Those of us with chronic pain or other chronic illness may find ourselves wandering through life feeling dumfounded: How did I get here? This is not who I am or who I was supposed to be or where I was heading. Who am I now? How do I integrate these different pieces of my identity? What is authentically me? How do I accept and incorporate my condition without letting it define me? On the occasion of tsha b’ab, a Jewish memorial day, I approach these questions through telling the story of a national, religious, cultural, historic, and ultimately, personal journey.

Two thousand, five hundred, and ninety five years ago to this day, Babylonian armies destroyed the holy temple in Jerusalem, ransacked the ancient Kingdom of Judah, murdered scores of people throughout the kingdom (known as “Jews” – ie, the people of Judah), and hauled off scores more as captives, to the land of Babylon.

Seven years ago, around this very day, I stood on the edge of the land that once was a small city in that ancient Kingdom of Judah – on the exact spot where the city guard looked from his tower into the distance and saw flames of light extinguishing in surrounding towns. The ensuing darkness signaled that the Babylonians were approaching and the end was near.

A chill went through my spine.

While the rest of the people on the tour continued walking around the ancient city ruins, I stayed glued to that spot, feeling the warm breeze on my face, looking out into the expansive distance, imagining the terror that must have shot through the city people as they awaited their fates.

Their end was my beginning: The beginning of an exiled people in Babylon, who over the millennia transformed into a thriving, vibrant community — writing the authoritative Babylonian Talmud, launching the first ever Jewish learning institutions (yeshivas), and otherwise developing a rich and unique culture full of stories, music, language, spiritual teachings, architecture, prayers, dance, scholarly works, art, and religious rituals.

After nearly three millennia, my ancestors were sent packing once again: In 1950, my grandparents and father were among the 100,000 Jewish refugees from Baghdad alone – forced to flee after a surge of anti-Jewish violence throughout the Middle East and North Africa. Most of these refugees, including my family, were absorbed by the modern state of Israel. As in hokey-pokey style: One foot in, one foot out.

While my grandparents, six aunts and one surviving uncle remained in Israel, my father continued his migration to Massachusetts, where he chose to go to graduate school.  There he met my mother, who had been on her way to New York from Colorado. When she’d gotten to the Massachusetts/New York fork in the interstate, however, she spontaneously decided to go north instead.

Together, they raised my sister and me as headstrong Iraqi Jews in Canada and California — teaching us the songs, prayers, religious rituals, food, personal and communal stories, Hebrew pronunciation, and a little of the language of Iraqi Jews.  (I can say the important things in Judeo- Arabic – you know, like, “watermelon,” “barefoot,” “hammer,” and “my stomach hurts.”)

I went on to disseminate this knowledge across the world — pioneering the Jewish Multiculturalism movement in the United States, performing Middle Eastern and North African Jewish music in cities throughout North America, Europe, and Israel, compiling and editing the first anthology about Middle Eastern and North African Jewish women’s identity, and on and on and on.

Still, I could not and cannot re-create Jewish life in Baghdad. I am unable to undo the violence and destruction that my community faced. I am unable to bring back everything that was lost in the upheaval and uprooting. I am unable, in short, to resurrect the Iraqi Jewish community — to bring it back to life as it once was, in bold Technicolor.

What’s worse, everyone who was there is now dying.  And what’s worse than that, I am isolated from so many of these people. I am an exile within a family and community of exiles. So where does that leave me?  Who am I?  And who will I be when the older generation passes, and I step into their place?

Today is called thsa b’ab. Throughout the Jewish community around the world, it is a memorial day — a day of fasting, prayer, and commemoration.  It is a dark day, when people read paradoxically depressing yet triumphant stories about Jews who chose death over forced conversion, even when they had to watch their own children be killed before them. Today is also considered a day of terrible luck, replete with trembling fear, because the temple was destroyed not once, but twice on this day (the second time by the Romans, exactly 656 years later).    

I’ve always struggled with what exactly to do on this day. We are guided to actively induce a sense of grief and despair, so as to honor those before us and to remember being cast from freedom in our own land to captivity in someone else’s. But how, I wondered as a 14 year old in San Francisco, was I to do that, and what use was it anyhow? Actively feeling miserable and scared of moving all day long, because lordy knows what might go wrong next?

