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.
Condition
Facing My Mortality
This recent post http://findingstrengthtostandagain.wordpress.com/2011/09/01/the-evolution-of-normal/
on Finding Stength to Stand Again was most timely for me. I have had a bumpy six weeks. During this time, I have had to face my own mortality. I don’t mean physical death. I know that until Christ returns, everyone must die physically. I saw my father and mother die. I am not looking forward to death, but I am not afraid of death. Since a decision I made as a child, I know where I will spend eternity.
On a two-week trip to visit the kids and grandkids at the end of July, I developed pneumonia and spent four days in a hospital. Because of the cough associated with the pneumonia I had to sleep sitting up in a chair for five weeks. Last week I was finally able to email the grandkids that Pop Pop was now able to sleep in a ‘big boy bed’ After returning home I spent nine hours one day in tests and interviews with a new doctor. At the conclusion of the day, the new doctor told us that it appears that my brain has been “permanently” damaged by the turmor, surgery and seizures. THe doctor was particularly drawn to my description of how I thought after the tbi’s as opposed to prior to them. Prior to the tbi’s I would immediately concentrate on a sequential, systemic or deductive analysis of a situation. After the tbi’s I found myself thinking metaphorically or drawing word pictures of the situation. The doctor told me that I should not expect to be able to think analytically, sequentially or deductively at the same level that I did before the tbi’s. This hit me hard. I know our bodies decay and deteriorate, but my mind was my life for 40 years in the academy.I found it curious to realize that 5 years ago, I was more accepting of the word that my knees were shot and that I would never run and jump like I did playing basketball 5 to 10 hours a week for for 50 years.
Instead of having a giant pity party for my loss, following the exxample of Finding Strength to Stand Again, I looked for alternative approaches. I went out and found that I could use a stationary recumbent bicycle without pain in my knees. I threw myself at that outlet and in three months racked up over 2,000 miles without physically moving one inch.
With this new loss, the doctor tried to be helpful by suggesting that since he and others thought that I could still tell stories well that I concentrate on story telling rather than trying to produce academic documents that weren’t up to the standards requried in the academy. I am still trying to wrap my arms around this. All of my plans for making a difference in higher education seem to be thwarted. If I can’t communicate with the academy in the language it uses how can I expect to make a difference. I will just write my stories and see what happens.
Never Give a Person with Parkinson’s a Straight Razor or Even a Safety Razor
The seed of the idea for this post was planted several months ago when I was at a podiatrist’s office. My tremors were really acting up that afternoon, so the doctor noticed them immediately. He asked me what was wrong. I explained that it appeared that I was in the beginning stages of Parkinson’s.
As he was examining my feet, he asked me why there was a small chunk out of the end of one of my toes. I sheepishly explained that I had done that while trying to clip my toenails. He stopped his examination and in a stern voice, with an even sterner expression on his face, he said, “Don’t you ever try to clip your own toenails again.” With a somewhat more friendly voice, he asked me how I trimmed my beard. I told him that I used an electric trimmer. He smiled and almost with a laugh said,”I wouldn’t recommend a straight razor or even a safety razor for you.” I thanked him for his concern. However, the seed was planted.
It didn’t break into bloom until this past week, when I spent two days in a hospital getting a pacemaker implanted into my chest. I am very fortunate to have received one of the new MRI compatible pacemakers, because with my history of brain problems, I will have many MRI’s in the future. In fact, one is scheduled for June. The doctors and nurses went over the big items on how to care for the new type of pacemaker before I was released—like don’t go through the airport security scanners, or even let the TSA workers pass a hand scan over the implant area, or don’t carry my cell phone or pda in my left front shirt or jacket pocket. I am not supposed to lean up against a microwave oven when it is operating and I am not supposed to operate a chainsaw, which I had stopped using before the pacemaker implant. I had also been somewhat uneasy about using my table saw or jigsaw, not knowing when a tremor was going to appear.
The pacemaker instruction booklet said that I am not supposed to be anywhere in the vicinity of a large magnet. I guess that takes away the possibility of me getting a job in an automotive salvage yard, picking up wrecks with the large magnet and dropping them into the crusher.
When my wife and I got home and we started reading the fine print in the instruction booklet, we were taken back at some of the instructions. They said to keep anything that used a base charger (magnets with no direct contacts) at least six inches away from the pacemaker site. It sent my wife scurrying to get a tape measure, because my cell phone, tooth-brush and rechargeable electric beard trimmer are base charged. If I hold my head up, and don’t droop it while I am brushing my teeth, it appears that I’m safe there. I will have to remember to use my cell phone with my right ear, which may complicate matters somewhat when I need to take notes since I am right-handed.
