media doubled down, suggesting the shooting was not enough. One Democratic member of congress responded to the calls for unity following the attack by saying she thought the shooting was funny. Why we might expect a more solemn response from a party with a history of violent acts indicates we are far more gracious than they are, even as we are portrayed as the bullies in life. This is narcissism showing, the belief they are superior, they have been wronged, no other opinion matters.

Where did this come from? One theory is that narcissists are born out of trauma, another that they are the result of “over-parenting.” I would like to think we can curb the progression from personality trait to personality disorder, but the nature of the process shields the narcissist from introspection. Contrary to popular opinion we are not all psychiatrists, and are ill equipped to counsel the mentally ill. Narcissists deny their own issues and accuse others of being narcissistic. In a defense of the shooting, Democratic Strategist James Devine said “We are in a war with selfish, foolish & narcissistic rich people. Why is it a shock when things turn violent?” Such a transparent statement, revealing his own narcissism.

Facing narcissists in my life for over fifty years, I eventually learned how to deal with them. Don’t. They either become more narcissistic or violent. They unwittingly isolate themselves, help give them what they want, complete isolation. As much as we may say “sticks and stones will break my bones, but words will never hurt me,” words do hurt. They can be an incitement to violence against a crowd, or against a single person.

 

 

 

 

 

 

Synchronicity

As I approach Father’s Day, I am surrounded by synchronicity, a set of events which appear to have meaningful coincidences. I do not actually believe in the concept of coincidences in the first place, that they should be meaningful absent a cause is more a mind trying to make connections where they do not exist rather than a deep insight, it is, simply, a vibe. But I like the word “Synchronicity.”

My own father and I have had an unusual relationship. I say unusual because it does not seem to be the relationship my peers express experiencing. We’ve been close, distant, and close again for decades. From what people have told me, their relationships have been stable and unchanging. My father and I have both grown over the years, at some points we were on the same plane, others we were not.

Just last December, I was rather harsh with my father. I will make the excuse that I was exhausted from trying to explain the complexity of my brain injury when he popped in with an email of basically “Well what you should do…” after I had been struggling most of the year to do those very things, but I released fifty eight years of frustration on him. Regardless of what I perceived as aloofness, I went overboard. His response was precisely what I would desire, he didn’t make a big deal about it. Instead, when I told him about my surgery in April, he flew in to spend a few days.

 

Dad as I came out of surgery

 

I contrast this with several other paternal relationships in my life.

I would like to believe my relationship with my children is similar to that with my father, in the sense I love them no matter how much they turn away from me. Just last week my youngest son turned thirty four, we haven’t spoken in a few years, but last I saw him he was holding onto a coat of mine which he had borrowed on a previous visit twelve years prior. He said it was the only piece of me he had. Nolan has not communicated with me in years, but he has not (as his siblings have) blocked me. He is honest, if he were angry he might block me, he just doesn’t want to get caught up in the drama of his siblings disapproval of me. I’m still holding out hope for the siblings as well, but it’s hard to reach out to them while I’m blocked. I just know how I grew in my relationships and hope they will do something similar. They have a few years to go, I was about the age my eldest is now when I found a way to understand my father, but then I wanted to understand my father, I was a bit more curious.

My son Nolan (in my coat)

My girlfriend has a difficult relationship with her father, and as I examine that relationship and attempt to assist in the repair of it, I appreciate my father even more. Where our differences often were the result of one of us growing in a dimension the other had not (at the moment), Sam’s and her father’s issues appear to spring from a lack of growth. From what I can see, their relationship has not changed over their lifetimes, both seeking the ideal relationship and accepting nothing less; Sam seeking her vision of a proper father and Saul seeking his vision of a proper daughter, neither accepting the other’s frailties. I hear actual expressions of compassion from each of them, but each wants the other to change. This is the problem my children have, they resist changing their point of view for fear of it being perceived as weakness, an acknowledgement of their previous point of view being “wrong.”

These relationships, and those of other people I have been close to, tell me there is no “normal” father/child relationship any more than there are normal interpersonal relationships of any kind. It is certainly common for children to love their parents and vice versa, but as in any relationship, one party’s love does not obligate reciprocation.

I believe my father is proud of me, he recognizes my strengths and even though I did not follow the path he had in mind, I have been a productive member of society. I am certainly proud of the good works he has accomplished. Go back forty years and we were both difficult and less mature.

Times change. Some of the things I did forty years ago are unacceptable now, others were odd then but normal now. As I have come to reconcile my brain injury, one of my primary concerns was that I am not who I was before the fall. My neuropsychologist reminded me that no one is who they were last year or ten years ago, we change, the world changes, and the healthy among us adapt.

Some people refuse to let go of their pain. Some people find themselves trapped in a relationship in which their opposite clings to their pain. The healthy thing to do would be to walk away, but parental relationships can be as painful to walk away from as to endure. Parents tend to understand the delicate balance, which is why I had hoped my own children would see our relationship more clearly once they became parents. One more lesson in “just because it worked for you doesn’t mean anyone else will see it.” That is a lesson I need to relearn often.

If there is a secret, that is it. Learn and relearn. As each participant changes, and the world they live in changes, accept and forgive; this project never ends. It would be nice if relationships were simple, but they are not; they are the connections of two unique individuals. You can blame the frustrations on Fitzgerald, “So we beat on, boats against the current, borne back ceaselessly into the past” or you can change the way you look at it. Leave the past behind, and focus on now, accept and forgive.

 

 

 

 

What’s in your wallet?

I am well aware that I do not fit in to the definition of “normal,” the larger question of my sanity remains unresolved.

With a last name of Cash, I have always had an interest in currency. I keep coins and notes from various places in my wallet (European style with built in coin purse), as time has passed and the collection has become more diverse, I have adopted the rationale that when someone someday finds my body, they will be perplexed, it will be my final joke. An inventory this morning reveals;

A 100 Ruble note ($1.69 USD)

A 10 Euro and 5 Euro note ($11.43 and $5.71 USD)

A 1000 (old) Peso note ($0.05 USD)

And in coins;

A Susan B Anthony and “Gold” US Dollar

A 2£ coin

A 100 (old) Peso coin

A Canadian dollar

One French Franc circa 1970

A 2€ coin

An East Caribbean dollar

A two Drachma coin

One each one, two, five, and ten Ruble coins

A Septa subway token

 

Certainly the wallet of a traveler, perhaps a time traveler? Three passports, a couple of visas, don’t even know my real name? Well, most folks don’t, and I’m not entirely certain.

 

 

My days are scattered, this morning I am contemplating the relationship of Tachyons to Dark Matter, whether politically correct revisions at Disneyland foretell mankind’s loss of humor, why two regenerations of The Master are more troubling than multiple regenerations of The Doctor interacting on Doctor Who, whether my younger friends parents were listening to my favorite music when they conceived my friends, and if my new earplugs should be teal or pink. I settled on pink.

Folks will think these are hearing aids, when in fact they are the opposite

 

I had a friend around the turn of the century (this one), when I was working as a technician, and we often said our lives were like having seventeen video screens on at once. Recently I saw a meme about brain injury which used the same analogy, right down to the number seventeen. Maybe that’s why I am weathering recovery so well, I was already like this. I have recently discovered my inner ear is a rather precise barometer, one more thing on my mind as I verify my impression with the readout on my phone.

When I was very young, we had a willow tree in our front yard. In addition to learning one “lesson of the willow,” that it is better to bend rather than to break, I also learned that a willow switch stings more than a belt. Everything has a purpose or two, not all bring wisdom in the same way. In learning the second lesson of the willow, I learned third, that I should not take off with a friend to the ice cream parlor a mile away at five years old. What kind of teacher provides a single lesson? That is lesson number four. It’s an unending cycle, which can be traced back to a willow tree.

I live in a forest, surrounded by teachers and lessons. I remember just about all of them, and their connections form a beautiful matrix upon which hangs the curtain of reality, Maya. I have found that if you don’t recognize the curtain, you can’t look behind it. There is something about having widely disparate bits of information randomly connecting in your mind that either gives you innovative ideas or drives you insane. The trick is recognizing which has taken place. I try to keep an open mind on the subject, it is an exceptionally tight rope.

 

 

Society demands binary responses, so my way of thinking often frustrates others. My ability to determine which ideas are “good” and which are “bad” gets confused as the definitions of good and bad take on a life of their own. I consider ideas that some people would not, either because the idea had not occurred or they immediately dismissed it. I am starting to question why I don’t immediately dismiss ideas, and am only mildly concerned I have found no reasons to do so.

There is a good deal of waviness in my thinking of late, as long as I stay out of trouble I can believe I am still making rational decisions, but I see it in my writing, this article in particular, but also several that I wrote following the TBI.

 

 

 

 

I’m Batman

A few weeks ago, a friend brought up a program he had watched which stated you can tell everything you need to know about a person by their favorite super heroes. Yes, middle aged folks still have favorite super heroes. My favorite is Batman. To me, Batman is the epitome of duality. Bruce Wayne by day, Batman by night, both working towards the same goals.

 

Duality is central to my life. Sometimes I display it on purpose, other times it just occurs naturally. I have an androgynous personality, some tests identify me as male, others as female; a recent survey actually determined I was “undifferentiated – androgynous.” I was born and spent formative years in Texas, then moved to California, arriving in the bay area just in time for the Summer of Love. The cultures could not have been more different, I love them both. I was a peaceful little flower child who enlisted in the Air Force because I believed working in the Intelligence community would save lives. I embraced the duality, it works for me, most of my friends thought I had lost myself.

Following the superheroes conversation, along came Armed Forces Day, and in my group of Full Metal Jacket fans came the comments of millennials who failed to grasp the meaning of the film. Being millennials, they felt the need to lash out at other members, even the group itself, for failing to recognize what the film (made more than a decade before they were born about events from two decades prior to that) was about. It was about duality, children forced into the role of warrior. It was not necessarily an anti-war film, it was a war film, accurate in the effects of this duality on a range of personalities. In fact, the film resulted in increased enlistment. Being able to see more than one point of view is an advantage to those of us who embrace duality. Prior to the making of the film, near to the time reflected as I faced the possibility of conscription, I had a poster with a comment repeated in the film; “Join the Army, travel to exotic distant lands, meet exciting and unusual people…and kill them.”

A dark sense of humor is essential to dualism. The alternative is insanity. The rise of political correctness signaled the death of humor, dark humor is always the first target. I believe this speaks to almost all of the troubles of society, I had always heard that laughter is the best medicine, but cackling at the perceived weakness of others is not laughter. The dual mind sees absurdity standing hand in hand with necessity, laughter is the only sane response.

 

My bat, man 

 

The following week, I once again faced my inner bat. Clinging to a conduit in the hallway was a small (5 cm) red bat. I considered leaving it there, with the possibility he would never be noticed. Then I realized that when he woke up, he would have no way to escape, so I went back to capture him. Sam came out to watch, thinking I would need help mounting the step ladder to get close. My only caution to her was “I need you to stand here (2 meters away) and if he flies away just don’t freak out.” I have always been startled by people who are afraid of small animals, and if by chance she started screaming it would have drawn attention to the presence of the bat, which no doubt would have led to its demise. Everything went smoothly, the bat objected vocally to being moved but crawled into the coffee can I placed underneath it, I walked out to our balcony and released him. I think Sam was amazed that the little guy had such large wings, easily a 30cm wingspan. He stretched and glided into the woods.

At one time I was “Batman” for a group of communities outside Philadelphia, an Animal Control Officer, part “dog catcher” and part “Doctor Doolittle.” I would speak gently to animals and put them at ease, sometimes to capture them, sometimes to kill them. My acceptance of the duality of the position made it a positive experience. I earned the respect of every other member of the police department, not by being a tough guy, but by fulfilling my lifetime occupation of problem solver. Nothing was impossible, nothing required violence.

Most folks I meet cannot discern who I am, where I am from, what my motivations are. Pity, all they need to do is ask, I am the proverbial open book. Far too many people expect hidden agendas and deception, an honest and forthright person can hide in plain sight. Over the years I have never hidden my religious beliefs, but I have never insulted other religions, so most people think I share their beliefs. The other day Sam and I were on the balcony discussing the events of the year, and she mentioned how incredible it was I had found Dr. Wackym, who performed surgery on my inner ear. It was an indirect path, which allowed him time to arrive at the hospital where my neurosurgeon practices, who I asked for a referral just after he had arrived. Had I asked a month earlier he would not have been there, a month later and the waiting list would have been several months. Events in my life often work out that way, timing and connections. Sam, born Jewish and now a self described Hedge Witch, asked why I am so “lucky.” I told her. “Because my heart belongs to Jesus.” We don’t discuss religion often, she usually treats all religions with some level of disdain, I remain simple, direct, and devout.

As I welcome the return of my personality, clues to who I am come in waves, as these Batman/Duality clues have come. I am of the impression I was a gentle person, and I will be more so in the future. But I am still a warrior.

Though his mind is not for rent
Don’t put him down as arrogant
His reserve a quiet defense
Riding out the day’s events

The tide is turning

One of the initial “problems” following my TBI was separating symptoms. It seems odd to me, although many things seem odd to me, that my doctors appeared to be dodging responsibility, blaming various symptoms as resulting from a condition in which they did not specialize. “Oh you’ll need to see a (insert specialty) about that” was a shared mantra; was it the MS, or the TBI, or maybe something else? As I zeroed in on the diagnosis of SCDS, I found another area of overlapping symptoms. As I heal from that surgery, I find many of my TBI/MS symptoms relieved at least in part. Much of the brain fog has lifted, I am able to focus and organize thoughts better. My neuropsychologist discharged me from therapy the other day, satisfied that although my recovery is not complete, I have the necessary tools and coping skills to move forward on my own, I am capable of self evaluation.

