Within 24 hours of starting treatment with the antibiotic Doxycycline, I felt an abatement of my most acute symptoms: searing left-side migraine and jaw clenching, burning pain in my skin, stabbing pains in my joints, blurred vision accompanied by floaters and spots, and the cognition impairment that is commonly called "brain fog." By the time I saw my primary care doctor on Tuesday, August 5th, I was calm, clear-eyed and alert, though still feeling the insistent presence of the more diffuse symptoms.
My doctor greeted me and asked me to tell him what was going on with me. As I began to explain what had transpired over the past 2 months of my life, it became apparent to us both that he was operating under a very different impression of what had taken me to the hospital three days earlier. He said, "The ER physician diagnosed you with acute fatigue, but you are telling me something very different from that."
"Yes, I know. He obviously wasn't listening very carefully," I replied. "He wrote on his report that there was 'no headache present at this time,' but searing migraine was one of my chief complaints! Also, he reported that the rash I developed around the insect bite 'lasted 10 days' but I told him that it took about three weeks to heal."
I continued to explain to my doctor all of the gross and subtle symptoms that lead me to conclude that I was in the throes of a Lyme infection, and he appeared to listen quite intently, occasionally asking me to clarify or expound upon certain details. After I finished telling him my full story, including how quickly I had responded to the antibiotics, he shared with me the results of my blood tests for Lyme, as well as the results of my Complete Blood Count, Thyroid Stimulating Hormone and C-Reactive Protein tests.
I had spent the better part of the past three days, while not sleeping or lying curled up in a painful ball, extensively researching Lyme disease online, and talking to people who had either had it or knew others who did. I was well aware of the inadequacies of the 2-tiered testing system that is used to screen for the presence of antibodies to the Lyme-causing spirochetes called Borrelia burgdorferi, so I was not surprised to learn that my ELISA test (the first tier) had come back negative. I said to my doctor, "I think we both know that the ELISA is not a reliable way of diagnosing Lyme disease. Even the CDC states on their website that Lyme is diagnosed clinically, not by blood test."
My doctor quickly responded, shaking his head, "The ELISA is a highly sensitive test. It would seem to me that if you had been infected two months ago, your body would've mounted an all-out assault against the bacteria. We see no sign of that in your blood work."
"That's not true," I countered. "My white blood cell count is low, you just said so yourself, with low absolute neutrophils and high lymphocytes. This suggests a bacterial infection."
"Yes," he stated, "but this also happens in viral infections. My sense is that you have a virus. Still, we'll keep you on the antibiotics, just in case."
Quickly frustrated, I said, "If I had a virus, I would not have responded the way that I have to the antibiotics. It seems very clear to me that this is Lyme. I don't know why it's not clear to you. In fact, I may even have other, tick-borne co-infections, which we both know is quite common." I sighed. "This is crazy."
He maintained his composure, turning the conversation to how we would proceed, clearly interested in moving on to his next patient. He suggested that I take a 21-day round of the Doxycycline, and then return two weeks after that to have more blood drawn so comparative testing could be completed. I countered with my well-researched opinion that I should take the Doxycyline for at least 28 days, and have my blood drawn on the Monday immediately after completing the treatment. We agreed on that, I requested printouts of all of the records generated by the ER visit and our follow-up, and then we shook hands and parted. At reception, I scheduled my follow-up appointments with an exceptionally helpful and warm receptionist and picked up my printouts.
Back home at last, I lay down, feeling frustrated and very scared that the one person my insurance company will pay to treat me has very limited ability to help me. This is all-too-common with Lyme disease. Though it has been running rampant in the US for more than 30 years, and is epidemic in the Northeast, where I live, doctors are barely equipped to diagnose and treat this complicated and life-altering disease.
It doesn't take long for a person grappling with Lyme borreliosis, or what is commonly called Lyme disease, to discover that they are caught in the crossfire of a war. There are powerfully divergent interests at work in the area of Lyme disease: the government agency that sets the standards for testing and treatment, coupled with the IDS (Infectious Disease Society), and the "Lyme Literate" caregivers in the communities where astonishing numbers of people are experiencing the debilitating effects of the illness. Caught in between are people of every walk of life who, most often, fall mysteriously ill, get tested for Lyme, are told by their disempowered doctors that their tests are negative and that what they are feeling is "all in their heads,"and then go months or years before they learn that what they feared all along was true. But, by then, the stealthy and complex bacteria have adapted to their host, burrowing deep into aqueous humor, collagen, and soft tissue, and wrought irrevocable damage.
