Compassion and Disease

I am back at work today. For those of you that don't know, I am a music therapist. Twice each week I run groups at an Alzheimer's Center in Ft Worth. I am reminded constantly at this place of the good a little compassion can do and the ills inattention can cause.

I was listening to my musical love this morning on the way to work, Elvis Costello, and his song Veronica came on. I know that he wrote song about his Grandmother when she was living with Alzheimer's. He gets it perfectly in that song. Everytime I hear it, I'm reminded of one resident or another who fits the lyrics perfectly:

Is it all in that pretty little head of yours?
What goes on in that place in the dark?
Well I used to know a girl and I could have sworn
that her name was Veronica
Well she used to have a carefree mind of her own
and a delicate look in her eye
These days I'm afraid she's not even sure if her
name is Veronica

This first verse is the heart of the pain that families go through. In the media Alzheimer's is often portrayed as an elderly person who can't remember current events, can't make new memories, but remembers the past clearly. This is not true. It MAY be true for SOME who are in the very early stages but for most this terrible disease affects all memories, and they may forget even their own name. It also affects more than memory. It destroys the brain to the point that, in the end, people are unable to take care of any of their physical needs and speech is completely gone. I see family members struggle with this and say to their loved one, "You know, answer the question." But they DON'T know. And they may know an hour from now or they may never remember whatever it is you're trying to get them to remember. Ever.

Do you suppose, that waiting hands on eyes,
Veronica has gone to hide?
and all the time she laughs at those who shout
her name and steal her clothes.
Veronica, Veronica, Veronica

I think the chorus is my favorite part because, in spite of the terrible-ness of it, it makes me smile. I know people like this. I know the nurses and CNAs who shout to be heard by people who are not deaf but simply not "available" at the moment. No amount of shouting is going to accomplish what you want here. In fact, a light touch on the shoulder and a gentle calling of the person's name is more likely to bring them back to the moment.

And I see a lady who is constantly accusing people of stealing her clothes and giving her someone else's stuff to wear. :) This line particularly makes me laugh because how must it seem to them? They're in this place where they feel constantly threatened by people they know they're supposed to know but really don't and "there they go with my clothes! And she put me in this dress that is NOT MINE!"

The next verse talks about memories of a lover. This is common. I hear stories sometimes of lovers who are NOT  the person's spouse. Sometimes it is from before they were married but of course, there are those other times. :) I heard the story from one ex-military man who spent time in Japan. He was half way through the story of his Japanese wife and their 50 children when I realized he was pulling my leg. I said, "15 children?" He said, "No, 50." And grinned big as day. I love those moments. I'm pretty sure he was messing with me but who knows. Made up memories happen during Alzheimer's too. I have to wonder if he had a Japanese lover while he was there who had his love child. It's not like it was an uncommon thing.

Veronica sits in her favorite chair
She sits very quiet and still
And they call her a name that they never get right
and if they don't then nobody else will

But she used to have a carefree mind of her own
with a devilish look in her eye
saying you can call me anything you like
but my name is Veronica

This juxtaposition of  how the person is now to how the family and friends remember them is the main reason why so many family members stop visiting. It is common for the family to visit almost everyday for the first couple weeks and then the visit slowly drop off until eventually they are simply "too busy" to come anymore. The sad thing about this, besides the obvious, is that when the family does come for a rare visit, the resident doesn't remember them at all and is closer to the staff. This makes it even less likely that the family will continue to visit. They justify it by saying, "They won't know I'm there anyway."

And this is where I have to learn compassion for the family members. I can be patient all day with someone in the grips of an illness that affects every part of the brain except emotions and creativity. When they are angry, it is a righteous anger but when they love, it is complete and without limits. They sing with me when they can't even speak and it is because of these small gifts that I have so much compassion and love for them. My patience wears thin though with staff and family members that expect these people to "act normal." This is my challenge, and I am working on it.

Short Stories: Brainworms

I took so long getting this posted today because I 1) have a migraine that's going to kill me and 2) wanted to give you a little more than just more Oliver Sacks. First I'll start with the Sacks because it's actually interesting

This comes from Chapter 5 of Oliver Sacks' Musicophilia, Brainworms, Sticky Music, and Catchy Tunes. Maybe I should explain what Sacks means about Brainworms before I lose everyone! Here's the sentence that explains it best:

Many people are set off by the theme of music of a film or television show or an advertisement. This is not coincidental, for such music is designed, in the terms of the music industry, to "hook" the listener, to be "catchy" or "sticky," to bore its way, like an earwig, into the ear or mind; hence the term "earworms" - though one might be inclined to call them "brianworms" instead.

