By's Musings

Dysesthesia

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Update on My Health

Friends, it’s been three months since my last post. It’s been a much longer absence than I intended. Three months may actually be the longest dry spell of writing in my entire career, not just my time as a blogger. I can’t ever remember any three month interval in which I did no serious or significant writing. It has been like I am in a boat, stuck in the middle of a lake, and I lost the winds in my sails. However, it is not as if I had run out of ideas on which to write. During those three months, I accumulated a list of more than 200 potential ideas for posts. However, during this period, whenever I sat down at my computer to write, something would happen and I could never finish my thoughts. Sometimes as I started to write, I couldn’t decide on the approach I needed to take to bring out the important aspects of the subject at hand. At other times, I would get into a topic and I found it had a mind of its own. It started going in a direction I didn’t want to go and I had to shut it down.

I finally decided to step up to the plate and follow the advice that, for years, I gave to scores of institutions that were struggling in the beginning stages of assessment programs. I would tell institutions to just pick an area and an approach, and then attack it. I would also suggest that after that first task was finished, the institution should celebrate its victory. The institution should then pick another topic, and go after it.  You make progress one topic at a time.

The first topic on which I have decided to write is an update on my health. I offer this posting, not as an excuse for the recent scarcity of posts, but as a partial explanation of my pain. It is also a request for your prayers and thoughts. The past five years have clearly taught me that God is a God of miracles, and not a God of my convenience. If not for the grace of God, I would not be writing anything. I have had six doctors in six different specialties tell me that there are no scientific or medical reasons to explain why I am still walking and talking, or even breathing.

After a life of excellent health, the past five years have been a long, trying journey. During this period, I have picked up a long list of problems which began with the rescission of a benign meningioma. This list of current conditions includes a mild case of aphasia, epilepsy,  abnormal involuntary movement (tremors), disturbed sensory perception (dysesthesia), organic hallucinosis (sensory hallucinations), fatigue, attention or concentration deficit, and mental status changes. These are complicated by another somewhat smaller list of conditions that I have picked up over the past ten years, independent of the brain tumor. This list includes atrial fibrillation and obstructive sleep apnea. Taken collectively these conditions have complicated my life and forced me to retire from full-time work within the academic world.

This fall as I strove to get my proposed coaching/consulting business, Higher Ed By Baylis LLC, and this blog, By’s Musings, off the ground, I have encountered some additional complications. Since the onset of my epilepsy four years ago, my seizures have been controlled by medication. However, earlier this fall I became concerned as I experienced several incidents of sensory overload, brought about by loud noise, quickly changing lights and my cross sensory perceptions. The confluence of these sensory experiences seemed to take me to the precipice of seizures. I developed intense headaches, became nauseated and momentarily lost track of where I was.

The intensity and frequency of headaches increased throughout the early fall until they reached their peak in mid-October. Thus, for the past eight weeks, I have experienced continuous headaches. The only things that change are intensity and location. I wake up with them in the morning. They wax and wane between “four” and “eight” on the normal ten-point pain scale. The headache moves around my head, fading out in one location, as it fades in at another location. As I wrote this paragraph, I found myself engaged in a metaphysical and grammatical argument: Am I experiencing one headache and I should use singular nouns and verbs; or is it many different headaches and I should use plural forms?

In an attempt to find answers, my neurologist ordered a DAT scan to determine if the tremors were related to the possible onset of Parkinson’s disease, and an MRI to determine if there have been any changes within my head. The DAT scan was negative. The good news from that report is that the tremors are not related to Parkinson’s disease. The bad news is the test doesn’t tell them what is causing the tremors. The results of the MRI were a little less positive. There is still a hole in my head where the tumor had been. There is still scar tissue approximately the size of a dime on my right frontal lobe where the tumor had been attached. Unfortunately, the new MRI showed some swelling in the surrounding area, along with a very small new growth within the hole. My neurosurgeon says that the growth and swelling are not extensive enough to be causing my headaches and other problems. However, any abnormalities in the brain area must be watched. Thus, I will have another MRI in three months. Depending upon the results of that MRI, it could be followed possibly by additional MRI in another three months to monitor the growth and swelling.

I know that God can heal me and I pray that He will do so. However, if God decides to do something else, I pray that I will be able to stand with Shadrach, Meshach, Abednego, and Job and say, ” My God is able to deliver me from these medical problems. If he does, the glory goes to Him. However, if He doesn’t, I will still serve Him. The Lord gives, and the Lord takes away. Blessed be the name of the Lord.” Please pray this prayer with me.