As I considered the topic I will be writing about this time, it occurred to me that this may turn out more in the style of some of my earlier writing, a variety of events tied by synchronicity. It may end up appearing as the ramblings of a damaged brain, or it may be clear enough to communicate a hidden reality.

I want to start with the “March for Science” held this year on 22 April, at various sites around the globe. I wrote about the march previously, it had appeared to have lost a true science base, appealing to populists who talk about science without understanding it. Nonetheless, it appears some scientists did not care they were being represented by a steampunk contingent and a celebrity with a bachelors degree in engineering, or perhaps they were reacting to the farcical world in which anybody can call themselves a scientist. A group (thirty thousand) of scientists spoke out about global warming. They stated global warming is a hoax. A non-scientist friend disagreed, and presented the following graph.

 

Misrepresentation of CO2 levels

 

As someone with the dignity and respect for scientists not to call myself a scientist, I point out the features of this graph. The graph is properly indexed, with the first eight hundred thousand years of data identified as coming from ice cores. The last sixty years of data were drawn from another source, an observatory atop a volcano. The graph indicates a series of cycles, each roughly one hundred thousand years, in which the level of CO2 rises and falls. At the point the ice core samples revealed the latest peak, the data source changes to Mauna Loa observatory, which indicate higher levels of CO2 than had ever been recorded in an ice core.

There is no indication of the data from Muana Loa previously (largely because the data was not being collected), we have no idea how the measurements made there compare to samples from ice cores. All we know is in the last sixty years the levels from the Muana Loa data have been exponentially higher than any ice core sample.

We also do not know how this might suggest global warming, as actual temperature data from the last twenty years have shown steady  global temperatures. While there is a debate as to whether CO2 is a warming or cooling effect on the globe, the cyclic patterns which took place for six hundred thousand years before there was a species identified as remotely human would indicate humans had nothing to do with those CO2 levels. As those levels in Mauna Loa’s data peaked over the last one third of their data, actual temperatures have remained stable. But it is a shocking graph, until you read it.

When I was twenty, I drove an ice cream truck, for a company called Tropical Ice Cream. In one of the neighborhoods in my territory lived a man who owned his own ice cream truck, and was not a friendly competitor. One day a little boy was among the crowd at the window, and he said “Tropical Ice Cream is bad, they gave me wrong change.” Not recognizing the child, I asked him why he said that. “Bill (the other ice cream truck driver) told me.” Some folks just repeat what they have heard, without considering the facts. I’m sure the AGW fanatics will continue to argue about science with actual scientists, after all, they heard it from Bill Nye the science guy.

Another science based theme which has been pushed since the March for Science is the anti-vaccination cult. It took the British medical journal, The Lancet, nearly twelve years to retract Dr. Andrew Wakefield’s 1998 paper suggesting a link between childhood vaccines and autism, as “utterly false.” His license to practice was revoked six months later. But the anti-vaccination crowd will hear nothing of it, continuing to insist on various reasons vaccines must cause autism without any data to back their claims.

This attack on science is more direct. Rather than falsely claiming to be backed by science, the anti-vaccination crowd contends the scientists who have failed to find any data connecting vaccines and autism are corrupt, paid off by pharmaceutical companies. When it comes to anything even resembling facts in the matter, they are misunderstood or misconstrued. Nonetheless, the anti-vaccination front was represented at the March for Science. Of the many reasons I did not participate in the march, this hypocrisy is the epitome.

Science is designed to be challenged. It is designed to be challenged by other scientists, not celebrities and laymen. It will always be misconstrued or denied for political reasons, it took the Vatican three hundred and fifty years to apologize to Galileo. This year, after an election that highlighted false news, a populist March actually revealed truths; not from the lips of the marchers, but from the scientists to whom the marchers claimed the desire to provide a voice. Many of the marchers are like that little boy next to the ice cream truck, repeating what they heard. They tend to passionately defend the beliefs they have been told they hold, but the scientists are standing up, and their response has been “That is not what we said, that is not science.”

The tide is turning. It may require another three hundred and fifty years, but eventually science will be respected again.

Ten days out

This is me on 12 April 2017, two days after surgery, when my compression bandage was removed.

12 April 2017, bandage removed

It looks severe, and I guess it is, but it wasn’t painful. I’m told I received IV steroids during the procedure, which were supposed to make me feel better. My experiences with IV steroids in the past are radically different, they literally sucked the life out of me when I received them for multiple sclerosis, but I did indeed feel better when I left the hospital this time.

I felt too good in fact. I am supposed to limit myself, some limitations are obvious such as avoiding loud noise (no concerts for two months); some are less obvious, aimed at reducing cranial pressure. I can’t bend over to the point my head is below my heart, I can’t lift more than three kilos, I’m supposed to sleep at a 45 degree angle. I took a lot of scolding to settle myself down.

My symptoms are gone, no bone conduction sounds, no autophony, no pressure in my ear. I’m also less aware of my cognitive deficits, which I knew was a possibility but intend to withhold judgement for a month or two.  I do suddenly have tinnitus (out of curiosity I checked the frequency, ~3000 hertz), but that is an expected post surgery symptom which should resolve itself within a few weeks. My balance is a bit worse, so I’m using a wheelchair for the time being. It is fun, but a bit tiring. I can turn and spin as if I’ve been doing it forever, which should be good news; no dizziness or motion sickness. It has pointed out my only post surgery pain, the point on my left hand in which a catheter was inserted to measure blood pressure. The other catheter, made famous by my friend Barry Parham in his book “Why I Hate Straws,” was just a weird sensation, and I had to eat through straws the first two days.

As days go by there are differences. Not always pleasant but there is no indication they are permanent. The hearing is returning to my right ear incrementally. At first, higher tones came through as if they were transmitted by kazoo, scratchy and fuzzy like the teacher character in Charlie Brown. Today they sound more like whistles. I yawned for the first time about four days post surgery, which was a good sign, I could open my mouth fully, and I was tired. I’ve been sleeping a great deal, probably more than after the brain injury, but back then I couldn’t move much so perhaps I was resting more then. Opening my mouth meant I could try more foods, we found a new Mexican place one night that had wonderful food and great margaritas, ranging up to thirty two ounces. I ordered a smaller one but asked the waitress if I could see the thirty two ounce glass, it was a small fishbowl. I’ll have to visit again when I am fully recovered, they carry my favorite tequila.

We’ve been discussing the question, “Was it brain surgery or ear surgery?” in my SCDS support group. A little of both. The brain needs to be moved out of the way, so even though an otolaryngologist does the diagnosis and sometimes the ear part of the surgery, a neurosurgeon must be part of the team to handle the brain; or in my case, a neurotologist (with a T), which is a new specialty, who handles both parts. The condition of Superior Canal Dehiscence was only identified in 1995, it only affects about one percent of the population, and not everyone requires surgery, so it is rare to find a neurotologist, or even a neurosurgeon/otolaryngologist team, who can properly treat the condition. Some people I have spoken with went a dozen years or more seeking a diagnosis, as most otolaryngologists don’t recognize the condition. It took me four doctors, the second one made the diagnosis and referred me to a team I could not trust, so my fourth happened to be a neurotologist who had just transferred to my hospital from Portland. Perfect timing, his schedule is already filled. I saw him first on 15 March, already had the cat-scan which showed the hole, he said he had 10 April available for surgery so we did the audiograms and VEMP testing the next week. Other folks I have spoken with, searching years and finally getting a diagnosis, were depressed. The surgery is scary, I felt a bit of fear, but nothing was going to stand in the way of a solution.

There was more stress in the intervening weeks than I am accustomed to these days, my landlord lost all vestige of civility and kicked me out of the home where I have lived for four years, and the anesthesiology department demanded a full echo cardiogram a week before surgery because the EKG showed “minimal voltage LVH, may be within normal parameters,” which was difficult to schedule because in their request to my insurance they said “routine health examination” rather than “pre-surgical requirement.” We found a place to stay, moved, and laughed with the echocardiagram technician about healthy my heart is. Plus, just watching the echocardiogram was fascinating. The drain pipe in our new place broke about a week before surgerythe plumber came in while I was in the hospital. Even good news, like my father wanting to come out, caused a little stress because I knew I would be out of it most of the time he was here. At least he was able to see my oldest son while he was here.

My father as I regained consciousness

Sam did a wonderful job of preparation, stocking up on soups and broths and creating healthy food I could ingest through a straw, I was just able to eat solids too fast. She was able to have her father over the night I came home, so he met my father. She scolded me into slowing down, along with members of the SCDS group and some of my friends (special thanks to Vince Coviello, who put it bluntly, “Recovery is not supposed to be exciting. Just suck it up and listen to the Docs!”). Sam made sure the place we live is level, reducing the chance of falls, and has been of constant assistance. I’m going to need to do some exceptionally special things for her when I am fully recovered.

I am getting better. The overlap of symptoms with TBI and MS made me wonder what would change; I am pleased so far and have no doubts about future improvement.

 

Days go by

Days turn into years, sometimes it is hard to tell the difference.

1 April 1999. April Fools day, a perfect choice for a wedding date for two people who were each married twice before. If, as Oscar Wilde had said, “Marriage is the triumph of imagination over intelligence, second marriage is the triumph of hope over experience,” what are third marriages?

For Emma and I it was the triumph of passion over ego. There was not much we did not feel strongly about, for the most part we fell on the same sides of issues. There were a few things in which we found we held diametrically opposed viewpoints, but today, eighteen years and one brain injury later, I cannot recall anything to which we did not eventually find a peaceful resolution.

Our passions were intense. I recall meeting some friends at the winery a week before Emma and I met. I was in an unusually peaceful state, and Suzanne (there were five “Sues” at the winery, each addressed with a unique variant of the name) said “Blake must be with a new woman.” I smiled and shook my head “no.” I had no women in my life and was enjoying the freedom. I had just turned forty, and after a series of passionless relationships was happy to have nothing to complain about. She knew what I was looking for, Suzanne and I had talked about it so often she would drop into an imitation of John Lovitz as “Master Thespian” when she said “Passion!” The next week I took Emma on our first date, a Nouveau party at the winery. Suzanne saw us, and silently mouthed the word and thrust forth her hand. It was obvious from the moment Emma and I met.

Four months and two weeks later we married, another eleven years, three months and four days later I was holding Emma as she said “I can’t fight anymore” and stopped breathing. There was little I could do during those years other than to love her.

I truly did not believe I could continue without her. Depending on my state of cynicism I often believe I should not have tried. It has been six years and eight months since then; I remarried, divorced, and had a few relationships. My current girlfriend is similar to Emma in many ways, and radically different in many others. The passion is there. The ego is different, second generation American from Ukraine as opposed to Emma’s first generation American from Sicily, but they are both fierce.

This week, concluding with what would have been our eighteenth anniversary, I will be rebuilding Emma’s “shrine,” a glass case I prepared for her urn just after her death, which has been in a closet for the last six years. The spare bedroom at my new place will house both her shrine and her cat, Autumn. I was worried about keeping a cat in a “no pets” building, but there are provisions in the Fair Housing Act for therapy and support animals, and my doctors provided the required documentation. Autumn is all I have left of Emma, I suspect I will handle losing her much as I handled losing Emma.

As my memory has come into question, some memories seem stronger than ever. Weeks like this intensify Emma’s presence in my mind, although she is seldom distant from my heart. I picture her in her vision of heaven, with her mother and her first husband who she never stopped loving. My life has taken some strange turns of late, perhaps “stranger” would be more accurate; my life was never normal. I struggle to write, and recall that I started writing for the public for Emma. In the last year I have needed to redefine almost everything, Emma and Autumn have been my constants, my F if you will. After my injury Emma was heavily on my mind while little else was, as I prepare for cranial surgery reminders of her hospital experience surround me.

I don’t speak much now. Partially due to the effects of the SCD, partially due to my need to understand what everything, including my own thoughts, mean. Emma comes to me in the silence, and guides me towards light.

 

P3272402.JPG

Autumn, Therapy Cat

 

 

 

 

A new window

I may have mentioned having some hearing issues since the accident.

I have now visited four otolaryngologists, in an attempt to diagnose and correct the problem. Well, two to diagnose, then two more to find someone I trust to perform the surgical correction.

The first otolaryngologist gave me a hearing test, which returned results consistent with an aging punk rocker. My attempts to explain my experience was not adequate to pull his eyes away from my chart, even though he did conduct the one tell tale office exam that should have pointed him in the right direction. He offered to write a prescription for hearing aids, even when it was evident they would not correct the problem.

The problem, you see, is that I hear too much. There is a “fullness” in my right ear, much like the pressure you feel when changing altitude, except swallowing doesn’t clear it. I hear my heart beat in my right ear from the time I sit up in the morning. The shower hitting my spine is deafening. My voice has a bass resonance in my right ear. Sound builds, so in a short time all I hear is the resonance (autophony). These sounds are heard through bone conduction, which is why I hear them and you don’t. Normal people hear sounds conducted through air, and entering the ears.

The test the first otolaryngologist performed that should have pointed him in the right direction was placing a tuning fork on my skull, then holding it over my ear. I could not hear the tone in my right ear, but it was loud and clear when the fork was placed on my skull. Opposite results for the left ear. So he suggested a hearing aid, and I suggested a different doctor.

Doctor number two recognized the symptoms right away. He called it “a third window,” a reference to an extra opening in the Superior Canal of the vestibular system, which is attached to the cochlea. The medical name for the condition is Superior Canal Dehiscence, or Superior Semicircular Canal Dehiscence, Syndrome (SCDS or SSCDS). I’ve learned lots of new words, but I’m still not sure about the pronunciation of “dehiscence.” As you can see from the CT image below, and probably guessed from the explanation, corrective surgery takes place within the cranium. The canal is a bony structure adjacent to the temporal bone, on the “in” side. A hole is drilled for access.

