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My Head Was Still Ringing Long After the Bells Stopped

The next two Sundays after the experience that I described in the post “Pop Goes the Weasel! Sensory Overload!” capped off a three week run of sensory anomalies and sensory overloads. I woke up the morning immediately following the Five Piano Guys concert experience with very fuzzy vision. Even at 11:00 AM sitting in the Sunday morning worship service, my eyes felt like they were blinking or twitching very rapidly. However, they were hardly moving at all.

During the service, a ladies trio sang the special music. They began the piece with several very high notes that physically hurt my eyes. My eyes felt as if someone was sticking needles in them. For the remainder of the service, I didn’t hear the piano, which was not unusual. However, I didn’t “see” the piano music either. I felt my eye-balls vibrating in their sockets to the tune the pianist was playing. In addition to my eyes vibrating, I felt the organ music vibrating across my forehead. The two instruments were playing the same tune in different registers. The organ notes were lower than the piano notes. I knew that but I really don’t know how I knew that. Were the vibrations that significantly different? Was I remembering how the music should have sounded? Was I really hearing a difference, but my brain was keeping that information to itself and not sending it out to my sensory receptors?

The following Sunday was Fathers’ Day. The special music for the day was the Handbell Choir playing “How Firm a Foundation.”  I could hear the bells ringing distinctly. I could easily identify the hymn they were playing, even without the title in the bulletin. As they reached the crescendo in the final chorus, the sound of the bells began echoing in my head. I head the bells ringing for several minutes after they had stopped playing. It took a great deal of concentration to shut out the bells to hear the pastor when he started to read scripture and deliver the Fathers’ Day sermon.

For the remainder of the service, I did not “see” the piano music. Instead of seeing waves or lights, I felt my eyes vibrating in their sockets or blinking in tune to the music. I asked my wife if my eyes were moving. She said that neither my pupils nor eye lids were moving in any unusual pattern.

Throughout the remainder of the day, there were times when the bells came back. By concentrating on what was happening around me, I could stop the ringing!

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Pop Goes the Weasel! Sensory Overload!

Even though the song and tune of “Pop Goes the Weasel!” is a late 19th century/early 20th century labor song supposedly originated by the textile workers of London, England, almost every American child has heard it as a nursery rhyme and can sing at least one variation of it. One version of a stanza that I particularly like, because of the vivid visual imagery, is:

All around the Mulberry Bush,The monkey chased the weasel.The monkey stopped to  pull up his socks. Pop! goes the weasel.

This song is more fun when you don’t know that

1) The Mulberry Bush was reportedly a tavern near the textile mills in London;

2) It has been suggested that monkey was a derogatory name given to the poor textile workers;

3) The weasel was a measuring device on the yarn spinning machine that measured out the exact length of yarn needed to fill a spool;

4) Pop, was the sound the weasel made when the yarn reached the correct length; and

5) The textile worker had to be ready to shut down the spinner immediately when the weasel popped or he/she would be in deep trouble with the mill manager for wasting yarn. Pulling up ones’ socks is a totally unnecessary action, and a huge distraction from the important task at hand.

I think it is funnier to visualize a real monkey literally chasing a real weasel around a mulberry bush, and the monkey stops to pull up his socks (What monkey would be wearing socks?)  At this point, the weasel pops up on his hind legs and starts laughing at the monkey.

If you read my post, “Hallelujah, I Heard the Piano Playing!”  you know that on a recent Sunday, I “heard” the piano playing in church for the first time in more than a year. Via my cross-sensory perceptions, I “see” a piano making music via sinusoidal waves on an oscilloscope screen or via the towers of “tree lights” on an amplifier mixing board. If the music is familiar, I can almost always recognize the tune. I can then either sing the words or hum the tune. Since my voice is a human voice making those sounds, I can “hear” those sounds.

