New Location for By’s Aphasia Posts

Please pardon the dust. My blogs are under construction so that I can provide what I believe are more coherent, cogent and timely posts. Beginning today all of my postings regardless of the subject will be published on the post “By’s Musings” at <http://byhighered.wordpress.com/>. Please make note of the new address for all future postings. You may wish to check the new address for some recent postings. Thank you for your understanding during this transition period.

Gabby Gifford TV Special

I am sorry that I missed the Gabby Gifford special. Is it saved and posted somewhere? Like many others, my own battle with aphasia started with a traumatic brain incident. I had a blood vessel burst inside a benign brain tumor. My doctors believe the tumor had been growing, undetected in my head for more than 30 years. The surgeon who removed the tumor said that the blood vessel “exploded” and the tumor “imploded.” My head filled will blood. Since blood wasn’t cut off to the brain proper, it technically wasn’t a stroke. However, I was left with all the symptoms and after effects of a stroke. I was in speech, physical and occupation therapy for many months. As an administrative officer at an academic institution, words were a very important part of my work. From the first the time I woke up in the hospital after the surgery I knew there was something wrong. I knew what I wanted to say, I just couldn’t find the right word. Oral communications were more difficult for me than written communications, so I started writing essays to describe my difficulties. Several months into my speech therapy, I watched a TV special on Bob Woodruff, the imbedded TV reporter wounded in IRAQ by an IUD. At one point in the show, he used the word aphasia to describe the difficulty he had in preparing his news reports. I told my wife, my caregiver, “That’s what I have.” When I asked my speech therapist at our next session, she started apologizing profusely and said that she thought that she had used the word aphasia to describe my condition. She said that taught her a lesson that she will never forget. She vowed that in her therapy sessions from then on, she would be very careful to let her patients and their caretakers know the names of their conditions. From the beginning of human history, humans have found that they must name something to have control of it. As soon as I found the word aphasia, I discovered “Aphasia Corner” and the “Aphasia Corner Blog” (URL < http://aphasiacorner.com/blog >). Knowing about aphasia has been a big help in the past 2 years of my recovery. In one essay, I described my battle with aphasia by saying that words were behaving more like cats than dogs. Dogs come to you when you call them; cats come to you when they want to come. This essay was featured at one point on the blog “Aphasia Corner”, along with a beautiful translation by Audrey Holland into an article that is “aphasia friendly.”< http://aphasiacorner.com/blog/living-with-aphasia-2/aphasia-friendly-words-are-more-like-cats-than-dogs-274>. The shortcut to my essay on my blog is< http://wp.me/p10snX-x > Other analogies, which I have used to describe the difficulty of communicating for someone with aphasia, are trying to put jigsaw puzzles together with pieces missing, or digging coal out of the dark, damp crevices of a mine on your hands and knees. As was noted for many of us, aphasia is not our only difficulty. Nine months after the brain tumor was removed, I had four tonic-clonic seizures within a 30 minute time frame, which left me unconscious in the hospital for three days. So now I was also dealing with epilepsy. For nearly one year I had no more major seizures, just many minor annoyances, such as sensory migraines or auras. Two days shy of the anniversary of the seizures I was diagnosed with early onset Parkinson’s disease. Three months later, I had to have a pace maker implant to help control a long-term A-Fib condition. I have had no major seizures since those first ones. However, as noted I have had numerous minor auras or absences. My neurologist keeps a very close watch on my seizure medication, and asks me to keep a log of my episodes. Coordinating my seizure medications and my heart medications has been a constant challenge. My battle with aphasia has had its ups and downs. For 40 years, I lived in the analytic world of academia. Immediately after the seizures, I found myself in a metaphoric world. Analytic, sequential and deductive thinking have been a real challenge. At times the metaphoric world completely overpowers the analytic world. At other times, I catch glimpses of the analytic world in which I formerly lived. From the Epilepsy Foundation and their magazine I found that I am not alone in this transformation. Although my aphasia is classified as mild, I find it interesting and sometimes discouraging to see that there is a great deal of work searching for treatments and cures of Parkinson’s, some work on Epilepsy, but very little on Aphasia. We need to spread the word about aphasia. I would not want to put undue pressure on Gabby Gifford or Bob Woodruff. However, because of their celebrity status, the American public is more likely to listen to them at the beginning of a campaign to combat aphasia. We need to begin the campaign by using the word aphasia. We don’t need to be afraid of the word. Remember the first step to controlling something is to name it. There is nothing to be ashamed of to say I have Parkinson’s. Why should there a stigma hanging over our heads, if we say, “I have aphasia;” or “I have epilepsy.” There! I’ve said it! “I have aphasia.” I am fortunate and I thank God that my aphasia is mild. Others that I know are not as fortunate. We must do all we can to help them.