The Centers for Disease Control, the CDC, promulgates very specific diagnostic and treatment protocols for Lyme borreliosis, protocols which restrict the ability of the conventional medical community's ability to adequately diagnose and treat it. However, doctors that do not act in strict accordance with these protocols, citing them as being too restrictive and not allowing for the variables that must be considered when diagnosing and treating so adaptable and individuated a disease, are called out as rogues or quacks, and their standing as medical professionals is threatened or stripped from them. This causes a great many in the medical field to fall in line, but it also forces others out to the fringe, creating a rift within which the Lyme patient finds it difficult to know who and what to trust or believe in.
As I previously stated, blood testing for Lyme borreliosis is done in a 2-tiered manner. The first tier is the ELISA (Enzyme Linked Immuno-Sorbent Assay) method, a technique used to determine if a certain substance is present within a sample. In this case, lab technicians are looking at a blood sample for a specific level of antibodies to Borrelia burgdorferi. Variables to consider are the person reading the test's experience with this particular spirochete bacteria, and the stage of infection at the time of testing (too early and there will not be enough antibodies in the sample, too late and the bacteria will have "cloaked" themselves and hidden from body's immune system).
If antibodies to Borrelia burdorferi are found in a blood sample to be of sufficient quantity to warrant a positive ELISA, the second tier of testing is performed, as a means of confirming the results of the first. This test is called the Western Blot, which, in very simple terms, looks for two classes of antibodies to the bacteria and registers them on bands that look much like barcodes you see in a grocery store. The CDC requires that at least five very specific bands register positive for the presence of the antibody for the Western Blot to be classified, overall, as positive.
If the blood sample contains less than the CDC-established range, the test result is negative and no further testing is done, even if a patient demonstrates clinically that they likely have Lyme borreliosis (i.e. via a comparison of current symptoms to one's medical history, coupled with the possibility or likelihood that they were exposed to a vector or visited an endemic area). This means that doctors all over the nation are unable to report obvious cases of Lyme borreliosis to the CDC, and suggests that the CDC's numbers are woefully skewed. While the CDC maintains that there are approximately 20,000 new cases of Lyme borreliosis in the US every year, the work of the medical community, coupled with the science concerning the variability of how the disease spreads, suggests, by extrapolation, that the number is approximately 10 times higher. I don't know why the CDC creates these impediments to proper diagnostics and treatment, or allows for their numbers to be so skewed, but I can't help but think that something is seriously wrong with the situation.
Over the past three weeks, I have had opportunity to talk with countless dozens of people about Lyme disease, and have heard the same story of misdiagnosis and lackluster treatment repeated again and again, from those who have had the disease or have it currently, those whose friends or family members have had it or have it currently, and those who work in the medical community and see the reality of what is happening in my community. We have reason to be deeply concerned, and I'm certain that the government, the CDC, doesn't want us to panic. Yet, it's very frightening. Borrelia burgdorferi is all around us, harbored most commonly by ticks, but also, less commonly, by biting flies and mosquitoes. It has been documented to pass from infected mother to fetus, and has been detected in breast milk, semen, tears, and urine. The "telltale" bullseye rash is experienced by less than half of those who are infected with the bacteria, and many people never experience a rash at all or even discover an insect bite. I'm not making this stuff up; all of this data is available to the studious. If the general public, and our medical caregivers, aren't better informed and empowered as to how to prevent, recognize, and treat this disease, the numbers of the infected will only continue to exponentiate.
So, how do we respond to this genuine, escalating threat to our collective health with the kind of force that will bring about change in how the CDC controls the testing and treatment protocols that are leading to an unchecked epidemic? We don't want to be rushing to the ER every time we find a mosquito bite, but we also don't want to lose our health, and maybe our lives, to something we possess the scientific capability to fight.
I don't have the answers right now, only questions I'll have to answer as I continue on this journey. But, I do know this: I can't in good conscience fail to do my best to underscore, for as many as will listen, the seriousness of Lyme borreliosis, both as the fastest-growing vector-borne disease in the world and, consequently, a foe most worthy of our attention.
Friday, August 22, 2014
Wednesday, August 20, 2014
The Beginning of the Journey
I went to the emergency room of my local hospital early Saturday morning, the 2nd of August, 2014. I hadn't slept more than an hour each night for three nights, and on the fourth night of awakening at 1 AM, my heart racing and thudding, panic flooding my body, I sat up in bed and remembered an insect bite several weeks earlier that had developed a red rash around it. Into the dark of my bedroom, I uttered aloud, "Lyme disease."