 

The third window

The “third window”

 

Doctor number two could not perform the surgery, and referred me to a specialist at the University Hospital in Newark, NJ. This doctor did more tests and did a CT scan of my temporal bone. She definitively diagnosed the SCD, but was so disorganized and scattered I wouldn’t trust her to open a can of tuna, much less my cranium. I remembered my neuro surgeon from the accident, and contacted her. She referred me to doctor number four.

Doctor number four is Dr. P. Ashley Wackym. I have seen a few dozen doctors in the last year alone, he is the first to impress me. Alright, he has a lead initial, so there is a sense of kinship, and he dresses well, a nice suit and sharp shoes; but what blew me away is that I did not have to explain my symptoms, he asked me about each of them with familiarity. Another thing which gave me an odd comfort is that many of the symptoms of my TBI are also symptoms of SCD, in other words, correcting the SCD may assist with the issues I am working on with the TBI. Wouldn’t that be lovely?

From what I have read, SCDS is very rare. This may be because it was only identified in 1995 at Johns Hopkins. An estimated one percent of the population has the dehiscence, and many do not develop into the syndrome. Not every doctor knows it even exists. Severity varies, and in the big picture my case is not serious compared to patients who cannot stand because their balance is impaired beyond therapeutic correction. I just have so much annoyance with my hearing that I would be most comfortable as a hermit. I am frustrated because going to hear a band requires a day of rest before and after. I have considered putting a spike in my ear to relieve the pressure, but other than that my life is not in danger. When I was diagnosed with multiple sclerosis it was relatively rare, largely because diagnosis was so difficult. With the advent of better diagnostic tools, we hear about people with multiple sclerosis every day. I knew a woman diagnosed at the same time as I, who had been searching for fourteen years, trying to maintain a grip on her sanity. The stories I hear from other SCDS patients are much the same.

I look forward to the surgery for a variety of reasons. An end to the noise will be wonderful, and the experience should be fascinating. I will spend two days in the hospital and recover at home for six weeks, and I’ll probably have a scar on the side of my head which will alter my choices of hair styles. Maybe it won’t work, I could lose my hearing completely (which would not be terrible if the autophony goes away), it could simply not work, or any of the myriad of surgical complications could happen. Anything could happen with the surgery, without it one thing is certain, the noise will continue until I lose my sanity and find a window large enough to leap from.

 

2017

Happy New Year. I am much happier today than I was one year ago, waking in the hospital with what must have been a wonderful assortment of drugs. I do not recall pain in my elbow, but it was still a few days until I realized I no longer had an elbow. It must have hurt, previous experience suggests morphine would have eliminated pain without clouding my memory, although the brain injury should have clouded my memory.

Today, that rebuilt contraption functions better than any of the doctors and therapists expected, better than most of them thought possible, better than any of them were capable of doing themselves. That is one of my triumphs, something I am proud of even though I had little to do with it.

It appeared, to everyone, that an inordinate number of performers died in 2016. David Bowie died on the day I started writing again. It is difficult to remember, I can’t remember writing, but the article exists and is accurate and not horribly written. The brain injury was apparently not clouding my memory at that point. I could only have been typing with my left hand, I remember frustration with using the mouse left handed, and I remember the initial reports on the internet. I remember Sam being there, and saying to her “I think Bowie died.” This is how my memory works now, bits and pieces. From what I have been told, my brain may take another couple of years to heal, perhaps I will have rich, full memories again. They still exist for some moments of the past, not as many as before, but none in the past year.

They tell me I will continue to get better, and that progress will not be linear. My goal, which I believe I have achieved, is to accept this. I no longer judge myself against two years ago, I judge myself against two months ago. I don’t always see the improvements, but people around me do. As many reminders I receive that TBI is an “Invisible injury,” I like to believe what others see as improvements.

There have been some disappointments, but I am certain I am not the only one to have been disappointed. I like to think I have become accepting and tolerant, and in reality one cannot be tolerant unless they are aware of what they are tolerant of. The election cycle appears to have been far more divisive than previous elections. I have friends who stepped away from social media altogether, many of whom have stated “All my friends became monsters.” I have seen a failure of civility, related to but not a part of the election. The route to proving one’s point has somehow degraded to insulting the opponent’s intelligence. It hurts a bit when you’re recovering from TBI, but it has been a learning experience, both in illuminating the character of people who claim my opinions are due to my brain injury, sometimes in crude and derogatory terms; and in learning not to argue with people who have no interest in reality. I am trying to open my own mind, I do not have the energy to open others.

I have not been as irritable as it appears is common in people with brain injuries, I have become more frugal with the energy I am willing to expend. It is fascinating to discover how much energy it takes to do nothing, I find myself exhausted after completing one or two simple tasks in a day. I shy away from meanness and anger, so perhaps I am more sensitive to it. People rarely feel they are cruel, telling them so makes them angry, so I have had to simply avoid some dear friends and family. This should tell me something about my former self, I have yet to figure out what I have learned. In some cases I wonder why I ever put up with them in the past, in most cases I see my own failure in enlightening them.

I have done enough. That’s just me talking, I really have nothing to say in the matter, but I have no desires of conquest. I intend to spend some time volunteering at the Brain Injury rehabilitation center down the road, I recall an ability to communicate with the non-verbal. I haven’t expected a long future for some time, but I can do my best with the days that present themselves. Who knows? Maybe I will fulfill my genetic predisposition and go another forty years. Time will continue, and all of this will eventually be meaningless.

 

 

 

 

Man of mystery

From what I hear, I am improving rapidly. I don’t see the improvements themselves, but I see the results of the improvements. I have learned a good deal through this brain injury, one more counter intuitive duality of TBI.

I am more thoughtful, slowly forming opinions about everything. Being less sure of reality has benefits. I am not certain of my own history, so I am a man of mystery to myself. I have far more memories than should fit into a normal life, but most of them suggest my life was anything but normal. The ones I can verify are less concrete than the ones I cannot, so I lean toward believing all of them. My sense of caution tells me not to discuss a past I cannot verify, so for the most part I’m sticking with my cover story.

I know I am impaired, but impairment is relative. I would ever so much like to accept my present condition, there is no reason to believe I will be who I once was (whoever that may be), and frustration over my loss is allegedly  detrimental to progress. Of late my frustration has been over recognizing my disability. I am better than I was a few months ago, I may be better than the average person, but I am still not functioning as I once did, so people who expect that level of performance become frustrated with me, and in turn I become frustrated. I am the one with the brain injury, yet I am the one who is supposed to be understanding of others.

I received a letter from Social Security telling me I have been approved for Disability payments. Page two lists the amount of the past due payments, and the percentage that will be paid to my attorney. Page six states I have no past due benefits. I called the attorney for clarification, but they had not received the letter. I emailed a copy of the letter, and their response was “You have been approved for disability.” I knew that. No response to my question about past due benefits. But I’m the one with the brain injury. Apparently they finally received the letter, and I received a letter from the attorney, which included “I feel you should have received your past due benefits by now, if you have not, please contact the office.”  I contacted the office again, and was told I have been approved for disability payments and the letter from the attorney was a form letter. Thank you for keeping me in the loop. But I’m the one with the brain injury and all these wacky ideas about proper communication.

I feel compelled to meet new people, but my old habits of closing bars do not fit my current abilities. I can still drink more than the average American, but even sober I am uncomfortable driving in the dark. At Samantha’s suggestion, I have become involved in a couple of “Meetup” groups, and created a profile on OKCupid. A friend, who “tunes” dating profiles professionally asked if I was ready to date. I had not given it a thought, so I guess the fearlessness is returning, I may be the only person who values that return. I’m ready to be rejected again, and opening more of myself to attack. In one of my Meetup groups, “Beer Fridays,” I met a woman who does not drink beer. She wasn’t sure what the group was about. But I’m the one with the brain injury.

I have noticed a peculiar group developing. There is a small number of people who wish to overthrow the recent election. At first I thought they were Democrats, but I have friends who are Democrats, and these folks have little in common with polite society. A few of them have asked to be friends, which at first I found admirable. My heart remains open, I still enjoy intelligent discussion with those of opposing views. Apparently, I’m pretty gullible, they had no interest in conversation, only in someone to spew their hatred towards. Their aims seem to aligned with Daesh, the Intel specialist in me is a bit alarmed. I hope they learned, from my polite goodbyes, that grace is an admirable quality, but I strongly doubt it. This is one in which I can say “Yes, you do have a brain injury. Be careful, the world is not filled with nice people.”

Today, my Tecfidera, the medicine I take for Multiple Sclerosis, was delivered four days late, by United Parcel Service. My door is not easy to find, but that was not the problem as the driver left notes on my door. Right under the heavy knocker which he must have thought was ornamental, and across from the doorbell which eluded him. I’ve worked around UPS drivers in the past and know to require a signature on deliveries, their “loss” rate is phenomenal. I saw the truck pulling away, and went out to find another note. No contact information on the note, they really don’t want you to call. Sam found a way to contact them, and they sent him back; she went to the door when I saw the truck pulling in. He said to her “Well, if you’re going to have an attitude, I won’t deliver here anymore.” I cannot imagine why I was charged extra to have a driver come to my door and insult me, apparently that is the point of the notes, to avoid the driver. I know these drivers are under immense pressure, I saw one crack over a wrong address when I worked at the Police Station. This incident was inexcusable. I got a call from the local office wondering why I didn’t just go to their office and pick the package up. Apparently they only drive the trucks around as advertising. They said they would talk to the driver and get back to me. In the 90s I watched a driver walk through security at a UPS hub smoking a joint, the security guard just said “you’re not supposed to smoke in here.” You were not supposed to smoke in the entire multi building facility, and they allegedly had routine drug tests.  I will be specifying FedEx for future deliveries, and will lobby to drop UPS from the preferred carriers list, but I’m just an unreasonable crank. That guy with the brain injury.

Part of the difficulty in finding who I am is discovering what planet I am on. I have memories of a place where people strove to communicate with each other. It would be easy, and from what I have read from other TBI survivors quite common, to feel alienated. I am either an alien or severely confused about proper behavior, are these memories of a civil society false? When I was told that people with brain injuries often are irritable and cranky, I thought it was frustration about inabilities. Then I thought it was from frustration about the processes we have to go through, with a brain injury, to be accepted as having a disability. At this point, as I become increasingly irritable and cranky, I can see it is due to frustration about the inabilities of the world in general.

I have a brain injury, and am keenly aware of my impairments. I may even overcompensate in order to appear “normal.” The more I interact with people, the more I realize I’m trying too hard. “Normal” is nothing to be proud of. I am a stranger to this world, and rather happy to discover that fact. It is kind of cool being a Man of Mystery.

Running on Empty

I believe I have always been a gentleman, as well as a gentle man. That may be nearing an end. I am increasingly frustrated and irritable. I am not happy with the person I am becoming, but I see no way out, and I am looking hard.

I pictured it last night as a four engine aircraft running on three engines. Looks easy, but that is not how it was designed, that fourth engine had a purpose. The twin engines are fine with only two engines, there are plenty of single engine craft and helicopters. I should be happy with three engines, but I know I used to have four.

I attended a gathering last night, my big night out this week, and ran into someone I saw a few months ago. He remembered my name, we had met at a gathering of a related group which had been both of our first group forays. Of course I didn’t remember his name, and probably wouldn’t have without the injury. I was never good at names. After a while something happened which caused Sam to mention my brain injury, and he said “But you look okay.”

Yes, I look okay. Because what is wrong is something you cannot see. I falter, walk with a cane, am hard of hearing, can’t see very well, but those issues are common in people of my age. I have adapted. I smile, ask people to repeat what they have said or to speak more slowly, I have a beautiful cane, I connect abstract ideas on occasion, I dress well, I fit in. I can remember trivial events, which covers for the fact I forget what I am saying mid sentence. Writing does the same, you don’t stop every few words as you read this, you don’t know how much I struggle with each sentence.

A relative called the other night. I suspect he meant well, but there is enough of me left to feel critical of his aloofness. I can remember telling him about what I am doing, he acted as if he did not. He made some insulting comments, which I am sure he did not realize were insulting. When Emma was fighting cancer, another relative felt the need to casually insult the profession of restaurant server. When I reminded him that Emma had been a server most of her career, he doubled down, directly insulting my dying wife. Both of these people are related to me, not many of my close friends can believe it. I wanted to hang up, but I am too nice. I shook until I fell asleep, and slept poorly. The next morning when I could collect my thoughts I wrote him an email, explaining the pain he had caused. I knew better, nothing was going to change. He wrote back, I couldn’t bring myself to read his email. I asked Sam to read it, just to tell me if there were any questions to which I should respond. She said it wasn’t as bad as she thought it would be, but she hadn’t read my letter to him, so I let her read the email I had written. Her opinion changed, so I am glad I did not read his email. My words did not merit his response, which I had expected. This has nothing to do with my injury, it’s just a reminder of a disappointing relationship at time I need a more supportive one.

There are these kind of issues, the untangling of issues. I run into it with physicians, who try to separate my multiple sclerosis, traumatic brain injury, and advancing age rather than just treating the symptoms.  Insurance is even more frustrating, because it’s just a faceless voice on the telephone, giving their personal interpretation; if I call back I get another faceless voice with their own interpretation. Social Security Disability is scary, because from what I can gather it is a monolith, the unimpeachable opinion of one person determining my future, and that person has no medical training upon which to form this opinion. Personal interactions are the worst, everyone intends empathy, and I can finally understand the meaning of “You don’t know how I feel.” Depression is present, but I actually have brain damage. I can’t just think of things another way. I want to be gracious, but I don’t believe I can keep up the facade much longer. I don’t know how well I’ve kept it up so far, people have been falling away from me, no one has visited, I have received very little support from my fundraising attempts.

