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Aphasia

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Living in a French Impressionistic Painting

Living in a French Impressionistic Painting

By Baylis

 The past week has been bumpy. No full-blown seizures, however, a number of unusual things have been occurred. One morning I woke up at 7:00 AM. I got up and turned on my computer and wrote a response to a newspaper article that had appeared in paper a couple of days earlier. When I finished writing the response, it was 8:00 AM. I was a little tired and since my wife was still sleeping, I went back to bed and fell asleep. Sometime later I woke up feeling very well-rested and when I looked at the clock it was 5:25 AM. As I stirred my wife asked why I was getting up so early and I told her about the apparent time differential. She said that I must have been dreaming. I told her if I was dreaming I was sleep writing because I had a decently written essay on my computer responding to a newspaper article. When I checked my computer the essay was there.

At least three times in the past week, I have “awakened” from a nap or a zoning time-out and found myself living in a French impressionistic painting. What do I mean? Most everything further than 20 feet away had no definition to its edges. I could distinguish what it was, but it was not sharp. For example, this past Sunday morning on our drive to church, looking out my van window I felt like I was looking at impressionistic painting. I could tell that barns were barns but I could not be sure where the barns stopped and the outbuildings began. They all ran together.  After we got to church and I looked at the flowers on the platform in church, I could not tell when one flower stopped and another started, but I could tell that they were flowers. However, in our church we use a video projector with the words to the songs that we are singing. It was strange; I could read the words clearly. They seemed to be sharply defined. But the background pictures were fuzzy, just like an impressionistic painting. After church, we went home. I ate lunch and turned on a football game. We don’t have an HD TV, but when the camera was on the players and the game, everything was sharp. When it panned across the crowd, the impressionistic images returned. I feel asleep “watching” the game. When I awoke from my nap, having missed the entire second quarter of the game, the impressionistic images were gone. Everything had returned to normal and all images were distinct and sharp. When we went back to the evening service at church, I could distinguish clearly the barns and outbuildings on the way to the church. I could also see the flowers on the platform distinctly. I could also tell that they were standing in water in clear glass bottles that I had completely missed earlier in the day.

Are these mini-seizures or the side effects of medication? To really determine what’s going on, my neurologist wants to catch me during one of these episodes, so I am now scheduled to spend a week in a local neurological-science center for constant monitoring. After a week of being a lab rat I may have some more stories to tell. Stay tuned in for those stories.

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WHAT I KNOW IS RELEVANT

Living with Aphasia

What I Know is Relevant

By Baylis

This post was inspired by a response to an article that appeared in the August 31, 2010, daily e-edition of the Chronicle of Higher Education, entitled “As Literacy Declines, Faculty Members and the Media Share the Blame.” It can be found on the CHE website at http://chronicle.com/blogPost/As-Literacy-Declines-Faculty/26619. The general tone of the CHE article reminds us that for years it has been fashionable in educational circles to decry students’ lack of communication skills, both verbal and written. However, the comment that really got under my skin was one which stated, “If you can’t communicate what you know, it is irrelevant.” My first reaction was to scream “WHAT I KNOW IS RELEVANT.” My comment, addressed to the individual referenced above, was “I’m sorry that I can’t communicate what I know to your satisfaction. However, right now that is due to something that is beyond my control. I suffer from Aphasia as a result of a traumatic brain episode. Please work with me and perhaps we can both learn something.”  My second reaction to the article and other comments was to remember a song that I used to listen to on the 8-track tape deck that I had in my old pick-up truck. I could still remember some of the words of the chorus of Joe South’s hit: “Hey, before you abuse, criticize, or accuse, walk a mile in my shoes.” I looked up the lyrics of the song and I was pleasantly surprised at the lyrics of the first verse:

“If I could be you and you could be me for just one hour

If we could find a way to get inside each other’s mind

If you could see you through my eyes instead of your ego

I believe you’d be surprised to see that you’d been blind.”

This is the lesson that I would like others to learn. As we interact with others, before we summarily dismiss them when they have difficulties in communiation, we need to learn where they are, and from where they came. They may have legitimate communication challenges such as aphasia, dyslexia, or some other deficiency. We need to get to know them so that we can understand them and walk a mile in their shoes. We may be surprised at what we can learn from each other.