The Saturday afternoon following my experience with the church piano, I had another encounter with a piano. I had spent most of the morning on my computer cleaning up my ever increasing accumulation of emails and several blog posts on which I had been working.  I wanted to take a break so I sat down in my lounger and turned on the television fo find some sports programming. The sports programming that afternoon was very sparse. The French Open women’s final had been completed very early in the morning due to Serena Williams’ masterful play, her very quick defeat of Maria Sharapova and the six hour time difference between Paris and the east coast of the United States. That particular Saturday afternoon was a dreadful weather day for much of the eastern half of the United States. All outdoor sports in that half of the country were rained out. In addition, in early summer, there are no indoor sports events. So there was nothing in the way of interesting sports on the television.

My second and third choices of afternoon entertainment would have been cooking shows or DIY shows. Unfortunately, all of the shows on the food and DIY networks were reruns that I had already watched. There were no good movies on the television that day. We didn’t have a Netflix video because I had just put DVD #5 of the Prisoner series in the return mail so that I would get #6 quickly.

To fill in the void of having none of my normal available entertainment choices, I found what looked like a very interesting concert on the local public television station. It was a concert by a group of five musicians based in Colorado called the Five Piano Men. It wasn’t what one might think it would be. It was not five people playing five different pianos. It began with one man playing a piano and one man playing a regular cello. I “saw” the piano music and I “felt” the vibrations of the cello. Unfortunately, I couldn’t identify the particular piece they were playing.

After that opening number they introduced the other three members of their group.  For their first number as a group, the first pianist stayed at the piano keyboard. The original celloist grabbed an electronic cello, and the newly introduced members of the group grabbed regular cellos. They began playing Chopin’s Cello Sonata in G Minor. I “saw” the piano music and I felt at least three different types of vibrations from the cellos.

When the Chopin piece was finished, the group gathered around the grand piano on the stage to “play” the one piano. However, it was not the typical sense of playing a piano. The individual who seemed to be the primary keyboardist sat at the keyboard. An overhead camera showed what every member of the group was doing. Two members were “playing” drums on the sound board of the piano with their hands. The final two members began plucking the piano strings with their fingers or using violin bow strings to “play” individual piano strings or small groups of strings. After making what I assumed was their warm-up noises, they started playing the easily identifiable opening of Beethoven’s 5th Symphony. Short-short-short-Long! Short-short-short-Long!

After they finished the first movement, they were joined by the Colorado Youth Orchestra, with strings, wind instruments and percussion, playing the remainder of the symphony. Part way through the third movement, I was subject to sensory overload! Not only was I really actually seeing how the music was being played and really hearing part of the music, I was “seeing” several instrumental sounds and “feeling” vibrations from at least five different instruments. I was hearing, seeing and feeling Beethoven’s 5th, when suddenly “Pop!” went the weasel! I had to turn off the television and go back to the safety of my computer for the remainder of the afternoon.

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Hallelujah, I Heard the Piano Playing!

This past Sunday morning,  I was very excited for a moment. Those of you who have been following my story know that I have been experiencing cross-sensory perceptions for the past three years. I do not “hear” the organ or piano playing in our Sunday church services. My ears are working fine because I hear the choir and congregation singing. I hear the wind instruments in the worship orchestra playing their music. I hear the worship leader or the preacher speaking from the pulpit.

However, in the year that we have attended our current church, I have “heard” organ music only once. All of the other times, I have felt vibrations across my forehead. If the music is a familiar piece, I can recognize it from those vibrations. The only time I literally heard the organ was when the organist switched to a flute register. As the organist played in this register, I could distinctly hear flutes. Obviously, we have an electronic organ in our church. I do not know what would happen if I listened to a real pipe organ where the tones are produced by air forced through tubes like the wind instruments that I hear regularly.

When a pianist plays the piano in our church, I do not hear music. I see one of two things. The first is an oscilloscope screen with a sinusoidal wave running across the screen. The second is an amplifier mixing board with its rows of lights flashing up and down. These images are visual representations of the music that is being played. Again, if the music is familiar, most of the time, I can recognize the music from the visions.

