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.
Epilepsy
Momentary Absences: Epilepsy, Aphasia or Senior Moments?
Momentary Absences: Epilepsy, Aphasia or Senior Moments?
Have you ever had one of those moments when you are not sure of where you are? They are sometimes called momentary absences. Or you know someone just asked you a question, but you didn’t understand the question or you can’t think of a reply, or you know the answer but can’t communicate it? Or you were doing something and you seemed to doze off? For those of us who are slightly age challenged, and have been diagnosed with epilepsy and aphasia, we have three conditions upon which we can blame these momentary absences. If they become more frequent, it behooves us to try to determine the source or sources of the absences.
When many hear the term epilepsy, they have a picture of violent convulsions or an attack of unconsciousness with either stiffness or floppiness. What is epilepsy? It is not a disease. According to the Encarta Dictionary, epilepsy is a medical disorder involving episodes of irregular electrical discharges in the brain and characterized by the periodic sudden loss or impairment of consciousness. These episodes are called seizures. Seizures can be large with total loss of consciousness and accompanied by convulsions, rigidity or floppiness, or small with what appears to be a momentary absence of some or several body functions. Some individuals are born with the tendency to have these irregular electrical discharges and hence, seizures. For others these irregular electrical discharges and hence, the seizures, begin after a traumatic brain event, such as a stroke, injury or operation. My seizures began after the removal of a benign brain tumor which was discovered when a blood vessel in the tumor burst, filling my cranial cavity with blood and causing all the symptoms of a stroke. My seizures most likely are a result of the scar tissue left after the removal of the tumor. I had four grand-mal or total generalized seizures within a 30 minute time-frame. I was hospitalized and stabilized. I was put on anti-seizure medication and I have not had any large-scale seizures since those first four. I can’t tell you if I have had any “mini-seizures.” My neurologist has done several EEG’s. After one of them, she said that it showed lots of spurious activities. (I jokingly remarked, “So what’s new?”). When we asked her what that meant, she said that it could be a sign of lots of mini-seizures or the prelude to another major one.
I have come up with my own way of identifying my moments of absence. If I start to do something and before I can do it or finish it, I get sidetracked, that’s a senior moment. If I can’t remember to do something that I am supposed to do, again that’s a senior moment. If I find myself struggling in a conversation to find the right word or expression, that’s the aphasia. If I can’t understand the telephone answering tree when I call a company, that’s the aphasia. If I can’t understand and follow written instructions, that’s also the aphasia. If I am sitting in the lounger in the living room watching television, reading the newspaper, doing a crossword puzzle or a Sudoku, and I seem to zone out, then that’s probably the epilepsy. Of all the momentary absence, these scare my wife the most because she says that what happened in our car just before the first grand-mal seizure. One moment she was talking with me and I was slow responding to her. I was staring straight ahead with a blank expression on my face. Then I didn’t respond at all to her question and I became stiff and lost consciousness. When I zone out now, she keeps pumping me with questions to make sure that I am in there somewhere. Most of the time, I respond by her third question. Except for the dangers of seizures, it is convenient to have three excuses for unresponsiveness and lack of completing tasks. I used to have only one excuse, which was “selective hearing.” Occasionally, I still pull that one out of my back pocket to use.
Living with Epilepsy and Aphasia
Living with Epilepsy and Aphasia – June 14
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 new drafts 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.
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.
Living with Aphasia and Epilepsy –
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.
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.