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Bloodhounds and Aphasia

As some of you know, a little over three years ago, I experienced a stroke-like event. It was due to a hemorrhage in a meningioma attached to the right frontal lobe of my brain. Although this event wasn’t technically a stroke, it gave all the appearances of a stroke. It also left with me with many of the after effects of a stroke. I am constantly fatigued. I have balance issues, muscle weakness primarily on my left side, short-term memory lapses and a mild case of aphasia.

Aphasia is an acquired communication disorder that exhibits itself through the partial or total inability to process language. My mild case of aphasia affects me primarily in two ways. The first way is in the speed at which I can process language. My language processing speed has slowed down considerably. Thus, I have more problems with verbal communications. Written communications give me more time to process the language. The second problem I have is the occasional inability to find the most appropriate word to fit the situation. As suggested above, the pressure of a quick response demanded in a verbal communication seems to acerbate the problem of lost words.

What do bloodhounds have to do with aphasia? Bloodhounds are gentle, loyal, good companions. They are also hard working and persistent. They don’t quit until their job is done. What is their job? It is to find someone or something that is lost. Bloodhounds are the perfect mascot for the team battling against aphasia. They represent hard work and persistence that a sufferer of aphasia must exhibit in searching for lost words. They represent the loyalty, gentleness, and constant camaraderie of caregivers, not only in the midst of active searches, but at all other times as well. They respond best to an owner or trainer who exhibits calm but stern authority.

Why did I associate bloodhounds with aphasia? Recently I became bogged down in an attempt to write something. The words I needed to completely and accurately reflect my thoughts were lost. This episode reminded me of a neighbor from my early teen years. This particular neighbor raised and trained bloodhounds. He and his dogs were very good at what they did. They were in constant demand by local police to help locate missing people, especially children or dementia patients who had wandered off. At that moment I realized that I needed a good bloodhound to find the right words that were lost in my mind.

As I tried to develop this metaphor, I found that I was playing two different roles in this play on words. At times, I was the handler providing the dog with the initial clues to point the dog in the right direction, or helping the dog by redirecting him to possible new trails. At other times I was the dog rooting through the intertwined brush and rocky crevices and canyons of my mind trying to sniff out the right words.

At the end of every search, the emotions of the two players were mirror images of each other. At the end of a successful search, the trainer would grab the dog around its neck. He would rub the back of its head and neck in celebration. He would say excitedly, “Good dog! Way to go!” It was amazing to watch the joy of the bloodhound, nodding his head up and down in quick jerks, and yipping happily. It seemed as if the dog was saying, “Look at what I just did. I found the lost child or person.”

 On the other hand, when a search was shut down in failure, it was depressing to watch the bloodhound hang its head and howl with a sad cry that expressed the soulful dejection inherent in failure. The trainer would call the dog to him. He would put his arm around the neck of the dog pulling it close to him. He would gently rub the back of the dog’s neck and head and soothingly say, “That’s alright, boy. You’ll get him next time.”

Now, when I face the challenge of finding the right word, I will think of a bloodhound. I hope and trust that there will be more joy than sadness at the end of my searches. To increase that likelihood, I know it will take more practice and training.

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Random Events, Conditions, Diseases, Disorders, Part I

Random Events, Conditions, Disorders, and Diseases: What, if any, are the differences between these terms? The term “random event” carries with it the connotation of a single event for which an explanation is difficult, if not impossible. The term “condition” carries the connotation of repeated events, which may occur with regularity or in a predictable pattern. The term “disorder” carries the connotation of a condition which is caused by an identifiable internal malfunction, or design flaw. The term “disease” carries the connotation of a condition which is caused by an externally introduced agent.

  Why am I concerned? Should I be concerned? Should others be concerned? The human side of these questions includes the human psychological need to name, identify and control internal and external events. However, it also includes the practical side to these questions because insurance reimbursement almost always requires the identification of a problem. Insurance companies are usually hesitant to reimburse for the treatment of a “random event.” I have been questioned on coverage until the random event could be identified as part of a condition or disorder.