A few years ago, I visited Lieve’s brother in Belgium. She was never precise about his disability, but he was in his forties, living in an institution, wheelchair bound. He cannot speak, but he recognized me from a previous visit. We all had lunch in the day room, with the other patients. This was a residential care facility, there were no white coats, and most interactions were in Flemish. An hour or so in, I realized I could not tell the patients from the staff, and they probably felt the same of me. I was pleasant, attentive, but my English just sounded like gibberish, my Flemish was broken. I feel the same now, my adaptations and eloquence make me appear to be “normal,” I carry no physical scars, I look okay, but I am not.

I am scared. Not as much by my crumbling finances as my crumbling brain. I may end up homeless, if things continue the way they are certainly by this time next year, perhaps much sooner. I had once thought losing one’s mind would be peaceful, a gentle descent into forgetfulness. Sad that one of the last things I am to learn is the solitude of a broken mind.

 

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I always thought of myself as a warrior. I’m losing this battle.

 

 

 

 

 

Bits and pieces

You have heard the phrase, “One step forward, two steps back.” It is easy to picture in a two dimensional sense, but brain injury develops in a four dimensional matrix. My memory shows a glimpse of the past and I can’t process information as well, my balance improves but I can’t hear. My processing improves but my eyes can’t focus. Last week on the way to rehab, I heard a story on the radio about Pennsylvania, and my old drivers license number popped into my head. 20 329 373. Not many people know their current drivers license number, I haven’t driven in Pennsylvania since 1999. Later, at rehab, I scored lower in processing speed and attention than previously. I wrote a paragraph for my speech therapist in which I did not cover the issues of the assignment, but she went out of her way to say how well written it was. One step forward, one step down, one step sideways.

Today, 28 October 2016, would be Emma’s sixtieth birthday. I know what we went through together, I’ve read her original blog and the book I wrote, I can remember little things about her, the way she pursed her lips when she was excited, the way she quit smoking in one second, the way she let go of everything except my hand. I know but do not remember that I cried most of January over her, suddenly lost in loss again.

2004 at the Alamo.

2004 at the Alamo.

I can see her at sixty, having survived cancer, strong and defiant. I like to think she wouldn’t dye her hair, the grey looked rather nice on her, she would have bounced back from the damage of cancer. I try to imagine I will bounce back from this injury, what life would be like together again. I recognized this morning that in April this year I went to Record Store Day, standing in the cold for hours to get the release of a picture disc of David Bowie’s “Wild is the Wind,” her favorite Bowie song. Sam tells me I was still fairly oblivious back then, although I was living pretty much independently and had driven to New Providence to do some yard work with my shattered arm for a deceased friend’s mother. This was when I didn’t know how badly my brain was injured, I was worse because I felt better than I actually was.

 

 

I have little emotion of late, but I woke in the middle of the night thinking of Emma, and realized I was crying. The tears running down the side of my face gave it away.

Regaining my emotions may be a double edged sword, I so want to feel, but I know it will be beyond control. I see other people in my rehab who are irritable and angry, which I hear is the norm for people with brain injuries. I see all the anger in the world today and I want no part of it. I know I need to be upset with my financial situation, at very least I am too broke now to make irresponsible impulse purchases. I am making attempts to raise some money by begging, Emma would never approve. I don’t either, but there are no other options.

I had a doctor’s appointment this week, I know because there was a message on my answering machine. I assumed it would be on my calendar so I erased the message. It wasn’t on my calendar. The name on the caller ID was a neurologist, and I have no memory of making an appointment with a different neurologist, I know I made an appointment with a gastroenterologist. I have no idea which gastroenterologist I made an appointment with, and there is nothing on my calendar, so I guess I’ll start from scratch. Hard to explain how I feel on missing the colonoscopy I’ve been putting off for eight years, I am disappointed because I finally got around to making an appointment, but on the other hand, I am not excited about a colonoscopy in any way.

Bits and pieces flow in and out. One exercise I had in cognitive therapy was tracking random numbers floating on a screen and add them together. Life mirrors therapy, I could handle five numbers, and sums less than forty. After that it was more than I could handle.

I recall when I was a technician, my manager could not fathom how I managed to travel from point to point in such short time, once describing my velocity as “low Earth orbit.” I loved driving, the highway like a river, the cars flotsam and jetsam. I knew what everyone was going to do, I could tell the blue car three cars ahead on the right was going to make a left turn at the signal ahead, so I would change lanes not to be behind the people slamming on their brakes to avoid him. The red car three back to the left was going to accelerate and pull into my lane, so I would speed up a touch and let him fall in behind me. I floated down the road, rarely touching the brakes. Today I am able to recognize how many judgements were being made, quickly and seamlessly. I recognize it because I am unable to accomplish it, I know why I can’t, there is no compensation for my present state, and probably never will be. I’ll never be forty years old again either.

Much of my therapy is not what most people consider therapy. We’re not trying to return to where I was, we’re trying to compensate as much as possible, and to accept who I am. There is some mourning for who I was, but if my focus will be on surviving, which Emma inspired in every way, I have to accept who I am today.

 

 

 

The Invisible Me

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I try to see the injury as a semi-colon

 

Brain injuries are called an invisible disease. You don’t see the effects of brain injury, and people being the kind beings they are tend to ignore minor frailties. We think if you have a brain injury you should be a drooling idiot, unable to dress yourself, so we don’t see the damage when someone is struggling with everything they have to appear “normal.” Brain Injury survivors don’t make it any easier, putting on a brave face, compensating for our deficits; we are accomplices in hiding brain injury. We are trying to keep going.

My injury hid from me. I didn’t see it but my personality changed a number of times, and probably still is changing. I realize my injury is invisible to others, which makes applying for disability, or asking for help, all the more difficult.

I have never been much for clothing, a few years ago a girlfriend commented about how I disrobed when I came home. As I remember, she was naked at the time; I have put up with a number of hypocritical girlfriends over the last few years. When I got out of the hospital, I was not comfortable naked and wore pajamas for the first time since childhood. It felt normal, and although I have returned to sleeping nude, I still cover myself when walking around the apartment. I’m sure my flatmate appreciates that. Possibly related, I have no desire to be intimate, I don’t even kiss Sam very often. It took a while for me to notice, it appears to be endocrine related, as I was once exceptionally passionate.

I am fairly certain I could speak a couple of languages. Not always fluently, when I visited my father in Mexico with my second wife, my Spanish was adequate, but I have never taken a lesson. Three years of French and I could follow and participate in a conversation. A short course in Russian and it was me, not the linguists, who published a guide to pronouncing Russian place names for my wing in the Air Force. A Rosetta Stone course and I could struggle through Flemish with my ex-wife’s family in Belgium. And of course I was eloquent and precise in English. Today, I don’t call my mother on the phone because I cannot maintain a conversation. I am uncomfortable meeting strangers because my speech is broken. I have moments when I speak clearly, but I never know how long they will last. I still fall into Flemish occasionally (and uncontrollably, subconsciously), but the others are fragments, words but not sentences. At one point I could not complete a vision test because I did not know what to call the letters. I was more comfortable using the phonetic alphabet, and then I slipped back into (and out of) the more common American English letters.

At one time I would wake up and watch the news (I can’t bear to watch now, with all the election hatred). Something would spark and I would write an article, polish it, provide links and images, and publish that day. My schedule has not allowed that since I went back to work in 2014, but I was still able to put a thousand eloquent words together on demand. Since the accident several minor issues have prevented prolific writing, at first I couldn’t move my arm and hand, I was typing with one finger. Then as my arm healed, my brain faded, my drives, the self-motivation which causes me to write, disappeared. This article has taken a week, and I’m pushing hard because the exercise is good therapy.

I never realized how exhausting simple thinking can be. I can recall multitasking quite easily, working in the field as a technician I kept two dozen unique machines in my head, and although I was unusual in remembering an incredible number of part numbers (I had figured out the pattern so they made sense, like another language), other technicians handled as many machines. Today, I do puzzles that would bore my grandchildren and I get a headache. At today’s conference of the Brain Injury Alliance I had to leave early, and won’t be moving for the remainder of the day. I cannot commit myself to more than one task at a time, “multi-tasking” means getting both the garbage and the recycling out on the same day, and having leftovers for dinner.

Some things are intermittent. I had good practice dealing with intermediate afflictions over the last thirty years of Multiple Sclerosis. I can “pass” as unimpaired, I don’t often fall to the ground, and typically keep up my sense of humor. My life is mostly free of stress, so I can prepare myself for outings. I will be attending a Halloween party at the end of the month, and I am already panicking. I am thinking the best idea is to tell people I have had too much to drink, and not touch a drop.

One of the intermittent things is my memory. I can’t remember if Biogen is delivering my Tecfidera next week or if I missed it last week, but I can remember a campaign ad for Lyndon Johnson which only aired once in 1964. Okay, that ad is infamous but I remember seeing it air, as opposed to seeing it discussed. There are quite a few things in my life that now seem incredible, some I can verify, others I cannot. Were it not for the ones I can verify, I would simply discount everything; now I question everything. This results in a good deal of confusion and hesitancy, and requires an enormous amount of energy. I am tired constantly, but a spark still exists which tells me to keep going, to push through. Bad spark, I drive myself into the ground when I should just take a break and rejuvenate. One thing a speaker at the conference said struck me, she had been a police officer and was able to talk about what she was wearing at the time of her injury; like me she has no memory of the days surrounding the injury. She rebuilt the scene from reports and protocol, it was a cold day so she would have been wearing certain items, her uniform consisted of certain items, she has read the reports of the incident. You might think she remembers it to hear her tell the story, but I recognized the crutches I use, “according to reports,” “I have been told,” “standard protocol required.”

I am getting better at admitting “I don’t remember,” I can recall, but the explanation takes too long; kind of like when someone says “how are you?” and you say “Okay” even when you are not. The stories are there but I have no ties to them, the number of incredible stories causes me to hesitate; is it a memory or hallucination?

So I keep going. In the words of Robert Frost, “In three words I can sum up everything I’ve learned about life; it goes on.” Just because my injury is invisible does not mean I need to be.

 

 

 

 

 

Who am I now?

 

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There are things I do remember, among them a love of quantum mechanics. Of late I have been running reality checks on life.

Of the things I know, my name has always been a problem. My Birth Certificate says Kenneth Blake Cash. but my parents never mentioned Kenneth was my name until after that first day in Kindergarten where the teacher called me by the “wrong” name. Turns out they wanted to name me James but didn’t want people to call me Jimmy, so they named me Kenneth and called me Blake. It made just as much sense then as it does now, so I am not questioning my ability to process that information. I have had identity issues all my life, so I should be well equipped to handle them now. I just can’t find my equipment.

I hear on a routine basis that I need to accept who I am now. Usually unspoken is “because you are not who you were,” sometimes with lovely imagery about being a new person every sunrise. Yeah, right. This is not a glorious dawn.

I am not precisely starting afresh every day, but more so than before, as far as I can tell. My short term memory is failing, I compensate by taking notes (when possible) and telling people I have difficulty  processing information due to a brain injury. This is supposed to be a good sign, I am accepting what I am not “allowed” to acknowledge. I am not supposed to say I am damaged, or that the efforts I make are unsatisfactory.  See, in what is left of my mind, being unhappy with a failure is a positive move towards self improvement, but I am not supposed to damage my own self-esteem. Hard to have self-esteem when you don’t have a self.

Who I am is based on what I recall about how I got here. Even the things I remember I don’t feel a part of, making it difficult to distinguish between memory and dreams. Last week I had a strong memory of flying a C-130, I could feel the trembling and see the ground falling away. Trouble is, I have no memory of attending flight school, and the possibility I actually piloted a C-130 is remote. This scared me deeply. How many of the unlikely things in my past did not happen? My “sense of self” is exceptionally weak.

As far as I know, I do not suffer hallucinations. I am considering verifying the presence of new people, and if I am ever aware a hallucination has taken place I will.

Most of my “feelings” are vacant, I have little emotion, and I am not chasing their return. I see enough people adamant about untruths and fierce about mistaken beliefs centered around the election, I don’t want that to be my life. Some of my facilities are returning, although their return can be fleeting; I am told they are an indication of “higher executive functions.” I have a sense of sarcasm, and I’m fairly certain that I can be humorous and people are not laughing at me (today). I am aware that testosterone is missing, and I am scheduled to see an endocrinologist to measure pituitary function, these would seem to be affecting my drive and will. Frustration occurs when I know I should accomplish something and just can not begin the project. I also have read that my serotonin levels should be addressed, but I doubt my own medical skills enough to leave the dosaging of SSRIs to professionals. Again, I know (or think I know) enough to see my primary physician is less than skilled in the administration of SSRIs, so for this and other reasons I am seeking out a psychiatrist.

I know I am not who I was, but I am not certain exactly who I was. This appears to be the perfect opportunity to redefine myself, but I know I will have no past. Seems like it was interesting, I hate to let it go.

I have read through my articles since the accident, I can identify a spirit believing it is healing. That spirit no longer exists, which in a way is odd; from what I am told, recognizing my deficits is an improvement over not recognizing them. So I’m better because I know I’m worse. You should not be surprised at my confusion. Expect incredulous questions about the election.

My desire at this point is to record these facets of brain injury, so that one day I will be able to collect and edit them into a book. What I am most aware of is I may not feel this way in the future. I certainly don’t feel as I did nine, six, or even three months ago. Writing is what I can do, and apparently I am a fairly good writer, although it does not feel that way now. I know I was married to a woman named Emma, and I blogged through her fight with pancreatic cancer, and I turned that into a book. I know this because I looked it up. It is nice having things written down.

My ability to see the future is on par with my ability to see the past, I have no way of knowing this will ever turn into a book, it is a dream, and I am told it is useful to have goals. One goal is to financially survive until Social Security approves my disability claim, I’ve been selling what assets I can on Ebay, and I have started a charity fundraising web page on “YouCaring.”  Please consider donating a few dollars, the theory is it all adds up.

