I haven’t blogged about health stuff in a very long time, but I wanted to do a quick post sharing some recent experiences, highlighting what does and does not work in a medical practice. I recently moved and changed health insurance carriers, medical groups, and doctors. I was advised to go to a certain clinic that is supposedly the top one on the area.
Being told that a clinic is a top one in the area does not actually mean one will receive quality care. In the 1990s, I traveled one hour in each direction, to go to what was supposedly the best medical center in the San Francisco Bay Area – ie, not some backwater hick town area, but rather, a metropolis where one should expect to receive quality care. Instead I received substandard care across the board, effectively setting in motion a chain reaction of events that left me in chronic and debilitating pain for the better part of a decade, thereby costing me a few hundred thousand dollars in out of pocket healthcare expenses, never mind the cost to me physically, emotionally, psychologically, and spiritually.
One must, however, start somewhere, so I scheduled an appointment with an endocrinologist at the recommended clinic here in my home. I sent information about my hypersensitivity and asked the doctor to be aware when examining me. I was surprised by how gentle, respectful, and caring he was. Not only did he examine me carefully and gently, but when he walked in, he asked if I shake hands – having connected the dots, on his own, between hypersensitivity and the ability to do something as routine as hand shaking. I do not in fact shake hands, because of hypersensitivity; and it is always a socially awkward matter. So what a relief it was to be asked that! This doctor was paying attention.
Not only that, but the entire staff at this practice was mindful and caring. Ditto on the next doctor I went to at this clinic. Only those who have been through the wringer of chronic pain or chronic illness can understand how vitally important it is to have experiences like this. It is water for the dehydrated soul wandering around in the desert. I must emphasize how sad it is that quality care, that mindful treatment of a patient, is an outlier experience. That speaks volumes for our medical system.
Doctors and medical assistants routinely have disregarded my advance notice about hypersensitivity; have pushed, grabbed, and poked me aggressively despite my having informed them of this hypersensitivity; have in one way or another mocked and ridiculed me for having this hypersensitivity – as if it were a sign of mental illness, and as if mental illness were something to be mocked and ridiculed anyhow; have so much as smirked at me and kept their hands on me, pressing my body where it hurt terribly, as I have informed them that they were hurting me; and so forth. So just the basic decency of honoring my request and caring about how they were behaving and being mindful was extraordinary.
Then there was the experience today, where I went for blood work. The blood technician disinfected her hands right before putting on her gloves, right before taking my blood – and all in front of my face, so that I could see and be assured that she was practicing good hygiene. When the glove dropped on the table, and I asked her if she could please change gloves, because I was concerned about germs, she said, “Oh sure,” in a sweet and caring voice, and she not only changed gloves, but also disinfected her hands all over again. Take this in contrast to the hostility I received at the previous medical clinic where I was seen, when I asked the new blood tech to please inform me of the precautions she would take, and I got a reply in a tone that indicated I was an asshole and/or idiot for asking. In addition, at this new clinic, when I mentioned that I get lightheaded from blood work sometimes, the tech caringly suggested that we do the blood work with me lying down; whereas in the previous clinic, the tech retorted snidely, “what, are you going to cry when I take your blood?”
It is unbelievable and abominable what passes for medical care. I believe that while yes, there are good natured souls drawn to medicine, who want to help people and save the world, there are also sadists, control freaks, aggressive and domineering types who want to be in a position of power-over. And you most certainly are in a position of power-over, when someone’s very life is in your hands.
Given that we live in a world where, when you complain once to the management, you may be considered an informed and educated patient who is kindly advising the management of means for improvement, but if you complain twice or more, you are seen as a trouble-maker, one must be judicious in when one complains about the kinds of behaviors that go on.
That’s why I chose not to say anything about the receptionist who answered my phone at the endocrinology clinic today – not the usual assistant for my endocrinologist, who is just so very friendly and caring, but someone answering for the general endocrinology clinic. After leaving the blood lab today, I realized that the blood tech had not asked me if I had been fasting. Usually when I get a cholesterol test, as I was doing this morning, the blood tech verifies first if I have been fasting. Since she had not asked me, I questioned whether the test request had gone through properly.
