“There is a community of blind men who have heard that an elephant had been brought into the country. Some of them wanted to find out more about the unknown animal. Each one touched another part of the elephant. Returned home, they tell their fellow citizens their opinions. Thus, the different conceptions come into contact with one another and it becomes evident that they are contradictory. In the end, the following internal moral is stated: “Every one of these persons spoke the truth in a way, since he described the qualities of the elephant so far as his knowledge of it reached; yet the whole party failed to comprehend the real form of the elephant”
–Translated from Book Four of Ihyâ Ulûm al-Dîn by Abu Hamid Muhammad Al-Ghazzali (“Al-Ghazzali”), entitled Kitâb al-Tawba (translated as, “Book of the Expiation”)
As is often the case when one tries to deal with an integrated, dynamic, complex organism experiencing multi-faceted problems, as if it were a simply a collection of individual facets to be understood and treated separately, so my convoluted journey with the medical profession is, and always has been, an almost perfect illustration of the classic parable of “The Blind Men and the Elephant”—in this case, I happen to be….the elephant. Since I am Muslim these past 26 years, and a minor scholar on the subject, I guess it’s only fitting that I quote Al-Ghazzali’s rendition of the Buddhist canon, a great parable, which has touched every human culture in some form for centuries. In fact, you will find that I have long appreciated its importance in understanding much about human thought and behavior. In 1994, my undergraduate honors thesis found its permanent home in the North Carolina Collection at the University of Chapel Hill, North Carolina. On the first page, at the very beginning, you will find this parable again, this time quoting a paraphrase by an American scholar. What is ironic is that the truth of it, that we’re all connected, and that we too often fail to comprehend the real problem because we only see one piece, is mostly a cliche for most people now. Yet, the most educated, and scholarly among the human race continue to operate this way, even today. They speak of the ideal of integration and understanding the connections between things, but they continue to operate with blinders on in practice. So the ancient Buddhist canon is not an antiquated notion that operated only in remote monasteries in Tibet, but rather, is a most profound mirror of life in the world that persists today.
With all the countless tests that I’ve had over the years, blind men continue to drive the bus, and when the results appear to be contradictory and confusing to the doctors, they look at me as if I am guilty of a crime, perhaps not telling them the truth, or worse, possibly just a malingerer. They seek to blame the patient when they fail to understand the problem. Or they insist upon acting as if the problem is only possibly a short list of the most obvious common causes, again, as a single-faceted problem. Treatment has been off the rails for years, as everything they have tried to do has gone badly wrong in one way or another, and not once did they have a clear understanding of why that happened. None of it had made sense to most of them; those doctors that insisted that it did, were usually the MOST AGREGIOUSLY wrong. They see scans, x-rays, visible symptoms that show them disease activity, but labs that more often fail to confirm, or give them contradictory information. Each expert takes the data that he is designated to take, to try to determine how to define my condition medically, each taking on the role of one of the blind men: each describing my qualities or condition, to the extent that their knowledge enables them to do so, and ultimately failing for the same reasons as they failed in the parable.
I’ve developed one inflammatory or autoimmune disease after another. The way they developed and revealed themselves in testing, time and again, has consistently defied medical understanding. When neurologists did nerve studies on my hands and arms this past summer, to try to understand the nature, extent, and cause of the severe neuropathies in my hands, they had lots of data that documented that something was definitely wrong with the nerves (I’ve had reduced sensation just in my fingertips alone for almost 4 years now). They could observe Raynauds symptoms in my hands, feet and entire legs, but were these nerve abnormalities from Raynauds? Raynauds doesn’t cause joint swelling, redness, inflammation. Was it rheumatoid arthritis? I’ve been sero-negative every time they have tested me, yet the joints have the telltale signs of swelling and early deformation for RA, and also erosion, though the erosions looked strange, too.
The neurologist asserted that the nerve abnormalities that were showing up in the study were only partially consistent with RA, or perhaps only carpel tunnel syndrome, but didn’t make sense overall. Then he concludes that some of the data from one of my two hands he feels comfortable with calling “carpel tunnel syndrome”, yet this contradicts other evidence. It doesn’t explain the other inflammation, and the other abnormalities that belie that diagnosis. So the senior neurologist makes the junior docs do the entire series of nerve studies 3 times, believing that the data couldn’t possibly be right (these tests, by the way, are extremely uncomfortable). And while they insisted that the data was inconsistent with what they could understand, the data coming out of each test was consistent with all the other tests. But because they couldn’t make sense of the data, the chief neurologist refused to even sign off on the report, and my rheumatologist, who also couldn’t make sense of it, hesitated to give it any credibility at all.