The beard trimmer is another matter. The neck line of my beard is much closer than six inches from the pacemaker site. If I have to give up my current beard trimmer, what am I supposed do? I then remembered the helpful suggestion of the podiatrist. I quickly decided against a straight razor or even a safety razor. It looks like my wife and I are going to have to go shopping for a plug-in razor-trimmer (not the rechargeable kind). In the meantime, the stubble on my neck and cheek has started to re-grow and it itches.
Near Disaster Adverted
After this weekend, I may be off-line for the better part of a week or maybe more. On Tuesday, I am having a pacemaker implanted. My cardiologist finally said, “it is time to fish or cut bait”. The invention of an MRI compatible pacemaker and a near disaster this past Sunday made the decision to go ahead with the pacemaker easy. For the first time in months, I had what could be clearly identified as a seizure. Although the seizure itself was very mild, the results frightened my wife. We were ready to go to church, when I remembered that I had left my ideas notebook that I try to carry at all times (because I never know when I will get an idea). upstairs on our head board. So I went upstairs to get it. Our bed is located in a small alcove in our bedroom. So I walked between the bed and the outside wall up to the head board. I picked my notebook and pens and put them in my shirt pocket. When, I turn around and start to walk back to the foot of the bed, I found that I couldn’t walk. All I could do was shuffle my feet which is not atypical of Parkinson’s patients. As I slowly approached the foot of the bed, I stopped shuffling because my right foot wouldn’t move at all. In frustration in a moment of an imposed application of will, I forced my right foot to move. With that exertion, I lost my balance and started to fall backwards. In that fall I sat in our second story bedroom widow breaking the glass. I grabbed the window frame so that I didn’t go all the way through the window. My wife, Elaine, heard the glass break and yelled, “What did you do?” I yelled back, ”I broke a window.” By that time Elaine was running up the stairs yelling, “How did you do that?” All I could think of was to say, “I sat in the window.” To which Elaine asked, “You did what?” I couldn’t think of anything quick enough to respond to her, so she kept yelling, “Are you okay?” I didn’t say anything, but waited until she got to our bedroom. She looked at me sitting in the window with my hands still gripping the window frame and she yelled, “What happened.” I tried to calmly explain what had happened. Now that I reflect on this scene, according to the TV commercial, this would have been a perfect time for a Twix to give me time to think of a good answer that I didn’t have on the spur of the moment.
Elaine went about cleaning up the mess on the window sill and floor. Apparently our mini-blinds and my Sunday clothes kept me from getting cut by the chards of glass that were everywhere. Since this occurred on a Sunday morning and it has rained or snowed every day since, we now have a boarded up window in our bedroom until we can have someone come and put in a new window pane. In our old house with its old windows, the glazing is on the exterior side of frame, so the glass pane must be installed from the exterior. The boarded up window is a constant reminder to us of God’s care.
Relief Through Reading – Part II
For my first excursion after many years into what I thought would be recreational reading, I chose a book I saw on the New York Times Best Sellers List that sounded interesting. It was a novel by Emma Donoghue, entitled “Room.”
If recreational reading is reading for fun and enjoyment, it is hard for me to call “Room” recreational reading. However, I have to label it recreational reading in my taxonomy, because it definitely isn’t informational or work-related, at least at first glance. I will explain this a little later in this posting.
After getting started on the book, I found myself having a hard time putting it down. I found myself mimicking my wife, reading for hour after hour, trying to either get through the book or at least to a good stopping point. When I finished the book, I returned the favor to my wife by telling her, “You’ve really got to read this book. It will disturb you, but you will like it.”
Since we had gotten the book from our local library and there was a long list of people who had reserved it. My wife picked it up immediately and finished it before we had to return the book to the library. My wife admitted that it did disturb her, but that she liked it so much she recommended the book to her book club as a future choice for a book of the month.
The story line of the book revolves around a five-year-old boy named Jack who has lived his entire life in an 11×11 room with his mother. They are captives of a deranged individual who abducted Jack’s mother when she was a teenager and imprisoned her in this specially constructed room that had one door and only one window, a skylight. For more than eight years ‘Ol Nick’ would come in the room at least once a week to bring food and molest the frightened young woman who had no way of escape. Because of these sexual advances, two babies are born in the room. Only Jack survives and we pick up the story when he is five-years old with all the normal curiosity of a young boy, but no knowledge of the “outside world” other than what he can see through a skylight, a black and white TV with limited reception, and a few National Geographic books. ‘Ol Nick’ knows of his existence but Jack’s Ma shields Jack from ‘Ol Nick’ by making Jack hide in a wardrobe every time ‘Old Nick’ comes into the room. When Jack starts asking Ma about the outside world, Ma begins concocting a plan of escape.
