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    • In Memoriam - Linda Lea

theory vs experience

Theory versus Experience        Rachel is one of the most important people in this story, so allow me to introduce her.
        At this point, we had been married for a dozen years. About ten years previously, she had become pregnant. The doctor had induced labor at what he had thought was the appropriate and, for her health, the necessary time, but the boy had not lived, had never taken his first breath. This event became the defining point of both her life and mine.

        In fact, this tragedy encouraged me to join the Harkness Immortality Mission (HIM) when the opportunity arose some years later. Yes, “immortality” seemed a bit of a stretch, but the objective, to gain a longer lifespan, seemed like a noble cause.
        For Rachel, a period of dark depression followed the loss of our son. Nothing brought her back to life until she happened to meet a young mother with an autistic son.
        A remarkable number of children were being diagnosed as being on the autism spectrum. The percentage of children affected was increasing so rapidly that there were concerns about when the increasing rate would stop. Medically speaking, there was neither a known cause nor a cure, only a recording of its increasing prevalence each year.
        The friend’s child was living in his own inner world, having difficulty interfacing with the outside world. He avoided eye contact but kept manipulating the crumpled piece of paper in his hands. If this autistic child had spoken aloud to Rachel and said, “Help me!” the impact of this introduction could not have been more transformative.
        When I returned home from my work that evening (this was just before I had discovered the Harkness opportunity), she was more enthused than I had seen her since before the loss.
        Her greeting was less a greeting than a vow.
        “Evan, I am going to nursing school. I have researched the requirements, and I have the necessary prerequisites. There is a three year degree with an emphasis on children that I want to pursue.
        “There is the possibility of a program in which I promise to work for 5 years for the children’s hospital and they will cover my tuition. I can probably even work there as I go to school.”
        Stunned, I was silent for a minute, taking in the stream of information and this reversal in her personality.
        She prodded. “What do you think?”
        With relief and a smile, I responded, “I think it sounds great if that is what you want to do.” Indeed, almost anything that would engage her in something beyond her grief would probably have been acceptable.

        And so she began her work at the hospital a week later, performing the most menial of tasks. New classes did not begin for two months, but that gave her time to adjust into her new job, which became part time as studies commenced.
        Shortly after she began her studies, I learned of the opportunity at Harkness.
        At that time, I was an instructor at the university. Theory was more my interest than practice, and Harkness offered an opportunity for a more direct impact in the field of health. Here was the possibility of participating in exciting discoveries rather than launching physicians out into the world like a shotgun, not knowing who would accomplish what.
        As we later talked of our work, each put the other’s work under the column “interesting” and their own under the column “relevant.” While she made one-on-one real changes in the lives of individuals, I always assumed that the changes that I made would benefit the lives of faceless millions.
        Looking back, we were resolving our pain in the best way each saw fit, and we each viewed service, contributing to others, as the most direct route.
        Neither of us realized at first that we were headed in opposite directions.

        I thought my work was in the name of science for the good of all, but I misunderstood the business of science.
        When a conclusion or a desired outcome is set in front of scientists and money is given to do the research, it is amazing how they will find the steps leading to the desired outcome based on the prevailing theory. The idea of observing objectively and following the steps to their conclusion is relegated to the naïve and the pedantic. 
        At a later point in life, after volunteering as a guinea pig for Harkness in the first human trial, the joke saying, “Medicine is a science; every day is an experiment,” seemed on target. The lack of knowledge of possible unforeseen consequences was great, but the concern to us was small because of what we thought we did know.
        We knew so little about the interactions of the different organs, pathways, hormones, and a host of other organized functions within the body. Everything is connected to everything, but we insisted on limiting connections to what we did know and where we wanted them to be.

        During her three years of study, Rachel came to see the divorce between the theory and the reality of medicine, in particular, and between theory and reality in what passed for science, even life, in general.
        Yes, there is even a theory of life and what it is to be. Each of us holds such a theory, and usually it is the theory passed to us by our culture, modified by parents for day to day living, and finally adapted to the child’s unique experience and capabilities.
        The basic theories on life always have been the source of differences between groups, such as the enmity each of the three large islands of the nation of Atlantis felt toward the other two.
        But back to the medical world....