Corrective surgeries have, time and again, left me with inexplicable and downright bizarre surgical complications added to the mix, which were eventually deemed “irreparable.” There are virtually no drugs that I can safely take that are designed to help ease the suffering caused by most of them, as I have paradoxical and in some cases, life-threatening reactions to them. Narcotics, muscle relaxers, neuroleptics, anti-depressants, anticonvulsants, CNS depressants (including alcohol) have all been implicated, and, with the exception of alcohol, unfortunately, are what would be required to treat many of these complications. And though I don’t partake of cannabis, it is also on the list of “no-can-do,” which is fine because I never liked how it made me feel when I tried it a couple of times in my adolescence. And I now know that there are logical reasons why all these drugs are so different in my system—most of them are effectively poison to me. That’s right—poison. They are toxic in my body. They can easily kill me, and even if they don’t kill me, they kill parts of my brain, and damage the way my organs function. So now, my digestive system doesn’t work. Drugs did that. Drugs that were supposed to help me, were the cause of the damage.
I had grown so weary of hearing, “I don’t understand why you’re having this problem.” “This doesn’t make sense.” "There’s nothing else I can do for you.” “I would suggest that you get yourself a good therapist to help you learn to deal with stress.” I felt as if doctors, when unable to get their arms around the problem, had started to look at ME as the problem, or at least just wanted me to go away. I know for a fact that many along the way did decide that I was the problem, meaning they thought that my problem was all in my head, because they behaved toward me that way after a while. The problem, however, was not the data, and it was not my attitude. They just didn’t understand what the facts actually were, and what those facts revealed about the true nature of the problem. They failed because they kept acting only based on how things were supposed to be, or how things usually work, or how they were taught to understand things, so it blinded them to the truth that was right in front of them if they would only drop the blinders, set aside the biased filters, and look.
The simple fact of the matter is that something happened to my brain a long time ago, before I was even old enough to know about it—specifically a series of injuries—and they each activated a rewiring of my brain through a process loosely called, today, “neuroplasticity”, that resulted in my brain being increasingly different from other people’s brains. Some of those changes included developing an approach to how my brain interprets signals associated with traumas, nerve injuries, nerve insults, inflammation, tissue damage, and the result was that these kinds of things affect me in completely different ways from most people. My brain was developing while major protracted traumas were occurring and becoming exacerbated for months without resolution. My brain interpreted these experiences and something it understood as important to my survival in some strange way, and developed neuro-immune responses that are difficult to make sense of and straighten out, especially now that it has been happening, layer upon layer, for 50 years. I suspect that if my brain were to explain what it is doing, is that when I have a trauma—physical, psychological, whatever, physical things happening at that time get stuck in this endless loop of acute response, that goes round, and round and round, sometimes getting a little better, then worse again, sometimes causing damage to body parts from inflammation and comorbid effects on other body parts. And when the body feels distressed, many of them start looping their acute traumatic physical reactions together, as well. And I’ve experienced more traumas than 10-20 people are likely to experience in a lifetime.
I guess you could look at my brain as having a somewhat unique operating system (human brain ver. *.x instead of *.0 or *.1, with “x” representing, not “improved”, “better” or “worse”, but just “different”) with its own set of rules for interpreting and regulating bodily functions. They’re not all destructive, like the inflammatory stuff. And it’s not that what is happening to me defies logic; on the contrary, it’s all quite logical, if one understands the relevant facts—if you know enough about the new programming language. Their problem has been one of “seeing” what they are looking at, rather than what they believe they are supposed to see, not unlike the reasons that many people have difficulty drawing accurate likenesses of things. Their brain habitually sees only portions, and fills in the blanks with what they assume belongs there. The problem is that when that doesn’t work as expected, rather than challenge their assumptions, they refuse to accept as true anything that doesn’t fit those assumptions, perspectives, and their knowledge. Consequently, what doesn’t fit with what they know is either wrong or irrelevant.
This is not unique to the medical profession, but is a common dilemma when trying to tackle multi-faceted, multi-perspective challenges from a single or limited perspective. One of the advantages to my D’Ger brain is that it is much easier for me to understand these kinds of complex systems in operation than for other people, because my D’Ger brain thinks very differently from most people. Somewhat like Temple Grandin describes how she thinks as “thinking in pictures,” I, too, think in pictures, and I model systems in my mind like multi-dimensional models operating in my head. I can see where things don’t connect or work together properly in the model without having to build an actual physical model first. From what Temple describes, however, her visual thinking is more confined to literal objects in a physical world, whereas mine extend to abstract ideas, as well, though the abstract ideas have images associated with them, too, but can be difficult for me to translate into human language, and in a way that other people can grasp easily and quickly. I’ve had lots of experience with designing models like this, though, and applying this to my work in university honors thesis, for example, that earned me highest honors in the department. I used this ability again at IBM, to design new business models, inclusive of multi-party relationships, international trade, tax, and commerce laws & treaties, multi-cultural and national boundary issues, logistics, contracting between parties, and value proposition, and launched multiple offerings of great value.
