Cheb was recently diagnosed with Stage 4 stomach cancer. And like millions of Americans, he has no health insurance, so his life is in danger. It is appalling that so many wonderful people in the USA get afflicted with conditions – pain, cancer, you name it - that potentially bring their lives crashing down, simply because of our screwed value system in this country, leaving little or no social support. It makes me furious.

If you want to find out more about Cheb’s situation, visit the Cheb i Sabbah website.

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I am feeling overwhelmed, especially because I need to dedicate my time right now to making money — to tie me over during the weeks I’m recuperating, assuming I get surgery. So I’m officially asking for help: I am looking for someone who can organize all the information for me, in the following manner:

• Practitioner or method
• Website
• Contact info, if available
• Type of cancer treated
• Summary of approach to cancer treatment

That will help me narrow down what interests me and what doesn’t, which in turn will save me a whole lot of time and energy. In appreciation of your time and care, I will happily offer some freebie Dancing with Pain products – downloadable audio class and e-book.

Takers?

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Because the nodule is so big, I run the risk of it metastasizing to other parts of my body (Gd forbid!) if I do not get it out quick. Thyroid cancer, when surgically removed, seems to have a high success rate of never returning or spreading anywhere else in the body. But if left to its own devices, it can become brain and bone cancer. Which can lead to a painful death. That does not appeal to me.

The thing that really bugs me, is that apparently, despite being in 2011 and with all the gadgets and shit we have going on, there is no way to test the hurthle cells definitively without taking out the whole damn thyroid gland. Why is that? And what I want to know is whether there is a super advanced cancer center somewhere in the world that can determine whether these cells are cancerous or not, without taking out the whole damn gland.

Now here’s the other thing: I looked up hurthle cells on Wikipedia, and it says that they can either be cancerous or can be Hashimotos Thyroiditis – which apparently leads to hypothyroid type symptoms. My revered bodyworker/nutritionist has sworn for years that I must have some thyroid issue, because I have all kinds of symptoms that are in alignment with hypothyroidism. According to Wikipedia, I share the following symptoms with people who have hypothyroidism: I get super cold; I gain weight eating something as calorie-deprived as carrots; I am prone to high cholesterol (though it runs in my family too); and I had years of panic attacks in the middle of the night, sans panic.

The danger of removing the thyroid gland is that the surgery can cut the vocal nerve, which runs right near the gland. If one nerve is cut, you lose the ability to sing, the doctor says. If another nerve is cut (ie on the other side), you lose the ability to speak. You know, like, for the rest of your fucking life. Oh, did I mention that I’m a singer? Yeah. This bites.

So here’s my query to all of you patient-savvy smarty-smarty pants out there: What can I do to either definitively diagnose or completely eliminate this mo-fo nodule from my thyroid gland? Where do I need to go? What do I need to eat? What test do I need to take? Help!

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My dad sexually abused me in the name of being affectionate. It was always couched in something else, so that I felt like a total shit for being creeped out and having sexual feelings when he touched me. When I was 11 – ELEVEN, mind you! – I confronted both my parents about this issue. I remember sitting at the edge of my bed — the one with the Scratch & Sniff stickers over it – rocking back and forth, feeling/thinking, “Something is not right. Something is not right.”

I also clearly remember the GINORMOUS amount of courage it took to jump off the cliff – to get off that bed, walk into that den, sit my shaking little girl ass down, and tell my parents that when my dad touched me, I experienced sexual feelings. I felt so lucky that my parents didn’t hate me or banish me, but rather, that they explained it was my yeser harah (which according to Judaism is the evil inclination that everyone is born with), but that it was ok, and they loved me. I think they also threw in something about the Oedipal Complex. (More on that later.)

I walked away feeling like a horrible icky shameful child who was so lucky that her parents loved her despite the fact that she was so awful. I spent the rest of my childhood and teenage years cringing every cell in my body and/or feeling physical sensations of being penetrated by a penis, whenever my dad touched me, was in the room, or even drove his car up to the house. No surprise that I was totally checked out of my body and numb by the time I was 16.

