By's Musings

Epilepsy

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Living in a metaphoric world and trying to communicate with the academy

I found two articles published this past July very significant and helpful. The first was an article in the Epilepsy Advocate magazine about Chris M., a minister and author, who found he was thinking and writing differently after the onset of epilepsy. The article may be found at http://www.epilepsyadvocate.com/default.aspx. The second article was a Chronicle of Higher Education review by Carlin Romano  entitled “What’s a Metaphor For?” which can be found at http://chronicle.com/article/Whats-a-Metaphor-For-/128079/

Why were these two articles significant for me?  After two traumatic brain incidents (TBIs )left me essentially able to think only metaphorically and unable to think analytically, sequentially or deductively, I have found it extremely difficult to communicate with the academy. This has been very difficult for me because the academy was my life for 40 years.

In March 2009, I had  brain surgery to remove a benign tumor which was discovered when I had a stroke-like event (first TBI). When I regained consciousness in the hospital after the surgery, I immediately realized something was different. I couldn’t find the right words to complete thoughts. I knew what I was trying to say but the best word to express my thoughts would not come to my mind.  I also had trouble following what other people were saying or writing. My speech therapist called the condition aphasia (loss of words). After 9 months of intensive therapy, I got to the point where usually I was the only person who realized that I was having trouble with words.

In December 2009, I had four conic-tonic seizures within a 30 minute time span (second TBI), which my neurologists blamed either on the stroke-like event or the scar tissue left from the removal of the benign tumor. When I regained consciousness in the hospital three days after the seizures, I immediately knew something else was very different.

I knew my ability to think analytically, sequentially or deductively had been severely compromised. Prior to the first TBI, I would try to think everything through analytically. After the seizures, my first reaction to any situation, problem or question was to draw a mental picture, i.e., devise a metaphor. What’s the difference? The battle between thinking analytically and metaphorically is like living in two different worlds or looking down two very different sides of the same mountain.  For 40 years, I lived in an analytic world. However, now I was living in a metaphoric world. In such a world I found that I could not rigorously define metaphor. The best I could do was to describe it using more metaphors. Notice in my account above, to describe what was going on in my mind, I had to use a metaphor. Another discovery is that even the best metaphor may not completely satisfy the need for the rigor of those living in the analytic world.

Having lived in both worlds, I found it easier to understand someone living in the metaphoric world when I was in the analytic world, than vice versa. This insight reminded me of the episode of Star Trek, The Next Generation, entitled “Darmok and Jalad at Tanagra.” In this episode the Enterprise Crew was working on trying to understand messages from the alien world of the Tamarians. The Star Trek universal translators could translate the words but the words make no sense to the Star Trek crew. Finally Dathon, the leader of the Tamarians, kidnaps Picard and strands the two of them on the planet El-Adrel together with a common foe. When Dathon tosses Picard a dagger, several of the Star Trek crew members suggest that this is a hostile act. It is not until later when Picard and Dathon are attacked by a third hostile alien that Picard understands that the dagger was an invitation to cooperate and jointly fight this new enemy. Although Dathon is killed in the fight, the humans and the Tamarians see that they can cooperate. It is only when the Tamarians start referring to this event as Picard and Dathon at El-Adrel, does the Star Trek crew understand that the other phrases the Tamarians were using were actually  metaphors that referred to important events in their history. Thus, even though the Tamarians never could understand the straight-forward explanations the humans offered for events,  the two groups were able to communicate and understand each other through metaphors, because the Star Trek crew started using metaphors.

As I contemplate a limited future within the academy, the two articles mentioned above have given me some new hope that I can find a few good friends who will be willing to work with me so we can translate each other’s language so that both groups will be enriched.

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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.

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The Cat Came Back

     During the past two weeks, I engaged in an all-out war with my blogs, and the blogs won. During part of that time, I suffered from partial writer’s block. I had several decent ideas to start postings. However, as I approached the halfway point in those postings, I would get another idea and the posting would take off in a different direction. When I reviewed the revised posting the opening didn’t quite
fit with the new conclusion, so it was back to the drawing board.