Several years ago, I read an article by someone who suggested that this day actually should be one of celebration and honor: Yes, the temple was destroyed. Yes the kingdom was ransacked. Yes the people were hauled off as exiles. But look what’s come of it: Vibrant Jewish life around the world – the first exile reaching the far corners of the Middle East, North Africa, and Central, East, and South Asia and the second exile stretching across all of Europe and the Americas.

As a Jewish multicultural educator, that spin resonated with me. Plus it was just so positive, so full of life and the pulsing rhythm of eternal change and transformation. It celebrated Jewish resilience and creativity and adaptation as a people, always surviving, always thriving, always pushing forward into new horizons.

And so it is with me. Iraqi Jewish life is now gone, as Judean Jewish life once was gone as well. What stands in its place, in my shoes, is a vibrant, creative, pulsating mix of East and West, old school and punk rock, religious and secular, traditional and feminist. I am a living, breathing, invigorating 21^st century incarnation of all who came before me. 

Just like my ancestors, I am the beginning of something new. And it is something brilliant.

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The issue is surprisingly similar to that with multiculturalism: We must create an environment that promotes a sense of active invitation and safety, in order for people to feel compelled to share their authentic selves – whether their identity or their health care needs.

As a Jewish multicultural educator, I repeatedly have found that when a class reflects nothing about Jewish heritage from Africa, the Middle East, Southeast Asia, Latin America…the children from those backgrounds for the most part will not even mention having that identity. In a Euro-centric Jewish world, where non-European heritage is so often dismissed or ridiculed or otherwise invalidated, it does not feel safe to speak up, unless an educator/leaders actively takes steps to counter that common negative, shaming message.

When the history and heritage of non-European Jewish communities is respectfully and authentically integrated in a meaningful way, children from those communities will gush with pride about their ethnicity. Even the children who were wallflowers immediately will become actively involved in classroom discussions. I have seen it repeatedly.

Similarly, if patients are in an environment where their requests for care –  whether proper hygienic practice or gentle touch – are met with eye-rolling, ridiculing, dismissive remarks, or other verbal/physical language indicating invalidation – we will be that much more hesitant to speak up about getting our needs met the next time.

And so, for those of us chronically at the doctor’s office — where we have to deal with the backlash over and over and over again – our assertiveness and self-advocacy may be slowly but deeply worn down over time. We’re already aren’t in tip-top form to begin with – given the reason we’re at the doctor’s office in the first place and the chain reaction of depletion that condition has created in our lives.

That said, we also may get feistier, more outspoken, and more demanding over time. After being traumatized and retraumatized by doctors and bodyworkers, I’ve become a hard-headed self-advocate, beginning with my process of finding the right health care practitioner. Even so, even as self-aware and self-empowered as I am now, I still can slip into submission when I’m feeling exhausted and the practitioner is not being supportive.

So as patients, it’s imperative for us to garner as much love, support, and advocacy as we can muster from our friends and family, so that we can be assertive with health care practitioners, regardless of how they approach us. As health care practitioners, it’s imperative that you become vigilant about creating an atmosphere of genuine care, encouragement, and yes, even love for your patients.

The more health care practitioners create a space of safety and invitation, the more patients will feel comfortable asserting ourselves and the less crap we’ll tolerate from other practitioners. To the contrary, every time you do something to undermine our sense of safety and trust, you will make it that much more difficult for us to speak up and speak out the next time around with someone else.

Yes you have that much power. Use it wisely.

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Apparently I’m not the only one who could have bought a house with the money I have had to spend on uninsured complementary and alternative medicine — the only health care that works for my chronic pain condition. According to a recent article by the National Institute of Health, Americans spend 33.9 billion out of pocket expenses for CAM treatment. I look forward to the day that complementary and alternative medicine is covered by health insurance, especially because I’m spending $600 a month for it, and it basically provides me diddly.

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Here’s the letter I sent right after the MRI incident three years ago:

On Friday August 25, at 5:30 pm, I came in for an MRI at your facility. I have had several MRIs in the past, including at your facility, with no complications. This time, however, I received multiple shocks to my upper buttox/low back area. The first time, I was taken by surprise and was very frightened.

I yelled for the technician to stop, but realizing she didn’t hear me, flailed my legs around until she stopped the magnetic imaging process. She pulled me out of the machine, and I told her what happened. She said she didn’t know what it could be, that people only said they felt vibrations, but not shocks. She then put a towel underneath me, above the area where I was getting shocks, and sent me back into the machine.