Trying to Sleep on Half a Song

Back in July, 2011, I published two posts entitled “Bits and Pieces I and II. They dealt with the difficulties that I face when I have only a piece of something I’m trying to remember.

This posting is amplification on that idea. What happens if it is bedtime when you can’t complete the remainder of your half-remembered bit?  Recently, late one evening, just before bedtime, I started humming the tune of a Billy Joel song.  I had the melody down pat, but I could only remember the lyrics to 4 or 5 lines. I knew that those lines were not adjacent and I couldn’t fill-in the missing lines. It was too late for me to turn my computer back on. My wife, who  is my caregiver, knows if I get started on something on the computer, it is almost impossible for me to stop it, whether it is for dinner or bed. I had already stretched my allowed computer time well beyond its limit for the  evening. So I went to bed humming the tune and singing to myself the few lines that I knew (or thought I knew.) I had to go to bed with a half remembered song. It took me longer to fall asleep that night because my brain was engaged in this project of a half-remembered song that I had given it.

I find it amazing how our brain works, because in the morning I knew one line more of the song than when I went to bed and that one line contained the hint that I needed to remember the title of the song. The new line I remembered was “I go walking in my sleep.” So of course, the song was “River of Dreams” Right after breakfast, I started looking for the lyrics  to River of Dreams.” The lyrics of the first verse were the ones I was searching for:

 In the middle of the night

I go walking in my sleep

From the mountains of faith

To the River so Deep

I must be looking for something

Something sacred I lost

But the river is wide

And it’s too hard to cross

Even though I know the river is wide

I walk down every evening and stand on the shore

I try to cross to the opposite side

So I can finally find what I’ve been looking for

         Billy Joel makes no pretense that this is a Christian song. One of the later verses expresses his spiritual position. In spite of this, I am drawn to this song. It has a
haunting melody and communicates the depth of soul of an individual who is searching:

 I’m not sure about a life after this

God knows I’ve never been a spiritual man

Baptized by the fire, I wade into the river

That is runnin’ through the promised land

Having found the lost lyrics, I was able to sing the song to myself all day long. That evening, soon after dinner time, there was a TV special featuring the Cathedrals quartet performing one of their signature songs, which was written by Bill Gaither, “Trying to Get a Glimpse”.The lyrics to the chorus and the last verse express some of the same longings that Billy Joel expresses. I believe that Bill Gaither is trying to say that even though we know that there is a heaven, it is natural for us to want to see and know what’s on the other side:

(Chorus)

Standing by the river, Gazing cross the raging tide

Standing by the river, trying to get a glimpse

Of what’s over on the other side, other side

(Verse)

Well I was standing on the banks

When I saw that ol’ ship take my momma home

I was standing on the banks when daddy

Crossed the river and left me all alone

Now I’m standing on the banks

Just waiting for my ride to heaven’s golden shore

And I’m trying to get a glimpse of what’s over on the
other side.

I went to bed that second night singing the lyrics to Gaither’s “Tryingto Get a Glimpse”. I fell asleep more easily and faster this second night, and woke up singing both songs.Since this episode, I have created cheat sheets that have the lyrics to both songs, and I have been able to sing them any time I desire, and I’ve had no nights of fitful sleep at least over these two songs.

Gazing into the Abyss – a Deux

The title of this posting is my latest attempt at using a double entendre (a word or phrase with two meanings). It is also an attempt to get back to my former self. As I conceived the idea for this posting, I was well aware of the concept of a word with two meanings. I used to have a reputation as a great punster. A punster  likes to play with words, and is usually considered a master of the double entendre. However, this past week I had to Google “word with two meanings” to find the phrase “double entendre.” That particular phrase was not coming to me.

Due to my battle with aphasia, I lost some of my ease with words. Many times when I am searching for a word, I feel like I am in a cold, dank and dark coal mine, bent over on my hands and knees crawling into the small crevices of my mind. When I get to the back of a crevice, I have to painstakingly claw through the mother lode of words that I find there with a small pick and shovel for words to express my ideas.  Although the images of what I want to say are very clear in my minds, the words  I need to use to express those ideas are compressed into the hardened walls of  my mind.