From the vantage point of where I stand now, I hold true that everything in life is about energy. I had this awareness and understanding throughout my life but didn’t have the experience behind me to enable me to speak about it with a sense of power and authority — unintimidated by the goons who I knew stood ready to invalidate my experience and shoot me down.

After all, experience is defined by men, sex and therefore rape are defined by a penis (ie, if there was no penis in the vagina, “nothing” happened), and sexual abuse is defined as involving “sexual” parts – because, hey, we all know it is patently impossible for sexual energy to flow through anything but the vagina, breasts, or penis, right? Maaaaybe the ass. Maybe.

In reality, any body part can be imbued with any energy. Take a moment to reflect on the sensation of being touched — by a business acquaintance, a child, a friend, a lover, or an adversary. In each situation, the physical touch may be exactly the same, like a hand resting on your arm, but chances are the sensation will feel very different. That difference is energy. We may not be able to see or touch it, but we all can feel it.

The problem with sneaky sexual abuse is that when you can’t point to a body part and say, “Hey! That’s not supposed to be here doing that!” then it’s really tough to get validation for having experienced the violence, much less to elicit accountability for the behavior.

So when sexual abuse is energetic, there is an additional layer of the mind-fuck, the psychological abuse: The victim can end up feeling crazy and evil – especially if that abuse is couched in behaviors that are supposed to be affectionate, like hugs, hair-petting, or kisses on the neck, as in my case. I was patently not allowed to say I did not want those things, so I suffered through them. When I was 14 and finally had the courage to refuse a hug (nicely), my father punished me: He withdrew all affection and refused to speak to me or interact with me in any way for three full days, and he moped around the house like a wounded animal. I felt horrible.

Not only was I never allowed to not want, much less refuse these things, but I specifically was supposed to be grateful for them. After all, my esteemed father was bestowing affection on me!

The sexual abuse also manifested in being forbidden any privacy whatsoever: I was not allowed to lock the door to any room, including the bathroom, because doing so would be considered an affront against my dad. I could not even close a door when my father was passing, for the same reason. My dad had carte blanche to walk into whatever room he wanted, whenever he wanted — whether I was on the toilet, getting dressed in my room, whatever.

I took my parents to therapy from the time I was 16-21, and I remember my father having an over-the-top shit fit when I said I wanted him to knock before coming into my room or the bathroom. Imagine my audacity! All hell broke loose.

But still, even the therapist claimed that my sexual feelings were the result of the Oedipal Complex. Little did I know then that the Oedipal Complex was developed in the interest of protecting wealthy men who sought Freud’s services: Originally, Freud reported that there were rampant incidents of incest going on. But when that honest reporting threatened his practice, he altered his findings to indicate that in fact the little girls were having sexual fantasies of their fathers — a perfectly normal occurrence, as evidenced by the Greek mythology (emphasis on “myth”) of Oedpius.

You know how when you finally get a black and white diagnosis for a mystery illness, you’re totally relieved, dare I say ecstatic, because although you may be informed that the disease is life-threatening, at least you finally know you’re not fucking crazy? Finally, finally¸ people will believe your sorry ass, right?

Similarly, when I was in my early 20s, I felt grateful that my dad straight-up molested me when I was 14 years old. Of course, my dad being my dad, the abuse was still couched in the guise of being a nurturing, loving father, but still, the behavior was more obvious in that incident. So I could point to it, hang on to it for dear life, say, see, I wasn’t crazy when I felt violated by his hugs. I could use it to resolve the distress of having the experience, feelings, and post-traumatic stress of an incest survivor but not having the textbook confirmation or validation that anything had happened.

As a child, I was denied nurturing in many ways. Among other things, I wasn’t dried off much after a bath or shower, back in the days when I wanted to be. Fast forward about a decade, and suddenly, out of nowhere, when I stepped out of the shower as a fully-developed 14 year old, dripping wet, my dad walked into the bathroom and, with weird energy and without looking in my eyes, quietly started drying off my naked body. I was paralyzed, acutely aware I was not allowed to move or protest.

And because it was so twisty – because I was so starved for healthy affection and attention as a child; because I didn’t get those things back then; and because my father was acting in the name of “love,” doing something that purportedly was an act of nurturance, I felt obligated to thank him after feeling utterly violated.

I was abjectly humiliated, and I felt I had to fucking thank him.

