It is not my penchant to read Lancet or the New England Journal of Medicine and similar publications from cover to cover. In those august publications, scholars, clinicians, professors of medical science and physicians explain and debate matters of interest to the medical community. Significantly, journals of that sort almost exclusively state the case for the professionals in the field. While those views are examined at length, it is odd that the one major component in this mix is often overlooked and perhaps, ignored. That would be the patient.
To remedy part of this oversight, an essay called “The Effects of Aphasia” was prepared here in November, 2002. Its purpose was to offer the views, the experiences and the conclusions of a man who, at that time, had had a five year encounter with aphasia.
If Representative Tom DeLay or Senator Physician Bill Frist had cited my essay when they jammed the unconstitutional legislation through Congress in a Sunday midnight session on the Terri Schiavo matter, they would have been on much sturdier grounds rather than the grounds they used which consisted solely of impenetrable smoke and severely distorted mirrors. The courts have subsequently shown that to be the case.
Now that my views on aphasia have been circulated, it seems appropriate to offer my empirical views on the differences between aphasia and random memory loss. The layman’s definition of aphasia is the loss or impairment to use words. There may be those who will argue that the “loss or impairment” is a consequence of random memory loss. With all due respect, the argument from this corner is that while loss of memory may possibly have some effect on the ability to use words, random memory loss is a failure separate and distinct from aphasia. Before any of my readers call the cops to have me committed to an Alzheimer’s treatment facility, it should be remembered that this is an empirical study based upon my experiences as a patient and what are considered to be my rational conclusions. So put down the phone and hear me out.
The Ed Carr doctrine relies heavily on the belief that strokes cause aphasia and that subsequent seizures are responsible for random memory loss. Let me give you one example as to why it seems to me that my conclusion is warranted or perhaps, inevitable. If my experience is so singularly different, what could possibly account for such exclusivity? My belief is that others who have experienced strokes followed by seizures have had experiences similar to mine.
Ever since the stroke of November, 1997, as one small example, it has been difficult for me to recall and to retain the word “cardiologist.” My notes had to be consulted today before that word could be written. At the Summit Medical Group, if someone encounters me in the parking lot of the main building and asks, “Where are you going?”, my answer is to point across the street to where the heart specialists are in residence. My wife who knows of my aphasic condition will say, “Oh, to the cardiology group.” My affirmative nods make it appear that the word “cardiology” was known to me all along. If, however, a stranger sees me alone and asks about my destination, pointing across the street is my eloquent and usually only answer. THAT, MY FRIENDS, IS APHASIA! The word “cardiology” ordinarily eludes me, even though Andrew Beamer had been my cardiologist for a long period of years and is regarded by the Carr family with considerable admiration.
In the late 1950’s, Tom Scandlyn joined the AT&T labor group. He has been my friend and associate for all the subsequent years including 2005. Tom retired around 1982. There was a party at a restaurant near the Somerville Circle in suburban New Jersey. As a long term friend of Tom, it was my pleasure to attend that function and to wish him well. My wife says she clearly remembers my attending that festive occasion. Today, there is no recollection of that party anywhere in my mind. On the other hand, years before Tom was known to me, he married a gentle lady physician known as Naomi Green. Over the years, there may have been four or five occasions when Naomi Scandlyn had reason to meet with me. Yet Naomi’s maiden name is readily available in my memory, but memories of attending Tom’s retirement party and meeting Naomi there seems forever lost. THAT, MY FRIENDS, IS RANDOM MEMORY LOSS. It has to do with a loss of memory of an event that happened long before there was a stroke or seizures became a factor.
We know that some strokes such as mine cause a lesion in the brain which leads to aphasia. That seems to be settled belief. On the other hand, random loss of memory of attending functions, of meeting people and forgetting directions to well known locations, seems to me to be attributable to seizures – separate and apart from not being able to recall well known words. As soon as my bona fides are stated for advancing these thoughts, there will be other examples which may tend to prove the Carr doctrine.
What normally would have been my early college years were spent working and serving an enlistment in the American Army in World
War II. Thus, my academic record is unblemished by attendance at any college, university or medical school. First Aid classes were never compelling to me. If a soldier, theirs or ours, was hit by enemy or friendly fire, bleeding may well have resulted. That is about the extent of my early medical knowledge. Since leaving the Army, my association with the medical arts has been extensive and exclusively empirical.