16 Shadrach, Meshach, and Abednego, answered and said to the king, O Nebuchadnezzar, we are not careful to answer thee in this matter. 17 If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king. 18 But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up. (Daniel 3:16-18, KJV)

20 Then Job arose, and rent his mantle, and shaved his head, and fell down upon the ground, and worshipped, 21 And said, Naked came I out of my mother’s womb, and naked shall I return thither: the Lord gave, and the Lord hath taken away; blessed be the name of the Lord. (Job 1:20,21, KJV)

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Which Came First: Visual Thinking or Aphasia?

Does the old conundrum (“Which came first, the chicken or the egg?”) really have an answer? One can argue sequentially that to have an egg there must first be a chicken to lay the egg. However, from where did that chicken come? All of today’s chickens come from eggs that were laid by other chickens. The most recent announcement (October 2009) from the U.S. Food and Drug Administration claims that no chickens have been cloned. Thus, we can still ask, “Which came first, chicken or egg?”

I’m asking this question because I have noticed that there is a one-to-one correspondence between my struggles with words and my thinking in terms of pictures. On the other hand, when I am operating in a verbal thinking mode, I have much more facility with and memory of words.

In my sequential thinking mode, I find myself asking the question,”Which comes first: visual thinking or aphasia?” In this sequential thinking mode, I am really asking the question: “Does one condition cause the other?” In my visual thinking mode, I am trying to construct a story board. So which picture panel do I include first in my story?

I realize that my case is very unusual. My brain tumor was in the meninges in the right frontal lobe area. The small hole in my brain and the scar tissue caused by the removal of the benign tumor are in that right frontal lobe area. Although it is known as the executive brain, it is not the normal area associated with language.

Immediately after my surgery I noticed a decreased facility with words. I generally understood what people were saying. Almost all of the time, I knew what I wanted to say, but I couldn’t find the right words to use. This deficiency was much more pronounced in oral exchanges. When I was writing, I had more time to come up with the right word.

When I would mention the battle that was going on in my mind, many people would remark that they could not see that difficulty in my responses. However, I knew it was there. I also knew that I was answering questions by using a preconstructed story board and a previously prepared script. Ad lib responses were slow and not always on point.

For six months following the surgery, I went through extensive speech therapy for the aphasia. Month by month, I noticed slight but continual improvement until I finally reached the point that therapist’s evaluations showed that I was in the above normal range for my age group. This meant that the insurance company would no longer pay for therapy.

However, three months after the speech therapy stopped, I had a serious setback. I experienced four tonic-clonic seizures within a 30-minute time span. I lost consciousness the moment of the first seizure, and I did not wake up until four days later in the hospital. When I did regain consciousness, I immediately knew several things were different. I had lost many of the gains in the use of words that I had achieved through the speech therapy. I also realized that I was vacillating between two modes of thinking. The first mode was a verbal, analytic, quantitative, sequential mode, which had been my normal mode prior to the surgery. The second mode was a visual, metaphoric mode which was brand new to me.

It was immediately back to speech therapy. This time my progress was spotty. Some days were much better than others. It all depended upon which thinking mode I found myself in. When I was in the verbal mode, my performance on the therapist’s assessments was good enough, so that five months after the seizures my insurance company again said that therapy was no longer necessary.

Shortly after the therapy stopped for this second time, the tremors and hallucinations started. One year after the first tremors and hallucinations, the dysesthesia started. I realize that my aphasia is far from the usual forms of aphasia. For more than one year, I have been battling the aphasia, tremors, hallucinations, dysesthesia, and visual thinking. These conditions are not universally present. However, when they are present, I have noticed that verbal, analytic, quantitative, and sequential thinking is much more difficult. Complicating things is that the tremors occur almost at random. They are not associated with either thinking mode, or the aphasia, hallucinations or dysesthesia.

Again, the question: “Which came first: visual thinking or aphasia, hallucinations and dysesthesia?” However, in reverting to analytic thinking for a moment, are these factors occurring simultaneously because there is a third factor that is causing these two observable factors?

In the meantime, I know that if I am fighting hallucinations and dysesthesia, the visual thinking is not too far behind, and vice verse. Although I know that I can write in either mode, verbal or visual thinking, it is easier when I’m in verbal mode. Sometimes I can’t wait for the verbal mode to show up, so I plow ahead writing in the visual mode.