She started off with a test run, but it was a different sound than the sound made in the four minute test to follow. The test run was fine, but as soon as the longer test started (with the very loud, quick noises), I began getting shocked again. Since it was muffled somewhat by the towel, I figured I’d try to endure it and get through at least the first four minutes.

But after a couple of minutes, my body began intensely spasming in the area  where I was getting shocked. I started to worry that the shocks may be more than an annoyance – that they may actually be dangerous to my health. So by around the third minute, I began flailing my legs again, to indicate I wanted to stop the test.

The technician next put a pillow under my back, to buffer the area that was getting shocked, and sent me back into the machine. I received very vivid, intense shocks and jerked my legs around again to be pulled out. I then told the technician that something is very wrong with the machine, and that I didn’t want to continue the test.

I also expressed concern about what was happening and asked why the machine was shocking me. She said she didn’t know and advised me to contact you on Monday, “to find out what happened. He knows everything about the machine,” she said, “He’ll know what it is.” She asked me if I was still in pain, and I informed her that I was fine — that the pain stopped when the shocks stopped.

By the time I had gathered my belongings and left the facilities, however, I felt sore in the area where I’d been shocked. In addition, as I biked home, I noticed feeling very strange throughout my body. By the time I got home, the pain around where I’d been shocked was intense, and I had to sit with an ice pack on that spot. In addition, my left ear felt a shallow/deadened sensation; my jaw felt tight; and I I felt mildly nauseous and slightly dizzy.

I was very frightened about what had happened to me. My mother called the facilities on my behalf and asked to speak with you. We were told the representative would try to reach you.

I called the doctor on call at the office of my primary care physician and told him the situation. He advised me that although he is not a specialist and couldn’t tell me exactly what had happened, electric currents run through the MRI machine; so I probably received mild level shocks that aggravated my system. He assured me that the symptoms would be temporary.

I received a call from the MRI technician shortly after. I explained that my mother and I had called to speak with you because I was very frightened and wanted some assurance. “I can assure you,” she said. I figured that since she’d initially said she didn’t know what had happened, she must have spoken with you or otherwise determined the cause of the shocks.

She then proceeded to assert that my symptoms were “definitely not from the MRI;” that I wasn’t shocked but that I simply “felt uncomfortable” during the test; that I have “lower lumbar problems that were obviously triggered by lying down;” and that the only reason she told me to call you on Monday was to “find out how I could be more comfortable the next time” I take the test. She then refused to contact you – despite my informing her that nothing like this had ever happened before, and that I was anxious and scared about the shocks my body had received.

The technician was obviously more concerned about covering her ass for a potential lawsuit than actually taking care of a patient. I was literally shocked by the MRI machine. I had the right to know why – what malfunction had happened in the machine, and how dangerous or benign those shocks were to my system.

Not only did the technician refuse to facilitate providing me that information, and not only did that leave me in a state of uncertainty over the weekend, but she proceeded to assert that what happened didn’t actually happen — that I was simply experiencing run-of-the-mill lower back pain. Her response was out of line and added insult to injury.

When I woke up the next morning, I had a headache; I was more naseous and dizzy than the night before; my jaw was even tighter; the sense of shallowness/deadness in my left ear was amplified; and I had pain in various places in my body where I either have never experienced pain or where I have not experienced pain for up to a year – such as my left ankle and my right thumb.

In addition, I had spasms and twitches all over my body – including the left side of my left breast. The whole area below my left breast felt weird, in fact, and when I checked my pulse, I found that my heart was beating about twice its normal rate. Though initially I only connected the local pain (in my back) to the shock incidents, in the morning I understood that those shocks must have set my entire nervous system on edge – thus the sudden, unusual symptoms throughout my entire body.

As per the doctor’s assessment, I hope these symptoms will eventually subside. Regardless, I deserve an honest answer about what happened. In addition, I expect the technician to be confronted about responding in an uncaring, undermining way to a patient who had just undergone a frightening experience and simply wanted to know what had happened to her.

