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.
Communication
Alfred Hitchcock School of Education
Alfred Hitchcock
was known for his wise and pithy words of advice about film-making. If one does
some minor editing and reads between the lines of the following Hitchcock
quotes that I found on the BraineyQuote.com website, one gets a picture of the educational philosophy of many instructors and institutions of higher learning. For the first several, I have included my edits [in brackets]. I have left a number of
unedited quotes, and invite you to do your own editing.
- Always make the audience [students] suffer as much as possible.
- I never said all actors [students] are cattle; what I said was all actors[students] should be treated like cattle.
- I aim to provide the public [students] with beneficial shock.
- The length of a film [lecture] should be directly [indirectly] related to the endurance of the human bladder.
- The paperback [Kindle] is very interesting, but I find it will never replace the hardcover book. It makes a very poor doorstop.
- When an actor [student] comes to me and wants to discuss his character [assignment; grade]. I say, ‘It’s in the script [syllabus].’ If he says, ‘But what’s my motivation?’ I say ‘Your salary [ learning; grade].
- Television [education] has done much for psychiatry by spreading information about it, as well as contributing to the need for it.
- Television is like the American toaster. You push the button and the same thing pops up every time.
- Give them pleasure—the same pleasure they have when they wake up from a nightmare.
- We seem to have a compulsion these days to bury time capsules in order to give those people living in the next century or so some idea of what we are like.
- Self-plagiarism is style.
- A good dinner is when the price of the dinner, theatre admission, and the
babysitter was worth it. - Television is like the invention of indoor plumbing. It didn’t change people’s habits. It just kept them inside the house.
- There is nothing to winning, really. That is, if you happen to be blessed with a keen eye, an agile mind, and no scruples whatsoever.
- Revenge is sweet and not fattening.
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.
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.
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.
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 his week.
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 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, Idon’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 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. Thus, 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 an amplification 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, with 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 of one their issues and also available at <http://aphasiacorner.com/blog/living-with-aphasia-2/aphasia-friendly-words-are-more-like-cats-than-dogs-274>)