My 48 year work history was marked by jobs in which the ability to speak without notes was paramount. Reading previously prepared position papers is largely unheard of in labor negotiations, lobbying and in international relations. The subject has to be mastered and must be presented convincingly. In musical terms, the response must be delivered a capella. Obviously, memory is the crucial ingredient in those processes. Doing all this presented no problem to me as my memory served me well during my working years.
My neurological history looks like this:

July, 1992 – Transient Ischemic Attack
November, 1997 – Stroke
August, 2002; June, 2003; May, 2004 – Seizures
June, 2004 – Partial seizure without hospitalization

The first two seizures were caused by inadequate blood flow which was corrected by a pacemaker in June, 2003. The third seizure may be attributable to a drug which caused an electrolyte imbalance. The partial seizure was corrected by increased Dilantin (anti-seizure medication) intake.
It is my belief that my loss of memory became apparent after the first seizure. It may be a guess, but remembering a negative such as loss of memory is smokey work. For purposes of discussion, my belief it that memory loss did not occur after the stroke. It happened after the seizures.
Aphasia has been a consideration since the 1997 stroke. As time has gone on, aphasia has abated substantially. For example, in the first three years, it was largely impossible for me to recall the word “persimmon.” Even when my wife gave me a clue by identifying their type as “Hachaya,” my score would be no better than 50 percent. In the last year or two, my brain can think of “Simmons” as in mattresses. The rest of the word now comes fairly easily.
The word “aphasia” can be recalled only between 50% and 60% of the time when it is needed for speaking or writing. And this is more than seven years after the stroke.
You know about my problems with “cardiology.” There is no latent fear or distaste for anything the cardiologists have ever done to me. Earlier we said that Andrew Beamer has been my long time cardiologist whom the Carr family regards as a friend. It is not caused by anything Andrew Beamer has ever done. Aphasia in itself prevents me from calling the word “cardiologist” to mind. So go figure!
A third word that takes two out of three falls from me is “glaucoma.” This is an enigma wrapped up in a mystery. Shortly after 1930, my father was diagnosed with glaucoma. By the time he reached 60 years, he was blind. His five children all inherited glaucoma. In my own case, the ailment or disease caused me to lose my left eye in 1994. The remaining eye has been in a hazardous position for about four or five years. Glaucoma is a word known to me from my early childhood, yet it has fallen victim to aphasia. Eric Gurwin, who has spent an inordinate amount of time worrying about my remaining eye, is my ophthalmologist. He is sufficiently busy trying to save my remaining eyesight, that he is spared the fact that my mind is impaired in speaking the name of my problem. Eric Gurwin is a good man. His efforts seem to be succeeding.
These examples are intended to be illustrative as there are several other words that are difficult to bring to mind. Aside from words, there are difficulties with doing small math problems in my head. Finding words in dictionaries and names in telephone directories remain an annoyance. “M’s” and “N’s” tend to get confused so if my search takes me to “NINO,” it may be my misfortune to find myself looking in the “M’s” for “Nino.” It is not a particularly pleasant ailment, but it can be lived with.
The crucial point here is that in my mind, there is a complete composite image of the cardiologist, of the ophthalmologist who speaks of glaucoma and of the produce section of grocery stores where persimmons are kept. These facts have not been forgotten. All that is known to me. But aphasia often prevents me from giving voice to the appropriate word.
In the previous essay on the effects of aphasia, there is a recounting of the heat in the Intensive Care unit of Overlook Hospital. Even with a stroke being less than 24 hours behind me, the ward had become overheated. At that time, “warm, cool and thermostat” were completely beyond my recall, but the problem was clear to me. Borrowing a pencil and a scrap piece of paper from a nurse, a crude picture of a thermostat was drawn. At that point, acting became my role. If the imaginary needle was pointed to the left, there were shivers. To far to the right an imaginary sweat would appear. The nurse got the picture and showed me where the thermostat was hung on the wall. Knowing about warm, cold and thermostats was clearly in my mind. Those words were known to me. Giving voice to the words was my new problem.