Finally, I thought I had one of the battles won and I attempted to post GAZING INTO THE ABYSS Since I said “I thought,” you probably have guessed that I was wrong. The blog won again. In my first attempt to publish a particular posting, I uploaded a word document to the blog. When I previewed the posting before publishing it, I found several errors. One of the errors was the inclusion of an extra word, which happened to be the word “that.” So I tried to edit the posting on the wordpress.com site. When I thought I had all the corrections made, I published the posting. However, when I checked the blog, I was dismayed to find two identical postings, both of which were incorrect and contained the superfluous “that.”

I deleted one of the incorrect versions and edited the other one before hitting the publish button. I was even more dismayed when I checked the blog and found three identical, but incorrect versions had been published. My next mode of attack was to delete all three of the incorrect versions and upload a correct Word document version. When I checked the blog, I found that only one copy of the posting had been published. However, it was the still the incorrect version. One more attempt and I believe I got it right: GAZING INTO THE ABYSS. 

All the fussing with the different versions and the “that” which kept coming back reminded me of a folk song that I remembered from the mid 60’s. “The Cat Came Back” was sung by the New Christie Minstrels in their 1963 album “Tell Tall Tales!” By the time the New Christie Minstrels recorded their version of the song, it was already 70 years old and had a history of repeated appearances.

 Everyone that sang the song seemed to have their own lyrics. These lyrics illustrate “purrfectly” the lesson of the song:

Stanza 1

Now Old Mr.
Johnson had troubles of his own.

He had a yellow
cat that wouldn’t leave his home.

He tried and he
tried to give the cat away.

He gave to a man
going far, far away.

Chorus

But the cat came
back ’cause he wouldn’t stay away.

He was sitting
on the porch the very next day.

Stanza 2

Now, old Mr.
Johnson had troubles of his own.

He had a yellow
cat that wouldn’t leave his home!

A special plan
with deception was the key.

One little
cat—how hard could it be?

Chorus

But the cat came
back. We thought he was a goner,

But the cat came
back, he just wouldn’t stay away.

 

     I apologize to all of you who remember this tune because now you won’t be able to get it out of your head. It will be back tomorrow. It just won’t stay away.

For those of you too young to remember 1963, or old enough but can’t or don’t want to remember it, here is an award-winning animated short feature based on the song <http://www.nfb.ca/film/the-cat-came-back/>. Once you hear the song, the tune will be there to stay with you. It just won’t go away.

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Gazing into the Abyss

I will admit it. I’m a fan of the TV show Criminal Minds. I know the show illustrates the seamier side of life. I don’t watch the show reveling in those things. The two things that I enjoy most about the show are: 1) the challenge of trying to put the pieces of the puzzle together along with the FBI agents in figuring out who the Unsub is and what is actually going on; and 2) the philosophical quote(s) that are sometimes thrown in during the show, and the ones that always occur at the end of the show as the agents debrief about the case. The following quote is one of the throw-ins. At one point, Agent Reid says “When you gaze into the abyss, the abyss gazes into you.” When I tried to track down this quote I found it was part of a longer quote from Friedrich Nietzsche’s “Beyond Good and Evil”

The whole quote is “Battle not with monsters, lest you become a monster. When you gaze into the abyss, the abyss gazes into you.” Most commentators suggest that Nietzsche was trying to say that if you spend too much time with evil, you will fall into evil.

I would like to suggest another possibility for those of us living with aphasia, epilepsy, and Parkinson’s, or for those who serve as our caregivers. Spending too much time concentrating on what has been taken away, can draw us deeper into the abyss of negativity and depression. I know from personal experience how easy it is to get frustrated when I can’t do things that I could previously do almost without effort. When that happens I have to shift gears and listen to the other voice that says but look at what you can do. You are a person. You are alive. You still have so much to offer others. One of the most important things we can do is to stand on the edge of that abyss and warn others so that they can avoid falling into it.

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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.