This phenomena occurs not just with physical instruments. When I listen to digitally reproduced music (CD’s, tapes, television, and radio) I have the same results of either feelings or visions. With other stringed instruments, I have similar sensations. With guitars and violins, I see the music. With cellos and basses, I feel vibrations. The only “logical” explanation that I have for the difference is the general pitch of the notes that these instruments play. I was stumped at first with the organ and piano since the two instruments should be playing the same notes.  However, there is still a tonal difference between a “High C” on the organ and one on the piano.

It took me some time to realize that this was translating over to other auditory experiences. I no longer hear robins and the typical song birds. When they are making their music and I recognize the sound, I “see” a bird. However, with ducks and geese, I feel their honking along the temple region on my face. It doesn’t happen with human voices. I hear people singing and speaking. As long as I can recognize the sound, I can live with the cross-sensory perceptions. All my neurologists can tell me is that this is unusual. Two weeks of hospital observations of brain activity have produced no viable explanations.

Now back to the Sunday that I heard the piano! The choir was singing a hymn. The first verse and chorus went as usual. I heard the words that the choir was singing, I felt the vibrations of the organ, and I saw the amplifier lights from the piano. When the choir finished the second verse and proceeded to the chorus, I stopped feeling the vibrations from the organ and I started hearing the piano playing music. I was very excited. The music was back!

However, all it took was a glance toward the piano for me to realize that the instruments had stopped playing and the choir was singing a cappella. When I came to that realization, the piano music stopped. Another hallucination! My brain was inserting the music that it felt should be present. When I knew that there was no instrumental music, the sounds of the music stopped. When the instruments began to play again on the third verse, it was back to my reality. I felt the organ music and I saw the piano music.

At this point, all I can do is thank and praise God that I can still recognize and enjoy good music, whether I hear it, see it or feel it.

 

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They’re Baaaaack!

How many of you could identify the source of the title I selected for this post? If you said it is from the cult classic horror film Poltergiest II, you would have been correct. If you saw the movie, or even the ads or trailer, it was hard to forget the 8-year old child actress, Heather O’Rourke, holding a telephone receiver to her ear, and with a look of abject terror, screaming hysterically, “They’re baaaaack!”

Poltergiest in German mean “noisy ghost.” Traditionally, they are considered nuisance ghosts. They make strange noises and move things without really doing anything malevolent. They tended to concentrate their attacks on an individual instead of a location. In the three Poltergiest movies, the “they” were not the typical poltergiests. These poltergiests were malicious and viciously evil. However, they did seem to only concentrate their attacks on Carol Anne, the cute, young daughter of the Freeling family. Their presence in the first movie in the series, Poltergiest, was announced by Carol Anne with the equally well-used phrase, “They’re heeeere!” At the conclusion of the first movie, these evil ghosts were supposedly exercised from the lives of the Freeling family.

Anyone who follows the horror film genre knows that this pleasant thought was too good to be true. Horror film writers and directors can’t leave an innocent person or happy family alone. Most viewers easily identify with these type of characters. Thus, these victims make for a great story line and a successful film.

Early December, my poltergiests came “baaaack!” To revive another common phrase that I used in a previous post about a stubborn cat, “I thought they were gone, but they wouldn’t stay away.” My poltergiests are hallucinations and cross-sensory perceptions. For several years, I have fought with medical professionals about the term hallucinations.

Soon after my series of tonic-clonic seizures and the onset of my epilepsy, I started sensing things that I knew were not real. For example, even when I knew the wall opposite me was absolutely fixed in place, I occasionally “saw” it speeding toward me. I also knew that there was not a tiny igloo on the plain shower curtain in our bathroom. I definitely knew there was not a tiny Eskimo living in that igloo. In addition, I absolutely knew that the little Eskimo was not acting like the cuckoo of a cuckoo clock, popping in and out of the igloo regularly.