If there had been no recollection of thermostats, or if there had been no memory of my cardio-vascular problems, or if there was no recall of glaucoma, that would have been a matter of memory loss. The point here is that all these conditions are more than well known to me. They were not forgotten. Finding the words to give voice to the problem is a matter of aphasic considerations.
Now let us move on to a few examples of memory loss. Why one memory may be recalled instantly and another forgotten completely is something for clinicians to ponder about. Lisa Coohill, M.D. at the Summit Medical Group, who has kept seizures on the defensive in my case, is appointed my chief ponderer. For example, she may ponder about my remembering a drunken GI diving through the window screen between the bunks or Werner Friedli and Steve Thorin in Africa back in 1944, and yet a few more recent events have disappeared from my memory. And so that is why this section is called random memory loss.
Two or three examples may establish my point. In the AT&T Overseas group, there was a lovely woman who lived in Greenwich Village. She was known as Jane DeCosmo and as far as anyone knew, she had never married. Our offices were first at 32 Sixth Avenue, then at #5 World Trade Center and then in New Jersey. Jane would often buy pastries in the Village and bring them to her co-workers. Jane was a very likeable person.
After AT&T moved to New Jersey, she was forced to use a railroad and a taxi to get to work. After retirement, Jane was confined to her apartment in the Village by a debilitating ailment. She sent word that she preferred to receive no visitors to see her in her weakened condition. All of this is known to me because Judy, my wife, is impressed that now, there is no memory of any kind in my mind of Jane’s illness and later, death. Jane DeCosmo was enjoyable to be around. My files are filled with letters that were written on occasions of anniversaries, promotions and bereavements including some to Jane. Unhappily and unfortunately, my memory of Jane seems to have stopped before she became ill. Forgetting Jane’s final struggle is not a matter of aphasia; it is a matter of random memory loss. And it is sad, sad business.
Then there is Walter Fennessey who was responsible for dealing with telecommunication’s authorities in the sub-Sahara countries. On a cold day in January in New Jersey, Walter seduced me by talk of palm trees and the warm climate in his “countries.” Walter knew that my Army service had taken me to many of the countries he called his own. So it made me very happy to ask Walter, “When do we leave?”
It was a ten day trip to five countries. On a Saturday evening we were the dinner guests of the Director General of the Ivory Coast Telecommunication’s Directorate. The first course was exquisitely done lobster. That course reflected echoes of classic French cuisine. Surely, the next course would be dessert. Not so fast. The lobster was only an appetizer. The next course was frogs. Not frog legs; the whole frog. This was African cuisine. After the frogs, our host asked if we had ever eaten monkey paws. We punted. Maybe next time. That dinner gave Walter, a garrulous Irishman, a conversation-piece for quite a while. My Celtic background compelled me to mention the frogs – and the near escape from monkey paws – several times to gourmet observers. Also to non-gourmet observers.
An essay was composed here some years after the trip. It was read by Walter’s granddaughter to her fourth or fifth grade class in school. Walter sat in the back of the room and enjoyed it immensely.
Walter died at much too early an age. Judy, my wife, and this old African traveler went to the funeral parlor to sit with Walter’s family. According to Judy, Walter’s family treated me with great friendliness and courtesy as though they had always known me. And my memory retains not a hint of that evening with the Fennessey family. Again, that is not a case of aphasia; it is a clear case of random memory loss.
At my request, Judy has written of six or eight other incidents where parties were attended or where people were met and which arouse no memory of any kind on my part. One of the incidents involved house-hunting in the St. Louis suburbs, my hometown. None of them even come close to ringing a bell. In a way, my reaction is one of unhappiness and perhaps even some sorrow. In any case, all of these incidents have to do with random memory loss, not aphasia.
There is one other factor that needs to be cited here. My career at AT&T started as a draftsman which led to my being promoted to work on cable route maps, which is a form of cartography. So maps are very familiar territory to me. My Army flying days taught me to study the ground so that if the plane were forced down, we might have a better idea about where to walk or where to run away from. So knowing the location of things has always been important to me.
For seven years, my journey to work took me on several state and federal highways in New Jersey and New York. For an extensive period of time, there were mountain bikes that took Judy and me all over Northern New Jersey. Yet, when Judy mentions a place where we have been, it is much more than likely to draw a vacant stare from me.