So when I got home, I called my endocrinologist’s office and informed the person who answered the phone that I needed to check in about two matters. First, I asked her to verify that my lab request had gone through properly, namely that the cholesterol test had in fact been requested for my blood work today. I explained that since blood techs usually ask about fasting, and that since my tech hadn’t asked, I wanted to make sure the test had been requested and completed. “All your lab tests have been completed,” she answered. Her tone had a sharp edge of annoyance, as it continued to have throughout the rest of our conversation. “Right, but I just want to verify that the cholesterol test request did go through,” I said, keeping my tone friendly and conversational. “I can’t see the results of your tests,” she. “That’s not what I’m asking,” I said patiently. “What I’m asking is whether the cholesterol blood test order did in fact go through to the lab.” “Just because you didn’t get asked whether you fasted doesn’t mean the test wasn’t done,” she said.
“I don’t think you understand my question,” I persisted, amazed that I needed to ask yet again. This woman was not listening, and I got the sense that she was annoyed that I was not being the passive patient and just allowing whatever to happen, without questioning it. “I want to verify that the cholesterol test request did in fact go through.” This time she read off all the lab test requests, which included the one for cholesterol. “That’s it, great, thanks,” I said.
Next I informed her that the person I had spoken with previously had said they could fax all my test results to my naturopath in another state, but that I should call and follow up once my tests were done, to ensure that the tests were in fact sent. “We don’t store that kind of information in our system,” she said, adding that they only stored patient chart information. “OK so do you need me to get you that information again?” I asked, as I headed to my computer to retrieve it. On the way to my office, I asked if there was record of my conversation with the previous individual, regarding the tests being forwarded. She confirmed that there was. I asked if the contact information for my naturopath was in that record. She said that my ultrasound results had been forwarded to my naturopath. I asked again if the contact information for my naturopath was in that record. She said again that the test results had been faxed. Trying a different tack, I asked her what number they had been faxed to. She said it started with “866.”
I opened the website for my naturopath and checked the numbers. There was only one 866 number, and it was his fax number. I recited the number and asked if that was the number in the record. She said, “It’s the number I have written down.” I guess she did not want to acknowledge that the information had in fact been in my chart all along. I asked if she was going to fax the results of my blood test or if she would pass on the information to my doctor’s assistant. She said that she would do it. I asked if she knew when the blood test results would come in, and she said no. I said that I would follow up in a couple of days to make sure it went through. She told me to have a good day and ended the call.
It should not be this difficult. Unfortunately, it often is. Medical office administrators are the front lines of a medical practice, and some are downright intimidating, especially when someone is in the throes of a chronic health issue. Whereas a patient advocate may have the energetic wherewithal to combat an ornery medical assistant – because, truly, getting medical care often feels like being at war – patients themselves may be too depleted and overwhelmed by the litany off issues they are facing, to be able to cope with managing the attitude of a medical practice administrator. Then there is the concern that if you irritate said administrator, it might just get worse. When your entire life is crashing down around you, the last thing you need is to have a medical administrator on your case.
Anyhow, I’m not going to tie up this post with a tidy bow, have to get to work, but just wanted to share.
We live in a world where everything is inter-connected and where therefore we are at the mercy of other people’s behaviors, and with those behaviors, other people’s stupidity. There is only so much we have control over, and only so much we can do to take care of ourselves. Often, our lives are spent cleaning up other people’s messes — whether attempting to take care of people who can’t take care of themselves; or just trying to take care of ourselves, after other people’s negligence hits us – in some cases, literally.
This conversation goes back to my third grade class in orthodox Jewish day school, when the rabbi told us that Gd created the world and everything in the world, following which I asked, “Who created Gd?” Kudos to Judaism, and to this rabbi, for being able to say, “That’s a great question. We don’t know.” I respect people and traditions that are willing to sit in the place of not-knowing.
Then the rabbi went on to tell us that Gd is omnipresent and omniscient, that Gd lives in the past, present, and future, that Gd knows all. Not long after that teaching, the rabbi said that human beings have free will, and that it’s super cool, because we get to make our own choices. My hand went up again. “If Gd knows what will happen in the future, then how do we have free will? It’s like we don’t really have the choice of how to behave, because Gd already knows what we’re going to do. It’s pre-determined.”
The rabbi once again congratulated me on an insightful question and once again sat in the place of not-knowing, saying that it was in fact a paradox. Over the years since then, I gave the matter quite a bit of thought. Here’s the decision I came to: We have free will only up to the point of our own actions. Everyone else has that same free will. Gd does not interfere with anyone’s free will, because that is the supreme gift of our creation: We have the power of self-determination.
