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July 5, 2010 By B. Baylis 2 Comments

For Me, Aphasia is like solving jig saw puzzles with pieces missing

For Me, Aphasia Is Like Solving Jig Saw Puzzles with Missing Pieces

When asked what it’s like living with aphasia and trying to speak or write, I describe it by saying that it is like putting together jig saw puzzles with pieces missing. One trouble with both writing and jig saw puzzles is that you usually don’t know pieces are missing until you get pretty far into the process of writing or solving the puzzle. Like most people, I do jig saw puzzles section by section. After I work on a section for a while, sometimes, I get to a particular place and I find a puzzle piece is missing. I can’t find it. It is just not there. I have hundreds of puzzle pieces spread out in front of me. With writing I get to a particular place and I can’t come up with the right word. I have thousands of words running through my mind. Whether with jig saw puzzles or writing, I am shuffling through all those pieces and words, but the right one that perfectly fits in that one place, is not there. What do you do with jig saw puzzles in this situation?
Most people would usually start looking at another part of the puzzle and try to find puzzle pieces that fit into that new part of the puzzle. If I do that enough for a puzzle, I will use up all the pieces that were in the box, and then I would know for certain that a piece or two are missing. After searching the house for the missing pieces, I might get out the other puzzles and see if the pieces got mixed up in those puzzle boxes. After all that, I really only have three choices: 1) pick up the puzzle pieces and put them back in the box and mark the box to indicate that a piece or two is missing; 2) go to one of those websites that advertize that they can replace missing puzzle pieces and purchase new pieces; or 3) pick up the unfinished puzzle and throw it away.
With my writing, I operate similarly. When I find myself stuck on a word, I will finish the remainder of the essay and then come back to the part with the missing word. Sometimes by then I will have found the word. Sometimes I haven’t. At that point of time, I will start searching in earnest through the word helpers like a cross-word dictionary or a thesaurus to try to find the right word or words. If that doesn’t work, I will set the essay aside and come back to it later. If I can’t find the right word or words then, I know at that point it is time to ask someone for help to find the appropriate word or words. That is like going to the puzzle websites to buy missing pieces. If that doesn’t work, I can either put the project aside and wait for a long time before I come back to it, or I trash it and forget about it.
Right now I have five or six projects on my computer that I have started but are in various stages of incompleteness. For the ones that are almost complete, I have sent copies to friends and former colleagues and asked them to review the projects and make suggestions. For the ones that I think still have possibilities but are in a much rougher state, I have set them aside, and I will come back to them off and on, at much later dates. Over the past months, I have looked at several essays that I have started and have decided that they are beyond repair or restoration. I have trashed them. I keep a file of ideas for essays, just the ideas, but not the real rough starts. Perhaps, I will come back to these ideas with a totally different approach at a much later date. This is a whole new way for me to operate, but it permits me to write and still cope with my mild case of aphasia.
If someone else has used the analogy of living with aphasia to missing jig saw puzzle pieces, I apologize for appropriating it. As an academic I have been trained to give credit for ideas to where credit is due. I did what I thought was a fairly exhaustive internet search on this topic and came up with nothing that was similar to the approach that I am taking in this essay. There were references to many exercises in aphasia therapy in which the individual with aphasia is asked to fill in a missing word in a simple sentence or to name a missing object in a simple picture. However, none of them compared the exercise to missing pieces of a jig saw puzzle. There were many references to autism as living with missing puzzle pieces, but none to aphasia that I could find. In dealing with autistic individuals or individuals with aphasia, I would in no way suggest throwing them away. Here is the place for a therapist or a care giver to provide the right degree of challenge and support to help the individual. An essay or a piece of work is far different from and far less valuable than the individual, although, for many of us, we find it difficult to separate ourselves from our work. It is a lesson from which we could all benefit.

Filed Under: Neurology Tagged With: Aphasia, Humor, Metaphor, Toys

June 7, 2010 By B. Baylis 6 Comments

Living with Aphasia: Words Are More Like Cats Than Dogs

Words are more like Cats than Dogs

A Commentary on Aphasia

Bayard (“By”) Baylis

Aphasia is an acquired communications disorder usually as a result of a stroke or a brain injury.  It strikes approximately 100,000 Americans each year. It is more prevalent than Parkinson’s disease, but fewer people are aware of it, and fewer still familiar with it. It affects different people differently. In my case, I have difficulty in remembering words on call, and in following arguments and directions, especially verbally. I need to see something in writing to be able to digest it slowly. For someone whose life revolved around the use of words and arguments this has been difficult. The following essay is my attempt to describe what it’s like trying to work with words and arguments suffering with a mild case of aphasia.

Due to a medical episode in March, 2009 and the onset of a mild case of aphasia, I have come to the realization that words are more like cats than they are like dogs. Cats are independent and dogs are dependent. One wag put it this way: “Dogs think they are people. Cats know they are better than people.” Dogs come to you when you call them. Cats come to you when they want to come to you. That is a perfect description of words to someone who is suffering with aphasia. Words come to you when they want to come. They don’t come to you necessarily when you call them.

Aphasia can be an insidious condition. Neurologists call it a deficit. People suffering from it lack the ability to find or remember the right words on demand. Much of the time the only person that recognizes that you are suffering from it is yourself.  You know what you are thinking and trying to say, but you just can’t find the right word to express your thoughts. You go ahead and say something that still makes sense but it is not quite exactly what you wanted to say. Because you are carrying on a rational conversation, the person to whom you are talking has no idea about the battle that is going on in your mind. It is a battle of wills. It is a battle of your will against the will of the words that are locked in the recesses of your mind. Words are acting like cats and are not coming to you when you call them. Hours or days later the right word comes to you, but it is too late to put a perfect end on that argument in which you were engaged.