I began thinking about this post in relationship to my concerns and questions connected to my recent battles with health, communication, physical abilities, and mental capabilities. However, as I have talked and exchanged emails with others, I have found that I was not the only person to ask these same and related questions. The article, “Branding a Soldier with Personality Disorder” in the February 25, 2012 edition of the New York Times, raises the related concern of a hierarchy among disorders. The article may be found at <http://www.nytimes.com/2012/02/25/us/a-military-diagnosis-personality-disorder-is-challenged.html?_r=1&nl=todaysheadlines&emc=tha2 >

This hierarchy among random events, conditions, disorders and diseases affects the coverage and treatment that one can expect to receive. Senior moments receive less attention than aphasia. Senior moments receive less attention than dementia or Alzheimer’s disease. Tremors receive less attention than Parkinson’s disease.

With these states of affairs stacked against an individual, it is imperative that individuals and their caregivers be prepared to insist upon and fight for the best and most appropriate treatment available. Given the current fiscal model under which medicine operates, the best and most appropriate treatment available may not be the first option offered to patients and their caregivers, if any option is offered at all.

Please understand that I am not condemning the medical enterprise for this state of affairs. I have spent 40 years in higher education. It has its own difficulties that many believe begin with a broken fiscal model. This often means that the best and most appropriate education is not always offered to students. At the risk of starting a philosophical war I invite responses to the question: “Are education and medical care, a public or private good?”

 

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Evolution of Normal

The 12/01/11 posting on FindingStrengthtoStandAgain’s Blog, “The Day the Wind Caught Fire” <http://findingstrengthtostandagain.wordpress.com/2011/12/01/the-day-the-wind-caught-fire/#comments> is a must read for all individuals who have suffered a traumatic brain incident. The caregivers of these individuals should also read this inspiring posting.

I must admit my initial reaction to the title was that the posting was going to be about the Santa Ana winds and fires that are devastating parts of California currently. When I opened the post and saw the first picture, I was convinced that the posting was going in the direction of talking about wildfires. As I read the posting, I discovered that it was indeed about wildfires, but not the physical wildfires that scar our earth. It was about the internal wildfires which strokes or other traumatic brain incidents (TBIs) precipitate.

Those of us who have had a TBI and our caregivers know all too well about those wildfires. Tara is the epitome of a great teacher. She has had the courage to share her wildfires with us, so that we can learn from them. In this posting, she shares two lessons with us.

The first lesson relates to educating everyone about the after effects of a TBI. She correctly states each individual is different. She encourages everyone to work to see that the handbooks and guides given out to predict a TBI survivor’s outcome should not be one size fits all. We need to set our sights above those predictions, and remember everyone will progress differently. Each TBI affects a different area of the brain in different ways.

The second lesson struck home with me. Individual TBI survivors and their caregivers must have patience and take time to understand how the survivor’s “definition of normal will evolve.” I am still struggling to learn its implications in my life.

After spending 40 years in the academy immersed in analytical thinking, it was very difficult to wake up in the hospital after the removal of my brain tumor and find that I was now living in a metaphoric world. After all, metaphors were just the word pictures which you added to the end of your reports to help the uninitiated understand what you were trying to say. They were the icing that you put on the top of the cake that you baked in your analytical, sequential, deductive oven.

I have tried very hard to return to the analytic world and at times I find myself visiting it. I have not yet been able to make the warp jump into a more permanent return to the only world that I knew for 50 years. However, as I explore my new metaphoric world, I have found some very interesting things.

In James Geary’s book I is an Other: The Secret Life of Metaphors and How It Shapes the Way We See the World,” I discovered that “metaphors were a way of thought, long before they were a way with words.” From my study of learning theory, I should have known this. We learn by tying new and unknown things to old and known things. Metaphors are a comparison of something unknown with something we already knew. Understanding this, life in a metaphoric world became more tolerable. My normal evolved. I haven’t stopped striving to regain pieces of the analytic world I left behind, but I can now live peacefully in my new world and honor it.