After the panic passed, I crawled out of bed, my head, neck, and shoulder on the left side searing with migraine pain, left jaw clenched tight, all of my joints stiff and painful to move, my feet ice cold, my balance tipsy, eyes and nose raw and itching as though there was something crawling around inside them, my right eye twitching furiously. I had been feeling steadily worse over the past few weeks, but by Friday all of the seemingly disparate symptoms coalesced into one clear image: I had been bitten by a tick, developed a rash around the bite, and now had Lyme disease. An hour or so of online research on several websites, including Mayo Clinic, Johns Hopkins, the Centers for Disease Control, and Tick-borne Infection Alliance affirmed my suspicion. There, I realized that all I had been taught about tick bites and Lyme disease was unreliable. The "bullseye" rash that we are taught to look for is found in less than half the cases of Lyme, and most people never even see a tick let alone remove one. Most people just never know they have been bitten. They become mysteriously ill and then the hell begins. As relieved as I felt to know that there was something very real and clear happening to my body, I was shaken to my bones by the stories I read of people being misdiagnosed or undiagnosed, whose lives were inexorably altered by the stealthy bacterium Borrelia burgdorfi.
I sat up all night, terrified, my mind thinking thoughts so foreign and frightful I dare not share them, meeting that terror with slow, steady breathing and a reminder that I wasn't crazy just terribly ill. At 4 AM, when I could no longer stand being alone in the terror, I drove to the home of my dear friend and intimate companion, who tucked me under his wing and held me close until the sun came up. He listened as I explained what had been going on over the last few days: how I had suddenly developed what felt like terrible allergies, how my head had felt "floaty," like it wasn't even attached to my body, how I had been having extreme memory difficulties, how my vision had become increasingly blurry and disturbed by floaters and spots, how I felt so weary I could hardly put one steady foot in front of the other, how I had sat up night after night, my heart racing and thudding and skipping, my mind distorted and anxious, my body feeling invaded by an alien force, how the migraine and frozen neck and shoulder had descended upon me on Friday afternoon, how I simply was not myself, and just how very scared I was feeling. He settled my head against his warm, sturdy chest and soothed me into rest. An hour or so later, I drove myself to the hospital.
When I arrived at the ER, I was checked in and given a wristband. I told the attendant that I thought I had Lyme disease. I was then taken to an intake office, where a nurse asked me some questions, took my temperature (96.7), and measured my blood pressure. "Why don't you tell me what's been going on? " she asked. I briefly explained to her my symptoms. "Did you remove a tick from your body?" No. "Have you experienced vomiting or diarrhea?" No. I told her that I remembered getting an insect bite on the back of my neck that had developed a rash around it, and that over the following weeks I felt as though I had a summer cold or the flu, and that things had gotten steadily worse over the weeks. "Why didn't you see your doctor?" she asked. "Because the rash didn't have a bullsye around it and that's what we're all told to look for!" I exclaimed. "Because everything was happening in bits and pieces and it was hard to realize that it was all related until my body simply freaked out!" I cried. I felt very uncomfortable with her tone, as though she didn't believe the seriousness of what I was experiencing. She had not just spent the night thinking the kind of thoughts that I had been thinking, and, honestly, if I has shared them with her she would've called the orderlies from the psych ward. I calmed myself and said, "I thought I had a cold. I thought that the memory issues were menopause or middle age. I thought that the vision issues was the re-clouding of my lenses. I had cataracts removed last year and my doctor said that would happen over the course of a few months, given the difficulty he had in removing the debris on my lenses. I just didn't know what to look for."
Finally, the nurse transferred me to an examination room, where I was given a gown and told to relax. I quickly changed into the gown and sat down on the edge of the bed, my heart rushing. It was very cold and I needed some blankets. My body started to shake. I called for a nurse, but no one responded. I called again, and finally a male nurse came in. He stuck his head in through the door. "What do you need?" he asked brusquely. "It's really cold in here," I explained. "I'd appreciate a blanket or two." He simply turned and walked out, with no reply. About five minutes later, he returned with a thin, cotton blanket, which he placed in a heap on my lap. "I'll be back in a little while to get some information from you."
About 40 minutes later, the nurse returned. He was slender, about 30, with a close beard, big hands, and a short manner. He asked me to explain to him what had brought me in, so I launched into the same story I had just shared with the other nurse. His eyes never met mine, he glanced at the door several times while I was talking, and he made no attempt to demonstrate to me that he cared one whit about me, other than the very basic fact that he was there at all. His entire manner suggested that I was wasting his precious time. I felt angry, but I was so weary and in such pain that I simply sighed. "I'm going to start you on a IV, in case the doctor needs to give you anything, and take some blood. We're also going to do an EKG, to check out your heart. I'll be right back." He snapped the curtain and was gone. Fifteen or so minutes later, a tech wheeled in an EKG unit, to which she hooked me up. She ran a remarkably quick scan, peeled off a short sheet of paper, and was gone. Soon, the nurse returned. He carefully inserted an IV in my left arm, from which he drew several tubes of blood. "The doctor should be with you soon," he explained, as he departed.
