Living with Epilepsy and Aphasia – June 13
This has been a good week and a bad week. Oops, I think someone has already started a story something like that (What was it? “These are the best of times and the worst of times.”)
I won’t say the best of times, but it started out as a good week. I have been getting around so well recently without many balance problems that my wife decided that she could trust me at home alone for an hour while she went out to run an errand. (Oops, home alone; again didn’t someone else use that phrase first? Are all the good phrases already used? Isn’t there anything new under the sun? But didn’t Solomon already ask that question?). My maiden solo voyage started out wonderfully. I stayed upstairs at my computer and didn’t try to go downstairs.
Then came the bad part. (“Not the worst of times, not the season of darkness, not the winter of despair” but more like a thunder-storm at the end of a sunny day.) When I am sitting at my computer, I have a tendency to revert to my pre-incident days of fiddling with the computer and changing settings. This time I was having trouble reading the small print in emails and web articles, so I thought I will just enlarge the images on the screen. Well, I found the instructions on how to do that and after several attempts of trying to follow those instructions, WHOA, I got larger images. Be careful what you ask for! (Did someone beat me to that one, too?) The images were now so large that pages such as my email list or calendar spilled off the page. Even my desktop was too big for one screen. I thought, if I did this, I can undo it. Wrong. Trying to follow the instructions to change the size of images didn’t work this time. And somewhere in the fray, some short cuts to programs disappeared from my desktop. I even tried using the program listing format of desktop, and as far as I can tell the programs are gone from my computer. They were nowhere to be found. I was able to find Outlook, Internet Explorer, Word, Excel and Debrief, so I thought I can at least continue working on my email correspondence, diary, educational essays, blog and twitter accounts. Not so fast. Because the screen images are now supersized, the save button is no longer visible at the bottom of the screen. That meant that I had to work around and through the two “Save” options available within the task bar at the top of the screen, since I like to save redrafts with a different name than the original. I can’t use a straight forward “Save.” I need to use “Save as.” The help function was of no help because the help button got supersized off the right-hand edge of the screen. I usually keep several copies of essays so that I can go back to previous editions or drafts to see the progression of thought in the essays or email drafts. I find this very helpful in my journey of learning how to write again.
I have to remember that my ability to follow directions (my wife will tell you that it was never great) is now less than spectacular. I need someone behind me or right along beside me, slapping my hand and saying you shouldn’t do that when I try to do something with a very involved set of directions. I don’t seem to have the willpower to monitor and control myself in that way. This reminds me of what my physical therapist kept trying to pound into my head as we worked through my balance tests and exercises. The whole time standing next to me, she would say, “To improve, you need to stretch the envelope safely.” I told her that a light bulb was burnt out in my office and I was thinking about stretching the envelope by getting out a step stool and changing the bulb. She quickly injected, “No, you are not. You are not ready for ladders yet.”
Next week I will relate my travails with my cell phone and PDA, but that will have to wait. Maybe by next week, I will have the computer and the cell phone figured out or I will have found someone who can help me. From what I have found so far, it appears that the PDA is going to be a whole different can of worms (or is it kettle of fish?).
Each year, congress passes a resolution that designates June as National Aphasia Awareness Month to support efforts to increase the awareness of aphasia. June 2010 is National Aphasia Awareness Month. Check the National Aphasia Association http://www.aphasia.org/ website for information about events in your area.
Aphasia
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.
Adult Autism in the Academy, Living with Epilepsy and Aphasia
For 40 years as a college instructor and then administrator, I dealt with students that had been diagnosed as autistic as young children. For 40 years, I had sympathy for autistic individuals. Today I believe I have empathy. Except for one student, the autistic students were all hard-working individuals who did succeed in the normal collegiate definition of success. They all graduated with good to superior grades. The one exception dropped out of college and I lost track of that individual. I remember him because I spent hour after hour with his mother who was arguing for our college to give him a chance even though he almost failed out of high school.
Fifteen months ago I spent four weeks in a hospital due to the removal of a benign brain tumor that was discovered when a blood vessel in it burst creating many stroke like symptoms. While in the hospital, the TV had few daytime options other than soaps or health related features. Many of these features related to autism. As I watched these features daily, I noticed the similarities between the behavioral characteristics of autistic children and a number of the faculty members and administrators with whom I had dealt daily over the years. I began thinking, “Is there an adult form of autism besides the severe forms that are portrayed in movies and books?”