So how does it all play out?
The model I came up with is that there are ten streets. On one of those streets, there is a criminal. If we pray to Gd to get us home safely, Gd can help us decide to go down one of the streets where there is no criminal. But if all ten streets have criminals, we can pray to Gd all we want about getting safely home. We still may encounter that criminal along the way. And that criminal in turn has the choice of how to act towards us. The criminal may Gd forbid decide to attack. We can ask Gd for help in responding to that criminal, but again, it’s like there are three players in a game, and everyone is both limited and affected by the moves of the other players. If the criminal wants to attack, s/he can do that. In that scenario, we only get to respond to the attack and ask Gd for help in that response.
In other words, we have limited control in our lives, even if we believe in a kind Gd who wants the best for us, and even if we are loving, amazing, responsible, and spiritual beings. We can pray; we can eat healthy food; we can exercise; we can be kind; we can go to therapy and get rid of all the crap in our psyches; we can communicate lovingly and clearly; we can volunteer our time and money to those who need support; and on and on and on. We can lead elevated lives full of love, light, healing, and worship of Gd. We can still get fucked.
Take my life by way of example: I take outstanding care of myself. I meet every challenge with an attitude of how I can use it to my advantage and that of humanity. How can I spiritually juice it? What lessons can I get and pass on from it? How can I turn it around, from something that is destructive to something that is profoundly constructive, instructive, and healing, for myself and others?
By way of example, I turned my experience of childhood sexual abuse and years of street harassment into a decade of work as an activist, writer, educator, community organizer, and self defense instructor – working to end violence against women and children, as well as to help society rethink gender roles. I turned my childhood experience of racism into two decades as the pioneer of the Jewish Mulitculturalism movement – writing and teaching worldwide, providing the cutting-edge thinking and tools for creating an all-inclusive Jewish community. I turned nearly a decade of suffering from chronic and debilitating pain into a new methodology, Dancing with Pain®, which not only enabled me to self-heal from pain and live an active and pain-free life, but also to teach others to do the same.
And on and on and on.
In other words, no matter what the circumstances, I have lived my life with positivity, innovation, strength, passion, and determination. As I said in the personal mottos that I made up half a lifetime ago, “I will not be limited by the limitations of my circumstances” and, “There is no limit.” My attitude and approach make my life vibrant, fulfilling, exciting, avante-garde, meaningful and a whole bunch of other really cool adjectives. I have done more in my compact little life than most people have done by the time they die at an old age, despite having had a whole lot less shit to deal with.
My upbeat and enterprising attitude enables me to create an amazing life no matter what. It does not, however, prevent crap from happening in my life, or more to the point, stop other people from having a negative impact on my life. It’s just like with street harassment: When a man decides to harass a woman, the woman cannot make the harassment un-happen. All she can do is choose how to respond – verbally confront the guy, walk away, hit the guy, whatever. Each choice comes with a price and chain reaction of consequences. Once the guy chooses to harass, he effectively has robbed the woman of her own choice to walk down the street in peace. It’s just damage control after that.
And here’s the other thing: Lightening can strike as many times as it damn well pleases. Just because one difficult, challenging, or altogether insane thing happened does not mean another won’t. Or another. Or another. And each time, it can have absolutely nothing to do with you, your choices, your spirituality, or your lifestyle. You can be doing absolutely nothing wrong; to the contrary, you can be doing everything right, and you still can have a litany of shit to deal with over the course of your life. Just when you crawl out of the pit, you might get thrown back in again, this time with snakes at your ankles. And it can have everything to do with the world you live in, but not with you.
I remember the case of a guy in Israel, a working class man who sold produce at the souq, the open-air market. One day, a suicide bomber blew up in the market, injuring this man. He escaped death that time, but not long after, another suicide bomber blew up in the same market, killing this man.
Did this man have “bad luck,” or is there a very serious case of violence against Jews/Israelis – leading two misguided souls to target a crowded market, a watering hole for locals, where this man worked day-in, day-out? Why do we even think in terms of “luck”? It’s purportedly something neutral, ie, the luck of the draw, but in context, it is used in ways that are blaming and shaming: If something entirely outside your control – the product of geo-political upheaval or moral decay or natural disaster – happens and impacts you, why do people immediately start yammering on about your luck and your karma, even when knowing scant little or nothing at all about the rest of your life, as if the tiny piece of information they have about you defines you?