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Living with Epilepsy, Aphasia and Parkinson’s is like Happy Hour at a Nascar race

Sometimes I feel that living with aphasia, epilepsy and Parkinson’s is like driving a NASCAR race car. No, I’m not talking about living in the fast lane, going 200 miles per hour. I am thinking more  about what goes on during “Happy Hour.” For those not familiar with NASCAR terminology, at most races between qualifying, where the starting positions for the race are fixed, and the race itself, there is one final time of practice that is called “Happy Hour.”  For those of us with aphasia, epilepsy and Parkinson’s, sometimes I think it would be nice to have  a Happy Hour when we could run through a practice and find out where we operate best before going out in the race of life.

 Why is this practice time called “Happy Hour?” First of all, it usually lasts one hour. That part makes sense. Why happy? For many of the drivers and crews that work on the cars it is not necessarily a “happy” time. However, since it is the last time that teams can see how their cars and drivers are going to react to racing conditions on the given track, it is a frenzied time. Drivers try different lines (in racing terminology, normally called “grooves”) to see where on the track their cars can get around the track the fastest. Since many tracks are not flat, but highly banked, contrary to general intuition the fastest way around a track is not always the shortest distant around the track. Sometimes the fastest way around the track is actually the longest way around, where you drive as close to the outside wall as you can. If you do this correctly the combination of centripetal force and friction between the car’s tires and the track’s surface helps hold the car in place and you don’t have to use your brakes as much if you were running at the bottom of the track, and you can maintain full speed all the way around the track. Sometimes drivers will find because of the way their cars react to track conditions, the best line for them is the high line on two curves, and the bottom line on the other two curves. Happy Hour is the time when you can try these things out. If you watch Happy Hour on television, this is what the announcers are indicating when they say the drivers are moving all over the track. They are trying different lines to see which one is best for them in each part of the track.

 It would be nice for those of us with aphasia, epilepsy or Parkinson’s to be able to try different lines on the track of life to see which line works best for us.

 Happy Hour is also the last time before the race that the driver can communicate operational problems to the crew. The following are two hypothetical conversations between a driver and a crew chief during happy hour. 

         CREW CHIEF:  What’s wrong with the car? You’ve slowed down noticeably on the last two laps.

         DRIVER: This car is a piece of junk. It won’t turn going into or coming out of the corners.

         CREW CHIEF: Bring it in and we’ll change tires, spring rubbers and adjust the sway bar

         DRIVER:  Okay, I’m coming in next lap.

The driver brings the car into the pits area and the pit crew changes tires (Cars normally operate best on new tires); spring rubbers (taking out or putting in spring wedges between the coils in the suspension springs will change how the car reacts in the corners of the track, or adjusting the sway bar which change how well the front end and the rear end of the car are coordinated as they go around corners). This is similar to a medical team adjusting medication to help improve performance. 

Second hypothetical conversation over the two-way radio in the car:

         CREW CHIEF: What’s wrong with the car now? You were the slowest car on the track that last lap.

         DRIVER: I don’t know. The engine feels like it is missing (slang for one or more spark plugs is not firing).

         CREW CHIEF: Okay bring the car into the garage and we’ll run the diagnostics on the engine.

         DRIVER: Okay, I’m there the next lap. 

The driver pulls the car into the garage and the pit crew plugs in all the diagnostic equipment and runs the tests. Sometimes the tests show something wrong and other times they don’t, or sometimes they indicate something is wrong but don’t pinpoint the problem. That sounds very much like what happened to me the last time I was in the hospital for observation. The tests indicated problems but couldn’t pinpoint the exact nature or location of the trouble. What do the experienced crew chiefs do in this situation? They rely on their experience and make changes to the car that have helped other cars in similar situations. What do experienced doctors do? They rely on their experience and make changes to medications or treatments that have helped other patients in similar situations.

One very important component of this process of “fixing a car during Happy Hour” that I have not heavily touched on is communications. The driver and the crew chief (the patient and doctor) have to be able to communicate and understand what’s wrong and whether “fixes” worked fine , didn’t go far enough or went too far. 

Living with aphasia, epilepsy and Parkinson’s can be like experiencing happy hours at NASCAR races. The best teams that communicate well usually do well in the race, and often win.