The Bridge

Cautiously, I admitted, “In my mind, there is a very high bridge.”

I had been lying in bed for nearly two months, sick, and suffering, and frightened that I would not survive. Every moment was rigidly programmed to ensure my survival: water, pills, food, water, bath, sleep, water, pills, food, shower, sleep, water, pills, food, water, bath, water, sleep. I would creep, bent and trembling, from my bed, to the bathroom, to the kitchen, and back to my bed, the fatigue consuming. Constant pain, like being devoured very slowly and thoughtfully by a malicious force, my bones picked clean. And fear.  Terror. Nausea. Dizziness. Confusion. My betraying mind roaming through the shadows of unfriendly terrain, distorting, chanting, mocking, refusing to return to the places that once brought me pleasure or comfort. My heart hammering, skittering, and suddenly sliding down to a slow thud that would make me think, “I am dying. I don’t want to live like this.”

In the nights, I would lie awake, profoundly aware of the sensation of tiny aliens crawling under my skin, my hungry lungs gasping for breath that would not satisfy, the thoughts of an unknown thinker worming into my mind. Dark thoughts. Desperate. That bridge, beckoning. And, me, executing an eternal, arching swan dive, so peacefully, into lavender twilight. 

Each morning, I would drift, finally, into exhausted slumber and jolt awake a couple of hours later, anxious, frightened by the thoughts of the previous night. What was happening to me? And, how could I tell anyone? They would surely declare me insane, and lock me away. Many weeks passed this way.  

Then, when I had gone countless days with my head, neck, and throat engulfed in a cold fire, and the left side of my jaw almost clamped shut by muscle spasm, I called my sister, sobbing hysterically. “I don’t think that I can do this!” I wailed. “It’s too hard. It’s too much! It needs to stop. Nothing is making it stop!” I felt lost to myself, and the pain had driven me to unfathomable despair. I wanted nothing more than to go very far away, to a place where there would be no pain. Deep spasms of grief erupted from my body, and I cried, shuddering, until I could cry no more.

My sister talked to me slowly, quietly. She reminded me how much she loved me, how utterly she cherished me. She quieted my tears. She made me laugh. She brought me back. 

When I told her about the bridge, she said, without hesitation, “Walk across.”

Between Worlds

I get really scared sometimes.

Like, the other morning, when my blood pressure dropped suddenly and swiftly, and I couldn't catch my breath. I was struggling to remain conscious, terrified that if I passed out, I could hit my head and bleed to death before anyone found me. I got so scared that I felt paralyzed, unable to mobilize to get myself the help I knew I needed quickly. My breath was coming in short, quick gasps, my hands reflexively turning in on themselves from hyperventilation, my mind sending commands that my body could not execute.

Or, when, a few weeks back, I stayed up for four straight days because my body just wouldn't shut off. It felt as though there were trails of foreign bodies marching around beneath my skin, my eyes and nose itched with a ferocious fire, and electrical shocks were continually bombarding my heart, my brain, my gut. On the fourth night, all I could think was, "Alien invasion." I thought I was losing my mind.

There were whole days spent curled in a ball in my bed, the skin of my entire body engulfed in cold fire, every joint unimaginably stiff, sore to the touch, almost immobile, my head gripped by a migraine so powerful and miserable that simply drawing breath was indescribable agony. Moments when I suddenly realized that I was walking in circles in my apartment, unable to remember my particular mission. Long hours of simply not knowing if the pain was ever going to pass, if I was ever going to be able to think clearly again, if the itching and the voices and the delirium would ever let me go.

I was absolutely terrified. And, alone.

When being in your body is agony, it is very hard to want to remain in it. I have felt myself hovering outside myself much of the time these past many weeks, my thoughts far away from my body, my mind drifting through time. I wanted to go back, back to the moment before the insect bit me and injected its sewage into my bloodstream. I have cried, and wailed, and paced, and lost a great deal of sleep clinging to this desire, trying to will time to take me back to that very moment right before the bite, so that I could find that bug and kill it, and narrowly escape this hell. But, I can only be here, cultivating acceptance while concentrating all of my strength for the fight of my life, so far. I want my health back. I want my life back. I want the me that I have known and loved back. But, that is all an illusion. There is no back. There is only this life right now, whatever it brings.

I told a friend the other day that I feel like I am between worlds, but I don't have a shaman to help usher me where I need to go. "I guess I'm going to have to be my own shaman," I said. She affirmed that I am that. And, I think I always have been: only I know how to get me where I need to be.

I said, "I am struggling. I am trying desperately to hold on to the life that I have had, but I know that I can't, because it doesn't exist anymore, it is just an illusion. But, I am really scared to let it go, and surrender to the unknown, even though I know that I have to, because now it is weighing me down."

Today, an assuring voice- my own inner voice- instructed me, "Let go." I am ready to be whatever this time has wrought of me. However broken, bent, fragile, and frightened I may feel, there is a spring of courage welling up within me that gives me direction, and I trust that I will know my way.

Moving Forward

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.   

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.

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...

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!

19 Years of 19 Days

Dear Jesse,
Before you were born, 19 days didn't seem like a very long time. 

And then you came in so challenged to even breathe, your heart one open chamber right in the center of your chest, and changed for me the very nature of time. 

Because you were born at night, your first day was only 55 minutes long. 

On your second day, you had open heart surgery, and if we measure the passage of time by the significant events that we experience, you had already done more living in 24 hours than I had done in thirty years. The rawness of that realization took my breath and humbly sent me to my knees. 

By your third day of life, "day" and "night" no longer existed, and I had learned not to watch the machines for a sense of how you were doing. Women wiser and more experienced than I, those nurses whose ministrations seemed more calling than profession, focused my attention on you and said, "Leave the machines to us." When alarms would sound, Dad would smile and whisper to you, "It's just a truck backing up." 