For two hours, I sat in the darkened solitude of the examination room, listening to the sounds of other patients in nearby rooms: an old man moaning and gasping, a baby screaming and shrieking, a woman's persistent, hacking cough, the voices of the doctors and nurses as they passed by my door, exchanging jokes, or performed exams on other patients. At long last, a young doctor with attentive eyes entered the room, his hand outstretched. He introduced himself and asked me to explain, once again, what had brought me to the ER.
I started from the beginning: I can't remember exactly when, but a couple of months ago I was bit by an insect; the bite developed a circular, red rash around it, which was warm to the touch and took about 3 weeks to fully heal; there was no bullseye; over the weeks that followed, I felt, off and on, as though I was getting a cold, with runny nose, sneezing, scratchy throat, body aches, and fatigue; about a month after the bite, my right shoulder became excruciatingly painful, felt "frozen" and immobile with pain, and the right side of my neck, where I had been injured in a physical assault, was in terrible pain, all of which, with professional massage, resolved; as the weeks passed, I noticed a number of strange occurrences, such as tingling in my hands, painful skin, joint stiffness and pain, unusually cold feet, headaches, lightheadedness that became a constant "floaty" feeling, loss of appetite accompanied by shaking and nausea when hungry, sensitivity to light and sound, inability to recall common words, a frequent feeling of disorientation, slurring my words and difficulty manipulating my tongue to form words, frequent choking on saliva, food, or fluids, anxiety (which is extremely unusual for me), insomnia (also extremely unusual), clumsiness, sensitivity to temperatures in my hands and feet, heartbeat abnormalities, such as racing, skipping, or thudding, constant and intense fatigue, lack of endurance, and sudden "allergies" including the most extreme itch in my eyes and nose that I had ever experienced. I explained that on the fourth night of insomnia, coupled by migraine, jaw clenching, and all-over body pain, I sat up and remembered the insect bite and the rash and suddenly thought, "Lyme disease." I explained to him that while I felt lucid and was able to communicate with him in that moment, at another moment he could've found me curled up in a ball in my bed, shuddering and in agony, my head on fire, my mind thinking very scary thoughts. "What kind of thoughts?" he asked. Cautiously, I replied, "Let's just say...thoughts that people don't want to think, thoughts that I have never before had in my life, thoughts that have no basis in the reality of my circumstances." He nodded, asked me a couple of questions, looked into my eyes, ears, nose, and throat, checked my reflexes, and said, "We're going to take some more blood and test you for Lyme." Hallelujah, I thought, I have found help.
About two hours later, I left the hospital, a dose of Doxycycline in my empty stomach, the headache intensifying. The doctor's written diagnosis: Acute Fatigue. I went home and ate an avocado, then went to the pharmacy around the corner from my house to pick up my prescriptions. That day was pure hell. I lay in bed with my body engulfed in a cold fire of pain. When I wasn't sleeping or lying in bed in restless pain, I researched Lyme disease online, realizing that I had been very suddenly tipped into a rabbit hole. Where I will land remains beyond my knowledge.
After the panic passed, I crawled out of bed, my head, neck, and shoulder on the left side searing with migraine pain, left jaw clenched tight, all of my joints stiff and painful to move, my feet ice cold, my balance tipsy, eyes and nose raw and itching as though there was something crawling around inside them, my right eye twitching furiously. I had been feeling steadily worse over the past few weeks, but by Friday all of the seemingly disparate symptoms coalesced into one clear image: I had been bitten by a tick, developed a rash around the bite, and now had Lyme disease. An hour or so of online research on several websites, including Mayo Clinic, Johns Hopkins, the Centers for Disease Control, and Tick-borne Infection Alliance affirmed my suspicion. There, I realized that all I had been taught about tick bites and Lyme disease was unreliable. The "bullseye" rash that we are taught to look for is found in less than half the cases of Lyme, and most people never even see a tick let alone remove one. Most people just never know they have been bitten. They become mysteriously ill and then the hell begins. As relieved as I felt to know that there was something very real and clear happening to my body, I was shaken to my bones by the stories I read of people being misdiagnosed or undiagnosed, whose lives were inexorably altered by the stealthy bacterium Borrelia burgdorfi.