As of two weeks ago, I have been in seven car crashes, six of which have been other people’s faults, and one of which is unclear whose fault it is, though I went ahead and took the blame (I was 20, driving 5 mph, looking for parking, when suddenly the nose of my car was in the side of someone else’s car). In one case, the cab I was in got into an accident; in another case, someone plowed into me when I was making a left turn; in three cases, I was rear-ended while at a stop light or while waiting for a pedestrian to cross; and in the remaining case, someone driving the wrong way came into my lane, crashed into my car head-on, then took off into the night.
Oh yeah, then there was the guy who hit me when I was running across the street (in a cross-walk, which in California cars must always stop in front of, giving pedestrians the right of way), on my way to catch the bus to get to my flute lesson, when I was about 14. The impact knocked me to the ground. I literally jumped up and kept running to catch the bus, while the guy called after me, “Are you OK?”
Outside of car incidents, there was…
- the doctor who splashed liquid nitrogen between my legs, just for funsies — leading to about six years of eye issues, from incessant and severe eye pain and headaches, to hypersensitivity to light and inability to wear contacts
- the MRI machine that electrocuted me, with the tech that kept putting me back in the machine, insisting it was impossible, and the supervisor who covered the whole incident up – following which my back went out every day for six months, leaving me like a beached whale in bed
- the chiropractor whose adjustment left me with two dislocated shoulders, leading to a decade of pain, suffering, and disability such as being unable to lift a sheet because it caused too much pain
- the eye doctor who, despite my telling her about my hypersensitivity (as a result of all the previous medical negligence, though I did not mention that), failed to tell me about the common negative reaction to Toponol and, as such, failed to offer me the choice of whether to take the risk or not – leading to my own severe reaction to the eye-numbing drug, along with renewed incessant and severe eye pain and headaches, sensitivity to light, and numerous lost work hours as a result
- the man who jumped into the wrong side of the pool at my gym and swam straight at me – slamming into my wrists and causing pain and disability that left me unable to type, never mind pick up a mug, and leading to a chain reaction of events, including losing my job and having to invest $3,000 into a computer compatible with voice activated software, at a time that I was out of work.
But wait! There’s more…
When I tell people even a fraction of this aspect of my life story, emphasis on aspect, they almost invariably reply that I have bad luck or bad karma, or offer some variation thereof – sharing their unsolicited opinion that I am a magnet for medical mishaps or that I need to wear a helmet walking down the street. One woman I had just met was insistent that, on the karma front, either I had done something horrific in this current incarnation or that I must have done something equally horrific in a previous incarnation. Another woman, both my assistant and friend at the time, first informed me that these things must have happened to wake me up; and upon my advising her that I was plenty awake before they happened, thank you very much, told me that therefore it must be that my light “shone too brightly” and that Gd needed to dim it. Why Gd would want to dim the light of one who shines brightly is beyond me. But hey, that’s her karma, not mine.
Our lives are a never-ending constellation of variables, which we can connect in any myriad number of ways. How people choose to connect those variables says far more about them – their own philosophy about life, their own ideas about Gd — than it does about me or what I have dealt with in my life.
On that note, in college I had an economics professor whom I thought was an idiot because I did not understand a word he said. My classmates, meanwhile, thought this professor was a genius, also because they did not understand a word he said. The difference between my reaction and their reaction was one of self-esteem. I know that I am a highly intelligent person. If I do not understand information you tell me, and if I ask you clear and direct questions, and if you still do not explain the information in a way that I understand, that’s on you, not on me.
Similarly, as I have traveled through the worlds of conventional, complementary, and alternative medicine, experiencing one incident after another of active and passive forms of medical negligence, I knew the problem was not me. I knew the problem was the medical system. I further knew that if those kinds of incidents were happening to me – an educated, intelligent, articulate, and assertive middle class woman who is highly skilled in communication – then they must be happening to many others, in exponentially worse ways.
In other words, take my experience and complicate it by poverty, lack of education, poor communication skills, racism, language barriers, lack of accessibility, and any other innumerable factors that go into play in the doctor-patient relationship every day across this country, never mind this planet, and that is one heck of a hot mess. There must be scores of people, I knew, without agency – whether people with no outlet for their experience and voice, people who have no voice, people who are too debilitated and overwhelmed to speak, or people who blame themselves for their experiences.