 

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An Unexpected Joy

One of my favorite bloggers, Tara Fall, in a recent series of posts on her blog “Finding Strength To Stand Again” raised the topic of resiliency. She did it with the seemingly benign question of whether there is something in some people that makes them more resilient than others.

One of the unexpected joys that I have experienced with my aphasia is the excitement of discovering new words or rediscovering lost words. When I read Tara’s post “Question and Answer Week 2-b,”  the word resilient just jumped off the screen at me. My immediate reaction was I know that word from my recent battles with epilepsy, hallucinations, dysenesthesia, and aphasia. However, I also had a feeling that I was missing something. My academic background kicked in and I started researching the concept of resiliency.

Very quickly, I realized what had bothered me with the word “resilient.” A number of different definitions are in common use. I found this somewhat ironic in that the same day I read Tara’s post, I became part of a discussion thread that involved academics and professional people from all over the world. The thread began with the question, “What is a professor?”

Immediately people jumped into the discussion arguing about whether the word represented a title or a job position. In the course of the thread, as happens so often in academic discussions, some one raised the question about the difference between colleges and universities. At this point a contributor suggested that what we needed were certain words with “reserved definitions” so that confusions like this would be avoided. My reaction was, “That would be nice, but it isn’t going to happen.”

Returning to the word resilient, the first use that came to my mind was the ability to take a blow or weather the storm and bounce right back up. The victim comes back stronger than before. We see it in television commercials and news reports all the time. We are reminded of the 9/11 tragedy and the rebuilding of the World Trade Center. Immediately after the Boston Marathon Bombing, news reports, especially sports reports, highlighted the idea of being Boston-strong. Every evening, we are reminded that the New Jersey shore is open again for tourists, because “we’re stronger than the storm.” We’ve seen the same sentiment in New Orleans and Oklahoma.

What were the other definitions and questions that were running around in my head? The first involved the research that I had done about the idea of neuro-plasticity in relation to my situation. In my readings I found a number of scientists who said that my condition “was what it was, and I should learn to live with it.” Other scientists said that it was possible for people to change their brains to relearn skills or learn new skills to replace the ones that were lost. In a sense, this was a type of recovery. However, the scientist took great pains to emphasize that it wasn’t the former individual. In a real sense, it was a new individual. This is a slightly different view of resiliency. It still holds some hope for victims that they can become new individuals with new skills that in some sense may replace the ones that they lost. However, they will not be their “old selves.”  They will be someone different with different strengths and skills.

Many of the neuroscientists  I read concerning brain plasticity, referenced a new growing science of resiliency. As I researched this, I found it has quite a following among environmentalists, entomologists, and medical researchers studying bacteria and viruses. For these scientists, the primary idea is that one species or environmental state changes or evolves in ways that ensure the survival of the species or environmental state. Resiliency refers to the survival of the whole, not the survival or well-being of the individual. I am still trying to figure out what this has to do with neuro-plasticity.

More research on resiliency lead me to a fourth definition. This definition came from the popular psychologists associated with Psychology Today. In a series of posts they suggested that pyschology has identified factors that make some people resilient, while others wilt under pressure. The resilience factors were an optimistic outlook on life. These individuals are almost always positive. They have the power to regulate their emotions. This struck me hard. Prior to my TBI, I was always known as being even keeled, with my emotion under control. After the TBI with damage to my right temporal lobe, I have much more trouble controlling my emotions. I erupt much more easily. The third attribute of resilient people was that they could accept criticism  well, and could see failure as a form of helpful feedback. When Edison was asked if he was discouraged when experiment after experiment failed when he was trying to invent the light bulb, his answer could have been the battle cry of the resilient ones: “Of course not. I now know a thousand things that won’t work. I will soon find the one that works.”

But I wasn’t done with resiliency. Some lines from a hymn kept playing in my head. As usual, I had only part of the words, so I had to do a search to find the hymn. The words that were echoing in my head were, “When sea billows roll.,” I was more than slightly embarrassed when I discovered it was one of the most popular hymns of all of Christianity, “It Is Well with My Soul.”  

The words of the first stanza are

When peace like a river attendeth my way, when sorrows like sea billows roll; Whatever my lot, thou hast taught me to know [say], It is well; it is well with my soul.

The story behind this hymn involves a tragic sea accident. The words were written by Horatio Spafford just after he got a telegram from his wife informing him that only she was safe. She had to tell him that all four of his children were killed when the ship on which they were traveling to Europe sank. Spafford was a modern day Job. Almost everything he loved was taken from him. His response was “Praise be to God.”