I sat up all night, terrified, my mind thinking thoughts so foreign and frightful I dare not share them, meeting that terror with slow, steady breathing and a reminder that I wasn't crazy just terribly ill. At 4 AM, when I could no longer stand being alone in the terror, I drove to the home of my dear friend and intimate companion, who tucked me under his wing and held me close until the sun came up. He listened as I explained what had been going on over the last few days: how I had suddenly developed what felt like terrible allergies, how my head had felt "floaty," like it wasn't even attached to my body, how I had been having extreme memory difficulties, how my vision had become increasingly blurry and disturbed by floaters and spots, how I felt so weary I could hardly put one steady foot in front of the other, how I had sat up night after night, my heart racing and thudding and skipping, my mind distorted and anxious, my body feeling invaded by an alien force, how the migraine and frozen neck and shoulder had descended upon me on Friday afternoon, how I simply was not myself, and just how very scared I was feeling. He settled my head against his warm, sturdy chest and soothed me into rest. An hour or so later, I drove myself to the hospital.
When I arrived at the ER, I was checked in and given a wristband. I told the attendant that I thought I had Lyme disease. I was then taken to an intake office, where a nurse asked me some questions, took my temperature (96.7), and measured my blood pressure. "Why don't you tell me what's been going on? " she asked. I briefly explained to her my symptoms. "Did you remove a tick from your body?" No. "Have you experienced vomiting or diarrhea?" No. I told her that I remembered getting an insect bite on the back of my neck that had developed a rash around it, and that over the following weeks I felt as though I had a summer cold or the flu, and that things had gotten steadily worse over the weeks. "Why didn't you see your doctor?" she asked. "Because the rash didn't have a bullsye around it and that's what we're all told to look for!" I exclaimed. "Because everything was happening in bits and pieces and it was hard to realize that it was all related until my body simply freaked out!" I cried. I felt very uncomfortable with her tone, as though she didn't believe the seriousness of what I was experiencing. She had not just spent the night thinking the kind of thoughts that I had been thinking, and, honestly, if I has shared them with her she would've called the orderlies from the psych ward. I calmed myself and said, "I thought I had a cold. I thought that the memory issues were menopause or middle age. I thought that the vision issues was the re-clouding of my lenses. I had cataracts removed last year and my doctor said that would happen over the course of a few months, given the difficulty he had in removing the debris on my lenses. I just didn't know what to look for."
Finally, the nurse transferred me to an examination room, where I was given a gown and told to relax. I quickly changed into the gown and sat down on the edge of the bed, my heart rushing. It was very cold and I needed some blankets. My body started to shake. I called for a nurse, but no one responded. I called again, and finally a male nurse came in. He stuck his head in through the door. "What do you need?" he asked brusquely. "It's really cold in here," I explained. "I'd appreciate a blanket or two." He simply turned and walked out, with no reply. About five minutes later, he returned with a thin, cotton blanket, which he placed in a heap on my lap. "I'll be back in a little while to get some information from you."
About 40 minutes later, the nurse returned. He was slender, about 30, with a close beard, big hands, and a short manner. He asked me to explain to him what had brought me in, so I launched into the same story I had just shared with the other nurse. His eyes never met mine, he glanced at the door several times while I was talking, and he made no attempt to demonstrate to me that he cared one whit about me, other than the very basic fact that he was there at all. His entire manner suggested that I was wasting his precious time. I felt angry, but I was so weary and in such pain that I simply sighed. "I'm going to start you on a IV, in case the doctor needs to give you anything, and take some blood. We're also going to do an EKG, to check out your heart. I'll be right back." He snapped the curtain and was gone. Fifteen or so minutes later, a tech wheeled in an EKG unit, to which she hooked me up. She ran a remarkably quick scan, peeled off a short sheet of paper, and was gone. Soon, the nurse returned. He carefully inserted an IV in my left arm, from which he drew several tubes of blood. "The doctor should be with you soon," he explained, as he departed.
For two hours, I sat in the darkened solitude of the examination room, listening to the sounds of other patients in nearby rooms: an old man moaning and gasping, a baby screaming and shrieking, a woman's persistent, hacking cough, the voices of the doctors and nurses as they passed by my door, exchanging jokes, or performed exams on other patients. At long last, a young doctor with attentive eyes entered the room, his hand outstretched. He introduced himself and asked me to explain, once again, what had brought me to the ER.