Sure enough, nearly two decades after fighting back against the whole bad luck/bad karma assault single-handedly, I came across statistics indicating that somewhere between the third and fifth leading cause of death in America – death, mind you, not injury – is the healthcare system. It takes a whole lot of negligence to kill someone. That is the equivalent of my personal experience amplified by, well, infinity, because when you’re gone, your entire life is taken from you.
Which leads me to the matter of numbers: People seem to get really caught up in the number of times certain things “have happened to [me],” as they reference it. First off, I suspect that there are a whole lot of other people out there who have experienced these kinds of things just as many times, if not more. For example, I know one person who has been in nine car crashes and one who has been in ten – at least the last time we spoke about these matters. (Who knows, it may be higher now, though I certainly hope not and bless them to never go through that again.) I also know someone who was rear-ended at a stop light something like four times, fairly close together. These are only people I know about.
People in fact tell me things they do not tell other people, most likely because they feel safe with me – especially when I share some of what I have been through. With people responding so aggressively with the bad luck/bad karma/law of attraction/fill-in-the-blank-unhelpful response, most people are going to shut up about anything that happens to them, outside the realm of that which is socially acceptable and celebrated.
I am not one of those people. I live life raw, naked, unashamed, no matter what gets thrown my way. I write about my life as the expression of my soul, throwing out to the universe my experiences and my thoughts about them, letting the universe then work its magic. Most people keep it to themselves. And it’s a shame, because the more people honestly talk about their life experiences, the more we can all benefit – learning and growing and understanding the true nature of life itself, knowing that we really are not alone.
In fact, the act of women sharing their stories began the feminist movement. Suddenly women became aware that their suffering was not about them, that they were not crazy. The shared collective experience pointed to the culprit of institutionalized patriarchy. That awareness led to awakening that led to revolution that led to a multitude of improvements in the lives of women worldwide.
Speaking of the women’s movement, it is still the case that if a woman is harassed or raped once, people may – emphasis on may – be responsive to her and support her and tell her it is not her fault. If it happens more than once, though, heads start shaking, and tongues start wagging. The blame begins to shift from the perpetrator to the victim. I remember when a gaggle of middle school boys gang-raped a girl in their school. Eight boys tortured this poor girl. She transferred to another school to get away from the trauma, and having heard about the rape, another gaggle of boys targeted her and gang-raped her again.
My heart bled for this girl, not only because of the life-long devastating impact this experience likely will have on her, but because she probably will be terrified to talk about the experience – which she desperately will need to do, so as to heal from it – because then people will point fingers at her.
The shame is on those who point fingers at a victim, not on the victim. Every time someone shames and blames a victim of crime or circumstance, that person becomes more afraid to open her mouth the next time around. I, for example, now refrain from telling doctors anything except the absolute minimum information. I refuse to give them the back story about my various injuries, because I just don’t want to fucking hear it again. When I turn to someone for clinical medical response, I do not want him/her to give me a personal evaluation of my life, to feel entertained at my expense, or otherwise ridicule me for the traumas I have endured and overcome.
That kind of response heaps trauma on top of trauma on top of trauma.
So back to the core issue of numbers: First off, I contest the notion that my experience is that unusual. I just think that we don’t hear about these kinds of experiences so much, because after a certain number, people keep it to themselves. Plus, you know, we just do not know everyone on the planet. We’d have to do one heck of a complex survey to get any reliable metrics on this matter. Has “a lot” of stuff in fact happened to me? If we were to line up everyone in the world and count all the stuff that happened to them, where would I fall in the spectrum? And how could we even possibly come up with metrics for something like that?
Among other factors to consider, how do we decide what is “bad,” and how do we rate these “bad” things in relation to each other? When does something make a blip on the radar screen of “bad stuff that happened,” and when does it not? Ideas about “good” and “bad” are perhaps primarily about perspective. For example, in 1997, I was driving to the freeway in San Francisco. It was pretty late at night, I believe on a weekend, and there was a vibe in how people were driving, that made me feel unsafe. I thought people might be driving drunk. So I turned onto a side street, to get to the freeway without incident. That’s when a car rounded the corner, came into my lane in the wrong direction, hit my car head-on, dragged down the entire side of my car, with me screaming the entire time, terrified of dying, and drove off into the night – changing the entire course of my life from there on out.