At other times, almost the opposite occurs. I find words or ideas jumping into my mind like Asian carp jumping out of a stream into boats when the stream is disturbed. However, just like the Asian carp, once the words or ideas are in my mind, I don’t know what to do with them. That’s why I carry a small notebook with me at all times, so I can write down these words and ideas, so that I can return to them when I am in a better position to do something with them.

The double entendre that I was trying to use in this posting is the phrase a deux. The first meaning of a  deux comes from a French idiom for the phrase trong>pas a deux, which means a  dance for two. I believe the relationship between a patient and caregiver very closely resembles a dance for two. I will follow-up on this idea in another  posting.

The second meaning  of a  deux comes from the cinematic scene. Ever since the movies “Hot Shots” and “Hot Shots—Part Deux” became box office hits, Deux has come to be associated with the idea of a sequel. At this  level, I mean for this posting and any other follow-ups to be sequels to my earlier posting “Gazing into the Abyss.”

In movie parlance,  the word sequel can itself be a double entendre. A sequel can be a  continuation of the first movie, picking up the story where the first move left  it, or it can be an amplification of the first story. I intend my sequels to be  amplifications of the original posting. Oops, I let the cat out of the bag–there will be more than one sequel.

As a result of the posting Gazing into the Abyss,  several individuals have commented that I led them to the brink of personal  abysses and left them looking into the black hole of themselves. That is  definitely not what I intended. What I was trying to say in the last paragraph  of the posting, was that one of the most important things I can do is stand on  the edge of the abyss waving a yellow caution flag and yell: “Stop gazing into  that abyss, or else it might start gazing back into you and begin to draw you  into it.”

I am not alone in this task. Fortunately, through the close-knit communities of patients with  aphasia and epilepsy and their caregivers, I have encountered a number of other  individuals or groups that are working diligently to wave yellow flags and warn others. In several follow-up postings I will highlight two such individuals,  Rea and Tara, with their respective blogs “Bendedspoon” and “Findingstrengthtostandagain.”  I will also do follow-up postings about two organizational or group blogs or  websites. In case you can’t wait to get a head start on these last two  categories, they are Aphasia Corner at <www.aphasiacorner.com> and the Epilepsy  Foundation of America at <www.epilepsyfoundation.org.> (If you check  out aphasicorner.com I invite you to read my essay that is featured in the lower right hand corner of the front page and also available at <http://aphasiacorner.com/blog/living-with-aphasia-2/aphasia-friendly-words-are-more-like-cats-than-dogs-274>

)

The Cat Came Back

     During the past two weeks, I engaged in an all-out war with my blogs, and the blogs won. During part of that time, I suffered from partial writer’s block. I had several decent ideas to start postings. However, as I approached the halfway point in those postings, I would get another idea and the posting would take off in a different direction. When I reviewed the revised posting the opening didn’t quite
fit with the new conclusion, so it was back to the drawing board.

Finally, I thought I had one of the battles won and I attempted to post “GAZING INTO THE ABYSS” <http://byonepilepsy.wordpress.com/2011/06/18/gazing-into-the-abyss-2/>. Since I said “I thought,” you probably have guessed that I was wrong. The blog won again. In my first attempt to publish a particular posting, I uploaded a word document to the blog. When I previewed the posting before publishing it, I found several errors. One of the errors was the inclusion of an extra word, which happened to be the word “that.” So I tried to edit the posting on the wordpress.com site. When I thought I had all the corrections made, I published the posting. However, when I checked the blog, I was dismayed to find two identical postings, both of which were incorrect and contained the superfluous “that.”

I deleted one of the incorrect versions and edited the other one before hitting the publish button. I was even more dismayed when I checked the blog and found three identical,
but incorrect versions had been published. My next mode of attack was to delete all three of the incorrect versions and upload a correct Word document version. When I checked the blog, I found that only one copy of the posting had been published. However, it was the still the incorrect version. One more attempt and I believe I got it right. <http://byonepilepsy.wordpress.com/2011/06/18/gazing-into-the-abyss-2/>.

All the fussing with the different versions and the “that” which kept coming back reminded me of a folk song that I remembered from the mid 60’s. “The Cat Came Back” was sung by the New Christie Minstrels in their 1963 album “Tell Tall Tales!” By the time the New Christie Minstrels recorded their version of the song, it was already 70 years old and had a history of repeated appearances.

 Everyone that sang the song seemed to have their own lyrics. These lyrics illustrate “purrfectly” the lesson of the song:

Stanza 1

Now Old Mr.
Johnson had troubles of his own.

He had a yellow
cat that wouldn’t leave his home.

He tried and he
tried to give the cat away.

He gave to a man
going far, far away.