Arguments are like geometric solids. You should be able to pick them up and look at the various facets of an argument, just like you can pick up a geometric solid and look at the various sides of the solid.  The person who is suffering from aphasia has difficulty in doing that, at least that is what I have found in my case. In addition to not being able to find the right word to use in a particular setting, I have had difficulty in understanding how particular words used by others fit into the argument that they are trying to establish.

The human brain is a marvelous entity. Now, there is an example of what I have been trying to say. “Entity” is not quite the word that I want to use, but I can’t find the right word so it will have to do.  How do words get into the storehouse of the brain? How do we learn new words? That question has been around in one form or another for more than 2500 years. Confucius answered this way: “What I read, I forget. What I see, I remember. What I do, I understand.” Words become part of our usable vocabulary as we use them repeatedly. What is happening in the brain? Every time we use a word, either a new synaptic connection is built, or an existing one is strengthened. What appears to be happening with aphasia is that something is interfering with those synaptic connections. Part of what is marvelous about the brain is that when one route is broken, the brain constructs another route. For dog lovers among the readers of this, “There is always more than one way to skin a cat.”

How am I learning to cope with aphasia? I remember an old joke, the throw-in line from a television commercial, and a piece of advice that my Babe Ruth baseball coach kept repeating and repeating. The old joke is the one about a young musician standing on a street corner in New York City with a violin case in hand. He asks an elderly gentlemen seated in the bus stop pavilion, “Excuse me, sir. How do you get to Carnegie Hall?” The elderly gentlemen seeing the violin case, replies wryly, “Practice, practice, practice.”  You may have seen the television commercial in which an amateur softball shortstop makes a few attempts at fielding ground balls and flipping the ball to second base to start a double play.  The amateur shortstop gets it right once and an announcer says, “Amateur athletes practice till they get it right.” The scene fades out and in fades the scene of a very recognizable professional shortstop.  He is taking ground balls and throwing them toward second base to start a double play. The announcer then says, “Professionals practice until they can’t get it wrong.”

In music, and athletics, it is universally accepted that to succeed, you must practice. In education, there is a debate about how much practice and repetition is good for students. However, research in cognitive science clearly shows that for new skills and knowledge to become second nature, sustained practice beyond the point of mastery is imperative. There are three keys to remember in this statement. The first key is that to obtain mastery in a new skill or knowledge it is necessary that we must learn through practice. One undeniable aspect of practice is time on task. We must spend time doing it. How long does the professional musician spend practicing? How long do the top college basketball teams practice? Coach Izzo, from Michigan State University, is known for his foul shooting prowess and the demands on his players to be able to shoot free throws. Coach Izzo has been known to make more than 100 consecutive foul shots. How did he get to be that proficient? When he was a high school player, he missed a foul shot that could have propelled his team to a state title. He vowed that he would never be in that position again. In his spare time, he began shooting foul shots and would not quit until he made 25 in a row consistently. When he reached that plateau, he upped the number to 50, and so on. When he became a coach, he “challenged” his players to do the same. Practice, practice, practice!

So, practice makes perfect. Not exactly. The second key is that through our practice, we must reach the point of mastery. It is not enough to just practice. I don’t think that I will ever forget my Babe Ruth League baseball coach. We practiced twice a week for several hours each. He would spend the first 30 minutes of each practice session teaching us skills. The next 30 minutes were spent going over skills that we learned in previous practices. The remaining 60 to 90 minutes of practice were spent in batting practice or in running through game situations. However, no matter where we were in the practice, if one of us made either a physical or mental mistake, Coach would stop practice right then. If the mistake was mental, he would ask the involved individual what he did and what should he have done. If the mistake was physical, Coach would stop practice and have us repeat the action. We would repeat it until we got it right several times in a row. I don’t think I can count the number of times that we heard Coach say, “Practice doesn’t make perfect, perfect practice makes perfect.”

The third key for new knowledge or skills to become second nature is sustained practice beyond the point of mastery. The concert pianist practices a piece until she can play it without thinking. The fingers just go to the right keys by themselves. She’s done with that piece, right? No! If she wants to maintain that piece in her repertoire, she must continue to practice it. I remember very well a conversation I had with a concert pianist that I had asked to become chair of a music department. After three years in the job, the individual asked to be relieved of the position. This individual was doing a great job as chair, so I asked why give it up. The answer was very quick and to the point. Not enough practice time. Instead of eight hours a day, the pianist could now only find two to four hours per day to practice. That was not enough to maintain perfection in the pianist’s repertoire. Sustained practice beyond the point of mastery is the key to success in the concert arena.

Time on task! Perfect practice makes perfect! Am I just talking about music or athletics? No. I am also not just talking about those disciplines that are considered practical or skill-oriented. I am talking about learning in general. Richard Light, a Harvard professor, in his book Making the Most of College, asks the question, “What is the difference between the typical Harvard student and the typical community college student?” His answer may not agree with your intuition. He said that the primary difference is not innate ability. He suggested that there were two significant differences. The first was the expectation of necessary study time. Most Harvard students come to college expecting to study many hours a week. The second difference was that most Harvard students spent the number of hours studying that they had expected to spend. Learning is important to typical Harvard students. They spend the time necessary to learn.

In terms of my aphasia, I must spend time with words. I must use them over and over again. I must find new words or forgotten words and use them correctly.  Perfect practice makes perfect!  What kind of practice? I find cross-word puzzles helpful. I find reading helpful. However, the most helpful exercise is writing. In writing, I have to find that right word by digging around in the cluttered closets of my mind.  I must use words until I am comfortable with them and they are comfortable with me. Just like cats, they must want to come to me and stay with me.

Filed Under: Neurology Tagged With: Aphasia, Humor, Metaphor, Therapy

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