As I continued to reflect on the book and its story, I began to discover applications of the story to higher education and to my life. I kept finding rooms that had been constructed to imprison people and keep them from fully developing and enjoying the outside world. Most of those rooms were not physical rooms, but they were prisons all the same. In the posting by Finding Strength to Stand Again, entitled, “Hitting my head on Glass Ceilings” : http://findingstrengthtostandagain.wordpress.com/2011/02/17/hitting-my-head-on-glass-ceilings/,
we see rooms that have been constructed to keep those people with challenges “where they belong.” In her Glass Ceilings posting, the author talks about how she has been shut out of employment because she is different. She has a disability.
These rooms are difficult to see, hence the name “Glass Ceilings” They are metaphysical rooms, but they are just as real as the room ‘Ol Nick’ used to imprison Jack and his Ma. I know because I have experienced several of these rooms recently. The law says people who are aged challenged and physically challenged are members of protected classes in terms of employment. However, if I were to submit my resume for a job opening that I was perfectly qualified to fill five years ago, I wouldn’t even get an interview today. I know because three years ago I was looking for a new job as a chief academic officer at a college or university. Even though I had an outstanding resume from my 40 years of work in higher education, and was well-known in the Christian college and higher education assessment circles. I had a difficult time convincing some institutions to even give me an interview. I know that my age was a problem. When I finally did get two interviews, one of the first questions that I was asked at both institutions was, “How long are you planning to work?” I told people who I could not promise anything, but that I planned to work for another seven to ten years. At that time, I felt that was quite doable. I felt good and I had maintained a rigorous physical exercise routine for more than 50 years. One of the great advantages of working in higher education is the availability of a gym. Until my knees finally gave out and I couldn’t find a surgeon who would operate on them for a fourth time, I played an hour of competitive basketball five days each week. In life after basketball, to keep up my workouts, I switched to a recumbent stationary bike. In my first year on the bike at age 62, I racked up more than 10,000 miles pedaling more than 30 miles per day.
Paraphrasing the 1970’s hit of the Five Man Electric Band, “Rooms, rooms. Everywhere rooms; keeping me in my place; playing with my mind,” I can hear a new acquaintance that I have come into contact with through the web, say right now, “Be careful. You’re heading into dangerous territory. You are trying to stretch an analogy or metaphor too far.” ‘Ol Nick’ was imprisoning Ma for his own evil intents. People in higher education are not imprisoning people for evil intents. I concur with that. However, to the victims, the results are similar.
I believe that by playing off the metaphor of “room as a prison,” I am using what we know from learning theory. People learn more when faced with a compelling problem and can connect the new problem to something with which they are already familiar. I understand the concept of a room. The compelling problem is looking for a means of escape. It makes sense to me.
In Part III of Reading for Relief, I will explore the ideas of rooms and means of escape in relationship to higher education.
Relief Through Reading Part I
I am sorry, Readers, but I am going to subject you to a long, round about introduction to a posting about reading. It was inspired by two recent posts by bloggers that I have come to appreciated immensely. I can’t recommend their blogs highly enough. They are great people who have great stories to tell and tell them wonderfully. The postings that inspired this long post are Finding Strength to Stand Again http://findingstrengthtostandagain.wordpress.com/2011/02/17/hitting-my-head-on-glass-ceilings/
and Bended Spoon
How many of you remember the old tv commercial that ran regularly during major league baseball games? There would be a scene of a famous relief pitcher warming up, supposedly getting ready to go into the game. An off-screen announcer would say, “How do you spell Relief?” The camera would close in on the pitcher and he would say, “I spell it “R O L A I D S!”
How do you spell Relief? My wife spells it R E A D I N G !
I have been a voracious reader since I was a young kid. I recognize that there are ar least three types of reading. They are recreational, informational and work related reading. Recreational reading Is the act of reading to relax or escape. Informational reading is the act of reading to gain information or knowledge about a topic of interest not directly related to your work. Work related reading is the act of reading of material directly related to your work.
My wife and I are both aged-challenged. (We’re both eligible for Medicare this year. Please don’t tell her, I’ve told you how old she is.) We’ve been married for over 40 years and have known each other for almost 60 years. For all of those years, we’ve been readers, Although I must admit our reading habits are very different. My wife has always been a recreational and informational reader. She has always had two or three books in which she deeply engaged. Much of her recreational reading has included authors like Janette Oke, Terri Blackstock, Ted Dekker, or Frank Peretti. She also enjoys biographies and autobiographies. Her tastes in informational reading have centered on inspiration books like “Fear Not Tomorrow, God is Already There” by Ruth Graham or “Purpose Drive Life” by Rick Warren.