Chorus

But the cat came
back ’cause he wouldn’t stay away.

He was sitting
on the porch the very next day.

Stanza 2

Now, old Mr.
Johnson had troubles of his own.

He had a yellow
cat that wouldn’t leave his home!

A special plan
with deception was the key.

One little
cat—how hard could it be?

Chorus

But the cat came
back. We thought he was a goner,

But the cat came
back, he just wouldn’t stay away.

 

     I apologize to all of you who remember this tune because now you won’t be able to get it out of your head. It will be back tomorrow. It just won’t stay away.

For those of you too young to remember 1963, or old enough but can’t or don’t want to remember it, here is an award-winning animated short feature based on the song <http://www.nfb.ca/film/the-cat-came-back/>. Once you hear the song, the tune will be there to stay with you. It just won’t go away.

Bits and Pieces Part I

As I have stated in previous posts, one of the reasons that I started this blog was requests from professionals working with persons with aphasia and their care givers to describe what aphasia looked and felt like from the inside. This post addresses one specific question that I was asked. The question was: “How do I proceed when I face the dilemma of not being able to think of the right word or not being able to put together my thoughts on a particular topic?”

Let me try to explain the process I use by giving you two examples. The first example occurred last week and I will describe it in this post. The second example happened several weeks ago and I will describe it in another post.

Now to the first example: I woke from an afternoon nap with a melody running through my mind. I knew it was a song from the 60’s because I remember playing it as a teenager on my piano in my parents’ basement. Although I could remember playing it and hearing it on folksy radio stations of the era, I just could not remember the title or really any words from the song.

After humming the tune repeatedly, one phrase from the song finally came to me. The phrase was “jigger of gin.” I don’t know why this bit or piece of the song was the first to come back to me because I have never been a drinker. I have no idea what gin tastes like.

My wife and I had been invited out that particular night for dinner with a group of friends, so on the way to and from the restaurant I kept humming the tune silently putting the phrase “jigger of gin” in whether it made sense in the tune. When we got home that night it was too late to get on my computer to check out the phrase that was stuck in my head. I went to sleep humming the tune.

The next week morning I was still humming the tune and before I got on my computer, a second phrase and the name of the group that sang the song came to me. The second phrase was “Scotch and soda” and the group that sang it was The Kingston Trio.

I went to my computer at this point and was able to find a You-Tube video of The Kingston Trio and all the lyrics to the song, that was variously named “Scotch and Soda” or “High as a Kite Can Fly” on different websites.

So in this case I struggled trying to find an answer, until bits and pieces started coming together. When I thought I had enough bits, I enlisted the aid of the internet to fill in the pieces until I had a complete picture.

Bits and Pieces, Part II

I began the previous post, entitled Bits and Pieces, Part I, by addressing the specific question of how do I proceed when I face the dilemma of not being able to think of the right word or not being able to put together my thoughts on a particular topic? The simple answer was I used the bits and pieces that I did have until I had enough information to be able to put together the whole puzzle. I tried to rely heavily on my own memory and thought processes before enlisting outside resources like the internet.

Let me try to explicate the process further, by giving you a second example. This example occurred several months ago. I was trying to write an essay on different views and definitions of liberal arts.

Because I had been working on this essay for a number of months, I had the ideas generally formulated. What I wanted to do was introduce the topic by referring to a scenario that occurred many times in ancient Greece when two protagonists had differing ideas. They aired those ideas in a public setting. This is where I was lost. I couldn’t think of the word to describe that public setting.

So with this information, I went to a friend to ask him what word was I looking for. He gave me a word. Unfortunately, it was not the word I wanted. The word he gave me was forum. It was a good word, and perfectly described the process that I was trying to describe. Why wasn’t it the right word? Unfortunately, this word is Latin and not Greek.  But now I had enough information to go to a second source who knew right away the word for which I was searching. The word was agora. In Greek, it means “market place.” In each city in ancient Greece, there was an open area where merchants came to sell their wares. This area was the same place where orators would come to try to get people to buy their thoughts. So now I had two words that I could use, one Latin and one Greek, depending upon whether I wanted to reference ancient Greece or ancient Rome.

What was my process in this example? As soon as I had a general idea of what I wanted to express, I took those thoughts to a friend to ask for help in finding the best way to express my thoughts.

In the terminology of a popular television show, in both cases, I used a lifeline. The difference was when I employed that lifeline. The first big lesson that I have learned from this whole experience is that eventually everyone will need a lifeline. The second big lesson is that when you need a lifeline, use it!