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Relationship between patient and caregiver: pas a deux

In a previous post I suggested that the relationship between a patient and caregiver must be a pas a deux, a dance for two. If any dance for two is going to work, the pair must move and work together, even though each individual has his or her own responsibilities. In a pas a deux one individual must follow the lead of the other, generally in the relationship between the patient and caregiver, the caregiver will provide leadership.The patient must have confidence in and respect  the leadership provided by the caregiver. However, the caregiver must read carefully the signs from the patient and have the courage to make any adjustments must be made. The patient needs to be aware of where the pair is going and what they are doing. If the patient detects deviations from the destination or the route, the patient must be ready to communicate this with the caregiver. If this pair is to work well together, they will find that it is necessary to practice. A good pas a deux is not a once and done event.

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Gazing into the Abyss – a Deux

The title of this  posting is my latest attempt at using a double entendre (a word or phrase with  two meanings). It is also an attempt to get back to my former self. As I  conceived the idea for this posting, I was well aware of the concept of a word with two meanings. I used to have a reputation as a great punster. A punster likes to play with words, and is usually considered a master of the double entendre. However, this past week I had to Google “word with two meanings” to find the phrase “double entendre.” That particular phrase was not coming to me his week.

Due to my battle with aphasia, I lost some of my ease with words. Many times when I am searching for a word, I feel like I am in a cold, dank and dark coal mine, bent over on my hands and knees crawling into the small crevices of my mind. When I get to the back of a crevice, I have to painstakingly claw through the mother lode of words that I find with a small pick and shovel for words to express my ideas. Although the images of what I want to say are very clear in my minds, the words I need to use to express those ideas are compressed into the hardened walls of my mind.

At other times,almost the opposite occurs. I find words or ideas jumping into my mind like Asian carp jumping out of a stream into boats when the stream is disturbed However, just like the Asian carp, once the words or ideas are in my mind, Idon’t know what to do with them. That’s why I carry a small notebook with me at all times, so I can write down these words and ideas, so that I can return to them when I am in a better position to do something with them.

The double entendre that I was trying to use in this posting is the phrase a deux. The first meaning of a deux comes from a French idiom for the phrase pas a deux, which means a dance for two. I believe the relationship between a patient and caregiver very closely resembles a dance for two. I will follow-up on this idea in another  posting.

The second meaning of a deux comes from the cinematic scene. Ever since the movies “Hot Shots” and “Hot Shots—Part Deux” became box office hits, Deux has come to be associated with the idea of a sequel. Thus, at this level, I mean for this posting and any other follow-ups to be sequels to my earlier posting “Gazing into the Abyss.”

In movie parlance, the word sequel can itself be a double entendre. A sequel can be a continuation of the first movie, picking up the story where the first move left it, or it can be an amplification of the first story. I intend my sequels to be an amplification of the original posting. Oops, I let the cat out of the bag–there will be more than one sequel.

As a result of the posting Gazing into the Abyss, several individuals have commented that I led them to the brink of personal abysses and left them looking into the black hole of themselves. That is definitely not what I intended. What I was trying to say in the last paragraph of the posting, was that one of the most important things I can do is stand on the edge of the abyss waving a yellow caution flag and yell: “Stop gazing into that abyss, or else it might start gazing back into you and begin to draw you into it.”

I am not alone in this task. Fortunately, through the close-knit communities of patients with aphasia and epilepsy and their caregivers, I have encountered a number of other individuals or groups that are working diligently to wave yellow flags and warn others. In several follow-up postings I will highlight two such individuals, with  blogs “Bendedspoon” and “Findingstrengthtostandagain.”

I will also do follow-up postings about two organizational or group blogs or websites. In case you can’t wait to get a head start on these last two categories, they are Aphasia Corner at <www.aphasiacorner.com> and the Epilepsy Foundation of America at <www.epilepsyfoundation.org.> (If you check out aphasicorner.com I invite you to read my essay that is featured in the lower right hand corner of the front page of one their issues and also available at <http://aphasiacorner.com/blog/living-with-aphasia-2/aphasia-friendly-words-are-more-like-cats-than-dogs-274>)

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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.