This one was fun to read because who hasn't had this happen? We have all at one point be driven insane by some snippet of music stuck in our heads, whether we even liked the song or not. But I'll bet you've never had it happen for 43 years straight and felt locked inside yourself by it. This is what happened to one of Sacks Parkinson's patients described in his more well known book Awakenings. He says, "seven pairs of notes (the fourteen notes of Povero Rigoletto)...would repeat themselves irresistibly in her mind. She also spoke of these forming "a musical quadrangle" who four sides she would have to perambulate, mentally, endlessly. This might go on for hours on end, and did so at intervals throughout the entire 43 years of her illness, prior to being "awakened" by L-dopa."

Sacks talks of some ways people have found for getting rid of this problem, such as singing the song to it's actual conclusion (which I've heard of but never seems to work for me, I just get another part of the same song stuck in my head) or singing another song purposefully (of course then THIS may become stuck too!).

He gives an interesting theory, which I'll leave you to ponder, of the possible evolutionary reason for this phenomenon.

It may be that brainworms, even if maladaptive in our own music-saturated culture, stem from an adaptation that was crucial in earlier hunter-gatherer days: replaying the sounds of animals moving or other significant sounds again and again, until their recognition was assured.

The next short story is a real short story. I'll leave Sacks where he belongs for now, in my head! hahaha. It comes from Orson Scott Card's Keeper of Dreams, which I bought a year ago at his book signing. Yes, it's signed! It says, "To Tonya, A fellow dreamer," probably a common statement but one I enjoyed nonetheless. This story The Elephants of Poznan.

It is set in the future, as most of his books and stories are. It is in Poland after a devastating plague has not only killed most of the human population but also left them sterile. I'll start with the opening paragraph because I think it conveys so much:

In the heart of old Poznan, the capital of Great Poland since ancient times, there is a public square called Rynek Glowny. The houses around it aren't as lovely as those of Krakow, but they have been charming painted and there is a faded graciousness that wins the heart. The plaza came through World War II more or less intact, but the Communist governement apparently could not bear the thought of so much wasted space. What use did it have? Public squares were for public demonstrations, and once the Communists had seized control on behalf of the people, people, public demonstrations would never be needed again. So out in the middle of the square they built a squat, ugly building in a brutally modern style. It sucked the life out of the place. You had to stand with your back to it in order to truly enjoy the square.

Now I'm not sure if he is exaggerating or if the pictures I found simply didn't show the building he's talking about, but I thought it was beautiful!
This is an interesting story. After the plague, the elephants come to Poznan. The have journeyed from Africa and everyone is a little confused as to what they are doing here. Shortly afterward, a family comes to Poznan. The mother, father, and daughter came through the plague together, though they lost their two sons. Miraculously, the daughter is fully healthy and the parents believe she may be able to conceive. Since she is the only hope of the human race to survive, she agrees to an experiment of sleeping with one man every three months (in order to know which man is fertile). The narrator of the story turns out to be that man. Shortly after his son is born, he begins focusing on the elephants and why they seem to be watching the people, almost as if they are conducting an experiment...

I would love to tell the whole story but it would be the same! Please read this wonderful story!

The Traveler: an excerpt and discussion

I talked about this and the second book, The Dark River, in John Twelve Hawks series The Fourth Realm a little bit last year. The third book came out this week and I will be reading it as soon as I finish the second book again. These books have made a big impact on me and I hope anyone who has ever been interested in politics, REAL privacy, and freedom brought about by activism not war will read these books.

I won't spend the time reviewing them again since you can read that other review here if you're interested.

Instead I'd like to discuss an interesting passage that I either didn't really think about last time I read it or forgot about in the larger scheme of the novel. One of the smaller characters in the book is a neuroscientist, Dr. Richardson, who's world gets turned upside down when he is introduced to the existence of the Travelers, Harlequins, and Tabula. Before this though, he gives a lecture on the non-existence of God. I got the impression from the description of this man that he is based on Richard Dawkins who wrote The God Delusion, but I might be wrong about that. I'm about to quote quite heavily from this part of the book in order for you to understand my argument. He says:

For the last decade, I have studied the neurological basis of the human spiritual experience. I assembled a sample group of individuals who frequently meditated or prayed, then injected them with a radioactive tracer whenever they felt they were in direct connection with God and the infinite universe. The results are as follows...

When the person prays, the prefrontal cortex is focused on the words. Meanwhile the superior parietal lobe at the top of the brain has gone dark. The left lobe processes information about our position in space and time. It gives us the idea that we have a distinct physical body. When the parietal shuts down, we can no longer distinguish between our self and the rest of the world. As a result, the subject believes that he or she is in contact with with the timeless and infinite power of God. It feels like a spiritual experience, but it's really just a neurological illusion...

The individual having a religious vision is actually reacting to flashes of neurological stimulation in the temporal lobe...In order to duplicate the experience, I've taped electromagnets onto the skulls of my experimental volunteers and have created a weak magnetic field. All of the subjects reported an out-of-body sensation and a feeling that they were in direct contact with a divine power.