If I knew something wasn’t real, how could I label that a hallucination? However, to be able to communicate with medical professionals on their terms, I finally had to acquiesce and call my unusual perceptions hallucinations.

However, my cross-sensory perceptions are a horse-of-another color. My medical professionals do not know what to call them since they don’t fit the classical scientific definitions of dysaesthesia or synesthesia. With my cross-sensory perceptions, I am receiving sensory stimuli through the normal sensory receptors, but my brain is translating those signals into something else. For example,with musical instruments, I can hear wind instruments and horns normally. However, I do not hear string instruments. I either feel vibrations or I see images of oscilloscope waves or amplifier lights. Even though I don’t hear the music from the organ in our church, I can identify old familiar hymns from the vibrations or visual perceptions. In the past six months I have only “heard” the music from the organ once. That one occasion was the Sunday morning, the organist used a flute register to play one hymn. I believe I heard the organ that day because it sounded like a flute.

Eight months ago, my neurological and cardio-vascular medical teams got together to discuss changes in my medications that might possibly reduce my tremors, hallucinations and cross-sensory perceptions. The changes that they made seemed to have some positive effects through the late summer and early fall months.

However, Thanksgiving was a very stressful time in our family. The Saturday before Thanksgiving was the wedding of the youngest daughter of my wife’s deceased sister. The joy of the weekend was shattered when the wife of my wife’s younger brother died suddenly the day before the wedding. The funeral service for our sister-in-law was held the Saturday after Thanksgiving.

Soon after Thanksgiving, the hallucinations started up again. In addition, the cross-sensory perceptions increased in frequency and diversity, and my tremors increased in frequency and intensity. I still didn’t want to call my unusual perceptions hallucinations because I knew they weren’t real, until…they progressed to teh point where I wasn’t sure whether they were real or not. I would see something on the desk or table and when I reached to pick it up, nothing was there. I would see an animal run across the road. When I asked my wife about it, she would say there was no animal. She would suggest that I probably saw a piece of paper or trash blowing across the road. I would see birds flying past the car. My wife would say that she only saw a leaf blowing in the wind.

One of the cross-sensory perceptions to which I had become accustomed was one in which, instead of smelling the odor of a skunk, I would see the image of a dead skunk along the side of some road, even when there was no dead skunk or road anywhere in sight. However, one time I actually did see a dead skunk before I had the vision of a dead skunk. When I saw the skunk, I started smelling the distinctive odor of a skunk. When I asked my wife if she smelled the skunk, she said, “No.” She saw the skunk also and was surprised that there was no odor coming from this dead skunk.

So now “They’re baaaaack!” and they really are hallucinations. In talking with my medical team, they are considering the possibility of making more changes in my medications. I suppose this is why they call it, “Practicing medicine.”

 

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Random Events, Conditions, Disorders, Diseases: Part II

I finished Part I of this post making two claims.  The first claim was that the labels given the circumstances of patients can affect the patients’ perceptions of themselves. The second was that those labels can affect the treatment offered to the patients. In addition to those two claims, I asked two questions. One of the questions was, “Is health care a public or private good?”

To those of you who are saying, “That’s a trick question,” I will admit that it is definitely a trick question. The trick spins on two pivotal points. The first pivotal point is how one understands the word “good.” If one takes it as meaning “benefit,” health care can and should provide a private benefit to individuals. I believe individuals should have the opportunity to enjoy their lives completely. If individuals are healthy, they are enabled to contribute as much as they can to society. The more individuals benefit society, the more society benefits.

I know the second pivotal point making this a trick question will get me in trouble with many readers, because I am going to bring the discipline of economics into the mix. Some of you are already asking, “How can you put a monetary value on a human life?”

Before I sink too deeply into this quicksand, I will tell everyone that I value everyone’s life, just as John Donne wrote in his essay, Meditation XVII,

“No man is an island, entire of itself…never send to know for whom the bell tolls, it tolls for thee.”  If one person dies or is incapacitated, that takes away a little piece of me. Most people are more familiar with Donne’s essay translated into a poem that Ernest Hemingway used in the flyleaf of his novel, “For Whom the Bell Tolls.” In this sense, health care is of social benefit.

