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.
Therapy
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?”
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?
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.
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.
The Recovery of Aphasia and Epilepsy patients can be helped through the application of appropriate challenges with proper scaffolding
Aphasia and epilepsy patients recovering through the application of appropriate challenges with proper scaffolding
By Baylis
This past week I suggested that I would report on my experiences with my computer, cell phone and PDA. Unfortunately I am not much farther along than I was last week. My computer is not completely recovered. My PDA is not syncing and I can only use the cell phone for voice calls, and not any of the cute applications that the wireless companies keep trying to sell by advertising on television. My conquering of the computer, cell phone and PDA will have to wait for another time. Paraphrasing Chicago Cub baseball fans, there is always next week.
This past week I also reported on a comment that my physical therapist made about my progress. I had been seeing a physical therapist for balance issues that increased dramatically immediately after my seizures. Are they are a result of seizures? No one has been able to tell me definitively yes or no. Circumstantial evidence suggests they might be, since the Increase intensity of the issues happened in the same time frame. Whether they are or not, they are a constant reminder of the ugly specter of seizures hanging over my head.
The therapist’s statement to which I am referring was the one she made related to the fact that I needed to be pushing and stretching myself but doing it safely. When I suggested I was getting ready to use a step stool to change a light bulb, she quite forcefully told me that I was not ready to use a ladder. As I pondered her statements about pushing and stretching safely, several additional thoughts came to mind. One was the fact that in higher education a foundational principle of student development theory is that students should be challenged in an environment that provides proper and sufficient scaffolding. Over ten years ago, I designed and directed a critically acclaimed assessment project that involved fifty Christian colleges and universities. The project was a six-year longitudinal study looking at values development in students. One of the key results of the study was that students were more likely to reach the point of owning their values if they were forced to challenge or to examine their values in a safe environment, instead of being isolated in environments with no challenges, or being challenged with no support.
I also remembered that this principle is a foundational principle in athletics, where coaches hover over their athletes in practice to make sure they are exercising but doing the exercises correctly. As I reviewed the literature from the aphasia and epilepsy associations and organizations, they kept repeating this same idea to caregivers and patients. Patients need to push and stretch themselves to try to regain as much of their former capabilities as they can. These organizations also pointed out that one of the main responsibilities of caregivers was to make sure that the patient was pushing and stretching safely.
My physical therapist was suggesting that pushing myself to do more was important, but not enough. She also was suggesting that I should be stretching myself to do something different. If I just repeated what I could do well, I really would not be recovering my former capabilities. In athletics this principle takes the form of “no pain, no gain.”
This reminded me of what my speech therapist did with me. Prior to the removal of the brain tumor, I had been delivering the Sunday evening sermons in our church. My speech therapist kept pushing me to try to do that again. It took me five months to get up the courage and will to prepare a sermon. That first sermon I delivered in the safe environment of an audience of two, my wife and my therapist. After several suggestions for improvement and several weeks of practice, I felt ready to try an evening service. The congregation was quite gracious in their reception and encouragement. I did a second sermon the next week. After those two weeks I was mentally beat and needed a break. I could not keep up the pace of a new sermon each week. Thanksgiving was fast approaching and because my wife and I wanted to visit our family 10 hours away, I had an easy excuse for a two-week break. After that two-week break, it was the Advent season and the evening services were dedicated to Christmas preparation, so I was not scheduled again until after the New Year. However, I didn’t get a chance to deliver another sermon because on December 30, I had four seizures and spent a week in the hospital.
In preparation for the annual congregational meeting, the congregation finally came to realize that they were asking the senior pastor to do too much and he really did need help. Thus, they took the long needed step of adding an assistant pastor to the church staff. One of the primary duties of that assistant is Sunday evening services. Now after several months of healing, I am feeling the itch to start teaching again. I think I will volunteer to do some occasional adult Sunday school classes to get back into the swing. That will be pushing and stretching me but it will be in a safe environment. I know I am not ready to get back on the ladder of academic presentations. I need more practice first.
I want to go on record as thanking my wonderful therapists for pushing me to stretch myself to try to recover as much of the former me as possible. Without their intervention I don’t know where I would be in my recovery.