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Three years ago, I went in for an MRI. I was electrocuted. I screamed for the technician to stop, but she couldn’t hear above the noise of the clicks and bangs. So flailed my legs around. The technician pulled me out, clearly irritated at me for disrupting the test. When I told her what was happening, she replied that it was impossible. She did, however, offer to put a folded towel beneath my lower back so that I wouldn’t feel the “discomfort.”

She put me back in again and started off with a few tester clicks and bangs, which did not shock me – as I reported to her through the microphone in the MRI. As soon as the real test began, however, I was electrocuted again. Repeatedly.

This time I didn’t yell. This time I didn’t flail my legs around. I stayed put. I waited for the four minute session to end. I did not want to irritate the technician. Instead I endured what was quite possibly the longest three minutes of my life, literally counting the seconds until it would be over. But then, one minute before the test was to end, my lower back started spasming violently, right where I was feeling the shocks. It occurred to me that I might not just be enduring four minutes of discomfort. I might actually be endangering myself.

So I flailed my legs again. The technician was as annoyed as I had feared, this time more so than before. Again she denied that the machine could possibly be shocking me. It must be something else, she insisted. Regardless, she put a pillow under my back, to buffer me more than the towel had done. She sent me back into the machine.

This time, I received very vivid, intense shocks. This time, I flailed my legs around to be pulled out. This time I told the technician that something was very wrong with the machine. This time I refused to continue the test.

But by then it was too late. Something was horribly wrong with my back, which was in excruciating pain. And it didn’t end there. For the next six months, my back went out completely, almost every day – which never had happened before the MRI. I was like a beached whale on my bed on a regular basis. Three years later, I am still recovering from the residual effects of pain and limited mobility.

Which begs the question: Why did I – an otherwise educated, intelligent, self-aware, outspoken, powerful, and assertive woman – not better advocate for myself? Why did I agree to go back into the machine? Why did I put my discomfort with the technician’s annoyance above and beyond my concern for my own safety?

Over the years, after speaking with many individuals who have chronic pain and other forms of chronic illness, I came to find I was not alone. It seems, in fact, more common than not for patients to defer to doctors and bodyworkers, even when the patients know that doing so is not in their interest. It’s a phenomenon I have come to call the “good patient syndrome,” caused by the following factors:

1.There is a power discrepancy in the health care hierarchy:

The practitioner is positioned as the authority figure and the patient as the compliant follower. This power discrepancy is reinforced through numerous medical symbols, social norms, and legal points of reference.

2. There is a stark reality that the life of the patient is literally in the hands of the health care practitioner.

It can be as dangerous as life-threatening for a patient to behave in any way that may undermine a doctor’s sense of team spirit with the patient. More often than not, the prerequisite for engendering that team spirit is submission to the doctor’s agenda.

3. There is a sense of trust that “doctor knows best.”

Most patients, especially newer patients, have little or no medical knowledge of their condition in particular or their bodies in general. They feel at a loss to be at the helm of their own health care, being that they have not gone to medical school. They are furthermore taught that doctors are the well-informed to make medical decisions for them, and that doctors have patient interests at heart, and that it is safe to follow a doctor’s lead.

4. Those with chronic conditions are usually overwhelmed.

Those churning through the medical system with a chronic condition are already overwhelmed with the number of doctor appointments they have to schedule and the number of health-care-related activities they have to do (like icing regularly or doing physical therapy or taking medications around the clock) in order to function. Tending to their health is a part-time or full-time job that comes on top of whatever other life obligations and basic needs they have – working, parenting, shopping, eating, sleeping…

In addition, those with a chronic condition usually have limited ability to work and are isolated from community — translating into limited financial and human resources and therefore a reality where chronic patients have to do more things themselves than others without their medical condition. What’s more, in the bodies of chronically ill patients, internal energy is physically depleted 24/7. Challenging a doctor is tantamount to risking having to find a new doctor. Starting again with another practitioner means adding to the time and energy that is already so scarce in the patient’s life.

5. Those with chronic conditions are often desperate.

Even if chronic patients have the good fortune of being insured, they usually are spinning through a managed care hell. They are not allowed to leave their current plan, because no other plan will take them. Meanwhile, there are a limited number of doctors available through their current plan. It is therefore a major risk to potentially alienate one’s current doctor. Not only might the patient run out of other options for health care providers, but the patient may be labeled a “problem patient,” meaning s/he will not be taken seriously or responded to appropriately by other practitioners in the network.

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