After my release from the hospital I was left with two problems, one much more serious than the other. With the help of physical therapy, I worked very hard to overcome the motor deficits that were a result of the stroke-like symptoms. I got to the point where I could walk unaided. I took the driver’s training for stroke victims and was given permission to drive. Nine months after the surgery, there were almost no motor deficits left to indicate that I had experienced such a serious condition. However, the more serious problem remaining was that I was left with a mild case of aphasia, a condition that neurologists characterize as a defect or deficiency. Literally it means loss of words. The National Aphasia Association describes it as an acquired communication disorder that impairs a person’s ability to process language, but does not affect intelligence. Aphasia impairs the ability to speak and may impair the ability to understand others. My aphasia manifests itself as an inability on occasion to follow conversations and either written or verbal directions. It also manifests itself in the inability or difficulty in finding the right word to use in a conversation or in my writing. I describe it by saying that “Words act more like cats than dogs. Dogs come to you when you call them; while cats come to you when they want to come.”
As months past, I kept coming back to that question, “Is there an adult form of autism?” In searching for more on autism within the academy, I found Tyler Cowen’s article, Autism as an Academic Paradigm in Chronicle of Higher Education. My first reaction to Cowen’s premise that autism has helped the academy was significant disagreement. Having spent 40 years fighting and cleaning up messes left by faculty and other administrators who demonstrated the behavioral characteristics used to define autism, I didn’t think the consequences were positive. These behavioral patterns included a lack of communication, marked impairment in the ability to initiate or sustain a conversation with others without relying on stereotyped and repetitive use of language or idiosyncratic language fixation on the minutia, and the inflexible adherence to specific, nonfunctional routines or rituals. How often have I dealt with faculty or administrators who had what seemed to be an unhealthy preoccupation with one or more stereotyped and restricted patterns of interest that seemed to be abnormal either in intensity or focus? How often have I seen within the academy an apparently inflexible adherence to specific, nonfunctional routines or rituals?” When the faculty members or administrators are questioned about these routines or policies, the typical answer is “We’ve always done it this way.” However, there were two lines in the article that made me think maybe he does get it. The lines were “It’s not just ‘special needs’ students but also our valedictorian, our faculty members, and yes—sometimes—our administrators. That last sentence is not some kind of cheap laugh line about the many dysfunctional features of higher education.” It may not be a cheap laugh line. But there are many dysfunctional aspects of higher education engendered by the behavioral characteristics that are used to define autism.
So how can I now have empathy for the autistic? Nine months after my brain surgery, I had four grand mal seizures, which put me back in the hospital for a week. The seizures were most likely the result of scar tissue remaining in my brain as a result of the surgery. The four seizures have left me classified as an epileptic. As much as I would like to get out from under this classification, I will always remain classified as an epileptic and most likely I will have to take anti-seizure medication for the remainder of my life. I am thankful that there are such things as anti-seizure medications. While I am taking these medications faithfully I can live an almost regular life. However, I must carry the stigma of being an epileptic and I must be under constant observation; hence the source of my empathy. Since not enough time has elapsed since my most recent grand mal seizure, I am not allowed to drive or operate heavy or complicated machinery. Should that prohibition related to complicated machinery include computers and blackberries? I have had to give up my blackberry because I couldn’t respond fast enough to the prompts, more likely a result of the aphasia rather than a result of epilepsy. But if you take away my computer, you have taken away my best avenue of communication. Without the medications, I would be living in constant fear of another seizure. Even with the seizure medication, one EEG’s showed lots of spurious activity in my brain. The neurologist said that this could be a sign of the ongoing occurrence of many mini-seizures, or the prelude to another big seizure.
Because of my epilepsy and aphasia, I have had to retire from the academy. The aphasia has made it almost impossible for me to respond immediately and fully to complicated communications from others. I must study the communications preferably in written form so that I can slowly formulate a proper answer to them. Many times in academic circles you are not afforded the luxury of time to compose a response. In academic meetings and in testing situations in classrooms people and instructors want answers immediately. I have also found that my epilepsy scares many people and they don’t want to be around me, because they don’t understand the disease and they are afraid because they don’t know if they would know what to do if I had another seizure. I still have my intelligence and knowledge based on 40 years in higher education, but I have few avenues within the academy to use them. If we can integrate the individuals with autism into the academy as effectively as Cowen suggest we have, can we integrate individuals with epilepsy or aphasia? I have confidence that American higher education can do so if it will try. I only hope that I will see it.
Hello world!