Although many political careers have been lost or almost lost trying to traverse this quicksand blog, I’m not a politician and I believe that I must begin wading through the quicksand. Health care, just like everything else in today’s world, has expenses related to it. Expenses and money bring the discipline of economics into the fray. Economics defines a social good as a benefit with two properties.

The first property is known as “non-rivalry.” This refers to a good that all can enjoy in common in the sense that each individual’s consumption of such a good leads to no subtraction from any other individual’s consumption of that good. Health care on the surface may appear to be a non-rivalry good. However, on closer inspection it is not hard to become convinced that there is not an inexhaustible supply of doctors’ time, hospital space or medications.

The second property is known as “non-excludability,” that is, it is impossible to exclude any individuals from consuming the good. For health care, it is easy to see that certain individuals can be excluded.

Since health care fails both the non-rivalry and non–excludability tests, health care can’t be classified as a social good. Does that make it a private good? The major problem with labeling health care a private good is that the overwhelming majority of individuals can’t afford the cost of treatments associated with health care.

In addition, even if all the individuals who need a certain type of health care were to pool their resources, they couldn’t possibly pay for the research and development necessary to further the fight against their condition, disorder or disease. R & D for health care must be considered something beyond the communal efforts of those directly affected. R & D requires a social effort.  In Part III of this post, I will highlight a number of those R & D efforts as well as some communal efforts that attempt to help patients and their caregivers cope with their day-to-day problems.

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Random Events, Conditions, Diseases, Disorders, Part I

Random Events, Conditions, Disorders, and Diseases: What, if any, are the differences between these terms? The term “random event” carries with it the connotation of a single event for which an explanation is difficult, if not impossible. The term “condition” carries the connotation of repeated events, which may occur with regularity or in a predictable pattern. The term “disorder” carries the connotation of a condition which is caused by an identifiable internal malfunction, or design flaw. The term “disease” carries the connotation of a condition which is caused by an externally introduced agent.

  Why am I concerned? Should I be concerned? Should others be concerned? The human side of these questions includes the human psychological need to name, identify and control internal and external events. However, it also includes the practical side to these questions because insurance reimbursement almost always requires the identification of a problem. Insurance companies are usually hesitant to reimburse for the treatment of a “random event.” I have been questioned on coverage until the random event could be identified as part of a condition or disorder.

I began thinking about this post in relationship to my concerns and questions connected to my recent battles with health, communication, physical abilities, and mental capabilities. However, as I have talked and exchanged emails with others, I have found that I was not the only person to ask these same and related questions. The article, “Branding a Soldier with Personality Disorder” in the February 25, 2012 edition of the New York Times, raises the related concern of a hierarchy among disorders. The article may be found at <http://www.nytimes.com/2012/02/25/us/a-military-diagnosis-personality-disorder-is-challenged.html?_r=1&nl=todaysheadlines&emc=tha2 >

This hierarchy among random events, conditions, disorders and diseases affects the coverage and treatment that one can expect to receive. Senior moments receive less attention than aphasia. Senior moments receive less attention than dementia or Alzheimer’s disease. Tremors receive less attention than Parkinson’s disease.

With these states of affairs stacked against an individual, it is imperative that individuals and their caregivers be prepared to insist upon and fight for the best and most appropriate treatment available. Given the current fiscal model under which medicine operates, the best and most appropriate treatment available may not be the first option offered to patients and their caregivers, if any option is offered at all.

Please understand that I am not condemning the medical enterprise for this state of affairs. I have spent 40 years in higher education. It has its own difficulties that many believe begin with a broken fiscal model. This often means that the best and most appropriate education is not always offered to students. At the risk of starting a philosophical war I invite responses to the question: “Are education and medical care, a public or private good?”