When someone makes reference to our national highway system, it is sometimes a blank to me. If someone were to ask me to describe the routes taken in going to work, they would be sorely disappointed in my response. In my view, forgetting directions such as this is a matter of memory loss – not aphasia.
My driving career of 68 years ended over the July 4th weekend in 2004 because of diminishing eyesight. The inability to find my way in even slightly unfamiliar territory was also a factor. To top it off, there was hesitation in remembering where controls such as the switch to turn on the headlights was located. Clearly, it was time to retire before someone was hurt.
Finally, my date of birth was 1922. For those who contend that life begins at conception, 1922 may also be my DOC as well as my DOB. This of course, is undocumented, hearsay evidence. Those points are injected here in the event my future political plans call for me to run for the United States presidency. They are also injected here as a response to anyone who says my occasional loss of memory is a product of advancing age.
While memories of the events surrounding the deaths of Jane DeCosmo and Walter Fennessey may have escaped me, for example, details of much earlier Army life are still vivid such as the drunken GI plunging through a screen. While the facts surrounding Tom Scandlyn’s retirement party are now gone, my memory of introducing Charlie Brown, AT&T’s chairman, some years later are still with me in considerable detail.
Why one memory is retained while another is forgotten is a matter that will be left to the professionals. My argument remains however, that random memory loss is just that and not a product of aphasia.
This has been a prolonged recitation of my memory woes, but there is great confidence that random memory loss is not a function of aphasia. They are two different breeds of cats.
The delightful part of this proposition is that it has always been my intention to look at what is left to me as opposed to what has been lost. Using that philosophy, my fortune is that even with some memory loss, words of speeches made as long as 55 years ago come back to me and occasionally keep me awake. When such a speech intrudes on my mind, it must be recited from beginning to end before sleep occurs. Poems and the lyrics of songs are easy for me to recall and give me great pleasure. Citations from books read many years back, particularly those of Henry Mencken and A. J. Liebling, are usually easy to remember. I also remember what I had for dinner last night, and the fact that turbot (my favorite) has not been available at the market for a long time. So there is no need to look in the yellow pages for an Alzheimer’s treatment facility.
This essay comes about from observers confusing aphasia, which afflicts me, with random memory loss, which is also familiar territory. It was my intent to demonstrate empirically, that these factors are two different matters. It is my argument that the debate about these matters is not a distinction without a difference. Strokes produce aphasia. Seizures produce random memory loss. My only concession is that one may lead to the other, but my belief is firm that we are dealing with two different disabilities.
Finally, it is my hope that if you haven’t had a medical or spiritual conversion experience from reading this essay, at least you may think a little differently now about aphasia and random memory loss. Back on page two of this work, where you were urged to hear me out without
calling the cops, that advice was offered in the hope that you found reading this treatise to border on being worthwhile. There is a move, sponsored mainly by me, to get the Carr doctrine upgraded to dogma. Anyone who doesn’t accept the dogma in all respects will be the target of a fatwa from Ahmed Chalabi of Iraqi fame. And remember, the word is cardiology, not chiropractic, or chiropodist or chiromancy, which has to do with reading of palms.
E. E. CARR
March 30, 2005
~~~
It’s interesting here that for the purposes of the essay, he was able to remember the act of forgetting about all these incidents. I’m guessing Judy helped quite a bit with this one. And that’s kind of the scary part, isn’t it? Unless someone else prompts you, you have no real way of remembering what you’ve forgotten. So if it’s something that you did alone, or did with someone who you’re no longer in touch with, you could not only lose entire swaths of memory, but also be totally oblivious to the loss. Left to its own devices, your mind slowly churns memories from fresh and sharp into unknown-unknowns. God knows you’ll never forget the words to television jingles or songs you hate, though.
If that wasn’t bad enough, memories tend to degrade and change each time they’re accessed; every time you remember the same incident, you’re not remembering the original thing itself — rather, you remember the last time you remembered it. So you’re constantly playing telephone (or Chinese Whispers, for international readers) with your own brain. Consequently, some of the things you remember most clearly may be the most distorted.
I guess that’s why we’re all photographing every second of our lives these days. Fear Of Missing Out is a pretty well documented neurosis in my generation, but until now I hadn’t thought of its applications to one’s own past.