I started from the beginning: I can't remember exactly when, but a couple of months ago I was bit by an insect; the bite developed a circular, red rash around it, which was warm to the touch and took about 3 weeks to fully heal; there was no bullseye; over the weeks that followed, I felt, off and on, as though I was getting a cold, with runny nose, sneezing, scratchy throat, body aches, and fatigue; about a month after the bite, my right shoulder became excruciatingly painful, felt "frozen" and immobile with pain, and the right side of my neck, where I had been injured in a physical assault, was in terrible pain, all of which, with professional massage, resolved; as the weeks passed, I noticed a number of strange occurrences, such as tingling in my hands, painful skin, joint stiffness and pain, unusually cold feet, headaches, lightheadedness that became a constant "floaty" feeling, loss of appetite accompanied by shaking and nausea when hungry, sensitivity to light and sound, inability to recall common words, a frequent feeling of disorientation, slurring my words and difficulty manipulating my tongue to form words, frequent choking on saliva, food, or fluids, anxiety (which is extremely unusual for me), insomnia (also extremely unusual), clumsiness, sensitivity to temperatures in my hands and feet, heartbeat abnormalities, such as racing, skipping, or thudding, constant and intense fatigue, lack of endurance, and sudden "allergies" including the most extreme itch in my eyes and nose that I had ever experienced. I explained that on the fourth night of insomnia, coupled by migraine, jaw clenching, and all-over body pain, I sat up and remembered the insect bite and the rash and suddenly thought, "Lyme disease." I explained to him that while I felt lucid and was able to communicate with him in that moment, at another moment he could've found me curled up in a ball in my bed, shuddering and in agony, my head on fire, my mind thinking very scary thoughts. "What kind of thoughts?" he asked. Cautiously, I replied, "Let's just say...thoughts that people don't want to think, thoughts that I have never before had in my life, thoughts that have no basis in the reality of my circumstances." He nodded, asked me a couple of questions, looked into my eyes, ears, nose, and throat, checked my reflexes, and said, "We're going to take some more blood and test you for Lyme." Hallelujah, I thought, I have found help.
About two hours later, I left the hospital, a dose of Doxycycline in my empty stomach, the headache intensifying. The doctor's written diagnosis: Acute Fatigue. I went home and ate an avocado, then went to the pharmacy around the corner from my house to pick up my prescriptions. That day was pure hell. I lay in bed with my body engulfed in a cold fire of pain. When I wasn't sleeping or lying in bed in restless pain, I researched Lyme disease online, realizing that I had been very suddenly tipped into a rabbit hole. Where I will land remains beyond my knowledge.
Saturday, August 16, 2014
How to Be the Change
"Be the change you want to see in the world"
Such oft-quoted words, and how I wonder what they mean to those who quote them.
How do I interpret this statement?
Well, I've been working in food service for 36 years, in restaurants and bars, cafes and natural food stores, in large, hierarchical kitchens, where everyone has a specific station and function, and in small, Mom and Pop spaces where everyone is trained to do it all, multitasking like the goddess Sarasvati. Throughout my long career, as hourly-wage earner, salaried manager, or barely-squeaking-by owner, I have possessed and promulgated the same attitude about tasks: if you view all work as your own, everything gets done, but if you eschew less enjoyable tasks, engaging only in the tasks you prefer, there are some key tasks that will never get completed. These are usually related to cleaning, by the way.
So, there you are, working in the kitchen, avoiding crawling behind the dishwasher to eradicate the food and grime that falls back there and pools into a slimy insect breeding ground because you, like Bartleby the Scrivener, "would prefer not to." Often, though, you stand around complaining about your lazy co-workers, and the stench, and the fruit flies, and the general lack of cleanliness you find so offensive. Now you've become part of the very problem about which you find yourself complaining. Pretty clear, right?
I see this as an important idea, which carries out into life beyond the kitchen and the time clock and has an effect on the world at large. When we complain about the injustices, the inequities, the disturbing, worrisome, mounting array of problems society is facing, but we fail to take action to address them, we have become part of those very problems. We've got to BE the very specific, direct change that we want to see in our lives, in the lives of others, and in the world. If each and everyone of us gets behind the dishwasher, right at the moment that our senses find it offensive, we remove one point of suffering and difficulty from the world, and make a positive contribution to our own (and, by extension, others') well-being.
In life, we get now. We get THIS moment to do and be all that we believe in and value. Don't point fingers, or wait for others to grant permission, or fall into apathetic hopelessness when you are confronted by the tasks so many of us view as unpleasant but we all know need to get done. BE that change that you want to see in the world. And do it right now.
Here I go...
Such oft-quoted words, and how I wonder what they mean to those who quote them.
How do I interpret this statement?