This incident threw me into cauldron known as the healthcare system. I was refused tests, misdiagnosed, dismissed as a hypochondriac, physically injured, and emotionally traumatized at the hands of healthcare practitioners. I went from being super athletic to struggling to haul my ass out of bed and function.
So was that a “bad” thing that happened? Unfortunate?
As a result of that experience, I learned that one cannot avoid danger. If the Universe wants to kick your ass, it will fucking find you and do its number. Period, end of issue. With that understanding about life, I followed my heart and moved to Israel in 2002, amidst a wave of terrorist attacks. One of my friends had a close call with being blown up at the Hebrew University cafeteria: If not for a professor saying he wanted to talk with her for a few minutes, she would have been in the cafeteria at the time of the attack. Another friend of mine had just gone upstairs after checking in at the El Al flight to Israel from Los Angeles, when a terrorist opened fire on that very line. Amidst this madness, I packed up my life and moved to Be’er Sheva, a desert town in southern Israel.
And that is exactly where I became a journalist, which in turn gave me an incredibly powerful platform and flexible, location-independent job, replete with oodles of prestige and glamour, among other things enabling me to work around all my chronic and debilitating pain. My work as a journalist connected me with the world, at a time that I could barely walk two blocks, and provided an extraordinary outlet for speaking my voice, as my work was getting read by tens of millions of people worldwide.
Israel is also where serendipity led me to meet my friend Rivi, who in turn took me to two desert retreats, where a sequence of events led me to create the Dancing with Pain method of healing chronic pain. As a result of this dance method, I self-healed from nearly a decade of chronic, debilitating pain that had left me severely depressed and contemplating suicide. Since that discovery, I went on to lead a pain-free and active life, biking as many as 30 miles at a shot.
Living in Israel otherwise rocked my world, transformed my life, and healed my soul.
If not for the lesson I learned about not avoiding danger in life, I would not have moved to Israel – meaning I very well could still be living my life in horrific pain today. Instead, I have at my disposal a life-affirming tool, available to me 24 hours a day, 7 days a week, through which I have and plan on continuing to overcome any pain and suffering. In addition, the learning I did – both through my own hellish journey through the medical system and through my own unfolding through Dancing with Pain - gave me the tools to save my mother’s life several times over, as she went through multiple life-threatening emergencies over the course of six years. It also gave me the courage, wisdom, knowledge, and tools to choose to reject surgery in responding to a cancer diagnosis nearly four years ago, and instead to follow my intuition and respond holistically. As an upshot, I cold-stopped the growth of thyroid cancer, without pharmaceuticals or surgery.
Bad luck? Good luck? Who is to say?
I think that fixating at what happened to someone – especially when it is outside that person’s control – is a colossal waste of time and ultimately only adds to the layers of trauma and burden and things to overcome. I think the important point is not what happened to us but rather what we are doing with what happened to us. And I wish that more people would look at life that way, so that I could speak freely without having to get into this draining conversation every time I share some of the traumas I have been through. I want to stop cringing when I speak. The greatest gift someone can give me is a matter-of-fact attitude, taking in stride whatever happened and focusing not on what happened to me, but on who I am as a human being, and what I mean to them.
So to recap: I pose that it is absolutely impossible to know, and downright arrogant and counter-productive to think we know, whether the number of things that happened to someone is “a lot” and whether it is some indicator of that person being a walking disaster.
Second, I think the number of times that something happens pales in comparison by the severity of what happens. I was friends with one young man, knew another young man, and was friends with the friend of a third young man, all of whom were killed by cars when these young men were in their early 20s. Two were hit by a car while crossing the street. One swerved to avoid hitting an animal in the road and ran into another car, getting killed on impact. One fatal incident is in my book far worse than a whole litany of those you get to walk away from.
Was I diagnosed with thyroid cancer? Yes. And I thank Gd it wasn’t breast cancer or colon cancer or any of the other number of cancers – which numerous women in my family had and died from. Of all the cancers in the world, thyroid cancer is the absolute best one to get. It is slow-growing, which meant I had what everyone with the big C covets: time. I have been able to experiment with juicing, organic food, veganism, clean animal products, and mind-body medicine. Oh yeah, and I have enjoyed the tremendous satisfaction and power of stopping the growth of the nodule in its tracks, as a result of all this experimentation.