There were other things too, also more blatant than the hugs, hair-petting, and kisses —  like the time during Hanukkah when I was 16, and  my dad cornered me in the tiny hallway, telling me how he wanted to buy me lingerie, and repeating in different ways, with this really weird look on his face, how it would look so nice on me. I kept saying I didn’t want it. He kept insisting. I kept trying to get away from him. The door was locked, he was in front of it and right up in my face. It was absolutely horrible. I was shaking.

My dad also was abusive in ways other than sexual. Despite everything, I did absolutely everything in my power to heal my relationship with him. First, I went to therapy with him for five years, as indicated above. After the sessions, my dad would pull the car to the side of the road and rage at me. When I would cover my ears, because he was screaming into them, causing me horrible pain, he would yell at me to take my hands off my ears. Here I was taking him to therapy because I loved him and wanted to heal our relationship, and he responded not by thanking me, but by hurting me and forcing me to be an active participant in the pain and suffering.

Long story short, at the end of the five years, I came to understand that my dad was not going to change. Rather than taking three steps forward and two steps back, he would take a couple steps forward, a couple step back. It would always seem he was going somewhere, then he would revert back to exactly where he started.

When I was 21, I left home and cut off contact with my dad. I dove into emotional and spiritual healing with a gusto.

When I was 24, I wrote my father a letter that was nearly 50 pages, single spaced, typed, confronting him on all the abuse. For those of you who see confrontation as something negative, consider the fact that nothing can be healed unless and until it is first acknowledged and dealt with. I got back the following response in a 1-page letter: “I’m sorry you feel I sexually abused you, when in fact I did not.” Which was basically a regurgitation of the narrative I’d been fed throughout my childhood – ie, a spin on the all-in-my-head scenario.

After that, I cut off all contact with my dad until my late 20s. Then I spent the next decade trying to reconcile with my dad through letters. I even started calling him, trying to find safe ways of interacting, like singing holy day songs from Iraq. One thing my dad was stellar at was teaching me all the songs and prayers of the Iraqi Jewish tradition. I really missed being able to share that with him, and I was so happy to hear my dad sing again! And it felt like coming home to hear his accent. It’s weird having an exclusively Iraqi Jewish identity but no contact with the parent who is the only Iraqi Jew in the family.

But every time I would make an overture to my dad, he would pull twisty abusive shit. So the un-relationship kept hobbling along like that for years: I’d try to find a safe way of interacting; he would screw it up. I’d pull back and stop calling/emailing. I’d try again, he would screw it up again. I’d pull back again.

It was this gaping wound in my life that just would not heal.

Fast forward to January 2011. I received an email that my father was in the hospital with pneumonia. By then, I was living in the same city as he. True, I took some time to ground myself, before rushing to his side, but I showed up within a few hours of getting the email. I brought him all kinds of things I knew he would love, to brighten up the hospital room – my wood towlee (backgammon) set from Jerusalem; one of the rimonim (silver tassles) from the kis Eliyahu hanabee (Chair of Elijah), a poster of the Iraqi Jewish rabbis, a brightly-colored shadai (ceramic hand of Gd), and a couple of colorful scarves, along with homemade organic vegan food that I’d cooked for him before arriving.

I felt uncomfortable seeing my dad with all the people in his room, being that I hadn’t seen him for two decades (except twice accidentally, when I saw him but he didn’t see me, and once when my mom was in the hospital) so I kept going in and out until they left. Actually, my mom (who came with me for moral support) eventually requested that my dad’s girlfriend leave the room so that I have some time alone with him. The girlfriend just didn’t seem to take notice of what was going on, so she needed some direct instruction. Because of course, my dad could only partner with someone who would be equally clueless about people’s boundaries and space needs.

Anyhow, I was blown away by what happened next: My dad took my hand and said, “I am so sorry for what you’ve been through,” which is the closest it’s ever gotten to, “I’m sorry for what I’ve done to you.” He then told me that shortly before coming down with pneumonia, he did something for the first time: He took one of my letters to a therapist and read it with her. The therapist asked him, “What do you think she is saying here?” and, where my letter called my dad on his behaviors, the therapist asked him, “What did you do, and why did you do it?”