        Medicine had long passed the point where the revelations of the latest study caused changes in protocols. Most studies were funded privately and results tended to be in line with the theoretical views upon which that company’s products were based. Contradictions were not uncommon, and repetition of results in the field often failed.
        As her studies delved into “the mechanics of the body” (a phrase she increasingly came to loathe), her practical experience often pointed in a different direction.
        Our paths could have diverged at that point. After all, my group had a specific goal, measurably increased longevity, so our task was merely to find the most direct route.

        My workplace was the classic example of science misapplied: 1) we had men and women recognized as authorities in the field (power), 2) we had financial pressure to recoup a significant monetary investment (motive), and 3) the consensus of the scientific community that the end justified the means (cultural acceptance).
        Hubris is thinking I am in control, and I plead guilty, for myself and those with whom I yoked myself.
        And there clearly was the lack of a spiritual compass, as well as a moral one. To what purpose and of what quality was this longer life when the goal was a patented process with enormous economic gain?
        What was the purpose of this longer life that would serve both humanity and the individual?
        We had seen those rewarded who were not restrained by anything so quaint as ethics or morality. This was abrasive to me, but I disregarded my instincts and smoothed over the issue with some vague concept of this all being for “a greater good.”
        I viewed the gleaming buildings of the HIM campus (and all the buildings of science) as the light of the world. Looking back, they were but whited sepulchers, devoid of all the things that make humanity good: character, compassion, love, and the other intangibles that separate man from animal and inanimate matter.
        Being an academic unused to the pressures of the outside world, I resolved not to hold back progress unnecessarily but neither to sacrifice my ethics on the altar of practicality. Drawing a line between these two proved to be difficult.
        As I became more involved in the mechanics of a longer lifespan (a phrase I realized that I had to change to “the possibilities of a longer lifespan), Rachel became more involved with the environmental aspects of life, especially the relational ones.

        I remember a particular conversation that we had had as we each had become more enthralled by our chosen paths.
        At that point in time, I was seeing the possible solutions to our mortality through the pathways that we later altered genetically.
        Meanwhile, she was seeing marked improvements in her young patients due to lifestyle modifications, particularly diet and personal interaction.
        As we sat at a light dinner of sandwiches and herbal tea (neither of us had the energy or inclination to spend time on more elaborate meals), she began talking about the studies they were conducting with simple additions and deletions to the children’s diets.
        Reports from elsewhere had shown that examination of the intestinal lining of deceased autistic children generally showed greater permeability than the intestinal lining of non-autistic children. I was pleased to be able to make some comments about the value of scientific studies and the resulting evolution of theories and practices.
        Rachel agreed up to a point. She then noted that the medical journals reporting on such findings generally made a plea for a pharmaceutical remedy, a chemical cocktail, rather than the use of products freely available in nature. And so they had done here, noting that certain chemical properties might be used to restore the gut lining rather than to look at what had caused the damage and what would naturally heal the lining.
        “I admit that this is unfortunate, but plant growers are not going to fund studies. How are such discoveries to be made if there are not profit driven companies to fund them?”
        As I said the words, their senselessness jumped out in bold capital letters. Isn’t it odd how an idea in the head makes sense, but forming that idea into words reveals its lack of substance!
        I had to laugh, holding up a hand before she could speak. “You win. It is indeed a conspiracy for profit and control. So how are you using this information to help your young children?” I avoided the word “patient” since that is not how she wanted herself or the children to view the relationship.
        She momentarily smiled as I surrendered. “No, we ALL win when those youngsters are able to relate to their environment and the people around them, when they utilize the full potential given to them in the beginning.
        “You understand how the digestive system works,” and with the return of a smile, she added, “theoretically, of course. Can you see the connection?”
        I was not going to be sucked into this alone. “As YOU know, there are many characteristics of a healthy digestive system. The basics include a stomach with high acidity to break down protein, while the rest of the system is alkaline.
        “There are the necessary enzymes in the appropriate places to break down the proteins, carbs, and fats.
        “And then there is an intestinal tract, populated by the friendly microorganisms unique to each individual, where the final breakdown occurs. From here, nutrients pass into the bloodstream, and waste proceeds through the colon.
        “There are a number of other things like bile for fat breakdown, and we could pull out a textbook for a complete list.
        “What is missing in your children?”