Well, I've been working in food service for 36 years, in restaurants and bars, cafes and natural food stores, in large, hierarchical kitchens, where everyone has a specific station and function, and in small, Mom and Pop spaces where everyone is trained to do it all, multitasking like the goddess Sarasvati. Throughout my long career, as hourly-wage earner, salaried manager, or barely-squeaking-by owner, I have possessed and promulgated the same attitude about tasks: if you view all work as your own, everything gets done, but if you eschew less enjoyable tasks, engaging only in the tasks you prefer, there are some key tasks that will never get completed. These are usually related to cleaning, by the way.
So, there you are, working in the kitchen, avoiding crawling behind the dishwasher to eradicate the food and grime that falls back there and pools into a slimy insect breeding ground because you, like Bartleby the Scrivener, "would prefer not to." Often, though, you stand around complaining about your lazy co-workers, and the stench, and the fruit flies, and the general lack of cleanliness you find so offensive. Now you've become part of the very problem about which you find yourself complaining. Pretty clear, right?
I see this as an important idea, which carries out into life beyond the kitchen and the time clock and has an effect on the world at large. When we complain about the injustices, the inequities, the disturbing, worrisome, mounting array of problems society is facing, but we fail to take action to address them, we have become part of those very problems. We've got to BE the very specific, direct change that we want to see in our lives, in the lives of others, and in the world. If each and everyone of us gets behind the dishwasher, right at the moment that our senses find it offensive, we remove one point of suffering and difficulty from the world, and make a positive contribution to our own (and, by extension, others') well-being.
In life, we get now. We get THIS moment to do and be all that we believe in and value. Don't point fingers, or wait for others to grant permission, or fall into apathetic hopelessness when you are confronted by the tasks so many of us view as unpleasant but we all know need to get done. BE that change that you want to see in the world. And do it right now.
Here I go...
Tuesday, August 12, 2014
Feeling For Another
I have seen the terms compassion and empathy used interchangeably, and while they are interrelated, I believe that they are two very different states of being.
Compassion, literally, means to suffer with, to suffer simply by witnessing suffering. One need not understand or even imagine how another feels to experience compassion. The mere act of perceiving the suffering of any other being triggers in the witness emotional, and sometimes physical, suffering. For instance, crying when we see images of animals being slaughtered, feeling a deep wound when we realize that a person we love is in so much pain they want to take their own life, or experiencing profound anger at the sight of any being experiencing physical abuse. Compassion means that we don't have to know or even wonder what any of these circumstances feel like to suffer when confronted by them, we don't have to identify with another's situation to suffer when they suffer. Compassion, it seems, is an objective state.
Empathy, on the other hand, is defined as the act of imagining or relating to another's situation, or being able to "walk in their shoes;" feeling deeply for them, and sharing their feeling. Like when your back goes out and you suddenly feel deeply for your spouse- who has complained of back pain for years- and truly understanding his or her pain with your own senses. You may have felt compassion for your spouse, hurting because someone you loved was hurting, but you couldn't really feel what he or she was feeling until you were thrust into the same situation. This makes empathy a subjective state.
I have read that empathy is "a higher plane of emotive behavior," but I have also read that "empathy precedes compassion," with each statement seeming to value one emotive state over the other. I don't believe that one is more important than the other. I believe that it is necessary to identify and understand the differences between empathy and compassion, so that we can inhabit each with greater awareness, consciousness, and intention. Most importantly, I believe in the power of mindfulness. Our words and thoughts create our reality and affect the world around us, sometimes sending out ripples so wide we can no longer perceive them. Pondering the meaning of a word, and the common use of a word, and then using it mindfully, can bring greater potency to the relationships words help you to forge in life.
So, cultivate compassion, pause to notice the people and other beings living their lives all around you, and you will notice their suffering. Most likely, their suffering will touch you, and you will suffer with them. In suffering with another, we feel the roots of our humanity, and while they are deep, we often need reminders. We can be so terribly desensitized by the onslaught of imagery to which we are exposed on a daily basis, as we scroll screen after screen, ingesting more information than we know what to do with. Sometimes we fail to feel compassion for others because we no longer see them as real; they're just images on a screen. This age of information overload gives us greater access to information, but also makes it harder to know, and to trust, what it is we are seeing. So, maybe we can start in our own homes, on our own streets, in our own cities and towns. Look around you, see with honest eyes, and let yourself feel deeply the suffering of others. It won't swallow you whole, and it might even awaken you to parts of yourself you have forgotten. Reach out to others with your compassion- with your mind, or your heart, or your hands- and, when you can, do your best to mitigate the suffering you perceive, in yourself and in others.