“I am so sorry I didn’t take your letters to a therapist before,” he said. “I was an idiot. You sent me letters full of love, and I can’t believe the things I wrote back to you. They were awful. I was stupid. I regret all the years we have lost as a result…You know, I nearly didn’t make it. I’ve been in the hospital for several days, and a few days ago, they could not get my blood pressure up to where it needed to be for me to live. And all I could think of was you and how I had lost you. If I make it out of here alive, I am going to go to the therapist and straighten myself out. I don’t care how much money it takes. I’m going to take all your letters and do it.”

I, of course, was bawling my eyes out.

“You are a genius,” my dad continued. “I didn’t ‘see’ you when you were a child, but you always have been a genius. You are a very unusual person. I want to get behind you, so that you can do your genius thing without worrying about surviving. I want to get you a house. I want to pay your bills. At least take the pressure off you.”

Five months before, my life had come crashing to the ground: I had poured all of my resources, every last dime, into the launch of Dancing with Pain. Just weeks after the company launch, I sustained a bad auditory injury that left me severely disabled in my hearing. I had to wear earplugs while cracking eggs. Every sound but the mildest sent bolts of nerve pain through my ears and head. I could barely function.

Just when my company had to sustain momentum, it came to a grinding halt. In addition, due to the circumstances surrounding the injury, I had to move from my apartment in LA. I chose an apartment in Sacramento which seemed amazingly quiet, but ended up having tenants who played basketball with their trash – meaning there were unpredictable loud bangs all day and night long, causing horrific pain. The landlord was unwilling to accommodate me with a simple sign asking people to dispose of trash more quietly, so within two months, I had to move again.

All the money I had gotten from the company launch was by then depleted. Meanwhile, Dancing with Pain was not making a dime. I had a very part time job, but it was far from enough to survive on. I was panicked. In addition, while the dumpster in the new apartment was not an issue, it proved to have other hidden noises – regular lawn mowing, carpet cleaning, leaf blowing, and tree pruning, not to mention the general maintenance banging for miscellaneous repairs. I was in hell. And utterly broke. And stuck in a seven month lease.

Then, two weeks after moving to that second apartment in Sacramento, I was informed I may have thyroid cancer. I opted to radically alter my diet – going hard core organic vegan and then some, overnight. In January I sustained an infection and was prescribed an antibiotic that caused a neurological episode where I nearly collapsed on the bike trail at dusk, could not communicate where I was, and could not even remember how to use a phone. I managed to force my brain to work by sheer willpower, and I made it home.

As it turned out, the nurse practitioner had failed to advise me that the antibiotic had side effects like meningitis. My brain was fucked up for two full weeks after – I kept feeling as if I went to access a folder that I knew had information, but the folder kept being empty. I also suffered from headaches, the sum total of which left me bedridden and unable to function.

One day after I felt well enough to leave my house, I got the email about my dad. Without blinking, I went to be by my father’s side.

Given the financial devastation I was going through at the time, my father’s assurance of support was tantamount to someone throwing me a life raft. And given that my dad’s use of money had been a big wound over the years – he used it to control, manipulate, and dominate people – it felt so amazing that he just wanted to fork it over with no demands except that I would do what I was made to do in this world.

I was walking on air. My mom, however, advised caution. And for good reason, it turned out.

Just a couple of weeks after being in the hospital, my dad became my dad again. I could not just say I needed a certain amount of money and get a clean answer about whether or not he had it. I was required to itemize every amount, with the promise of all of it being paid. Then I was told that he only had $100. Then he wanted to take me out for coffee. And kept trying to buy me things I did not need – a glass cup set with a tray, a French Press coffee maker. And then when we talked, he discussed how he would continue seeing this therapist “as long as he could, depending on Medicare,” whereas before he was adamant about how he was going to go every week, no matter what it cost, so that we could have a healthy relationship.

Then my dad asked how much gas was in my car and convinced me to go with him to the gas station. (I’d been driving around with the gauge on empty, praying to make it to each destination, because I did not have the money to fill it even a bit). After his cajoling, I agreed. But when we got to the station, he pulled over to the side of the road, motioned for me to do the same, informed me that there was a cheaper station down the road, and insisted that I follow him to it. I really did not want to, and I was like, fuck this, but felt I was already “in it,” so I would just ride it out to the end. Turned out the gas station was clear across town. My dad saved $0.50. Which apparently, at the end of the day, is what our relationship is worth to him, becuase he lost me again as a result.