I have always been a voracious reader, but generally, “it had to have a purpose.” Since I have been in higher education all of my adult life, I have always owned a large collection of books. While I was in high school, my parents bought me the entire set of “Great Books of the Western World.” I set still have those classics, along with all the required readings from my college literature courses. I never sold a college text book or required reading after a course was over. Most of my other books are work related. Although I have some informational books that you would find in the “How –to” or Religious sections of Barnes and Noble. The How to Books were bought to help me with my latest DIY project. The religious books were to help me with a theme for the latest adult Sunday School lesson or a sermon that I was preparing. To borrow a phrase from Rick Warren and use it out of his context, my reading has almost always been “purpose driven.”
For years, my wife would chide me with the comment, “Why don’t you read something for fun?” I would reply, “I don’t have time for that.” Her response was “Try it, you may find that you like it.” My response back to her was, “The time that I want to dedicate to fun is better spent antiquing, exercising or doing DIY projects like remodeling rooms, insulating and putting vinyl siding on our old house, adding a deck, or enclosing our back porch.
Occasionally, I would watch sporting events like basketball, baseball or automotive races on television. My wife and I also both like to watch new segments of “This Old House” or “Antiques Road Show.” We would take this last passion one step further by trying to find unexplored antique shops and digging through them for undiscovered treasures. Those things were fun. Fortunately for me, my wife also suffered from the DIY and antiquing viruses. We spent many weekends together trying to satisfy the cravings that those bugs would cause. If we were not at home working on the latest DIY project, we would be on a road trip to find one more of those unexplored antique shops.
On a Saturday when we didn’t have a pressing DIY project hanging over our heads we would get up early, and tell our college-age daughters that we were going for a ride. The girls would glance at each other, and one would say, “We’ll see you tomorrow afternoon.” Many times they were right. After finding an unexplored antique shop and digging through it until closing time, we would find a nice restaurant and a cute inn or motel and spend the night.
On each of these trips, I did most of the driving and my wife would pass the time in the car reading one more fascinating chapter of her latest engrossing novel or biography. Every once in awhile she would stop reading and say to me, “You really should read this book, you would really enjoy it.” I would pause for a moment then in all seriousness say, “I can’t right now, I’m driving.” My wife would sigh and say, ”I didn’t mean right at this moment. What about this coming week?” I would respond by saying “I have some work that must get done this coming week and all my reading will have to center on that job.” She would sign again and go back to her reading. I guess she almost figured out that I was a lost cause, until she came up with a brilliant idea. She went to the local library and checked out some audio books, so on our next road trip, we both listened to someone read those books to us. Using this technique, we read Mitch Album’s “Tuesdays with Morrie” and several John Gresham novels, including “The Client” and “The Rain Maker” plus a number of cat mysteries. I must admit the audio books did help to make the miles go more smoothly. Although I can’t remember the titles or the authors, other than Album and Gresham, I do remember most of the story-lines and I will also admit that this was a fun way to read.
All of this changed for us on March 16, 2009. For those of you who are unfamiliar with my story check back to some of my early postings. On that date I had what appeared to be a stroke. However, it wasn’t a stroke, a blood vessel in a benign tumor attached to my brain exploded (surgeon’s word) and the tumor imploded (again surgeon’s word) creating all the symptoms of a stroke. After the removal of the remains of a dead tumor, I have battled balance issues, fatique, aphasia, epilepsy and most recently Parkinson’s disease. I took a medically induced break from my life as an academic administrator, first on disability and now officially on retirement. Supposedly that should give me more time to read. I will tell that part of the story in Relief Through Reading, Parts II through V. In these posts, I will also share how Finding Strength and Bended Spoons have inspired me to expand my reading list somewhat, read more and write about it.
As indicated above on March 16, 2009, I was introduced to a new phase in my life that supoosedly should give me more time for reading, but I must admit that old habits die hard. It has taken me two years to get to the point where I can pick me a book and almost read it just for fun. However, instead of throwing open my reading list to many more recreational reading books, I have taken up more informational reading. I have dropped the DIY readings and picked up readings about neurological dysfunctions, such as “The Man Who Mistook His Wife for a Hat” by Oliver Sacks and ‘ My Stroke of Insight” by Jill Taylor, and higher education like Charles Murrays’ “Real Education” or Mike Rose’s “Lives on the Boundary.”. The neuologiacl books are helping me understand what I am going through and what I can expect ahead of me. The higher education books are keeping me in touch with the academy. The next three books on my reading list are “Awakenings” by Sacks, “Always Looking Up” by Michael J. Fox, and “Reading in the Brain” by Stanislas Dehaene.