        She held up her hand, “Don’t forget the immune system in the gut, and that thin lining that separates the contents of the intestines from the bloodstream.”
        Indeed, I never think about the fact that roughly 70% of our immune system is in the digestive system. This makes sense considering the fact that the mouth and digestive tract is the route most vulnerable to pathogens and toxic materials.
        “So which of these many variables is causing the autistic reaction? Is it the immune system?”
        Digestion had never been much of an interest to me. Like eating, it seemed a necessary part of existence and seemed generally to function well. Of course, it had its own rules, and violations of those rules could result in digestive upset and eventually a diseased state. But these effects seemed rather self-contained and with obvious symptoms.
        “I believe that all of them are involved with the children I have seen. The key issue is this: At what point did the direction away from health begin?”
        “The cause is always the question, isn’t it.” This was actually not a question, but a flat statement I made out loud as an affirmation of its validity for my own sake.
        As I spoke those words, my mind was busy. Is it just a male trait to want to “fix” things, or is it just generally human? After all, to fix something was to be in control, to be in a position of power. Fixing something was like reaching down to pull someone up. It was an exercise to show control, but I was coming to recognize more and more that our ability to control is less and less than I had thought.
        Prevention was far less exciting than fixing, but it was far more practical. Perhaps this was the most valuable lesson I was learning from Rachel.
        What had attracted me to medicine was really our entertainment media view of the medical profession: the heroic act in a crisis, the resolution of a problem and saving the unfortunate patient/victim.
        But reality is very different. Media do not show the long term process of discovering and removing causes for an individual with a chronic disease. There is no heroic act shown in a short time slot, only the day to day struggle of helping an individual in need, helping them to discover their unique imbalances and restoring balance. Such a narrative would have undermined the state health system, a chemical approach to disease management based on statistics.
        The real life of Rachel’s world was the antithesis of the professional approach.
        After a brief pause, Rachel leaned forward for emphasis. “I think autism often begins with the environment of the gut. Think what damage the pathogenic microbes do and how the immune system responds. The inflammation of the gut walls leads to increased permeability of the thin barrier.
        “This barrier, designed to allow only nutrients reduced to a usable size to cross into the blood, now will allow larger particles, even toxins and microorganisms, to cross into the blood.
        “Now the immune system outside of the digestive system is challenged. It sees invaders of all types and begins its response. So we have a hyperactive immune system.
      “And the blood brain barrier is made of the same types of cells as the gut lining. The toxins that inflamed the gut now inflame these cells and it becomes porous, allowing bacteria, viruses, toxins, whatever, to enter the brain.
        “For an adult, this may be seen as brain fog or anything from mild depression to schizophrenia. But for an infant or very young child who is trying to learn how the world works, the loss of neurons and connectivity of those neurons means they never grasp the basic skills of what life is and how it is to be lived.”
        She had become quite passionate as she spoke, and I had to agree that she may be correct, that perhaps she truly was at one source of the explosion in numbers of children on the autistic spectrum.
        For Rachel’s group, this revelation had led to examination of the causes of the increased permeability rather than an after-the-fact treatment protocol.
        “Even if there were a medicine that healed the gut lining, wouldn’t it have to be taken continually if nothing were done to treat the cause?”
        I pondered her question, looking for what I considered a gentle answer to her attack on medical research rather than the possibilities that she was discovering. Yes, rather than look forward to those possibilities, I bolstered my defenses. In other words, I took it as a subtle attack on my work since that is what I did.
        “Are you saying that the issue is lifestyle factors rather than genetics? Aren’t the two intertwined with genetics governing the body’s response to the environment?”
        Calmly, she replied, “Think about it, Evan. If it were primarily genetic, why would so many cases be appearing now? Genetic diseases require those bad genes. Why is the disease increasing so rapidly from the same gene pool?”
        “Well, diagnostics have gotten much better, and there are clearer guidelines for how to report and treat these issues.”
        She was quiet, looking at me quite intently. I did not want to try to diagnose her emotion at this point, but let’s just say it was very negative.
        Defensively, I added, “And people are living longer.” There was no change in her expression, so I gave a conciliatory, “Couldn’t these be the reasons for the increase?”
        She took a sip of tea and then another bite of sandwich before giving a measured response.
        “Do you think that because there is rarely any mention of autistic symptoms that we just missed the cases of the last few thousand years? There are a few diseases that are caused by genetics alone. You know the most common ones, such as cystic fibrosis, sickle cell anemia, and Huntington’s. These are pretty rare.
        “Diseases caused by a combination of genetics and the environment are increasingly common. Heart disease, cancer, and Alzheimer’s are examples. For these, something in the environment must trigger the gene, switch it on, for the disease to develop.
        “But you already know this,” she added
        She took her tea glass and had another sip, signaling it was my turn.
        “By the time I am involved, the switch, as you call it, is already turned on. My job is to turn it off and prevent it from coming on again.”
        “So why do you think we have such switches on our genes, Evan?” She leaned forward as she spoke, looking at me with unflinching eyes. “Did God make a mistake, or will you blame it on an evolutionary error?”
        Usually I would have called her eyes soft and warm, but now the more correct descriptor was piercing.