I grew up with my dad saying he didn’t have money for a blow dryer, but then suddenly having hundreds or thousands of dollars for what he wanted to buy. I, meanwhile, with my long thick hair, always had to sit in front of the heater for an hour after showering, in the attempt to dry my hair. I was constantly sick, both because my hair was not properly dried and because we supposedly didn’t have money to heat the house. So we used space heaters in some rooms, while others were freezing. I was constantly running through different temperature zones. And I had flimsy clothing bought from thrift stores, when meanwhile we lived in a mansion.

Long story short, my dad always acted like he was impoverished, when it turns out he may have been a millionaire. To this day I’m not sure what he did or did not have. When he was crying “broke” about four years ago, he subsequently bought a $350,000 house, then lost $750,000 in the bank crash. You know, with two houses and who knows how many additional assets to spare.

After my dad started jerking me around again with his money control issues, I pulled back. It happened after the night I was preparing him a care package. He still was struggling with pneumonia. I made him fresh organic food and gathered together all my books on healing. I was going to bring them to him as a gift. I also had been sending him via email lots of information about natural methods for healing.

So there I was, wrapping everything up, when I was like, wait a minute. What the fuck! I just got an eviction notice; my phone was turned off three times; the energy company is threatening to turn off my power; I may have cancer; and I’m handing over books that my father easily can afford (but I knew would never get for himself) – books that I need for my own fucking healing? I felt exasperated.

I chose a couple of books and CDs that I didn’t really need, kept the dinner for myself, and left the moderated care package on my father’s doorstep. Then I emailed my father a four page letter about his behaviors around money and how hurtful they are. “You are not ready for a relationship with me,” I concluded. “You just hurt me and hurt me and hurt me.” I asked him to take the letter to his therapist. I don’t know if he ever did, or if he ever responded. I know he didn’t respond for a few weeks, but after that, I had to create a filter to delete all my father’s emails without my reading them. Because even seeing his name show up in my inbox was sending me down the rabbit hole.

Meanwhile, over the coming weeks, there were a few incidents where I had a bad feeling; I checked in with myself about what it might be; and, feeling it might be my dad, I called my mom to see if he was OK. Each time, something either had just happened or happened right after I called. Each time, my dad had some emergency but refused to properly take care of himself (which is apparently how he ended up in the hospital with pneumonia – he had been coughing badly for two weeks straight but had refused to see a doctor.)

As part of my second intervention, I insisted that my father get his medical followup sooner than scheduled. He still had fluid in his lungs, and he was not being seen for another month. As it turned out, my dad was terrified of the pain involved in removing fluids. I told him that there were all kinds of pharma for pain and anxiety, and expressed that it might be life-or-death for him to be seen sooner. I also offered to call the doctor on his behalf, because at this point in my life, I’m a pro at bossing doctors around when they misbehave. After a few rounds of offering to call the doctors for him, my dad had me convinced that he was fine doing it himself. “OK,” I said, “But let me know if you change your mind. I’m happy to help.”

Over the remainder of the weekend, I decided that I would offer to take my dad to the procedure and hold his hand through it (and give him energy healing, though I would not tell him that), despite the angst my dad had put me through. But then on Monday, I got an email from my dad indicating that he would like me to call his doctor for him as a paid service. He went on and on for a full paragraph about how he would insist on the rate I charged my clients – how he absolutely would refuse any special discounts.

I felt sick. Yet again, my dad clearly had the money to help me but was refusing to just fucking offer it to me like a normal caring person. Instead, everything had to be weird and twisty and somehow making him out to be a hero and sucking me into some dysfunctional dynamic he created. So I wrote back a very terse reply, advising my father of the different drugs he could take to manage the pain and anxiety of the procedure, and completely ignoring the rest of his email.