I used this ability to tackle similar kinds of challenges through finding ways for large corporations, mired in silo-focused strategies, to address corporate culture-based quagmires that were dragging the company down, and find ways to work together better as a more cohesive whole, and stop undermining one another and ultimately the larger business. The fact that my former employer was, at one time, referred to as the “big blue elephant” was profoundly significant to me.
Back to this solitary elephant, and her D’Ger brain. For a long time, I have gone through periods of feeling bitter about the parade of doctors that I perceived were either unwilling or willfully unable to use their medical training and expertise to determine the actual facts and help me get well. I often judged most of them to be negligent, blind–or both. Why is it that I have had to discover the answers myself, over and over again, and show them? How was that even possible? I’m not a doctor; I don’t play one on TV. Yet, each time I have been the one doing the research, advocating desperately for myself while trying to find enough pieces of the puzzle to hand to them, so that they can then see what they were looking at. It has been such a struggle to both have to go it alone with searching for answers, recruiting the experts to participate in developing more and more perspective to inch our way to the truth. Those experts I sometimes had to drag kicking and screaming even to investigate at all, often scoffing at possibilities that I laid before them of pieces of the puzzle, and thinking me strange and even arrogant of me, the ignorant patient, to present absurdities to them and ask them to even consider my naive notions. And I know that at least some of them rejected it out of hand, not because it wasn’t plausible, but because investigating the possibility didn’t fit within their practice’s business model.
So I have for years referred to doctors as being the “blind men” in the classic fable of the blind men and the elephant. But now the pivotal piece, i.e., my altered brain, is now somewhat among the known facts. I say somewhat because, despite having documented these facts confirmed by medical experts, I continue to experience skepticism, refusal to even acknowledge the documentation, resistance, in a word. Egos and personal biases are incredibly powerful things, and when combined, a doctor can go from being an instrument of healing, to an instrument of unrelenting abuse. I suffer terribly when I find myself at the hands of such a doctor, or when such a doctor tries to pull the strings of the good ones. I am suffering right now because of such a doctor, though in his particular case, I am suspicious that a third component with him may be something also impairing his cognitive function, as observed by myself, my husband, and one of my former doctors. I am struggling right now to figure out what to do about that one, only because the destructive lens is turned on me and I am afraid of being harmed.
It can be quite insidious when it gets mucked up with people like that. But there are the good moments, too, and he hasn’t destroyed all of them. Watching my main doctors have the “aha!” moments and finally get on board could be better than sex! Until this week, I thought I was in the home stretch on that point, and just had to close with my primary care doctor with updates, documentation, and discussing next steps. Then I found out that the personally biased, ego-centric, possibly cognitively impaired (Alzheimer’s or just some sort of early dementia?) doctor put a hammer down on my favorite doctor of all time, and for now, at least, she seems uncomfortable about treating me, unsure about what is ok to do with me. It feels really awful to think that this could change trust and confidence between us, something that has been the reason I would drive an hour in either direction just to work only with her. She has always been my rock, and I trusted her because I believed that she trusted me.
I realize that a portion of what I believed about how she thought of me, however, was somewhat naive, in the sense that I wanted to believe that because I was experiencing certain things in our relationship, that it meant the other things could be assumed to be consistent with that, including my expectations that she be completely candid with me. I never remembered seeing or hearing anything from her that suggested that she was being anything but candid, and I kept nothing from her. But I did recently learn that she had at least some beliefs about me that she did not share with me, and I don’t know if it affected how she treated me as a patient, as well. If so, I’m not sure that when I was agreeing to treatment, medications, I was actually exercising “informed consent”. I don’t know if it would have changed my decision or not, because there were a lot of those decisions that I had to make, and the treatments harmed me, and impaired my mental function, and injured my brain, too, and I don’t know if there were reasons for the treatment that, had she told me, I might have said, NO, or asked to get some other assessments first. I just don’t know, because I wasn’t told the truth of her (incorrect) beliefs about my condition.
While they may never fully understand the full potential impact of how my reprogrammed brain will behave, at least they now know that there are reasons that are logical and understandable for why things happen, but understanding that logic requires stepping outside of the usual suspects of obvious reasons. Looking only for standard disease profiles may catch standard things that occasionally do happen, but even then, treating that standard disease has to be approached from a non-standard treatment perspective, as well, because standard treatments may also be precluded by my unique brain. In fact, my unique brain drives the bus and can completely be wrecked if approached wrong. Medications, for instance, can be a bit like filling the oil tank with gas, and the gas tank with kerosene! Therapies? Same thing. Corrective surgery? We now know that each severing of a nerve, or post-surgical infection becomes another trauma, and another potential loop effect, not to mention that drugs used to perform the surgery likely amplify this because of the toxic effects they have on my brain, putting it in a sick state to process the trauma.