        And she had brought up our second area where we have different perspectives, “genetics versus the environment” being the first. I believe in a Creator God, but I also believe the facts of science. I have tended to leave the two areas in separate compartments and conduct my professional life from the scientific perspective.
        Rachel seemed to operate on the same principle as I did before the trauma of the loss of a son, but increasingly she had moved to the faith perspective as her default mode. As she put it, “Science is a tool, not the foundation.” If science shows something different, she acknowledges the scientific perspective but defers on committing wholly to it, preferring to see how the new discovery fits into the larger context revealed by the next discovery.
        Her belief was, and I quote, “Science is a part of the whole and not the whole, so you cannot believe wholly in it.”
        I said, “Genes are for the preservation of the species.” I realized that I had switched to my professorial voice and toned it down.       “You know that. It is to allow future generations to confront life more effectively and efficiently.”
“        And so we pass along defective genes?”
        I am not a great chess player but I could see how she was going to trap me in the next couple of questions. Knowing when to withdraw is a key element to success, and I truly believed in my point of view, believed that evidence would someday be there to support it.
        I ended the discussion with a partial concession. “There may be a lot to what you are saying, but we don’t have time to continue.
We are signed up for the premier of the documentary, ‘The Rise of Freedom in Atlantis.’ I know it is neither as important nor as stimulating as this conversation, but our absence will spark government attention that may cause further encroachment on our private lives. We are behind on our WAGEs scores (more on that later). It begins in a few minutes. Let’s clean up the dishes and get ready.”
        She did not respond but collected my plate and half full cup and took them with hers to the sink. Her unspoken feelings were clear in the hasty and efficient manner she performed her duties without looking at me.

        In retrospect I wish that I had forged ahead and she had undercut me with the compelling observations countering each of my charges: that these genetic diseases were occurring more frequently and at earlier ages, and that the lack of current diagnostics could not have missed the glaring symptoms and increased frequency of autism. I would have had no rebuttal and, perhaps, rather than withdraw from the battle I would have gone over to her side.
        We continued to be tolerant of the other’s perspective, but the initial deep conversations gave way to arguments, which gave way to offering superficial comments on our respective work to avoid argument. I confess that I caused our relationship to deteriorate to one more of convenience than commitment.
        In retrospect, I had much to learn about the connectedness of all things; people, in particular, but all things, in general.
        We are told that the two shall become one in marriage, but that is a continuing process that must be reaffirmed each day.
        The lack of wholeness in the world around us was increasingly apparent each day, and this was somewhat reflected in our relationship. Our culture seemed increasingly polarized between the Technician/Scientist group on one side and the holistic/experiential group in opposition. Rachel and I struggled with the division of our culture and the unity of our marriage.
                                                               Next chapter

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