Some time after that, I had a bad feeling about my dad again and called my mom to check in. As it turned out, my dad had symptoms that scared him, so he called his doctor – who advised my dad that he may be having a stroke and needed to go to the emergency room immediately. Instead of following the doctor’s advice, my dad emailed everyone in his circle, telling them that he might be having a stroke but that he was staying home. This is totally in character with my dad. Play victim, make everyone else do the rescue work, while being a pain in the ass.

I asked my mom to call my dad and make him go to the emergency room. She tried. It didn’t work. I then asked her to make him call the ambulance. No dice. Then I called him myself. I didn’t have his address (my cell phone had disappeared, and it had his information in it.) So I sweetly and innocently asked him, “Hi Daddy, what’s your address?” He gave it to me. “Good,” I said, switching tones once I got the information. “I’m calling the ambulance now.” He protested. I spelled out for him that he might be about to croak and informed him the matter was not up for discussion. I called the ambulance. Fortunately, as it turned out, he was not having a stroke.

That was the last I interacted with my dad until last month. I was desperate to get rid of my storage in Israel, but still living hand to mouth, not always making it to the mouth, so I couldn’t afford the $1000 or so it would cost to ship internationally the few boxes I wanted to keep. There were some additional complications – some items needed to be sifted through, and my friends didn’t want to do it in the storage unit, because it was crazy stuffy and hot in there. So, cringing, I emailed my dad and asked if I could have the boxes taken to his Tel Aviv apartment for just a couple of days, so that my friends could go through it.

Of course, the simple request ended up becoming a means for manipulating me, and became super complicated. So I said thanks but no thanks. Meanwhile, my dad had offered to pay the costs of shipping, through one of my aunts in Israel, and to also cover the cost of the additional months it would take to arrange everything, given the complications. I thanked him for that.

But the day before my biopsy, I got a call from my aunt informing me that she was going to sell her gold to pay for the cost of the shipping. She is a widow living on fixed income. Apparently my dad had changed his tune again. While the arrangement was that she would cover the costs, and he would pay her back, apparently the deal is now off. I’m assuming it’s punishment for my not being in touch with him over the past few months. In other words, my father is now punishing me for traumatizing me and for me, as a result, needing to pull back to save my very life.

Healing requires mind-body-spirit alignment and elimination of stress wherever possible. It has been devastating to me not to be able to have a healthy relationship with my dad. I cannot, however, engage in the sick and twisted mind-fuck of trying to have a relationship with him, when I am fighting for my life. I was simply postponing being in touch with him until the cancer issue was under control. Not only has it been confirmed, today, that the nodule is most likely cancerous and in need of urgent surgery, but I also have come to feel – what the fuck?!

Why do I want a relationship with a man who made me miserable for much of my life, and who continues to manipulate and attempt to control me at every twist and turn? Who has three houses and lord knows how many assets, when I am fighting to keep a roof over my head? The second thought I had after being told the biopsy results was, “How am I going to survive if I have the setback of surgery?”

Throughout this time of struggle, I have been poignantly aware that there has been someone who could have – and should have – supported me. Someone who promised me that support, nonetheless. Someone I would have supported in a heartbeat if I had the funds and if he needed it, despite all the trauma he had inflicted on me.

And that knowledge – that there is that person who can help but won’t unless I play his games of domination and humiliation, who furthermore uses whatever power and influence he has to fuck with me and make my struggle that much more difficult, with me all the while heartbroken because I want nothing more in the world than to have a healthy relationship with him…Well, that is not love.

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Long story short, the Dan character has a mentor who helps Dan use the power of his mind to overcome the disability and in fact compete for a spot on the Olympic team.  At a couple of places along the way, Dan accuses a couple of people who don’t support his path, “You gave up on me!”

I resonated with those scenes. Because in my own journey, it was the primary theme of my experience with the medical system: They were perfectly happy to let my vibrant life go to hell. I was the model patient – doing everything in my power to take care of my body. And the very people who were supposed to help me heal in fact compromised my ability to heal – going so far as to actively get in my way.

My story is so fucking huge that it’s very hard for me to write pieces of it. But I keep not writing it, because I can’t write the whole damn thing in one sitting. So I’m working on getting myself to commit to writing snippets, even if they are not as thoroughly reported as I’d like. So here goes with this snippet:

The reason I ended up back in the United States, after having moved to Israel in 2002, is that when I came for a visit in 2006, I had complications following a very bad chiropractic adjustment a few months earlier. Doctors initially told me that my symptoms might indicate spinal chord damage – which was totally terrifying.