For now, I am Blake to my friends, Kenneth to my ever growing army of doctors, K. Blake Cash to my readers, and KB to my social media contacts and grandson (he says “kib”). The man behind the name is developing, trying to establish an identity with a foggy history. I think he will be KB, my grandfathers were known by their initials, I am now the age they were when they met Blake, now Blake can meet KB.

The construction of KB will be on a foundation of those memories he can verify, woven with the beliefs which resonate with his presence. I can remember every printer I ever touched and long to take apart new ones (the psychiatrist has a Toshiba, cognitive therapist a Konica Minolta, Neurologist Kyocera Mita). I recall an astounding array of songs. I have a couple of bass guitars but I can’t get my fingers to where they are trying to go. I know it is acceptable to end a sentence with a preposition. I have a drum, and I know how to use it.

In just over a month I will have my 58th birthday, I don’t know who will be there.

 

 

 

 

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Vocabulary

Like that first step, there are first words. Another stumbling block.

You have probably been in the situation in which you try to explain something to someone who, for whatever reason, simply does not understand what you are saying. Communication is possible because we share a definition of the words we use. Telling someone something is beautiful is meaningless if by “Beautiful” you mean “green,” unless they also define “beautiful” as “green.”

I find that certain words have different meanings to me now than they used to. “Remember” is one of them. My memory is a collection of moments. I have always known my approach is different from that of other people, and from what I hear in therapy my “problem” is that my memory is now “normal.”

When I was teaching aircraft identification in the Air Force, I taught my form of memory. An aircraft is not just a list of features, it is an object. If you remember the object you can mentally walk around it and identify the features. This just seemed obvious to me. I have retained memories of childhood because they were events, one in particular, a motorcycle when I was four years old, moving from Corsicana Texas to Dallas. A young man had come over to say goodbye and was giving people rides on his motorcycle. It was a cold day, I can smell the exhaust and hear the engine. I have several similar memories from Corsicana, a toy, a party, a girl (wouldn’t you know, even at four).

Now my memories are mere recollections, I am aware something happened, but I have no sense of participating. I have the script, but not the experience. The clearest example is painting my bedroom last February. I know the room has been painted. I know I painted it. I know Sam and I went to Home Depot to buy the supplies. But I have no sense of actually doing any of these things, no memory of smelling the paint or holding the brush. I am aware that at the time my arm was so injured I could not move it, so I must have painted left handed. But no memory of left handed painting. No visions of paint covering the wall or dripping on the floor. I can imagine my personality telling Sam she wasn’t doing it right and taking over as she has told me I did, but no picture of those things happening.

The fog is expanding, more events are becoming lists in my mind. I know we went to the cinema to see the latest Star Wars film, Sam has said I was adamant from the time I was released from the hospital that I would see the film. I have been to that particular theatre many times. But I have no memory of going to the theatre or the film itself. I have fragments, I know the film was essentially episode IV recast, but I can’t recall any dialogue or tell you if we had popcorn. A strange twist, I was reminded of a blog entry from February (which I don’t remember writing) in which I mentioned seeing the film. At that time I could remember the other films in the saga, yesterday I watched episode VI and did not remember the film. I know there is an episode VI and that I watched it with Emma, but the scenes and dialogue are foreign to me. I do remember her distaste for science fiction in general and certain elements of the film in particular, she had been annoyed by the phrase “younglings,” hearing it brought back the script, but not the experience.

Other redefined words may exist, but I don’t know which words they are. I had a great deal of trouble explaining to the ophthalmologist what perceptions were missing, it was as if we were speaking different languages. This event I remember, so the memory issue is fragmented, and in fact we were speaking different languages, he was speaking ophthalmologist, looking for things manifested by different tests, I was speaking English, explaining things not revealed by the tests.  I had a similar issue with the otolaryngologist who is supposed to uncover the reason for my hearing loss. He is looking for an inability to hear measured tones at precise frequencies and decibels. I am experiencing interference, as if my ear was blocked. Most sounds come through with the density of bone induction.

The inability to communicate has caused a loss of confidence. I am not as sure of my thoughts, ideas, and judgements. I am not sure if I am communicating with myself in my internal exchanges. When I express my thoughts, what are those thoughts based upon? I have had a couple of conversations about morality, and I realize I am ill equipped to argue my point of view. Part of this is not my thought process, there appears to be a sector that believes the universe is defined by their personal standards, even the words “truth” and “moral” have a single meaning, the meaning they have assigned. Debate is reduced to disparagement, and thus from an educational standpoint, useless.

Part, if not all, of my cognitive therapy is designed to teach me to accept who I am today. I recognize that. Hoping to be who I was last year is as futile as hoping to be the person I was thirty years ago. I know that each day we are new, a fresh set of twenty four hours of experiences build us into altered beings. The accident was merely a new experience, a major, life-changing experience, but life is changed every moment. I have been aging since birth, this was just a rapid acceleration of the process. I never wanted to be normal before, now it is a goal.

normal

 

 

The war to end all wars

One hundred and two years ago, in July of 1914, the first tendrils of the flame which would become known as The War to End All Wars were sprouting. It was not an accurate name, later it was referred to as the first World War, even before we started numbering them, because it was recognized the world was at war. About 4600 years earlier, the first recorded war, the Battle of Ur, involved the world of the time. There is little doubt there were wars before that, the desire to write was never as strong as the desire to kill.

Humans have always been at war with each other, there have been more than one hundred major conflicts since the War to End All Wars. It can be difficult to tell when one ends and another begins, the “first World War” began as a conflict between Serbia and Croatia, which continues today despite numerous “peace treaties.” The latest spark being when the cases each had against the other for genocide were dismissed in February 2015. The Prussian military analyst Carl Von Clausewitz (1780-1831), in his book On War, calls war “a continuation of politics carried on by other means;” the Serbians and Croates always seem to find those means so something should be happening over there soon. And in Syria, The Ukraine, Afghanistan, Pakistan, The Democratic Republic of Congo, Sudan, Israel, Iraq, Nigeria, Libya, and The United States of America.

Yes, I am hearing the call here in the states. Credible calls which I shall not spread less I be accused of sedition. Hatred and mistrust is at an all time high in the states, look at a political candidate, the one who you won’t vote for, and realize that person’s supporters feel the same way as you. Their candidate has been unfairly vilified, the process was rigged against them, there are multiple conspiracies against them, and the other (your) candidate is the worst being to ever cobble together 46 chromosomes.

I am quite accustomed to hearing young people talk about revolution. I refrain from laughing out loud, they are often passionate, but direct action has no safe spaces.  When our forefathers signed the Declaration of Independence, they said “we mutually pledge to each other our Lives, our Fortunes and our sacred Honor.” They understood the meaning of their words, they had lives, fortunes, and honor to pledge. The rumblings I am hearing today come from such people.

Recent events have been disturbing. Using a variety of ruses, the Bill of Rights has been under attack. In California, a law criminalizing speaking against climate change failed to pass, but the Department of Justice is considering civil actions to bypass the first amendment. The second amendment is dying the death of a thousand infringements. The third amendment, prohibiting forced quartering of soldiers, is in question in a case arguing that forcing land owners to allow government designated endangered species habitat is a violation. The fourth amendment has been all but overruled by the NSA. The fifth and sixth amendments, guaranteeing due process and listing rules of evidence and testimony, have been bypassed not only with drone strikes enforcing the death penalty against uncharged American citizens, but also in calls to use “no fly lists,” secret documents compiled without evidence, as reasons to deny second amendment rights. The seventh amendment, guaranteeing a speedy trial by jury, has not applied to the inhabitants of Guantanamo Bay or victims of countless other renditions, both within the continental United States and elsewhere. The eighth amendment, protecting against cruel and unusual punishment, was saved by a filibuster, narrowly preventing drone strikes on American soil. They are currently used on foreign soil to avoid renditions, which can cause bad public relations; better to kill than imprison. The ninth and tenth amendments have simply been ignored, as the federal government created new rights, sometimes (as in the case of Same sex marriage) overruling the voice of the people who passed contradicting laws by referendum. The president has scoffed at separation of powers with his statements of “I have a phone and a pen,” essentially saying “I can do whatever I want, nah nah nah.” The corruption revealed in the FBI and DOJ deny our intrinsic faith in the rule of law, and in any power the Constitution might still hold. Rules are meaningless without enforcement.

The calls for rebellion have many sources, the tinder already glowing. The first war encompassing the world started with a botched assassination in Sarajevo, the American revolution was sparked by a tax on a breakfast beverage.

The horns are blowing with the winds of change.

 

 

 

Sexuality

I was involved in a conversation the other day about sexuality, this one focused on the term “Sapiosexual.”

 The definition of sapiosexual is “a person who finds intelligence to be the most sexually attractive characteristic of another person.” Let me say “A” definition rather than “The” definition, as definitions themselves were a large and contentious part of the conversation. I did learn a new term, “SJW” or Social Justice Warrior, which I will define as “pretentious self-involved wanker with no experience, who tells others how to navigate society. No social skills, justice skills, or warrior skills required.” Apparently, my definitions are whatever I want them to be,  your definitions are whatever you want them to be, and as long as one of us is offended (how could we possibly avoid that?) the other is a racist.

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Without offense to anyone who identifies as a pussy

Without offense intended to anyone who identifies as a pussy

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 This conversation took place within a group of people who pride themselves on being intelligent and open-minded. Afterward it occurred to me, “who does not take pride in themselves as being intelligent and open-minded?” After all, we live in a world in which seventy six percent of people surveyed believe they are above average. I have actually heard that statement defended, based on the idea we all have an above average number of limbs. Most people have four, but some people do not, making average slightly less than four. That’s not how this works.
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Several years back, I overheard a conversation on the train into work. Two young ladies were discussing language, “what language do you dream in?” and such. One said “I do mathematics in German. I don’t know why, it just works for me.” I shared the experience with a coworker, who asked what the young ladies looked like. I said I didn’t know, I had not turned around to look, I just found the conversation attractive. He said, “Yeah, brains are sexy.”
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 A number of slow realizations have explained the labels I use to describe my sexuality, I now recognize this as the point I identified as a sapiosexual. It had always been there, this is when I embraced it, about fifteen years ago. Other aspects of my sexuality have been more, or less, obvious; certainly to look at my last three relationships you might doubt my attraction to intelligence, which is what makes discussions such as this so difficult.
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 There are many definitions and measurements of intelligence. There are probably more definitions of sexy, but we usually don’t cringe when someone says “She’s sexy,” even when the person being described is as far from sexy (to us) as we can imagine. We tend to recognize the subjective nature of attraction. The conversation I was having seemed to focus on the oppressive, and yes the adjective “racist” was used, nature of being sapiosexual. As a sapiosexual I have never felt so oppressed. This might be because this group is otherwise very sexually open and accepting, they might even find the word “tolerant” negatively prejudicial. There was no delay or shortage of the abuse placed on sapiosexuals, with “pretentious” being the very mildest insult.
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 I’ve dealt with this all my life. I can get along with anybody, but once I am “outed” as being what is now referred to as “gifted,” everything changes. I maintained a B average through school, so the only scorn I received was from parents and teachers who would say “You’re not performing at your potential,” and “I know you can do better than this so I’m dropping your grade.” I saw it in my eldest son, who was routinely beaten up at school, because not only was he intelligent, he told everyone about it. Being a child of the sixties it was easy to deny accomplishment and gravitate towards an earthier, grittier existence (not that the two are mutually exclusive). I recognized what other sapiosexuals recognize, intelligence isn’t about a number on an IQ test, it has more to do with understanding and wisdom. Funny how you can be respected as “wise” without being labeled “intelligent.” I want to believe this is because deep down folks can recognize intelligence has many presentations, even when they don’t admit it out loud.
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 I will agree that many who claim to be sapiosexual are pretentious, either seeking someone to compensate for their shortcomings, or attempting to compensate by the claim. In the arena of sexual preferences this is often the case, but this conversation went much farther than attacking pretensions, which although uncommon is not unheard of in this group. Portions of the conversation actually attacked intelligence itself, some were careful enough to attack the measures of intelligence as oppressively used by European males. Perhaps my judgement is off since the TBI, but I had absolutely no trouble seeing intentional offense. As disgusted as I felt, there was a certain sense of fraternity, humans tend to have the same frailty of hypocrisy, the most sensitive can still be aggressively offensive.
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There are many attitudes I do not have but can sympathize with, but I will never sympathize with the hatred for those who are different. I understand it, I know it takes place, but I have no sympathy. The only words I can come up with to describe the attitude are negative, there is no compassionate way to speak of it. Oddly, the majority of hatred for those who are different appears to originate from those who accuse others of prejudices, of disliking those who are different. The same people who are so very diligent about properly labeling everyone tend to use labels to segregate and negatively discriminate. I would say they must not be very smart, and some of them are not, but some are, which makes them evil.
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Our world is not binary, black or white. Being attracted to intelligence does not make the lack of intelligence disgusting. If you were to believe such, any statement of preference would also be a statement of prejudice against whatever would be opposite.
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I think we are all intelligent enough to see that.

Memories

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I have no memory of the moment, just a vague impression of the day less than a week after I came home from the hospital, when I heard David Bowie had died. My memories are difficult to explain, I have always been able to put myself into the moment, all of my senses involved, as opposed to simply recalling a list of events, the script of the moment. This is why now I can say “I don’t remember that” while still knowing exactly what took place. If I can’t touch it, taste it and smell it I don’t call it “having a memory.”

