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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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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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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.

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A Week in an Epilepsy CLinic

My Week in an Epilepsy Center

By Baylis

I gave them a scare when I arrived early on a Friday morning at the epilepsy clinic for a week of testing.  My wife, Elaine, had pulled up to the front door of the clinic to drop me off and give the car to the valet parking attendant. I grabbed my laptop brief case and a brief case with three books in it. The clinic had said to bring a laptop and reading materials because it can get boring sitting in the same room for a week without anything to do. Elaine grabbed my suitcase, duffel bag and CPAP machine for my sleep apnea. We took the elevator that was in the lobby. Elaine wheeled the suitcase down the hall to the check in desk and I carried my laptop and books. When we got to the check in desk, I was out of breath and in some obvious, but not serious distress. They made me sit down and checked my blood pressure and pulse. You guessed it. I was in A-Fib. My blood pressure was 150/110 and my pulse was 140. They called a doctor who made me lie down. After lunch and a short nap my blood pressure was 120/80 and my pulse was 110, but I was still in A-fib. My heart is extremely strong, my arteries are clear. It’s just that my heart doesn’t have any rhythm.

One morning during the week at about 2:30 AM bells and alarms started sounding off like fire alarms. Two nurses came running in and I asked them, “What’s up?” They said my blood pressure had dropped to 80/40 and my pulse had dropped to 55. By morning they were back up to 110/80 and 95. I didn’t have any official seizures while in the clinic for the week, just a few events that the doctors said left some tracks on the EEG but not where they thought they should be. I haven’t had any more impressionistic visions, but I did see spots, like those when you look at a bright light. For years when I looked at a bright light I would see fuzzy yellow donuts. This time they weren’t donuts and the spots were coming and going more frequently. One morning I woke up and looked up to the ceiling where the infrared camera was located. The camera was on because I could see a faint red glow. When I looked away I saw spots that looked like Mickey Mouse heads. They were large solid disks with two smaller solid disks, one at each side of the top of the larger disk. However, the disks weren’t black or gray. They were a smurf-blue in color. They lasted until I ate and took a nap. When I woke from the nap, and looked out the window, the spots returned but this time they were elongated donuts. After a while I recognized them as oval race tracks with the track one color and the infield another. The “head” of the clinic said that the EEG activity tracks were not where normal vision tracks would have been, so she had two guesses. One was side effects from medication. One of my anti-seizure medications is very effective against seizures but is known for strange side effects. She said that it was also possible that my optic nerve was displaced. She said that any one of the five traumatic events that I have gone through could have moved my optic nerves. The growing of the brain tumor might have moved them. The explosion of the blood vessel in the tumor could have scrambled things around. The filling of my cranial cavity with blood could have rearranged things. And finally although they try to be very careful in surgery, either the surgery or the aftermath of the surgery when the brain tries to return to its normal place could have displaced some nerves.

The Head of the clinic is “consulting” with my regular neurologist about switching me to different medication. In the meantime, each new day seems to bring a new set of spots. One morning, it looked like I was watching an aquarium. I didn’t see any fish, but there was a whole trail of clear air bubbles rising all across my field of vision. I had one other “event” in the clinic. Again it didn’t show up on the EEG as a seizure but it was strange. One morning, I woke up and hit the event button that they had given me and called the nurse. She came running and asked, “What’s the matter?” I pointed to my forehead. And the Nurse asked, “Do you have a head ache or pressure in your sinus area?” I said, “No, it’s a vacuum.” The nurse asked, “Does it feel like a vacuum cleaner is stuck to your forehead?” I replied, “No inside my head; my sinus area feels empty.” The head of the clinic said that was a new one for her. I told her I was afraid to tell anyone. I didn’t want it get out that I felt my head was empty. OOPS, did I just tell you? Promise you won’t tell anyone”.  Besides I have proof that there is something up there. The MRIs show that I still have at least half a brain, even if it does have a few scar tissues.

Today when I went with Elaine to the store to pick up something, the sun was very bright and reflected off a car in front of us. This time the spots were purple and orange whirlpools.

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WHAT I KNOW IS RELEVANT

Living with Aphasia

What I Know is Relevant

By Baylis

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

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

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

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

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

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

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

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Living with Epilepsy: Tragic Reminder

Recent events have reminded us of the unpredictability and mercilessness of epilepsy. A fifteen-month old baby was visiting her grandmother, when the grandmother had a seizure, fell on and suffocated the baby. The story may be found at
http://www.mlive.com/news/grand-rapids/index.ssf/2010/07/holland_1-year-old_killed_in_f.html

The grandmother had been an epileptic for more than thirty years, but appeared to have her condition under control with medication. It had been years since the last seizure or even a sign of a seizure. By recounting these events I mean no disrespect to the families or individuals involved. I am attempting to illustrate the capriciousness and unpredictability of epilepsy and anti-seizure medication to serve as a warning to epileptics and their families. To the families involved in this tragedy, I express my condolences and sincere sympathy.

My last appointment with the neurologist was the day after the above story hit the news wires. Referring to this news story, she reiterated several times that anti-seizure medication is no guarantee against seizures. She continued by saying it is at best a pledge of assistance in holding back seizures. She questioned me and my wife, Elaine, about my behavior and conditions over the past month. She was pleased with our answers and the test results from the last round of tests. She said the medication and dosages seemed to be working so that she thought it would be best to continue me on the same medications and dosages for a while, rather than risk a change. She also said that she wanted to see me in another month after another round of tests. She then looked straight at Elaine, and said “He’s doing very well.” But then she added sternly, “Watch him carefully, and don’t leave him alone.” I realize the grandmother in the above story had no control over her seizure. I also understand that the longer one goes without a seizure, the more confident one gets in believing that the seizures are gone forever. However, as a grandfather myself, I kept thinking how would I and my family live with our heartbreak if something like the above happened to us. No matter how inconvenient or annoying I find it to have someone watching me all the time, I then remember that it is better than the possible alternatives.

The neurologist turned to me and asked about caffeine consumption. I said that I was careful about getting sodas without caffeine and that I have had only one cup of real coffee since the seizures this past December, however, I have had several glasses of iced tea.” She said “It appears that you are behaving yourself most of the time. Continue doing that, but do better with the iced tea, and we may be able to arrange another cup of coffee for you in a couple of months.” Well, I guess that gives me something to anticipate. Do you know that decaf coffee doesn’t tastes all that bad? It is definitely better than I thought it would be.