On my education blog, I am posting an essay with essentially the same ideas as the ones in this posting, but directed more specifically to educational settings. In that posting, I will suggest that some of my educational colleagues will accuse me of not understanding how important it is to judge all students against the same standard. Let me assure you that I have walked many miles in those shoes. I used to believe that all students had to be tested under the same conditions. I have since walked several miles in the shoes of a challenged individual. Aphasia is a communication deficiency. It does not affect intellect. It generally only affects the ability to communicate. This experience has completely changed my view of accommodations in educational settings. I now see how important they are. Institutions and individual faculty must not overlook or ignore appropriate accommodations for the students who need them. So sufferers speak up for yourselves and demand your rights. If you can’t speak up for yourself, your caregivers have a responsibility to be your spokesperson. Make sure that get all of the opportunities and accommodations that are due to you. It is not only your right, it is the law. However, I have also come to another conclusion that I will suggest in an upcoming blog, “It is impossible to legislate commitment. The best you can hope to get from legislation is minimal compliance.” Until the minds and hearts of the general public are changed, people with challenges will continue to be treated like second-class citizens, and most of the relevant knowledge they possess will be wasted. It took a traumatic brain episode to bring me to my senses. I hope and pray that others do not have to go through my experience, to realize what they are missing.

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Living with Aphasia- Chopping Down the Telephone Tree

Living with Aphasia

Chopping Down the Telephone Tree

By Baylis

After three recent telephone calls that were very frustrating, I had one of those “Wild: Out of the Blue Thoughts.” What if George Washington had chopped down his father’s telephone tree instead of his father’s cherry’ tree?

Telephone trees are those automated response systems that you get when you call many businesses or professional offices. You know the ones, where a very polite individual with either a very pleasant or super business-like voice says, “Please listen to the following options and select the most appropriate. If you want       information about XYZ, press 1; if you want information about PQR, press 2; if you want information about ABC, press 3; and usually after what seems to be half an hour, if you want to speak to an operator, press 0. Even before my aphasia, I had problems with these telephone trees. Many times, I had difficulty in relating my problem to the options provided, so most of the time I would dutifully press 0. After my aphasia I have two new problems: 1) I can’t follow the options. I don’t understand what they are saying as they are saying them; and 2) by the time the list is finished, I can’t remember what number corresponded with what option.  For awhile I tried writing down the options as they were listed. However, on many of these trees the speed at which the list was given was way too fast for me to follow and write down an intelligible note with corresponding number from the telephone pad. To get the list repeated, I couldn’t remember what number to push. I tried a plan that was suggested to me by a friend who said he had discovered a way around these telephone trees. He said he always punches in 0 repeatedly, as soon as the list starts and continues to press 0 until a real live person speaks on the other end of the phone. Before all of you start following this plan, the telephone companies are smart enough to know what people are doing, so they have recommended businesses change-up their options on their trees, sometimes even removing 0 as a viable alternative altogether.

Before everyone accuses me of hating all telephone trees, I will admit that there have been several times during my 40 years as an academic administrator that I have implemented them in offices that I was supervising. In each of these cases it was to ease the workload of an overworked receptionist who would have had to divert her attention from the steady stream of live students that had come into the office for service. Who do you want to offend the most, the student standing right in front of you or the individual on the phone that you can’t see and who can’t see you? The purpose of the tree was to direct calls to an appropriate person to handle the question, or in off-hour times when the office was closed, to get the customers to the appropriate answering machine or voice mail so that their question could be answered quickly the next time the office was opened. When we set up those phone trees, we tried to make them very simple and short with no more than 3 options, not like some of the ones that I have encountered recently. On one call last week, there were 8 options, not counting the option of talking to an operator which was option 7. If you pushed 0 on that tree, the list of options started all over again. “AHA, Tricky, we got you!”

I am convinced that some of these telephone trees would not pass muster with the Americans with Disabilities Act. Where’s George when you need him?

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Do Computers and Their Owners Look and Behave Like Each Other?

Do Computers and Their Owners Look and Behave Like Each Other?

By Baylis

I am sure many of you have heard the old joke and have seen the pictures that suggest, after a period of time, dogs and their owners begin to look and act alike. I am beginning to wonder if this is true with computers, especially the behavioral aspect. I am pretty sure that I don’t look like my computer.

However, living with aphasia and epilepsy, I am finding that my computer is imitating my symptoms. Recently it had a “grand-mal seizure” when it completely shut down.  It took a day in the “intensive care unit” to bring it back to consciousness and to restore some semblance of usability. Since that seizure, it has had numerous mini-seizures. It will “zone out” for about 30 seconds several times an hour. There appears to be no discernible pattern to these mini-seizures. The tech doctors are prescribing certain procedures to help prevent seizures. However, since they are not sure what the original problem really was, they will not guarantee their solutions will completely prevent another grand-mal seizure. All they can offer is a pledge that these procedures will help reduce the chance of a reoccurrence. For people with epilepsy, does this sound familiar?

