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B. Baylis

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Living with Aphasia: Loss of Control

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. I have been struggling with the following question for a couple of months. How do I express frustration without it sounding like despair or depression, and yet not minimizing those feelings of frustration?

Aphasia literally means loss of words. Practically, I have found it means loss of use or control. Ever since the earliest of times, even in the Garden of Eden, the first step to control or to use something was to name it. If I can’t remember the name of something, how can I ever expect to be able to use it or control it?

Prior to two years ago, I believed that God had given me a greater sense of freedom. If I felt the urge that it was time to change jobs within academe, I could take the initiative and try to get a new job. Today, I do not have that option. Aphasia, fatigue and age now preclude me from working at those jobs that I loved and enjoyed within the academy. Honestly, I am sad and frustrated with that prospect.  But I am not depressed, which is the question the neurologists and therapists keep asking me. I am grateful for the opportunities that have been opened to me prior to this, as well as the work that I have been able to accomplish up to now.

I also want to make something clear at this point. Although I may be frustrated, my frustration has not taken away my sense of gratitude for the life that I have lived, the work that I have accomplished, or whatever lies in front of me. A recent episode of “Criminal Minds” ended with what I found to be a thought-provoking conversation. One FBI agent was asked if the victim that they had just saved was okay. A second agent involved in the rescue responded that the victim was strong but scarred. The first agent then said, “You can’t come through something like this without getting scars. But scars only show us where we have been;, they do not dictate where we are going.” Another agent then closed the show with a Ralph Waldo Emerson quote by saying, “What lies behind us and what lies before us are tiny matters compared to what lies in us.”

At times, I feel scarred, but I know it’s not the end of the road. I don’t necessarily know where the road is going. But I am grateful for the opportunity to once again play the game that my wife and I used to play many years ago when we took Sunday afternoon car rides. Whenever we came to an unfamiliar intersection, we would look at each other, pick one of the roads and say to each other, “Wonder where this road goes?”

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When and How to Tell the Grandkids

This past Thanksgiving my wife and I split a week between our two daughts and their families. One daughter has a daughter who is 13. The other daughter has 2 boys, aged 10 and 6, a daughter aged 4. Our daughters, who live over 500 miles away from us, are only 20 miles away from each other. Until two years ago, with my schedule in the academy, it was always easier for my wife and I to travel and visit them for the holidays. We would be there for both Thanksgiving and Christmas.

The year 2009 was the first break in that routine. Thanksgiving came eight months after my traumatic brain episode. I had been cleared to drive some, but not for long periods at a time. Since my wife does not like driving in snowy weather, we decided that the weather would be a better bet in November. So we told the kids that we would come for Thanksgiving. We then scheduled a number of required follow-up examines  for me in December and January. So we had our first experience of CHristmas in November.

It really turned out to be the right decision because on December 30, with my wife  driving me home from a doctor’s appointment, I had a grand mal seizures. I was unconscious, so she called 911 and the ambulance arrived very quickly. On the ride to the hospital, I never regained consciousness. In fact I had three more seizures in the ambulance before I got to the hospital.

Throughout 2010, I had to fight the effects of epilepsy, fatigue, auras and the uncertainty of what might  be next. As Thanksgiving and Christmas approached, my wife and I decided to travel over Thanksgiving and stay at home over Christmas.  Our daughters agreed completely with the decision. The grandkids especially the three younger ones were dissapointed.

Throughout the Thanksgiving visit ,it was obvious to everyone that something was different with Pop Pop. He was constantly fatigued. Noise, bright lights and commotions bothered him. He could not play the video games with the boys that he used to play with them for hours.

Our older granddaughter is a very smart young teenager. She went to church with us the Sunday  after Thanksgiving. My wife and I went to the church we went to when we lived in that area 15 years ago. We saw many old friends most of whom knew what had happened to me. Our granddaughter overheard several conversations where people were asking about particulars of my condition. In one of those conversations, the individuals said that it was a miracle that I was still alive and doing so well. I didn’t think about our granddaughter being right there, so I replied that I had four different doctors tell me that they had no medical explanation as to why I was still alive. I continued by saying that I told the doctors I understood what they were saying, but I knew why I was still alive.  Three of my doctors said tht they understood the role God played in medicine.

Later that day, our granddaughter asked her mother if Pop Pop had epilepsy. Out granddaughter had some idea of what that meant because her father’s sister has it, and one of her cousins had tried to explain it to our granddaughter when she asked him why her aunt didn’t drive anymore and why  he had to do all the driving. Our daughter told our granddaughter about my seizures. Later our granddaughter told our daughter what she had heard at the church. She also told our daughter that she knew why Pop Pop was still alive. “He is still alive, because he is so special.”