Ok, if you read all of that you're now primed for my argument and (hopefully) will even have some arguments of your own to either add to mine or dispute mine. I realize this is fiction and these studies are probably not real, however I have heard this argument from scientists before; most notable Richard Dawkins. I like Dawkins' work, I find it intriguing. I do not, however, agree with everything he says. So, taking into account this is fiction, I'm working from the premise that there are people that do believe this and I am making my argument to that.

My first thought when I began reading this was bull****. When I eat I will have brain activity that can be shown on scans. That does not mean the food is a figment of my imagination. When I hear music, I will also have brain activity that will show up on brain scans. Again, the music is not a figment of my imagination. I can cite a dozen similar examples but I think you get the point. If these people he was studying showed no change in their brain activity when in the midst of their out-of-body experiences or connections to God, then he would probably show that as evidence that they were making it all up. The reason? Because if there is no change in brain activity then nothing different from the ordinary is taking place. Clearly he is proving that SOMETHING different from the ordinary is taking place. I am not going to get into a religious discussion. I've done that before on here and it was fun. I enjoy talking about the differences and similarities in religion in my personal life too. Joseph Campbell is one of my favorite writers. What I want to say is that I think a study like this proves the experience was real, not the other way around. In fact, what if it is necessary to have this particular brain activity in order to have the experience? Some of the Eastern philosophies believe that you must have certain physical conditions met before you can achieve a spiritual goal. That's why meditation is so important. It is also why people sing and pray at church, it puts them in a certain mind frame. It is why some people fast for long periods of time. The group-ness of it helps too. Having people around who are experiencing the same thing you are, makes it easier to enter that physical space in order to achieve the spiritual goal. I believe this may be one reason why Christians (and even those groups before them) originally needed to gather in one place. So, when the scientist in the book creates the physical experience, maybe the subjects really did have a spiritual experience.

Please, I would love opinions on this!

Short Stories: More from Sacks

This Saturday I am continuing with Oliver Sacks' Musicophilia. I'm doing chapters since they are arranged in short story like manner. Here's the first post if you want more info.

Chapters 2 and 3 both deal with music in relation to epilepsy. Chapter 2 titled A Strangley Familiar Feeling: Musical Seizures, relates how some people have musical auras, that is, they hear a certain type of music before going into a seizure. They get recognize that if they hear this piece of music, they are most likely only hearing in their heads and are going to have a seizure soon. Some people with this type of aura feel that the music is very familiar but can never quite place it. Others recognize immediately the song they are hearing. The most interesting of these stories was of a mother who diagnosed her son with seizures before the doctors. She heard him humming Pop Goes The Weasel one morning, the same tune she hears just before she has a seizure.

Chapter 3 is titled Fear of Music: Musicogenic Epilepsy. I found this one terribly sad. It tells of people who's seizures are brought on by music. Sometimes any kind of music and sometimes one particular style or piece of music. It seems to be related to the emotions; the more emotional the type of music the more likely it is to cause a seizure. The saddest case was of the 19th music critic Nokonov. At first it was itermitent but gradually any type of music would bring on a seizure. He had to give up his career and actually began to fear all types of music.

Short Story Saturdays: First Post

I'm beginning this Short Story Saturdays for me to share short stories and chapters of books that are like short stories. I decided to do this when I picked up Oliver Sacks' book Musicophilia this afternoon and noticed that it was written in a sort of short story format. I like the idea of sharing so much more of this book than I would in a normal review but over a longer period of time. Many of you may not know that I am a music therapist. I've been meaning to read this book for a long time and finally, while at the bookstore today, said to myself "What are you waiting for? Buy it already!"

If anyone would like to join me in sharing some of their favorite short stories, feel free to do so here or on your blog but there are so many daily memes out there already that I'm not really expecting it. I have been so happy (and surprised!) that so many people are participating in my Friday 56 that I couldn't imagine being greedy and starting another one! I simply want to do this to make myself read those books of short stories I have sitting around my house looking at me and to share this wonderful book by Oliver Sacks.


Oliver Sacks is the famous neurologist who wrote the book Awakenings which the movie of the same name was based on (Robin Williams played him). Sacks is also a huge advocate for music therapy. Often when you hear him speak, he spends most of his time talking about the profound affect music can have on the brain. I was very excited when this book came out. So now I will stop blabbering and tell you about the first chapter.

A Bolt From The Blue: Sudden Musicophilia
This chapter is mainly about Tony Cicoria, a surgeon who is one day hit by a bolt of lightning. After a brief two week recovery period in which he has a few memory problems, everything seems to go back to normal. Then he suddenly is struck by the profound need to listen to piano music, specifically Chopin. He then feels the need to learn to play the piano and while he is learning Chopin, he begins to hear his own music. It becomes almost a compulsion for him to learn how to write down this music he hears. He does not stop being a surgeon but all his free time is now consumed by playing and writing his own music. Before the lightning strike he did not know how to play and was never interested in learning, much less composing his own music.

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