Also after that grand-mal seizure, my computer is exhibiting signs of aphasia. It has “lost” programs and files. I know they are in there, but it takes lots of work on my part to find them. Does the computer really have a type of aphasia? Or is it my aphasia not allowing me to find what I want? Either way, the computer is behaving just like me. If my computer starts growing a beard, I am really going to be freaked out.

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Aphasia Is Not the End of the World

I admit that at times I need to remind myself that my mild case of aphasia is not the end of the world. Really, the only things I’ve lost are just some words, and usually it is only a temporary loss. I still have the things that really count in life. I still have my loving and supportive family. I still have a compassionate and praying church family. I still have considerate and helpful neighbors. I still have concerned and respectful colleagues and friends from more than forty years in higher education. I still have a team of knowledgeable and caring medical personnel. All of these people are individuals on whom I can lean. I have a real social network, not a virtual one. In addition to all these people, I still have my mind. A piece of advice to caregivers and friends, I really do not need sympathy. Please just be there when I need you, be supportive and encouraging at every step of the process, that’s the best gift you can give, and the thing I need the most.

When I run into road blocks on writing projects, I have learned that I can put those projects down and return to them later. I have also learned that after I have made a real attempt, I can then ask for help at any time. After several attempts when the words don’t come, I have also learned that it is okay to completely walk away from some projects. It’s not the end of the world.

Aphasia is not the end of the world. I am still alive and I am still me.

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We Are All Different

Living with aphasia and epilepsy has reminded me of a very important lesson in life. That lesson is that: “We are all different. One individual is not necessarily better than another. He or she may just be different.” What am I talking about? Four incidents in my life have reinforced this lesson. You might say that I have been a slower learner.
The first incident was an automobile accident more than thirty years ago. I was stopped waiting to make a left-hand turn and I was rear-ended by a car doing forty miles per hour. Due to the whiplash caused by the accident, the back of my head struck the head rest, breaking it off. In doing so, I suffered a serious concussion that permanently affected my sense of taste. Ever since that accident, everything has tasted salty. For more than thirty years, I have not had to salt any food at the table. For a short time after the accident, I had a memory of what food “actually tasted like.” After thirty years, the memory of “true taste” has faded away. What should have this taught me about the difference in people? We observe the world through our senses. My sense of taste is different from yours. Because they are different, that doesn’t make one any better than the other.
The final three incidents are all related to just one episode. A blood vessel in a benign tumor in my brain burst, giving the appearance of a stroke and leaving me with many of the same after effects as those of a stroke. The first of those effects is that my physical ability to get around has been diminished. Prior to this episode, I was considered athletic. Until my knees gave out a couple of years ago, I had played fairly competitive basketball and softball for more than fifty years. Over the years, I had four different college basketball coaches invite me to come in and teach their teams how to set picks. Today I need a cane to walk about outside our house. If I am going to walk any distance, I need a stroller with a seat in case I must sit down. Today I have a handicap parking hang-tag to permit us to park in those special parking spots. Was the athletic me any better than the challenged me? I am still me. I am just different.
A second result of either the burst blood vessel filling my cranial cavity with blood or the subsequent removal of the benign tumor is a mild case of aphasia. Aphasia literally means “a loss of words.” It is a communication disorder which affects my ability to use or understand written or oral language. It hasn’t affected my mental capacities, just my ability to use words in a timely fashion. I can still analyze situations as well as I did before. I just can’t respond to them as quickly as I previously did. I know what I want to say, I just can’t find the right words to express it quickly. I need more time to write articles like this, but I can still write. Was the old me better? I am still me, I am just different.
Also as a result of this episode, I had four grand-mal seizures and am now labeled epileptic. Although I am on anti-seizure medication, my wife and I must be on guard for the signs of another seizure. Since not enough time has elapse since my last large seizure, my driving privileges have been taken away from me. Does not being able to drive make me less of a person? I don’t think so now. Prior to this happening to me, I might have thought so.
Before these incidents and after effects, I know I thought differently. I now see why we need to do everything we can to “even out the playing field” in school and work situations for people with challenges. I am more sympathetic to students who need extra time on tests and assignments. They are not lesser persons. All of their capabilities have not necessarily been affected. They can be just as smart. They may just be a little slower. They may even see or taste things in a new and different way that can lend a new perspective to a problem and lead to a new and different solution. My continual salty taste has had one advantage. Coffee that tastes bitter to other people actually tastes okay to me.
For people who see differences as signs of being less of a person, I am not recommending that we need to beat them up one-side of their head and down the other until they change their mind, even though that’s what it took for me.