When my wife and I got home, in a conversation with our daughter who is the mother of the three kids, I asked her if they had asked any questions about why Pop Pop couldn’t play with them like he used to. She said that they hadn’t  asked any questions. The only thing the boys  said was that Pop Pop was tired all the time. The six-year  made a  comment that  “all old people with white hair get tired” 🙂 (that was his great wisdom!)

I have a question for those of you who have had more experience in dealing with epilepsy of grandparents who are not constantly in contact with young grandchildren. When,  how much and who should tell the grandchildren?

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Welcome 2011!

It’s a new year. Welcome 2011!. I not really sad to bid farewell to 2010. I hope and trust that 2011 will be  a better year than 2010. My one resolution for the new year is to work to make that so.

This year is starting out very differently than the way  2010 started. I spent January 1, 2010, the same way I spent December 30 and 31, 2010, as well January 2 and 3, 2011, in a hospital bed unconscious due to 4 grand mal seizures within a 30 minute time span on December 30.

I spent much of 2010 learning how to live with epilepsy, sometimes more successfully than other times. Although I didn’t have any more major seizures during 2010, I did battle balance issues and auras most of the year. By the beginning of December, my neurologist seemed to have found the right combination of seizure medications to take care of the auras. I have not had any since Thanksgiving.

The biggest problems that I seem to have now are increasing  memory problems and tremors. My doctors are not sure whether these are a direct result of the TBI from March, 2009, or side effects of medications. SInce the auras are under control and I have had no major seizures, the doctors are somewhat  hesitant to make more changes to my medications. I can live with the tremors. I am doing exercises to try to improve my memory. I have also learned to keep a notebook pad and writing instrument with me at all times.

This is not what I envisioned 2010 and 2011 would be. However, this is where I am and what I have to deal with. So I must make the most of it. A friend recently sent me an email  with a couple of jokes in it. The first was  that it had been snowing at this house for three days. His wife was doing nothing but staring through the window. He said if it didn’t stop snowing tomorrow, he would have to let her in. THe second joke was “Life may not be the party we had hoped for, but while we’re here, we might as well dance.”  Even though I must also deal with Afib and the arrhythmia behavior of  my heart, as well as the epilepsy and aphasia, I will just have to dance more in 2011. Will you dance with me?

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This Is Where It All Began

IIn the aftermath of a traumatic brain episode (a blood vessel in a benign tumor exploded creating all the symptoms of a stroke) I was left with medical and the therapeutic community described as a mild case of aphasia. I know they are correct in that assessment because I know people with severe, progressive aphasia. But for someone who lived off the use of words for 40 years, it completely changed my life.

IAs I reread it, I remembered the conversations that it engendered with my speech therapist when I first wrote it. That reminded me of a comment Glenn Fry of the Eagles made when he came onto stage after an intermission during the concert the Eagles gave during their “Hell freezes Over Tour.” He looked at the audience and slowing said, “This is where it all began.” The audience broke into applause before the band played the first note of the song, “Take It Easy.”

At another point in the concert, Fry gave a hint at the rationale of the title off the tour. He said, “Just to set the record straight, we never broke up. We just took a 14 year vacation.”

The next posting “Words are More Like Cats Than Dogs” is “Where it all began.”  As I worked with a speech therapist for months after my traumatic brain episode to try to regain what I thought was passable use of words and language, the following idea started ruminating in my head.

Words are not doing what I want them to do. They are being obstinate and doing what they want to do. Then it hit me. They are acting like cats. They don’t necessarily come to you when you call them. They come to you when they are good and ready to come to you.

As I discussed this with my therapist, she challenged me to describe the process that I was using to try to overcome this apparent difficulty.

As she challenged me to improve, she would have me do exercises over and over again. That’s when I remembered the things that I heard or had been told throughout my life time about practice. Slowly the stories about how and why practice was useful came back. As they came back, I would make notes about them. From those notes came this first essay that described my journey with aphasia.

As a number of individuals have noted, my 40 years in the academy show clearly in my writing. One editor with whom I have worked, accused me of having the Russian novel virus. I can’t say hello in less than 750 words.

However, as many within the aphasia community have read this essay, they have found it very helpful in dealing with their patients or loved ones. This past summer, Dr. Audrey Holland translated my essay into an aphasia friendly format. I encourage all of you to  look at her translation. It is found at     http://aphasiacorner.com/blog/?s=Words+are+more+like+cats

I have found Aphasia Corner encouraging and helpful. I encourage everyone I know that has the smallest tie to aphasia to subscribe to or bookmark their website http://www.aphasiacorner.com  One of the first things I learned is that I am not alone. There are many others who have been touched by aphasia.

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Words Are More Like Cats Than Dogs

Words are more like Cats than Dogs

A Commentary on Aphasia

Bayard (“By”) Baylis ?2

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.

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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.