As it turned out, I did not have spinal chord damage. But I ended up in the hands of a doctor who actually listened to me, actually cared, and actually got me into physical therapy. Because my healing was my #1 priority in my life, I decided to stay in California – effectively giving up my very happy life in Israel. I remember telling my assistant, in fact, just a few months before I left, how I felt like I really belonged in Tel Aviv, how I was so very happy there, how everything felt perfect.

I gave it all up because I was dedicated to my healing.

Long story short, I was placed in a physical therapy program that initially was very helpful. The exercises they gave me, combined with my devotion to doing the work, enabled me to improve by leaps and bounds. One day, I was sharing with my physical therapists how excited I was that I was able to bike 18 miles and swim somewhere between ¼-1/2 mile in the same day.

They looked at each other as if I were crazy. You know, instead of congratulating or encouraging me. Wouldn’t you think that physical therapists would be totally exhilarated if their patient went from barely being able to lift her arm to being able to swim AND bike that much in one day? No. That’s all I got. A shared look as if I were crazy.

When your life has fallen to hell, and you’re doing everything in your power to heal yourself, and the people you’re going to for help with that healing do not encourage you, but rather discourage you – through words, looks, or actions – it can be debilitating. To the contrary, when practitioners offer love, faith, encouragement, and other forms of support, it can make the difference in one’s ability to heal.

I think a big part of why various healthcare practitioners gave up on me, before even giving me a shot, was that I was a young woman. Young women are still, today, in 2011, just expected to be pretty. Who cares if a young woman can no longer bike alone in the hills at 3 am or teach self-defense. That’s not a woman’s place anyhow.

I remember when I went to a physical therapist very early on in my quest to end the pain and disability I was experiencing. After I improved in my hip and therefore leg, the therapist experienced a marked difference in how firmly I was able to push against her hand.

“Wow,” she said. “When you were talking about how much strength you had lost, I didn’t take it seriously. I thought you were just complaining. But now that I feel your power, I understand what you meant and why you were upset.”

When I was a kid, my hearing was literally off the charts. So when I lost hearing, and was frustrated and upset by the loss, my experience was dismissed by doctors. Because my hearing was still above average. It was an outside-in approach to medicine, as opposed to taking me at face value and comparing my body to my body, instead of comparing it to someone else’s.

I used to press 300 pounds with my legs. But that’s not expected from, valued in, or encouraged in women. So when a woman loses that ability? Shrug of shoulders. No big loss. Similarly, when I suddenly went from being self-reliant to having to ask for help with lifting heavy things, nobody blinked. Nobody thought anything was wrong. Because we expect women to be weak anyhow.

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I think there are larger questions here, which require us to examine the very nature of the medical system: Why do we turn to external measures to validate a very real experience in our bodies? Why might doctors assume that we are nuts if they cannot see what we experience?

And why is the mind-body connection in particular, and mental illness in general, effectively demeaned and dismissed, if in fact a patient might be a bit on the “nutty” side? Why are there shame and blame attached to psychological problems that require psychotherapy but not, say, vision problems that require glasses?

Like all good little American patients, once upon a time I used to look to external measures to tell me about my body. If I felt something off in my body, which I live in every single day, 24/7, thank you very much, I would go to the doctor. If the doctor didn’t find anything, I would assume everything was OK and blow off whatever was going on.

Here’s what’s really happening when I go to the doctor and I don’t find something: I’m getting feedback that our human-built machines do not have the sophistication or capacity to detect the particular imbalance I am experiencing. Period.

Which is why holistic medicine is far more useful in most situations: Rather than looking at the body part that feels off, it looks at the entire lifestyle and evaluates how to optimize the healing – through diet, relationship, sleep habits, exercise, meditation, and so on.

I also question why doctors assume that if they cannot find something, we must be having psychological problems, and why that assertion (or behavior embodying that assertion) comes with so much emotional charge – ie, that we are bad, evil, vile people for possibly having psychological issues.