We started singing to you after a few days, because "how can I keep from singing" those songs that your Dad had written like a missive to our future selves? From the moment I met him, I knew that your Dad was a prophet, but only when we started singing to you his songs, written years before he had even met me, did I fully understand what he had been preparing us for. 

Remember this one?

"On wax wings of fire,
I climb
Higher and higher.
Before diving to the sea,
effortlessly.

And I know
that I won't live
forever.
But I'm gonna sing a song,
before I go.

And when the wind is crisp and clear,
my thoughts
well
they follow my ears.
To the desert of my dreams,
where my inspiration streams.

And I know,
that I won't live 
forever.
But I'm gonna sing a song,
before I go.

I try to speak my mind,
and embrace the sound.
Dig down in my soul,
when nobody is around.
Oh, 
but it's scary.
Oh oh,
the hope
I have found. 

And when my day comes,
I won't lay down.
I'll pick up this guitar and strum.
Til the nighttime washes over me.
Then I will be free.

And I know,
that I won't live forever.
But I'm gonna sing a song,
before I go.

On wax wings of fire,
I climb.
Higher.
And higher."

Four or five days after you were born, I had to be taken to Brigham and Women's Hospital because I was hemorrhaging. A lesson a mother learns the hard way: I can't be there for others if I don't take care of myself. Of course, your Dad was amazing, a rock. I know that he was terribly frightened, facing his deepest fear, but he stood strong, got me the best care, and tended to me with gentleness and love. 

A week into living with you at Boston Children's Hospital, I realized that I could not, for one moment, defer living. You placed me in the perpetual present and left me there. As difficult as it was at times to face the loss of the fantasy of past and future, I am so grateful to you for giving me the gift of Now. 

One evening, a little more than a week after your birth, a new nurse asked me, "Do you want to hold him?" as though it was something we had been doing every day. I was stunned, and I said, "Can I?" She held her tongue, but I could see that she was disappointed and even a little angry that no one had yet thought to create an opportunity for us to hold our son. It took a great deal of work, shifting wires and tubes, but then you were in my arms and I was the happiest I had ever been. I cried with great relief and joy, and your Dad and I sang, and I smiled so much my face ached. I will never forget cradling you close in the rocking chair, breathing in the scent of your newness and singing, "Boom boom, baby goes boom boom, baby goes boom boom now. We all cry, everybody does it, everybody boom booms now.." over and over, like a mantra.  

Eleven days in, on Valentine's Day, we received news that a local artist had arranged a benefit concert at Fire & Water, in your honor. At first, the thought of leaving your side felt impossible, so we told our staff of volunteers not to expect us. But then your Dad and I talked about it and decided it would be like taking you on a day trip and giving the people back home a chance to come to terms with what we could see was happening. We knew intuitively that you weren't going to be staying, and we wanted to bring others closer to this understanding, and closer to us. So, we left you with your nurse Jane, knowing that you could go while we were away, and drove west in the van we called "Home." We assumed that no one would show up on a frozen February night, but when we pulled up to the back door of the cafe and climbed out of the van, a young guy leaning against the doorframe said, "Good luck getting in there. It's packed!" Your Dad and I walked through the door, and the room got very quiet. People parted to let us pass, offering hugs, a squeeze of the hand, a smile. Dad was as shocked as I was to see all of those people gathered in support of you, of us, and we held onto each other to keep from falling. It was a night full of love, the real kind of love that seeks only to nurture spiritual wellbeing. I was awakened by the outpouring that night, as a room full of strangers showed us that we had indeed accomplished our goal of building a community around you.  

A day or two later, the doctors told us that you needed another procedure, which they believed would allow you greater blood flow and provide you with more oxygen. We consented, preparing ourselves for the possibility that you would not survive it, but hopeful that it would bring you greater ease and maybe get you off of the ventilator. 

The procedure went very well, but, two days afterward, it became evident that the removal of the obstructions was now causing too much blood to rush to your heart. Your chest was filling with fluid and the doctors had to insert drainage tubes in your sides to deal with it. 

A few days later, you developed an infection which quickly became full-blown sepsis. Your Dad and I could see that you were working so hard just to stay with us, and one evening, you opened your eyes and looked first at Dad and then at me with a gaze that galvanized our resolve. Later, in the privacy of the room we had borrowed from friends, we spoke and realized that we had seen the same thing in your eyes. We had both felt you saying, "Haven't I done enough?" 

The next day, the doctors affirmed that you were, indeed, very sick, and told us that although they could try to do more to help you stay longer, it seemed that you had gone as far as you could go. Your Dad and I quickly agreed that when night came, we would remove all the tubes and wires, and sing you out. When the nurse removed your breathing tube, you opened your eyes and looked at us, and your face glowed like the full moon on a crystalline night. Later, I fell into bed and felt your spirit flood my body, felt that I was you lying inert on that hospital bed, my limbs limp and sprawling. I slept deeply that night for the first time in weeks, and dreamt of other lives, distant and overlapping. 

Our moments with you were so long, Jesse, and every day felt like a privilege so great that I could not imagine being given, or even wanting, more. Never before had I been so alert. No detail escaped, and this careful attention to every moment altered time as I had previously known it. I am well aware that people believed we were living their nightmare, but, honestly, we were blissfully happy being there with you. Sitting by your side, holding your hand or cupping your fuzzy head, singing to you, was all of life. You came streaking through this world like a comet, your bright message of love indelible. 

My beloved Jesse, I have been living those 19 days for 19 years, taking every available opportunity to tell the people I meet something I learned from you: when every moment is sacred, 19 days is an eternity.