My brain is alien territory, my neurosurgeon tells me I should make myself comfortable, I will be here for a while. Maybe not forever, but I am better equipped if I familiarize myself with the terrain. To that end I am learning how to express myself, and taking care to explain my words. I am not ready to share opinions, I lack confidence in my logic. Much as in the way I am careful when speaking about the drugs used to treat Multiple Sclerosis, they did not work for me, but they do work wonderfully for some people; don’t take the fact I don’t use them to mean they don’t work at all.

The gap in my memories has grown, and I’m told this may just be a temporary fluctuation. Presently I have no memories of December or January, and November and February are fuzzy. Important within that statement is the fact my first evening with Sam was Thanksgiving. I am thankful for our relationship, having been abused in my last few emotional relationships, an “open” relationship seemed safer, an opportunity for honesty and communication to take the place of the deception the previous relationships offered. That Sam turned out to be more loyal and caring than the women I have trusted in “committed” relationships the last few years is both amazing and spiritually rewarding (not to imply open relationships are not committed, her level of commitment just astounded me following my previous “committed” experiences). She literally saved my life, then she nurtured me back to self-sufficiency.  This is a list of events to me, I don’t possess memories of any of it. I intend to explore the entire relationship in another article. Less important is that apparently I painted the bedroom in January. Not a horrible job, especially considering I didn’t have the use of my right arm.

A different set of memories started this article, falling about me like, well like purple rain. Now I just need to place these thoughts orderly, to find some rhythm of the falling rain. I used to be pretty good at that, identifying the synchronicities of life.

A large number of iconic musicians have died this year, working down the scale a scary number of musicians have died. While just under two human beings die every second, those of us in the arts seem to have taken a disproportionate amount of losses this year. A week does not pass that at least one acquaintance leaves us, sometimes several (Lonnie Mack died the same day as Prince). Each has some impact, when numbness starts to set in another icon leaves the stage.

Music binds the artist to memory, so these losses have to me been parts of myself. Prince held one such space. Which brings me to the other aspect of memories I want to explain.

With only one previous exception, I don’t stop loving people when the relationship ends. I have been told I should adjust this aspect of my life, but I can find no reason to deny how I felt for a person. If they can’t get over it and need to deny it ever happened that is their problem, more than likely the inability to accept reality is the reason we’re no longer together. Knowing a few people, one of them my last wife, another the woman who insisted I divorce her, prefer to pretend they never knew me helps me understand them better. Getting both of those messages in the same week is a synchronicity worth examining.

After I separated from my first wife, I lived briefly with the most adorable young woman. Very young woman, just a freshman in college. The song “Raspberry Beret” was popular, and mirroring my own love of hats Kay started wearing a raspberry beret, occasionally singing a few lines from the song. I think she bought it in a second hand store, she had incredible attention to details. If only she hadn’t been so young. I moved on to a woman a few years older, but for over thirty years I have seen Kay’s smile (and if it’s a quiet day I spend more time with her) every time I hear the song. We have written to each other, she’s doing well and also has fond memories of our time together.

The first time I heard the phrase “purple rain” was in the song “Ventura Highway” by America. Just now I am flooded with the memory of listening to the song in a raging storm as I drove up the Seaward Avenue exit in Ventura back in 1978. This is what I think of as a memory, the sky is violet and I can feel the wetness from the poor seal of the convertible roof of the Spitfire. There’s a steakhouse on Harbor avenue and I can smell the smoke even through the rain. I am there, and I am here, all because a phrase connected a memory.

I am certain this should be frustrating, knowing how my brain can work yet having sections that don’t work. In many ways I wish I was frustrated, but anger rarely has positive results, and right now I am focused on positive results.

Everything is connected, this is easier to see when you recognize everything is just different expressions of the same thing. I have referred to this as the matrix which supports the fabric of Maya, and as I explore the concept I find we each thrive in a universe of our own choosing. I’m comfortable with the sometimes gritty reality, others find the softness of a custom made fantasy more appealing. There is no “right” or “wrong” approach, nothing intrinsically “better” about exploring reality. It just works for me.

Prince didn’t allow his music on YouTube, so I don’t have a video today. If you get the chance to hear it, Warren Zevon’s cover of Raspberry Beret is a fitting interpretation.

 

 

 

 

Frustration

It has come to my attention I should take a break.

During a cognitive evaluation last week I mentioned my frustration with the results of my tests on Lumosity. I am not showing improvement, in fact some areas are showing a decline, and my best scores are in percentiles below sixty. I used to routinely rate in percentiles of the upper nineties, my IQ is well into the “genius” range. My arm is healing, why isn’t my brain?

The therapist suggested I step away from immediate results such as Lumosity, my recovery will take at very least a year, and there is no guarantee I will ever have the abilities I had just a few months ago. Watching the progress at this point is bound to be frustrating, and frustration can be a stumbling block in the process of creating new neural paths. I’m hoping she will also be speaking to the folks who approve my disability payments, they seem to think I’ve been away long enough, I can dress and feed myself, I should be healed.

I am not healed. Although my writing has been sporadic, what used to take a few hours to put together now takes several days, and my latest attempt sits in my “drafts” file, less than half complete after a week. I am quite frustrated.

HST at a similar crossroad

HST at a similar crossroad

My mind is filled with fragments, lines, and even paragraphs, but I can’t tie them together into an article. There is so much to write about, but I still want my thoughts to make more sense than the reality which inspires them. I will probably work on drafts and withhold publishing them until they are proper. Subscribing by email will ensure you receive anything I do manage to publish.

At the moment, frustration and depression are fighting for dominance, today would have been Emma and my seventeenth anniversary. I am aware I am not the man she loved, and question if love will be a part of my life again.

One more appeal, the bills haven’t stopped coming in and a future with a roof over my head depends largely on charity. Please share my GoFundMe campaign, little contributions add up.

I just can’t stare at empty pages right now.

 

Social Therapy

The therapies I have participated in since my accident have attempted to bring me back to a functional state. I was never merely functional, but they need a target.

Occupational Therapy has been trying to get my elbow and wrist to function in ways conducive to performing in an occupation. My mind is a bit fuzzy (more on that later) but I do not recall being asked which occupation I should be prepared for. My last position was in a warehouse, preparing shipments of fifty pound boxes of cosmetics. Prior to that I have done many things, both as vocations and avocations. Presently I can write, but I have never made much money writing (You could buy my book if you want to help). As much praise as I receive for my progress, I am nowhere near ready to pick and ship boxes heavier than three pounds. The other day one of the therapists was saying how well I am doing, I can touch my shoulder. I told her I really wanted my arms to match, and she asked what I could do. I wasn’t in the mood to show off, but I took my left arm, extended it to perfectly straight in front of me, lifted my arm straight up, brought my palm to the back of my head, and rotated my wrist clockwise and then counterclockwise, ending each twist with the back of my hand on the back of my head. These movements were based on the extrapolated extremes of the exercises I had been doing for my right arm.

Apparently this was not the goal they had in mind, as none of the therapists could reproduce the movement.

My Physical Therapy has been trying to get me to walk smoothly, without falling. I am not progressing quite as well here, I’ve always been a little wobbly and my gait can best be described as a controlled fall. I make them nervous, they keep thinking I’ll fall, but I saw there was a wall there and managed to bounce off of it. My days of ballet, or even expressive dance, are no doubt behind me. Yoga is still on my list, I can see it as a life long physical therapy project. If I’m lucky I will find a way for medicaid to pay for it.

My Cognitive therapy is as broken as I am. I have my first evaluation next week, and my comprehensive evaluation has yet to be scheduled. Parts of my brain are healing, enough that I am aware that things are missing. The entire months of December and January are now a mystery, and November and February are not as clear as they should be. In the interim I am taking the Lumosity training, and after a month my scores are as high as the fifty seventh percentile. I am well aware my mental acuity was previously in the ninety ninth percentile for some tasks, never below the ninetieth. There are languages in which I once could speak fluently and no longer can count to ten. I know what belongs in the kitchen but can’t think of how to put it together into an interesting meal. Emotionally, I am vacant, yet for some reason I feel an attraction to a woman who I had the police remove from my house last year.

My vision issues are slowly being narrowed down to the correct ophthalmologist, and my hearing tests have resulted in a “well that’s unusual” response from my doctors.

The most satisfying therapy I have tried has been “Social Therapy.” Spending time doing the things I am accustomed to, with people I am accustomed to. I hope I am progressing well, but my friends are not therapists, they may not be telling me about my failures.

I started out slowly, catching my friend’s “British Invasion” show, a chronological performance of the music of the 60s and 70s. They even had actors doing introductory skits, the opening had a great twist on “Who’s on First” substituting The Guess Who, The Who, and Yes as the acts of a concert.

Sam and I had a nice evening discovering garlic fries and I shot some video for the band. It was a good “first night out,” not too crowded or loud, and loads of memory laden music.

The next week we returned to see  my friend Buddy Cash play with his band and a couple of the guys from the band Squeeze. Buddy always packs the house, it was a busy and loud night, but it was great to see everyone again. Squeeze covered a lot of Led Zeppelin, which was an odd turn but interesting. With Buddy and two former bassists from Squeeze there was a plethora of bass players, unfortunately I didn’t shoot any video that night.

A few days later I met some friends from school I had not seen in decades.

Blake, Mike, and Kati

Blake, Mike, and Kati

My friend Michael Montgomery is a magician, he lives magic, always prepared for an illusion. It was amazing to watch him seamlessly flow from conversation to magic. Kati (Karena Walker) is a yoga teacher and singing bowl practitioner.  I attended a healing circle Kati and another yoga teacher put together a few months ago (although in my mind it is presently a fact and not a memory), it was exceptionally soothing. We had not all been together in nearly forty years, we met at Michael’s house, met his wife Paula, and had a wonderful evening rekindling memories. This is something I must do again, I carried a smile for days.

Tonight I’ll be seeing another friend, Ritchie DeCarlo, play with one of his bands, The Prussia Kings, at a club not far from Sam’s house (fortuitous planning). Ritchie’s musical directions are always interesting, and the club carries Chimay Premiere, so the evening is promising.

My friend Tribbee returns from Scotland this week, the Vernal Equinox arrives with Sunday,  April brings the Punk Rock Flea Market and Record Store Day. All of these things engage and stimulate my brain, providing much needed social therapy.

The road ahead is long and mysterious, much like my journey with multiple sclerosis I have no idea what to expect. I do know, at least I feel, I must regain my memories, exercise my brain, regain my mental acuity. I may appear to have recovered from the accident, but there remains a long, largely invisible, recovery ahead. Sam has said being with me is like being with my twin bother, we look the same and have similar characteristics, but we are not the same person.

I really want to be me again.

Perception

Our perceptions, the way in which we understand things, shape the things we see. I see myself as a rock and roll type of guy with a punker edge, and carry the attitude through many aspects of my life. As the years have gone by and my hair has thinned I no longer have the beautiful flowing locks of my youth, but in my mind I still see the young man I was, and I have difficulty understanding why he is pushing a walker in his Doc Martens. I suspect most of us have delusions about ourselves to some degree, yet we tend to forget we have even more mistaken impressions about other people.

God is good to me, it shows me my faults by displaying them in other people. I see the behavior and realize it exists within myself, allowing me to forgive myself as human, forgiving the others while still correcting the behavior in myself.

Recently a friend died. I met her forty years ago, and the subtle lessons she taught me back then served me through my life. You know a lesson is valuable when you find yourself sharing it with others, I have shared Connie’s lessons repeatedly, and her most meaningful lesson she repeated from beyond.

Connie and I were seventeen years old, taking “Introduction to Psychology” at New Providence High School. The teacher was Coach Furey, a young teacher with longish hair and a beard. He wanted to be “the cool teacher” and allowed us to have a coffee pot in the room because first period was early even for him. The coffee debacle contained a lesson of its own, as a section of the class became “the coffee klatch;” there were others as the young teacher stumbled through the year, but my favorite was when we discussed dreams.

Connie didn’t walk, for many in the class she was the first experience with a peer in a wheelchair. Someone asked her how she saw herself in dreams, whether in a wheelchair or walking. A level of tension was evident, even forty years ago referring to someone’s abilities was considered taboo.

Connie displayed no discomfort at the questions, answering calmly and honestly. She had never walked, she did not miss walking or picture herself walking. The wheelchair was not part of her any more than our school desks were part of us. Her vision in dreams included the movement she was accustomed to, and on the occasions she saw herself in dreams she was floating, moving without making contact with the ground.

This was a powerful lesson in perception, one that has been borne out by research. People do not miss what they have not experienced, their life is all they know. Ask a twin what it is like to have a twin, and they might ask you what it is like to not have a twin. Some examples of our misconceptions about our own perceptions can be found in the wonderful book by Daniel Gilbert, “Stumbling on Happiness,” and throughout the writings of Oliver Sacks, whose book “Seeing Voices” details his experiences at Gallaudet.

One of the more demonstrative communities to address the issue of insulated perceptions is the Deaf. Suggesting a person suffers from deafness may result in an argument, as he tries to convince you that you suffer from hearing. A growing movement within the community sees deafness as a defining element of belonging to their culture. Other groups, born differently, follow the same logic. This is how God made you, it does not need to be “fixed.”

Reflect upon this. Consider the definition of “normal,” as Merriam Webster states “usual or ordinary : not strange,” and “according with, constituting, or not deviating from a norm, rule, or principle.” Now consider the definition found in Urban Dictionary, “A word made up by this corrupt society so they could single out and attack those who are different.” The Urban Dictionary definition is directly implied by the definition in Merriam Webster, “not strange.” I find some comfort in being called “weird,” which I suppose is weird in itself. Many people wish to be accepted by society, being told they are not normal sets them apart; human beings have a long history of xenophobia, parents have killed children with minor deformities. The stigma of being different can be a life or death matter.

