By's Musings

Neurology

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Happy New Year!

The Year 2011 is over, and Year 2012 has begun.

         If you have read any of my previous postings, THANK YOU. I really do appreciate the time and effort you have spared from all the important things that you could be doing to read about the things that are dear and close to me. I pray that you will find a nugget now and then that you can use that in some small way will repay you for your time and effort.

If you are new to my posts, please allow me three paragraphs to let you know what you will find in my posts. The three things that I hold closest to my heart are my belief in God, my wife and family, and the enterprise of education. Since a traumatic brain incident (TBI) in March 2009 and several follow-up events, I have found myself facing a taxing mental battle, in addition to living daily with aphasia, epilepsy and Parkinson’s. After spending my entire adult life training, thinking and writing in an analytic, sequential and deductive world, I found that I was now exiled to the land of metaphors.

Living and thinking in terms of metaphors was a shock to someone who was brought up in and agreed with the teachings of John Locke when he said, “Metaphors are the worst abuse of language ever invented and need to be annihilated and expunged from our usage.”  As I have now studied metaphors, I have come to a very different conclusion than Locke. Learning theorists and brain scientists have found that we learn something new by tying it to something we already know, something that is already in our heads. This is precisely what a metaphor is. Thus metaphors were a way of thinking long before they were a way with words. Therefore I, the new feeble Don Quixote, am riding off on a pathetic horse on a new quest to restore metaphors to the high esteem with which Aristotle viewed them, when he said that the proper use of metaphors was the highest form of genius.

Returning to my New Year’s Greeting, as I wrote “the year 2011 is over and 2012 has begun”, I was reminded (metaphor attack) of two similar statements. The first is from Jean Valjean’s soliloquy in “Les Miserable,” when he steals the bishop’s silver and decides to skip out on his parole. He throws up his hands and says: “No more is Jean Valjean! Another story must begin! I must escape my life of sin.” I find it ironic that he is planning this escape financed by stolen silver. From scriptures, we know that the only way to escape a life of sin is through Christ. Paul wrote in II Corinthians 5:17 (KJV) “Therefore if any man be in Christ, he is a new creature; old things are passed away; behold all things are become new.”

         Welcome to my world. The title “By’s Musings” comes from my Nick Name “By.”  Although my first name is spelled “Bayard,” it is pronounced “By’-ard.” Please call me “By.” All my friends do. Settle yourself down in your favorite easy chair, have a hot cup of real coffee (I wish I could, but the closest thing to real coffee that I am currently permitted to drink is decaf) and let’s talk, friend-to-friend.

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Evolution of Normal

The 12/01/11 posting on FindingStrengthtoStandAgain’s Blog, “The Day the Wind Caught Fire” <http://findingstrengthtostandagain.wordpress.com/2011/12/01/the-day-the-wind-caught-fire/#comments> is a must read for all individuals who have suffered a traumatic brain incident. The caregivers of these individuals should also read this inspiring posting.

I must admit my initial reaction to the title was that the posting was going to be about the Santa Ana winds and fires that are devastating parts of California currently. When I opened the post and saw the first picture, I was convinced that the posting was going in the direction of talking about wildfires. As I read the posting, I discovered that it was indeed about wildfires, but not the physical wildfires that scar our earth. It was about the internal wildfires which strokes or other traumatic brain incidents (TBIs) precipitate.

Those of us who have had a TBI and our caregivers know all too well about those wildfires. Tara is the epitome of a great teacher. She has had the courage to share her wildfires with us, so that we can learn from them. In this posting, she shares two lessons with us.

The first lesson relates to educating everyone about the after effects of a TBI. She correctly states each individual is different. She encourages everyone to work to see that the handbooks and guides given out to predict a TBI survivor’s outcome should not be one size fits all. We need to set our sights above those predictions, and remember everyone will progress differently. Each TBI affects a different area of the brain in different ways.

The second lesson struck home with me. Individual TBI survivors and their caregivers must have patience and take time to understand how the survivor’s “definition of normal will evolve.” I am still struggling to learn its implications in my life.

After spending 40 years in the academy immersed in analytical thinking, it was very difficult to wake up in the hospital after the removal of my brain tumor and find that I was now living in a metaphoric world. After all, metaphors were just the word pictures which you added to the end of your reports to help the uninitiated understand what you were trying to say. They were the icing that you put on the top of the cake that you baked in your analytical, sequential, deductive oven.

I have tried very hard to return to the analytic world and at times I find myself visiting it. I have not yet been able to make the warp jump into a more permanent return to the only world that I knew for 50 years. However, as I explore my new metaphoric world, I have found some very interesting things.

In James Geary’s book I is an Other: The Secret Life of Metaphors and How It Shapes the Way We See the World,” I discovered that “metaphors were a way of thought, long before they were a way with words.” From my study of learning theory, I should have known this. We learn by tying new and unknown things to old and known things. Metaphors are a comparison of something unknown with something we already knew. Understanding this, life in a metaphoric world became more tolerable. My normal evolved. I haven’t stopped striving to regain pieces of the analytic world I left behind, but I can now live peacefully in my new world and honor it.

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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.

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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.

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Real Meaning of Words

My latest battle with the after effects of a series of taumatic brain incidents (ruptured blood vessel in a brain tumor, subsequent surgery to remove tumor, 4 tonic-clonic seizures) is a decline in my ability to think deductively, analytically, quantitatively or sequentially and a tendency to think about everything in terms of metaphors, analogies or pictures. In searching for something that I couldn’t find , I came across this video  http://www.youtube.com/watch?v=DachRQNBGP8&feature=related that I believe expresses the real meaning of some very common words. I also don’t think that you have to live in a metaphoric world to appreciate its message. Grab a Kleenex box before watching it. Some of the pictures will make you laugh, others will make you cry.  But that’s life.

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Relationship between patient and caregiver: pas a deux

In a previous post I suggested that the relationship between a patient and caregiver must be a pas a deux, a dance for two. If any dance for two is going to work, the pair must move and work together, even though each individual has his or her own responsibilities. In a pas a deux one individual must follow the lead of the other, generally in the relationship between the patient and caregiver, the caregiver will provide leadership.The patient must have confidence in and respect  the leadership provided by the caregiver. However, the caregiver must read carefully the signs from the patient and have the courage to make any adjustments must be made. The patient needs to be aware of where the pair is going and what they are doing. If the patient detects deviations from the destination or the route, the patient must be ready to communicate this with the caregiver. If this pair is to work well together, they will find that it is necessary to practice. A good pas a deux is not a once and done event.