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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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What Can the Academy Learn From Temple Grandin and Her Cattle Chute Designs?

Who is Temple Grandin? She is the author of Thinking in Pictures: My Life with Autism, the subject of the HBO film “Temple Grandin”, and the designer of one-third of the livestock-handling facilities used in the United States today. According to the flyleaf of her book, Thinking in Pictures:
Temple Grandin, Ph.D., is a gifted animal scientist who…also lectures widely on autism—because Temple Grandin is autistic, a woman who thinks, feels, and experiences the world in ways that are incomprehensible to the rest of us. In this unprecedented book, Grandin delivers a report from the country of autism. Writing from the dual perspectives of a scientist and an autistic person, she tells us how that country is experienced by its inhabitants and how she managed to breach its boundaries to function in the outside world. What emerges in Thinking in Pictures is the document of an extraordinary human being, one who, in gracefully and lucidly bridging the gulf between her condition and our own, sheds light on the riddle of our common identity.

So what? My question remains: “What can the academy learn from Temple Grandin and her cattle chute designs?” I am persuaded that we can learn much. However, I don’t believe I will be suggesting what you’re probably thinking right now. I am convinced that many people reading this are saying to themselves: “The obvious purpose of cattle chutes is to herd cattle in an inexpensive and efficient way into or out of holding pens, with the last set of chutes leading to the slaughter house.” The above analogy would suggest that students are cattle and that institutions of higher learning are either holding pens or slaughter houses. Although I have heard people seriously make those comparisons, I am not going there.
I want to focus on several ethical values, design principles and practices that Temple Grandin employed in her work that were highlighted in the book and movie. I originally picked up the book because of neurological changes in my life. Due to several traumatic brain episodes, I have found myself living in the land of metaphors instead of the land of words and analytic, quantitative and sequential thinking in which I grew up and resided for more than 40 years of work in the academy. As I read the book and watched the video, a number of images jumped out of the book and off the screen, and caught my attention. If we were to use Grandin’s values, principles and practices as we design and operate our institutions of higher learning, I believe that they would be more humane, inexpensive, efficient and more effective in producing the learning in our students that we all desire.

The principle that drove Temple’s designs was that form was to follow function. First we define what we want to do. Then we design our processes and instruments to achieve the desired end.
The first value to be emphasized was respect for life. Temple respected cattle and pushed cattle ranchers and meat packers to respect the cattle. By force of her will, she was able to demonstrate that respecting cattle produced better and more efficient results in moving cattle from one place to another, right up and through the point of slaughter. Our students are alive. Shouldn’t we respect them?
The first of Temple’s practices I want to emphasize is the practice of looking at the product or process through the eyes of the intended user. In designing her cattle chutes, she got down on her hands and knees and crawled through the operating chutes to see what the cattle saw and encountered. In this way, she was able to find the places where the cattle stumbled, where they were confused, where they balked, and where things went smoothly. How many of us have crawled through the obstacle courses that we run our students through? Do we know where the path is too dark to see the potholes? Do we know where outside light confuses our students?

The second of Temple’s practices involved changes that Temple made to the then prevalent chute design. Temple changed the design of her chutes from straight lines with right-angle turns to curved lines. How did she figure this out? She studied how cattle behaved. She noticed that they were calmer and more responsive when moving in arcs rather than straight lines. How many of us have studied our students’ behavior and changed our pedagogy to get more responses from our students?
A second change Temple made in chute design was to replace slatted sidewalls with solid side walls. Why? Because she noticed that the cattle were distracted by outside interference like uneven sunshine producing glares and shadows that the cattle didn’t understand or recognize. Temple was challenged on this change by the cattlemen because of costs (solid walls were more expensive to build) and the fact that the slatted walls gave the handlers the opportunity to prod the cattle along when they got all tangled up. Her response was measured. She pointed out that since the cattle liked the arc movement and solid walls, there would be far fewer roadblocks, meaning less work for the handlers and more contented cows which meant more and better beef.
So what can the academy learn from Temple Grandin’s design of cattle chutes? We can learn: 1) Respect for our students, 2) Define our desired outcome and design our forms to achieve the desired functions, 3) Study our students, and look at learning through their eyes. 4) Remove unnecessary obstacles to make not only their life easier, but ours also. 5) Contented students will produce more and better learning.

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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?”

 

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Reading through the Week–Part I: Introduction

In the January 2012 issue of Christianity Today Alan Jacobs, Professor of English at Wheaton College and author of the recently released Oxford University Press book, The Pleasures of Reading in an Age of Distraction, is interviewed by John Wilson, the Books and Culture editor for CT. The title of the interview “Don’t Worry, Read Happy” is a light hearted attempt to encourage CT readers to expand their horizons for reading beyond work related assignments and to read for enjoyment. The subtitle of the interview, “Stop Fretting Over What You Need to Know, and Enjoy Those Books that Bring Delight,” is a quote from Jacobs that interviewer Wilson culled from the interview.

As I read the interview, I was reminded of two of my previous blog postings that I entitled, “Relief through Reading.” I went back to look at them. I was extremely surprised that it has been almost a year since I published those posts. As far as my reading for the past year, it has definitely been up and down. I have been able to read a few books for what one could the sheer enjoyment of it. However, most of my reading has been focused on my writing projects.

The title of one book, The Curious Incident of the Upside Down Dog, might suggest light reading. It was anything but light reading. It was a bio-novel, written from the perspective of a young adolescent boy suffering with Asperger Syndrome who discovers his neighbor’s pet dog killed in her backyard. Since the neighbor finds him with the dog and “she considers him strange,” she accuses him of killing her pet. Since the boy loved the dog and wanted to prove his innocence and find the real culprit, he begins an involved search for the real perpetrator. As the boy delves deeper and deeper into this mystery, we are drawn into the mind of an autistic youth, the inner workings of two dysfunctional families, the awful truths from which both parents and neighbors tried to insulate this innocent autistic boy, and the boy’s herculean efforts to find that truth, no matter what it meant for him and his family.

I selected this book because I knew from the advertisements it dealt with Asperger Syndrome supposedly written from the inside. Since much of my writing has attempted to write about difficulties from the inside of those difficulties, the first reason I selected this book was to get another example of how this type of writing might be done, definitely not reading for the pleasure of entertainment.

The second reason for selecting this book was because of an essay that I wrote more than two years ago, but have not yet published. In that essay, I suggest the behavior of many college and university faculty members was consistent with the behavior of autistic adults. I was hoping I could glean some guidance from this book on how to write about abnormal behaviors without criticizing those individuals for behaviors that were beyond their control.

I must admit that I didn’t get everything that I wanted from the book. It was a polemic about how adults treated this boy. The best message that I could take away from the book was that college administrators have a great responsibility to monitor, hold themselves and faculty members accountable for their behavior, and assist faculty members when they seem to be straying from acceptable behavioral norms.

I started this posting with the idea of writing another light encouragement to read. However I started to approach this in a manner that went against the advice of Professor Jacobs. My first idea was to suggest a reading plan that hit each day of the week. I was working on this idea even before I saw the Jacobs interview in CT.

In “Reading Through the Week, Part II, I will outline the reading plan that I developed for me. It is a plan that includes 7 books that contain the names of the days of the week. This book list is not for everyone. It was a plan and a book list to which I was attracted. I learned something from each of the books. I found some of the books to be a challenging read. Each of the books brought me enjoyment at some point during the reading. I found this exercise has helped me to return to an activity that I enjoyed during my childhood, reading for reading’s sake and not just to complete an assignment.