I don’t believe that it is inherent to us. It is a gift of a loving father to his children. If we accept God’s grace, we like Job can say,

…, ‘Naked came I out of my mother’s womb, and naked shall I return thither: the Lord gave, and the Lord hath taken away; blessed be the name of the Lord.’ (Job 1:21 KJV)

This final type of resiliency is a resiliency built upon faith in a power outside of ourselves. I have seen it my life. I can truly say, “We serve a God of miracles, not a God dedicated to our convenience.” We should reply with our tears, like the father asking Jesus to heal his sick child. When asked if he believed,  the father replied,

Lord, I believe; help thou mine unbelief. (Mark 9:24b KJV)

“Lord, give me your resiliency. Help me in my unbelief.”

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Experience Is the Best Teacher of Patience and Wisdom

Two of the greatest virtues that humans can possess are patience and wisdom. The following photograph illustrates how the two virtues can be reluctantly brought together. Given the expression of utter frustration on the dog’s face, I am confident that the dog did not learn the patience and wisdom needed in this situation from a stint in obedience school. He knew that he had to give that skunk a wide berth and access to the food bowl. Most likely, he learned the lesson in the experiential school of hard knocks.

 Skunk eating dog's dog food

What’s the relationship among experience, wisdom and patience? Three quotes may help us.

1. By three methods, we may learn wisdom: fIrst by reflection, which is noblest; second by imitation; which is easiest; and third by experience which is the bitterest.” (Confucius)

The expression on the dog’s face reflects a very bitter experience. It certainly helped the dog learn the wisdom of not crossing a skunk.

2.“All human wisdom is summed up in two words: wait and hope.” (Alexandre Dumas).

Although the word patience is not present in the Dumas quote, the close synonym “wait” is front and center. Obviously in the picture, the dog is waiting for the skunk to finish its meal, and hoping that there will be some food left.

3. “Experience is not what happens to you; it’s what you do with what happens to you.” (Aldous Huxley)

Your experiences are not the events that swirl around you. They are the lessons that you learn and appropriate.

To summarize the importance of wisdom, let us go to one of the wisest individuals to ever live. Listen to King Solomon:

Wisdom is the principal thing; therefore get wisdom: and with all thy getting get understanding. (Proverbs 4:7 KJV)

I was drawn to the above picture for two reasons. The first reason is my recent experiences with skunks. Since my TBI’s in 2009, I have only smelled the telltale aroma of a skunk once. I no longer “smell” skunks. I see skunks. This is one of my dysesthesia (cross-sensory perceptions). When the aroma of a skunk is in the air, it causes me to see the vision of a dead skunk on an unidentified road. This particular dysesthesia has its own advantage. It protects me from a very unpleasant odor.

The only time I smelled a skunk is another story. One day as my wife and I were riding in our car. I “really” saw a dead skunk along the side of the road. Suddenly, I smelled the pungent aroma. I exclaimed to my wife, “Well, what do you know, I smelled that skunk!” She hesitantly replied, “Honey, I’m sorry but there’s no skunk odor.” She continued by saying that she saw the dead skunk and was very surprised that there was no aroma emanating from it. So instead of ridding myself of this particular cross-sensory perception, I had picked up another hallucination. My memory of skunks had kicked in. The sight of the dead skunk triggered the repressed memory of a non-existent odor.

The second reason this picture fascinated me was the fact that it reminded me of the pet dog I had for 17 years, as I grew up. All he needed was one encounter with a skunk that he had when he was still a puppy. He never messed with one again. Experience was a great teacher, and my dog learned well. Although he was a small fox and rat terrier mix-breed, he was feisty and very jealous of his domain. He was accustomed to chasing any four-legged creature no matter how big or fierce that dared to venture into our yard, except skunks. It was funny watching him trying to herd the cows from our neighbor’s farm back into their own pasture. I often wish I had the foresight to capture the looks of shame and resignation on the faces of the cows as they slowly meandered back into their pasture, and the look of joyful victory on the face of my dog as he barked a couple of taunting “Goodbye and good riddance”  from his side of the fence. He had proudly defended his territory again. He had no fear of huge cows, but he steered clear of skunks.

All of this reminded me of a quote about learning that is usually attributed to Mark Twain: “A man who carries a cat by the tail learns something he can learn in no other way.” Please believe, I am not advocating carrying a polecat by the tail unless you want to learn something you and anyone else who comes in contact with you with never forget. I may not be able to “really” smell a skunk now. However, I do remember what their odor smells like, and I do not wish to tempt my sensory perceptions that far.