There are an untold number of traumas floating around in the world: People have lost their entire families in natural disasters, and people have been killed in those same natural disasters. People born into rough neighborhoods have been sent down a harrowing life of drugs, crime, violence, imprisonment, and death by murder, and people have lost loved ones in that same way. Plane crashes, sex trafficking, blindness, political imprisonment, stroke, war, kidnapping, famine, domestic violence, heart attack…the list goes on.
And even with that list, while I would not wish any of it on anyone (except, to be honest, fascist dictators promoting genocide), there are inspirational stories of overcoming trauma and tragedy. The human spirit is incredible. So how about we start looking at and speaking about things in ways that uplift that spirit instead of shut it down, through shaming and blaming?
Tonight I went out to get pizza at a popular joint, where everyone is served exactly the same pizza, and everyone sits at communal tables. The place was packed, as usual, and I ended up sitting next to a couple, the male half of which joked about how the restaurant is socialistic, forcing everyone to eat uniformly. “What if I want extra parsley?” he quipped.
It was funny, so I excused myself for overhearing (he was, after all, just four inches from me) and said that was hilarious. He proceeded to laugh about what would happen if he insisted on more broccoli. “And if there was a mutiny,” I added, “with everyone demanding customized pizza!”
We continued chatting, and at one point, he got excited about what he was saying and talked so loudly that my ears physically hurt. I asked him to speak more softly, telling him that I have sensitive hearing. He paused. “You want me to speak louder?” he literally shouted – leaving me feeling as if someone had just stabbed me with an ice pick.
What the fuck?! That kind of behavior is tantamount to violence. Garden variety violence that passes off as humor – someone entirely disregarding and/or dismissing the needs of another human being, doing exactly what someone has asked to please not do.
I gave this guy the benefit of the doubt. Perhaps he thought I asked him to speak louder, despite the fact that the way he had responded seemed as if he were deliberately doing the opposite of what I had requested.
The guy started saying that his girlfriend, sitting across from him, had sensitive ears too, and that it was a constant issue in their house, that she liked it when he was downstairs and she was upstairs, because then she could hear him at just the right volume. She, meanwhile, informed me that they often argue over the remote control. As they went on about how hilarious it all was, and how much I had in common with her, I was recoiling from the pain and still wondering if he had shouted on purpose.
A little while later, when his girlfriend had gotten up to get something, there was an opening. “Did you think I said I needed you to talk louder?” I asked. After all, he had admitted to being somewhat hard of hearing. I thought he said “no,” in response, which felt so unbelievable, again, that I asked one more time. “I didn’t know,” he said this time. “I just never have random people asking me to speak more quietly.”
The way he said it, the energy of the interaction, left me sensing that he was irritated I asked him to speak more softly, as if it was some kind of assault against him, and so he decided to “counter-attack,” as if it was at all on par, instead of 1) clarifying what I had asked (if he truly was unclear) or 2) responding to my request with care.
By then, the place was closing, and other tables were available, so I got up and moved, without another word. I tried focusing on something, anything, positive, but I kept ruminating on the situation – largely because my ear still hurt. Should I go and tell him, I wondered – offer feedback that his behavior had caused harm to another human being?
On the one hand, I am a firm believer that we help each other learn, grow, and change, through our interactions with one another. For this reason, I often have engaged in conversation about uncomfortable matters, with random strangers, when an issue has come up. It’s all part of raising awareness, especially around invisible disability issues. The thing is, someone who would behave like this is most likely also not going to care, again when I approach him, and then the situation can exacerbate and leave me even more upset than before. The more I am dealing with some chronic health issue, the less energy I have for educating the masses. As a man on a moped said to me, as I yelled at a woman who had dangerously cut me off with her car, when I was on my bicycle, “Lo lehanech. Lo lehanech” – meaning, “Don’t educate. Don’t educate,” because, he continued, as we both pulled to the side to chat (this is one of the myriad of random ways you meet people in Israel), they don’t care, so it’s a waste of your energy.
Back to the pizza joint in California: I also wondered if I should have hit the guy when he shouted like that, and I felt somewhat weak for not having hit him and for not even giving much consideration to the possibility. The thing is, when someone does a violent act, no matter where it lands on the spectrum of violence, the damage is already done. There is no undoing it. So is the objective to remove myself from a situation, from a violent person, and just focus on healing? Or is it to dish out consequence? Which serves me better – energetically? spiritually? Is part of healing redirecting the assaultive energy back at the assailant, holding that person accountable for the behavior, getting creative and in-your-face about it?