A few weeks ago Connie made a generous donation to my own GoFundMe website, and had written a very touching response to the thank you note I sent to her. A few years ago she had participated in “The Ice Bucket Challenge,” using ice and not water so her power chair would not “short out and blow up” as she put it.

 

 

Connie developed a sore on her leg which became infected, she went to the hospital and had a fatal heart attack the next morning. I found the reactions to Connie’s death mildly disturbing, as people said things such as “Now she is walking” and “she will be perfect.”

Connie was always perfect. It is those of us who judge others by our own standards who are less than perfect. It takes a person like Connie to reveal my own imperfections, as she did so gently, with no malice.

 

 

Unknown Territory

A dimension not only of sight and sound but of mind

A dimension not only of sight and sound but of mind

 

I have been writing in this blog for almost three years, daily at first, slowing to a more random pace, trying to settle on no less than once a week. Three hundred and eighty articles in and I am on target. I’ve covered topics from Quantum Physics through Astrophysics, Cosmology through the End of the World, Religions, Politics, a little Sex, and a good helping of Music. In short, the things I think about. This last year has been increasingly personal, and this article may wander into the most personal dimension, not the thoughts in my mind but the matrix of my mind itself.

I have always had a strong memory, recalling the quantity and quality of the events I have witnessed with speed and precision. I have been told I possess a keen intellect, absorbing and analyzing information, then communicating said information in easily understandable terms to any audience. I tell you these things because I remember them, not because I am aware of their presence now. I am reticent to comment on the world today, as I am not secure my analysis stands on the same foundations I have relied upon in the past.

Imagine the way you think. The complex layers of a memory, the data from all of your senses wrapped in your intellectual perception connecting every fraction of a second. I have been told a human may only experience one sensation at a time, one sound, smell, touch, emotion. The brain switches between inputs so rapidly it appears all these things are happening simultaneously, yet even more is taking place outside of awareness. We possess filters, our vision shifts our perception of colors to believe light is white; try on some tinted lenses and see for yourself. We can hear a melody through static, separating out what we want to hear; the same can be true with words in a conversation, consider a single political speech as heard by one thousand different voters, each hearing what they want to hear. We have each had enough tactile experience to know physical sensations are relative. Emotions exist in a dimension of their own, no adjectives are adequate. Tuned by all these factors our memories reside not only in the instant they were formed but also in the moment they are recalled. A word describes this, it is originally Sanskrit. The word is māyā (माया), and in a sense we refer to as “poetic” it has multiple meanings, most commonly considered to be “The illusion of reality” in the sense reality is an illusion. It is “that which exists, but is constantly changing and thus is spiritually unreal”, and the “power or the principle that conceals the true character of spiritual reality.”

With this fabulous brain creating reality from our sensory inputs, it can be difficult to determine if one of the inputs is faulty, and often difficult to explain. Verbally explaining a vision issue to an ophthalmologist is near impossible, you don’t speak their language; twice in my life I have had to resort to visual aids, a smear on the lenses of the first, using my hands to represent my eyes to the second, and this because I had diagnosed the problem and needed them to confirm and treat it. They had been pursuing (and ruling out) a different diagnosis, and were not on the path to the problem with my vision. How do you determine if the fault is in your brain? The stimuli has passed through several filters, are you certain the processor is to blame? Are you likely to ever suspect the processor, as it creates the filters and references you use to judge reality?

So I find myself today. I know one of the functions which takes place in my brain is malfunctioning. I don’t know if this is affecting other functions, or if those are malfunctioning on their own, or if everything is fine outside of one malfunctioning segment.

I have always been an emotional person. I feel deeply, I am passionate both verbally and physically. When I got out of the hospital last month, once I started remembering things, I found myself surrounded by reminders of Emma. My grief was overwhelming, I cried so much I would leave the room so I could scream in the pain which was tearing me to shreds. Then I stopped. I didn’t feel anything. I felt no passion or desire for Sam, and although I knew I should have some level of emotion directed towards the woman who leapt from open relationship partner to full time caregiver while waiting for the ambulance, even the apparent emptiness of my soul only troubled me on an intellectual level. Nothing affected me, I used to cry over commercials, dance to rhythms of the road, laugh at inappropriate moments,  and suddenly I was flat.

I do not think it requires a leap of logic to suspect the remainder of your mental facilities when one function of the brain isn’t working properly following a concussion, and I don’t remember much of the week following the accident. This just seems to be a reasonable precaution, along with avoiding heavy machinery.

I am not sure in which way or ways I should approach the question; how to elicit an answer (tests), how to measure and interpret any results. My mind is a carnival, every barking dog and stick of candy floss an important part of the tapestry, which is the gold thread and which the brass ring?

Lacking any formal training, and allowing any lapses in judgement, it appears I will need to reconcile every item I find, taking inventory of what holds me together, should I care for that revealed or not. I should enlist assistance for the task, and a brief perusal of psychiatrists who accept Medicaid produced zero results within the state. I feel rather strongly no shortcuts should be taken, the blossoming questions rise as a cloud from a bonfire off in the field, drifting across the moonlight as it paints the faces awaiting the carnival’s fireworks display.

And I can’t tell if this prose is an elegant indication of wellness, or an abstruse intimation of infirmity.

 

 

I will be waiting a few more weeks for cognitive therapy, it seems odd to me there are so few therapists available, the need appears overwhelming. So many unconscious sufferers wandering aimlessly. I joined Luminosity at the suggestion of my neurosurgeon, at least I will be exercising my neural net, keeping blood and electrons flowing. The other practice I have been applying in trying to find my emotional base has been following “inspirational” web pages, reassuring thoughts and mantras usually presented as memes. The greatest power I realize from these memes is the recognition I am not alone, someone else has produced the same thoughts I am pondering.

 

"Soul Speaking" Inspirational page

Soul Speaking” Inspirational page

 

The eventual remedy lays in memory, remembering who I am, verifying the memory represents reality, and living the life of the man who not only has been this person in the past, but is this person today. Social therapy, spending time with people who know me, can only provide the strength to separate the music from the static, provide reminders of laughter and passions. When I find I can dance to the music I have uncovered, there will be reason to believe I am on the right path toward experiencing passions again. I can acknowledge the possibilities are endless, opening my mind to the breadth of the spectrum, but only one wavelength belongs to me. I think it is just about 400 nano meters.

 

 

It’s a wonderful carnival, I’m staying all night.

 

Evaluating wellness

Shortly after I was diagnosed with Multiple Sclerosis I began to detest the question “How are you?”

“I’m fine” is not a proper answer, for one thing, hair is fine, not people. I might be pushing everything I have to appear I am operating within normal parameters, but I would never reveal this truth. If I have to tell you how hard I’m trying to stand up, then just standing up wasn’t good enough. I am almost certain the person asking does not really want to know all the things I am doing to look “fine” in the hopes no one will ask me how I am.

Today, almost thirty years later, the question is as difficult as ever.

After three decades of disguising myself as healthy, I don’t know what else to do. I have been fortunate in many ways, I do not appear to have aged, and I have played the part of reasonably healthy younger man well. I have not needed to adjust my act, and became emboldened by success. Then, like the roller coaster at the end of the ride, there was an immediate change of velocity. As one friend said of his experience “I woke up one morning and I was old.”

I woke up in the hospital and I was old.

This is the part I have found troubling, referring to it “like the roller coaster at the end of the ride,” feeling a sense of conclusion. Stuff happens, I have known this for thirty years at least. I have friends with Multiple Sclerosis who have lost the ability to walk, and have had to make a multitude of adjustments in life. I have known many people who were simply struck by ill fortune. I have known others who have not survived. I am, as I knew, fortunate. For some reason this has not made the adjustments any easier.

As I begin to recover from my “accident,” I am finding my recovery will not be as complete as I might have hoped. I will not be one hundred percent of what I was, but I will be closer to one hundred percent of the average fifty seven year old white male. Well, not in mass, but in many other ways. Even now, as I push my recovery, I am told I am doing too much.

I try to take this all seriously, because I am not certain about my mental facilities. What if they are right, and I really shouldn’t be trying so hard?

I gave driving a great deal of thought, determined to examine all the variables. I can turn the key, and although it takes both hands to move the gear shift, I only need to do that at slow speeds, such as parking. I have always driven with one (my left) hand. I can manipulate all the controls and see all around me. I do feel fatigued more quickly, driving a little more than an hour each way is all I care to try at this point. My doctor still feels it is a bad idea, not exactly chastising me for driving to an appointment the other day, but making his disappointment known. I knew I wasn’t ready to hit my old haunts (and their additional impairments), but now I feel the need to back off a little more, be a little safer.

I start physical therapy next Friday for my elbow, I’ve already been advised it will not be functioning as well as the other. I’ve been told a number of things about my body over the years and prefer to just see what happens, knowing the range of motion is expected to be reduced gives me a goal to exceed. My fingers are already moving fluidly, I’ll be making music as soon as I can figure out how to hold the guitar. Drumming is out for now, until extending my arm doesn’t make a sound of its own. I also begin “cognitive therapy,” which will be interesting and probably fun. Unless someone determines I have suffered excessive brain damage, which is bound to throw my confidence into a black hole.

My eyes, and the bones which hold them in place, are the subjects of Monday’s appointment. Something must be physically wrong for my vision to change the way it does, focus shifting as I stare forward. I just need everything to stabilize before getting another prescription for lenses. And there I go, assuming everything will stabilize. I spent my life making things work, I’ll hold my eyes in place with duct tape if I have to.

Wednesday we’ll be investigating why I can’t hear through my right ear. It had been getting a little weak, but since the accident the hearing on that side is gone, and although I was in a haze in the hospital, I do recall hearing one of the doctors saying he thought something was wrong which could be adjusted during the skull surgery (which didn’t take place because I kept healing).

The following week I begin catching up with all the health issues I’ve let go since Emma died. My new general practitioner was amazed I wasn’t reduced to dust in the fall, my osteoporosis has been untreated for seven years. So a new Dexa Scan and rheumatologist for treatment are in order. A new Neurologist seems an obvious choice, so an MRI is expected. The doc wrote prescriptions for my antidepressants, but a shrink is certainly on my horizon, there are a number of issues which need to be addressed; I am not the man I was 31 December, I know this for certain as my emotions have flat-lined. And of course there are still follow ups with the neurosurgeon to determine what physical damage to my brain still exists.

So, with my usual duality (good sign), my evaluation of wellness is I am better off this happened, it steers me towards treatments, but the happening itself has been awful. I have lost independence and ability, I feel “old.” I am not ready to feel old. I have a certain presence, a style which may need to be adjusted to fit an old man. It may be a mostly temporary situation, but the rest of me is not getting any younger. This is happening all at once, rather than complain I failed to prepare, I will try to rejoice I have been so healthy so long.

These are just the physical and emotional issues I am dealing with, a subset of the emotional issues are affected by the financial state of being unable to earn a living. I have never had to ask for help before; if you have not already, please stop by the GoFundMe page set up by a friend to help carry me through these difficult times. Even if you cannot help financially (maybe see it as supporting a suffering author?) perhaps you can use the “poster” button near the bottom of the page and print out a copy to share with friends. Great conversation possibilities there, and perhaps I’ll gain a reader through your good deed.

I once met Buddy Rich, his advice on drum solos was “take something simple and make it look hard, or take something hard and make it look simple.” This is hard for me, I hope I am making it look simple.

How am I doing?

Oh, and being able to shave would be nice

Oh, and being able to shave would be nice

 

Relationships

A few months ago I was driving through a section of New Jersey I rarely visit. I drove past a church I was once married in. It had been my second marriage, twenty nine years ago the day after I drove past the church. All told, there have been four marriages, ended by three divorces and one death.

I probably won’t do marriage again. I hang onto memories more than most people.

There are a number of factors steering me away from a fifth marriage, one I hadn’t even considered was brought up by a woman who said “I don’t want to be number five.” As it turned out, I didn’t want her to be number five either, but I understood her point. She didn’t want to be a number, my latest mistake. My father made a similar comment when I married my fourth wife, and it was equally meaningful, as he is married to his fourth wife and had at the time been married to her for thirty one years. Those guys who remarry can be a flaky lot.

 

number5ao7

A different number five

 

I enjoy the companionship of being married, and I do notice a difference in the relationship when I am living with someone compared to being married to them. As I have gotten older, that difference has changed, and/or I have changed, probably both. I am not terribly concerned about getting married now, yet I still desire the companionship.

Maybe one reason I have enjoyed being married is what is missing from my memories. I don’t tend to remember bad things, so with the exception of my first marriage, of which my ex-wife still feels the need to point out just what a miserable human being she is some thirty years after our divorce, I have good memories. I remember why I got married, not why I got divorced. Oh, I remember why I got divorced, I just don’t remember the reason causing friction or heartache. The “why”s gave me something to learn, adjustments to make in myself. Unfortunately, many people, such as my father and the potential number five, see my history as a series of failures from which I learned nothing. I think this says more about them than me.

It is not pleasant having a mind which works differently from “normal.” Perhaps with my recent brain injury that will no longer be a problem, but I don’t think so, it is getting harder to define. The other night I went to see Star Wars episode seven. A big night for me, my first big outing since the hospital, just a little scared the intensity (3D IMAX) might be too much for my brain.  Instead I kept feeling a smile on my face, memories of the first (episode four) film, memories of my first time seeing the first film. The next morning I wrote to the woman who had taken me to that first screening, thirty nine years ago in a little theatre in New Brunswick. She wrote back, she had a similar experience when she saw episode seven, her friends had been surprised she remembered not only the film, but where she had attended and with whom.

Good people create good memories.

Oscar Wilde said “Marriage is the triumph of imagination over intelligence. Second marriage is the triumph of hope over experience.”