I honestly don’t know how I am going to extricate myself from the mass of tangled up trauma loops, each of which are PHYSICAL, not something that I get to choose. This developed pre-verbally in my brain, and evolved D’Ger from there. I can do stress management, biofeedback, all that great psych stuff to get my attitude right, neutralize as much of the negative psychological interference as I can. But this looping thing? How do I undo brain development like this from birth????? I wish I could just use one of the cool mirror boxes designed recently to resolve phantom limb pain, because I’m pretty sure that it’s similar to what happens with phantom limb pain in many ways, except I don’t have a missing limb; I have an inflammatory response, acute trauma, post surgical responses, I have the saddle injury at 22 happening over and over again. I’ve got a million of them now, and I can’t trick my brain into thinking that they never happened, and because I can’t tolerate drugs that might ease some of that, I really literally have to think my way through this, without drugs.
Doctors are crammed with as much of what is known or assumed to be true about science about the human body, chemistry, structure, substance, and maladies as they can humanly absorb in their years of medical school, internships and residencies, while acquiring skill and further knowledge as they work with patients in either some sort of general medicine (i.e., family medicine), or in a focused specialization (rheumatology, gastroenterology, neurology, psychiatry, etc.), or else through medical/biological/biomechanical research. I’ve got no “big picture” doc, but I do have docs who see the significance in a big picture sense. But that doesn’t mean that they are omniscient, or expert in the particulars of the affected systems & “parts”, as those have their own specialists. But even negotiating and navigating between my “knowing” docs and the other needed specialists is treacherous, as I recently experienced with the “bad” doctor. He was more attached to, and invested in, being right about his biased view of what things mean, and being “right” about his original assumptions (which were wrong), but I could have experienced the same outcome if he hadn’t made a professional assessment previously, as he would likely have sought to rely on someone else’s and would have been just as invested in defending it as his own, against all dissenters. The fact that the referring doctor differed with his assumptions about me infuriated him, despite that she was the expert on the specialty subject, not him. It’s crazy, and I never saw it coming, either when I met with him in March for a consult, or when I learned that he dropped missives in my primary care doc’s box, threatening our working relationship. And for many doctors, when they encounter someone with such a complicated and horrific history of injury, sickness, abuse, missteps, they just don’t want to believe it, no matter how true it is. It’s probably a natural human reaction—not one I would have, of course—but many would say that it’s only human.
And it’s not like it’s a complete surprise to me that if I ever told anyone what really happened to me, presented as fact, that I would be disbelieved. I was told, even while being physically and sexually abused under the protection of the very institutions designed to protect me, that if I told, no one would believe me. They were right. I was told by my relatives who were abusing me and my siblings since we were very small, that no one would believe us if we spoke out. They were right. I was told that if I told the truth about our experiences ever in the future, that no one would believe me. They were almost right. That has silenced myself and all of my siblings for years. That has shut down investigations over and over again, and we even stopped talking about it to each other. I mean, what’s the point, right? And I, like my sisters, have tried to put it behind us and move on, writing it off as bad experiences in the past. And now we’re aging, and our bodies are delivering up the physical consequences of all the terrible things done to them from infancy. The truth is speaking physically, whether we are believed or not, and we are all suffering.
While I may understand *why* doctors are so uncomfortable and feel awkward about such things, that doesn’t, in my mind, get them off the hook. They should be ashamed of themselves for ignoring the fact that I am 1 of 6 children, and we are all damaged badly, and we are suffering, and they are ignoring things that is inexcusable. Discomfort? I’ll trade you mine or any of my siblings’ discomfort for a day, and you’ll figure out a way to get over your “doctorly skepticism” longing for the obvious and easy stuff. I’m sorry that my “medical complexity” makes you uncomfortable; it’s not like I chose this or got a vote. The one responsible for most of that gets to live out the remainder of her days in bliss, much like her abusive father before her. I’m actually glad about her in that sense, only because she was broken long before we ever existed, and she is a product of her own brokenness. There’s not even a “who” inside that shell of a person, just an actor, focused on doing what is necessary to get what she wants.
It’s scary out there right now, and I just want to survive this. I didn’t choose to be this way, and I hope that doctors will stop blaming me or punishing me because I don’t fit into their comfortable buckets of the obvious stuff. Or at least, I would really like to get doctors closer to home who have this expertise, and will work with my local doctors. Oh yes, and insurance runs out end of June. Lovely. I already can’t afford the co-pays and pharmacology; what comes next will be interesting….meanwhile I’ve got my favorite doctor in the whole world uncomfortable, pressed for time, and annoyed, not telling me everything, and now bothered because I am medically “complex”. Which just made medically “complex” a four-letter word for me. Damn. Next week will be better; it’s got to be.
Pretty Real Behind the Veil 