Take the example from a few weeks ago, when I was walking through the parking lot of a health food store. (Why do people often seem more aggressive at health food stores than other stores?) I was walking on the left side of the lot, when a car turned into it, heading toward me. His right was my left, so I moved over to my right, to give him space to pass without any discomfort. Admittedly, I was more concerned with my discomfort than with his, because I have had enough experiences with people being unconscious in the way they move through space, that I did not wish to take a chance while passing something that weighed at least one ton.
There were diagonal parking spaces on my right hand side, and no open space beyond that, so the farthest right I could walk was alongside the trunks of cars already parked diagonally. As I approached an empty diagonal parking space, the man in the car began driving directly at me, coming about a foot from me and still going. I stopped, put up my hand in a stop position, and yelled, “Stop!” He stopped. After a pause, I continued walking, and as soon as I started walking, he came at me again – ie, drove forward into the parking space that I was still in the process of walking past. Unbelievable!
So many people are so focused on getting one car ahead in traffic or retrieving an item from the grocery store shelf or getting a parking space in some parking lot, or whatever the fuck they are going after, that they lose their humanity and common decency. Considering that my body is a delicate ecosystem, this kind of behavior is downright dangerous for me and encourages me to self-isolate, instead of risk going out in a world full of insensitive and inconsiderate people. Even if someone doesn’t actually touch me, I can feel their directed and/or forceful energy, and often my body responds as if I have been banged into.
Adding to this background the fact that my life was turned upside down by a hit and run car collision, a car driving at me just does not leave me feeling warm and fuzzy. Which all goes to say, I was left feeling really upset. What the fuck?! People can be such assholes.
When I saw this guy in the store, I went up to him and said, “You know, it’s not cool to continue driving at someone when they are passing in front of your car.” “Fuck off!” he said in the most growly way possible. “Excuse me?!” I responded. “What kind of a person are you? You shop at an organic market but you talk to someone like this?” “Get away from me,” he said, as he continued moving forward with his cart. I would not oblige. I formed a beak with my right hand and drove it toward his eyes, saying, “You were coming at me like this, and you wouldn’t stop.” “Get away from me,” he said again. “Oh you don’t like it?” I asked, repeating the gesture, as I added, “This is what you were doing to me, but with one ton of steel!”
When I turned away, I realized that my adrenaline was going full blast. I was shaking. I felt very pleased with what I had done, especially considering that I had not given mind to “making a scene.”
Later, I was going down an aisle and about to pass the man and his cart. I made a grand, melodramatic gesture for him to go first. “Oh please,” I said, “go in front of me. I wouldn’t want to pass in front of your cart.” As he passed, I took whatever item I was holding – some raw crackers, methinks — and dive-bombed his eyes with it, saying something like, “Excuse me, I need to park.”
That was fun. I giggled as I continued shopping.
My response 1) turned the energy around, giving this guy a taste of his own medicine and, in doing so, 2) transferred the negative energy he had created – ousting it from inside me and redirecting it back into him; 3) did not let him get away from me, thereby forcing him to face his actions and face consequences for his behavior – the kind of behavior that people routinely get away with.
I was on my way out of town after leaving the store, so I sat in my car for a while, eating one of the items I had purchased, to fuel up for my trip. While eating, I called a friend and shared my delight over my latest mischief. As we spoke, I saw the same man round the parking lot corner in his SUV, just as a woman started walking across the parking lot in front of me. “Oh oh, let’s see if he learned his lesson,” I cooed to my friend.
The man stopped about, oh, an ocean away from the woman, letting her cross with more space than anyone could possibly desire. “Oh yeah!” I shouted, deliriously happy. Impact.
Throughout my life, I have said and done things that we are taught not to say or do, in the interest of authentically expressing myself and calling people on their behaviors, instead of just bucking down and trudging on. Especially in the case of invisible disabilities, people need to be more aware. In addition, people need to just have more courtesy, as a general principle. When someone is crossing the street, do not inch up to that person with your car, assuming you have stopped in the first place. When about to pass someone in a cramped space, stand back and let that person go. When someone says they have a sensitivity, honor it. Don’t deliberately do what you know will hurt them.
Well. I feel much better now, having written about the experience. And that’s the power of the pen. Not only can it change the way other people think, but it can change the way you yourself feel.
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