Oscar Wilde

Oscar Wilde

 

It has been said we have similar appearance and wit, but no one mistakes me for Oscar Wilde. I have seldom allowed a failure to stop me from trying again, just in a different way. Experience builds hope, knowing what went wrong helps prevent that failure from happening again. There are just so many ways to fail in a relationship, my hope is I have found them all.

I like to believe I continue to learn, picking up something in each relationship which helps me recognize the same patterns should they show up again. Sometimes the pitfalls are my partner’s expectations, sometimes they are mine. Sometimes there are things to avoid, often there is something to repeat. I still believe humans are intrinsically compassionate, and I will always believe in the power of love.

I should also recall, as I consider my impressions, that I have recently suffered a concussion, and multiple opinions have been put forth on both sides of the question “Is Blake’s mind functioning properly?” My memories have summoned a kind person, I hope that is who I really am. My current emotional state is unrelated to my memories, I  believe I have felt this way, yet presently I am isolated, existing only within my mind, bereft of tangible desires.

From Oscar Wilde’s “De Profunis,” contemplations from his incarceration; “The final mystery is oneself. When one has weighed the sun in the balance, and measured the steps of the moon, and mapped out the seven heavens star by star, there still remains oneself. Who can calculate the orbit of his own soul?”

 

 

 

 

 

My New Year

OLYMPUS DIGITAL CAMERA

2015 ends

 

As years go 2015 was certainly a mix.

There were several ups and or downs on several fronts; as with any year simply immeasurable as a whole. It was a year. As someone who lives with their heart on their sleeve, my love life has been a tumultuous fiery carnival, which is normally an overall “Good” observation.

Wonderful lessons learned; the wife who broke my heart ended up being a decent human being, the woman who came after her proved that to be true by being less than decent, and the woman who came after her proved just how lousy human beings can be by stealing two thousand dollars. Good thing she only stole money and not my heart. The carnival provides perspective.

Near the end of the year, no longer interested in “relationships,” with their expectations and impossible to meet prejudices (“you’re just like…”), but still desiring companionship, I looked into an alternative to traditional couplings. Winter was on it’s way, there would be parties and social events, and days snowed in around the fireplace. No point in missing an opportunity to share joy.

I found a woman on line who fit my desired parameters. She appears to know not only what she wants, but also who she is. She grasps the frailty of relationships and seeks the companionship of a kindred spirit. She is sharp, and despite my opinion of myself there are moments I am not sure if I meet her criteria. It’s early, I’m still not certain. We have found peace with each other, a comfort of mind that presents itself at the physical level, and oddly enough some of the things we both desired no longer appear quite as important. As I prepared to write this, and about her for the first time, we discussed our “relationship” and my writing. It’s still early, neither of us are certain, but we are happy to have laid this foundation.

Enough about how we met and who we are, her name is Sam, for Samantha, and we had a wonderful evening New Year’s Eve, Then we came home to meet my neighbors for the midnight celebration. Then the new year began.

Blair had left her glasses, so I headed upstairs to return them. No one is quite sure what happened next, but Sam found me at the bottom of my steps in a pool of blood, wearing Blair’s glasses and holding mine.

My entry, three steps down, stone floor

My entry, three steps down, stone floor

 

From all accounts this was horrible. I remember nothing, but Sam says I was asking her to help me to bed. The first memory I have is in imaging at the hospital, being asked about my body piercings. Docs were able to remove the Tragus, I somehow took out the Dydoe. Somehow. Shattered right Ulna and Radius at elbow, shattered right orbit, subdural and subarachnoid bleeds, related blood loss.

I spent five days in the hospital (the Flemish word “ziekenhuis” kept floating through my head) as doctors decided what could be rebuilt. Elbow surgery was postponed while waiting for parts, when they arrived I had healed enough to not need all of them. Oddly, Sam and I had attended the same “Elbow” concert a few years earlier, unbeknownst to each other at the time. There was no cranial surgery, my eyes appear to have found the same plane but my new phrase is “It’s early.” I had no seizures, completing the anti-seizure meds the other day (seven day protocol) and aced my cognitive test by naming animals (took a walk through the zoo in my mind). I still can’t move my right arm usefully (post op splint) and my teeth feel like strangers in my jaw, the “bump” on my head has shrunken to egg size with only a line of dried blood and I can move around the house. Now doctors of no less than five disciplines would like to see me over the next few weeks, I am available for house calls…

Sam has been with me the entire time, far more than I could ask of someone who has known me so briefly. Her presence in the hospital was critical to my recovery, her cooking once home has lifted  my spirits above the pain my body is experiencing. This began when she rode in the ambulance with me to Princeton-Plainsboro Hospital (Dr. House long gone, I was shortly transferred to the trauma center at Robert Wood Johnson Hospital). I don’t recall our early conversations, but she has said I seemed to do better when she was there. Did I mention my appreciation of her perception?

Blair and Malcolm visited me in the hospital, on their way to Germany and to visit Tribbee in Scotland.

Throughout all this I have missed quite a bit. My ex-wife had been visiting from Belgium, we had been scheduled to see each other 2 January. Sam helped me contact everyone to explain my absence. My brain is still a touch fuzzy, I am not entirely certain of who I have spoken with, or what I have said. Sam helped me get settled at home, finding clothes that fit over the splint and wrapping it so I could shower, even taking me on an outing to her place. I may be unemployed, it will be difficult to work for a while, but prospects look encouraging.

My New Year?

It’s early…

Suicide notes

 

 

 

Suicide notes are the final statement, last words for someone who doesn’t believe anyone is listening. They are the message someone wants to share which sums up their life (as viewed through the depression which has led them to end that life). They can be filled with blame or despair, or they can simply be an explanation of a rational decision (Yes, it is my belief suicide can be a reasonable choice). I’ve read a few suicide notes, some celebrities, some acquaintances, and of them several have been quite rational.

When I say suicide can be a reasonable choice, I am not speaking about euthanasia for the terminally or chronically ill. I am speaking of circumstances in which the reasonable expectation of a satisfying and productive life have been removed. And no, I’m not suggesting a permanent solution for a temporary problem, I’m saying it is indeed possible to be trapped in a meaningless life, the problem is permanent.

As a chronically clinically depressed person, I can identify with the suicidal. I’ve certainly considered the act. I’ve been honest enough to admit it and been placed under observation. If there is a doctor out there who can explain how being incarcerated in a hospital room with no contact is supposed to return the will to live, I’m listening. It just teaches you to lie when asked if you’re going to hurt yourself. I did not, in fact, wish to kill myself, I just had no desire to live. I refer to it as “passively suicidal,” I still look both ways before crossing the street. My decisions about my life are no one’s concern, no one’s responsibility, until I decide I no longer wish to suffer. Then everyone has an opinion, usually an uninformed opinion. Speaking for myself, you do not know how I feel, you are not me. You have not survived over two dozen years with my case of Multiple Sclerosis, you have not watched my wife die, you have not watched the collapse of my dreams from my vantage point. I keep these things in mind about you when considering your choices, please extend the same courtesy to me.

A couple of noteworthy authors come to mind, and while they were active participants in ending their lives, they had given the act a good deal of thought and just ran out of reasons to stay alive. Ernest Hemingway’s note, written after months of illness, expresses many of my current feelings. He was disappointed with his legacy, and disgusted with the poseurs of the world.  His summation was (of course) classic Hemingway, “But here’s the beauty part. Forty, fifty years from now, when all the wanna-be Hemingways are old and fat and their chin-fuzz is fried to bristle and their huevos are dried up like figs in a dusty street… But they still want to do it all like Hemingway…They’ll have to eat a shotgun too.”

Hunter S. Thompson wrote a note I can identify with, even though I don’t care for football. Titled “Football Season is Over;” No More Games. No More Bombs. No More Walking. No More Fun. No More Swimming. 67. That is 17 years past 50. 17 more than I needed or wanted. Boring. I am always bitchy. No Fun – for anybody. 67. You are getting Greedy. Act your old age. Relax – This won’t hurt.

It doesn’t have to hurt. It’s all a matter of removing the central nervous system from equation, understanding the life process and how to interrupt it.

So here I am, a birthday looming on the horizon (only seven years past fifty), glory days in the past, and a series of disappointments in everyday life. I had made every effort to be out of this country before the election cycle began, but here I am, faced with two absolutely scary prospects as presidential candidates, and a populace torn over which sociopath to rabidly support. I had really hoped to avoid this. There’s a television at work, and I have to concentrate on not laughing out loud at the news in front of my co-workers. They actually take this stuff seriously, which highlights just how out of touch with reality the majority of people are. I find myself unable to relate to people, lots of people, the overwhelming majority of people. There are so many more issues, but this is not my suicide note.

Suicide is ostracized, making life difficult for those left behind, if they care what other people think. The fact is, all life ends. It is random, you could be hit by a falling aircraft while eating dinner. Your friend was not going to live forever, so it doesn’t matter if it was suicide or cancer that took him. Actually it does. Suicide is an act of ownership, taking responsibility for ending a life no longer worth living. It is not cowardly or an escape, it is an act of control, a conscious choice of path.

All of my religious influences have been strongly opposed to suicide. “Life is a gift from God, suicide is throwing away that gift, an insult to God.” We each have our own vision of our judgement day (Emma’s was cartoonish), I see it as an acknowledgement of my life to my creator. You can visualize it as a straightforward exchange across a desk (or a child begging for mercy, depending upon your temperament), but the conversation is taking place every moment, at the end we just make contact and I find out if my beliefs are correct (or not). Perhaps such a responsible point of view is unusual. This could very well be why suicide is so misunderstood, people who live their lives never actually taking responsibility for anything, judging those who have taken responsibility and faced the consequences.

You don’t know how it feels. Even if you have walked along the edge, it was your edge, you don’t know this one. Carry that lesson forward, apply it to all of your judgements.

 

 

Dancing about Architecture

It has been a rough month. My typical approach to such times is to embrace the mantra “When the going gets tough, the tough go dancing,” but this has provided little comfort this time around, the wounds I have received are far deeper than any logic would predict or dance could remedy.

I have yet to prove to myself any purpose in continuing to exist, and such thoughts cause me to define existence. The definition, of course, returns me to the dance, the depression staining my interpretations cannot obliterate the beauty of the performance. I remember, and try to convince myself of what I once held as truth. One does not travel the paths I have without making connections in the matrices which serve as a foundation when life attempts to remove one’s soul.

One footing of that foundation is music, which has sounded sour to my ears these last few weeks, another is writing, which requires more thought than a mind filled with self doubt can provide. Another footing is human connections, and despite the betrayal these connections have faithfully provided, little sparks of hope occasionally illuminate a bridge. Knowing I must pull myself together, the universe conspired to bring me to a minuscule venue over a fabric store in Philadelphia, the irony of the side street sharing the name of the woman who has torn my heart to shreds is not lost on me.

A string of obscure introductions led me to meet Ritchie DeCarlo, a local musician who plays in a couple of bands. I’m going to call him a “drummer” rather than “percussionist,” although his kit contains some fascinating percussion instruments, because he also covers synthesized sounds which are only percussion in an examination at the quantum level, such as his use of a theremin.

 

Ritchie on theremin

 

Playing theremin always reminds me of someone conducting an orchestra. I had explained to my second wife (the Conductor) how a conductor was the only person allowed to dance at a performance; she was not amused. So I guess it is time to explain the title of this article to those unfamiliar with the phrase. It is from a quote by Frank Zappa, “Writing about music is like dancing about architecture.” In my world, “Dancing” is a metaphor for life. The matrix of meanings and metaphors choreographs a sequence which supports my soul, even when that soul is in tatters.

One of the lineups Ritchie is involved with, the “The Trio from Hell,” more commonly referred to by the names of the band members; Percy Jones, Scott McGill, and Ritchie DeCarlo, performed at TTR Studios last night to a crowd of about fifty. Ritchie introduced the band, categorizing the music as “Not so easy listening.” It is a fusion of styles, most noticeably Jazz, “New Age,” and Electronica. Here’s a taste from last night;

 

 

 

Funny the things you notice in a video, I would have never noticed that bald spot developing on the back of my head. Back to the dance.

I find the music very easy to listen to, soothing with just enough twists to keep me from lulling into a trance. The guitar work of McGill was fascinating, his use of fretless guitars and midis, combined with a left hand that floated over the neck delivering lightening strikes reminiscent of a gulf thunderstorm, must be seen to be believed.

 

Scott turns chaos into order

 

In an industry in which the term “legend” has been overused to the point of meaninglessness, Percy Jones demands a personal adjective. His playing not only has influenced my musical directions, it has influenced many of my other influences. He effortlessly propels his line from “rhythm section” to “lead instrument” and back, creating sounds many people might not associate with the bass. This type of thing warms my heart, having been ridiculed for some of my arrangements; living within the definition of “improvisation,” yet not improvised at all.

 

 

Percy Jones

Percy Jones

 

Ritchie’s drumming glides between the styles fused in this band, again demonstrating the strengths required to play in a trio, the ability to effortlessly transition from lead to rhythm. In the case of a drummer, changing rhythm can be difficult, the mind (approach) is altered with time signatures and style. I recall trying to teach a drummer a particular passage which he envisioned as a waltz, or 3/4 time. It was not, it was a sequence of triplets in 4/4 time. The guitarist (whose ego dictated he believe “RMS” was a reference to his initials) scoffed at the explanation, but the drummer got it and never missed the beat in that piece again. Ritchie played a rather large kit this evening, but far from being gimmickry each piece fit the arrangement in which it was used, from his tympani tomtom through his eclectic collection of cymbals.

Most of Ritchie's kit

Most of Ritchie’s kit

 

Perhaps the most fortunate part of the evening was my friend bailing out at the last minute, leaving me with no one to share the experience. Because I do have someone, you.

Writers write, musicians play, and chefs cook. I’m ready to do all three today. I’m not back yet, I still need to make the “Lovers love” part work again, which rests with that woman named with a side street.