And, engage empathy when it rises, let yourself feel deeply when you find yourself in someone else's situation and realize how much they have been hurting. Sometimes you will feel guilty for not having understood sooner, but know that there is much we cannot fully comprehend until circumstances are thrust upon us. Acknowledge that guilt, and then set it aside, let it go or you are contributing to your own suffering, which spreads like a virus into the world. Reach out to that person and let them know that you understand their pain. You don't have to lay yourself bare, or confess your most intimate details, to do this, I promise. The mere act of offering genuine empathy to a suffering being is enough to dramatically diminish their pain. Just saying, "I feel you, I care, I understand," just offering a warm embrace of deep, empathetic understanding, with no words shared, one where your hearts are beating together and you feel that energy moving between you, can keep another person alive to see another day. I know that you know this feeling, my friend, and it is your humanity.
There is pain and suffering in life and it's happening all around us, in every being that possesses a spark of life. How do we meet all of this pain? Compassion. Empathy. Generosity. Gratitude. The service of Love. The willingness to feel for another. There is a humbling river of joy contained within these states of being. Go ahead, stick your toe in...the water feels fine!
Compassion, literally, means to suffer with, to suffer simply by witnessing suffering. One need not understand or even imagine how another feels to experience compassion. The mere act of perceiving the suffering of any other being triggers in the witness emotional, and sometimes physical, suffering. For instance, crying when we see images of animals being slaughtered, feeling a deep wound when we realize that a person we love is in so much pain they want to take their own life, or experiencing profound anger at the sight of any being experiencing physical abuse. Compassion means that we don't have to know or even wonder what any of these circumstances feel like to suffer when confronted by them, we don't have to identify with another's situation to suffer when they suffer. Compassion, it seems, is an objective state.
Empathy, on the other hand, is defined as the act of imagining or relating to another's situation, or being able to "walk in their shoes;" feeling deeply for them, and sharing their feeling. Like when your back goes out and you suddenly feel deeply for your spouse- who has complained of back pain for years- and truly understanding his or her pain with your own senses. You may have felt compassion for your spouse, hurting because someone you loved was hurting, but you couldn't really feel what he or she was feeling until you were thrust into the same situation. This makes empathy a subjective state.
I have read that empathy is "a higher plane of emotive behavior," but I have also read that "empathy precedes compassion," with each statement seeming to value one emotive state over the other. I don't believe that one is more important than the other. I believe that it is necessary to identify and understand the differences between empathy and compassion, so that we can inhabit each with greater awareness, consciousness, and intention. Most importantly, I believe in the power of mindfulness. Our words and thoughts create our reality and affect the world around us, sometimes sending out ripples so wide we can no longer perceive them. Pondering the meaning of a word, and the common use of a word, and then using it mindfully, can bring greater potency to the relationships words help you to forge in life.
So, cultivate compassion, pause to notice the people and other beings living their lives all around you, and you will notice their suffering. Most likely, their suffering will touch you, and you will suffer with them. In suffering with another, we feel the roots of our humanity, and while they are deep, we often need reminders. We can be so terribly desensitized by the onslaught of imagery to which we are exposed on a daily basis, as we scroll screen after screen, ingesting more information than we know what to do with. Sometimes we fail to feel compassion for others because we no longer see them as real; they're just images on a screen. This age of information overload gives us greater access to information, but also makes it harder to know, and to trust, what it is we are seeing. So, maybe we can start in our own homes, on our own streets, in our own cities and towns. Look around you, see with honest eyes, and let yourself feel deeply the suffering of others. It won't swallow you whole, and it might even awaken you to parts of yourself you have forgotten. Reach out to others with your compassion- with your mind, or your heart, or your hands- and, when you can, do your best to mitigate the suffering you perceive, in yourself and in others.
And, engage empathy when it rises, let yourself feel deeply when you find yourself in someone else's situation and realize how much they have been hurting. Sometimes you will feel guilty for not having understood sooner, but know that there is much we cannot fully comprehend until circumstances are thrust upon us. Acknowledge that guilt, and then set it aside, let it go or you are contributing to your own suffering, which spreads like a virus into the world. Reach out to that person and let them know that you understand their pain. You don't have to lay yourself bare, or confess your most intimate details, to do this, I promise. The mere act of offering genuine empathy to a suffering being is enough to dramatically diminish their pain. Just saying, "I feel you, I care, I understand," just offering a warm embrace of deep, empathetic understanding, with no words shared, one where your hearts are beating together and you feel that energy moving between you, can keep another person alive to see another day. I know that you know this feeling, my friend, and it is your humanity.
There is pain and suffering in life and it's happening all around us, in every being that possesses a spark of life. How do we meet all of this pain? Compassion. Empathy. Generosity. Gratitude. The service of Love. The willingness to feel for another. There is a humbling river of joy contained within these states of being. Go ahead, stick your toe in...the water feels fine!
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