Welcome to my site. THe following Grand Rapids Press article tells a little bit about my story. This story told the story to October 2009. On December 30, 2009, another adventure began. I had four grand mal seizures and was hospitalized again for a week. I am now classified as an epileptic with all the challenges of that disease. I hope the blog will help me speak about higher education the thing that I love the most besides God, my wife and the rest of my family. I hope to post an original essay each Monday and a commentary on a selected news item from the top Higher Education Newsletters. For those who are wondering what’s up with the beta squared, since my initials are BB and I am a mathematician, I have been using beta squared for years as my initials. ?2
Former Cornerstone University provost develops aphasia after blood vessel bursts in brain
By Nardy Baeza Bickel | The Grand Rapids Pr…
November 21, 2009, 4:35AM
GRAND RAPIDS — For 40 years, Bayard “By” Baylis has worked with words to develop curriculum for students and to help faculty teach better, most recently as the provost at Cornerstone University.
But after undergoing brain surgery earlier this year, words have been a bit tricky for Baylis: They behave like cats, not dogs, the educator said.
Courtesy Photo of Former Cornerstone University provost Bayard Baylis, shown here with his wife, Elaine Baylis, had a blood vessel burst in a brain tumor and developed aphasia, a disorder that impairs language skills.“Dogs come when you want them, but cats … they come to you when they want to come to you, not when you call them,” said Baylis, trying to explain what it feels to live with mild aphasia, a communication disorder that limits a person’s usage and
understanding of language.
Learning how to pick through his brain to find the right words has not been easy for the 63-year-old, who until recently spent his days revamping Cornerstone’s curriculum and designing new strategies to improve student retention and enrollment at Christian institutions.
“He was a beloved provost because of his humble manner. Faculty and students could sense that he cared about them. He’s such a good listener,” said Alan Blanchard, who worked with Baylis in developing Cornerstone’s journalism program he directs.
“He really seems to genuinely care about people.”
Now, Baylis keeps a small notebook in his shirt pocket to make sure he will capture the ideas as they come to him. He also color-codes the ideas throughout his writings to make sure he does not leave any of them without proper explanation.
“That’s part of the insidiousness of the disease. There are times that I know I sound as if I’m making sense, but it’s not the sense I wanted to make. This week I’ve been (writing) an article about liberal arts and practical education, and I’m trying to understand the ancient Greek system. It’s just been a battle,” he said.
The experience has done nothing but strengthen his relationship with God, Baylis said.
“God is a god of miracles and not a god of convenience,” Baylis said. “The timing of the episode was a small miracle. If it had happened 15 minutes later, I would have been making 70 mph on I-96. And if it had happened a couple of months later, we would have been in Illinois, not knowing many people, not having doctors, not knowing the medical (community).”
“That in itself was a miracle,” agreed his wife, Elaine Baylis.
This spring, Baylis resigned as the second-in-command at Cornerstone to revamp the academic curriculum at Trinity International University in Deerfield, IL, where he was to become dean and vice president of academic affairs.
He was in a meeting with faculty and staff at Cornerstone when he got the worst headache he ever has had.
His speech became slurred, he broke out in a cold sweat, and his face became ash-white.
Baylis has no recollection of what happened later: Of his friends calling 911, fearing he had suffered a stroke; of the ambulance ride to the hospital and of doctors finding, and removing, a non-cancerous tumor in his brain.
His wife, 63, was told to gather the family. If he made it out of the operating room, doctors told her, he never would be the same.
When Baylis woke up after surgery, his speech was altered, but he couldn’t tell the difference.
“It was so frustrating. There was a word that described the condition I wanted to describe and I couldn’t come up with it. I would have trouble following directions, oral or written,” Baylis said.
After months of physical, occupational and speech therapy, Baylis said, he is doing much better. Now retired, he had to pass up the job at Trinity.
He can follow a conversation without much help and already passed a test to regain his driver’s license.
But he still is easily exhausted and, once in a while, words elude him, he said.
Just recently, while attending a funeral service for a Cornerstone employee, Baylis said he had trouble recalling names of former colleagues.
“I knew what they did. I knew what they taught. I knew where their offices were, but I couldn’t come up with their names,” he said.
Still, he pushes forward. Baylis and his wife hope to move soon to Pennsylvania to be close to his family. They still spend most of the mornings, and some afternoons, talking with colleagues about the future of academia and what colleges should do to better to educate students.
E-mail Nardy Bickel: nbickel@grpress.com