What if someone does have psychological issues? The moral imperative is to approach that individual with love and get that person treatment, just as one would hopefully do if someone needed crutches or braces or glasses or prosthetics or whatever.

Here is how I think doctors need to operate:

1. Listen with an open mind to our condition.
   Acknowledge there are as many different communication styles as there are people. Recognize that some people may be traumatized by previous doctor experiences and may therefore come off as being defensive, strange, or extremely anxious. Understand that one cannot possibly know the root of another person’s behavior, before it is revealed. Practice the spiritual discipline of compassion and humility – with the awareness that there is a marked power imbalance between a doctor and a patient.
2. Reflect on and share information about the various possibilities
   There are many different possible causes for a whole host of symptoms. Inform us about these possible causes, and share an educated guess about which cause it is – also revealing why you make that guess. Encourage us to write down this information and keep it as a reference document, as you go down the path exploring causes and treatments.
3. Inform us about and recommend treatment options
   There are numerous diagnostic tests available. Tell us which, if any, you recommend, and why. Be up front about all possible side effects of these tests.
4. Inform us about other resources available.
   Make sure you have a network of conventional, complementary, and alternative health practitioners, as well as a resource list of where we can find out more information about our possible condition and treatment options.
5. Let us make the decision about our bodies.
   If you are doing your job right, you are a teacher and consultant. You are not our boss, parent, Gd, or any other authority figure. Earn your respect instead of manipulating or coercing us into deference. Once you give us the information we need, let us make the decision of how to move forward; and be there to lovingly and intelligently support us on our path to wellness.

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Then she started asking me about the cause of pain. I said as congenially as possible that I didn’t want to get into it – “long story,” I said. She made some banter about it being a long story, then asked if I had lupus. “Invasive question,” I thought. “No,” I answered.

Here’s the thing: If at any point in our conversation, she had stopped initiating the back and forth, she would have noticed that I was not initiating conversation, other than along these scintillating lines: “My arm is hanging off the side of the bed;” “the towel is rolled up too thick. I need to stop to unravel it a little;” and “my neck is hurting. Can we take a break?”

But she kept initiating conversation, because – as she readily admitted herself – she wanted her work to be fun. So I was, against my will, turned from patient to companion. And she went on with the invasive questions: “Have you gotten a biopsy?” “No,” I replied. “Are you going to get one?” she pressed. “It depends on the results of this test,” I answered. “Oh, I get it,” she said, “if it remains the same, you’re not going to do it, right?” “Yes,” I answered. “I’m holistically oriented,” I added, partly feeling naturally drawn into the conversation and partly feeling pressure to be conversant.

“Oh, that’s OK,” she replied. “Um, gee, thanks for the approval,” I thought. She started telling me about her sister (or was it her cousin?) who went to a homeopath and loved it and swears by the homeopath, which is fine, and they have some interesting conversations about it, and it’s cool, because her sister (or cousin) is into both conventional and complementary medicine, and it’s good to have a balance, but sometimes they do not see eye to eye…

“Did you get a blood test for your thyroid?” she then asked. “Yes,” I answered. “Was it normal?” she asked. “Please stop asking me questions,” I thought. “I really need to stay still for this left nodule. I do not want to answer her question.” But I felt pressured. “Yes,” I answered.

So there I was the whole session, lying there, with a few different energies pulling at me. The first and predominant was, I really wanted to be quiet and still, so that the ultrasound would get accurate images. And I was trying not to be in pain, despite the fact that my head was uncomfortably far back so that my neck would protrude, and my arm was hanging over the side, thumb under my ass, as instructed, to keep the arm from splaying over.

At the same time I was on some level relating to this energy of this very friendly, upbeat person who was engaging me in conversation. I felt like I wanted to respond to the questions and comments before me, simply because they were before me. I also was feeling very annoyed that she kept talking to me, because I was there for the damn ultrasound and needed accurate images to help me figure out if I have cancer, thank you very much. And I was feeling pressure not to be “rude,” but to answer her banter. And I was feeling irritated by the invasive nature of her questions.

All at once.

I am realizing right now, and it’s making my whole body finally relax, 11 hours after the fact: This situation was very confusing. I felt confused. There were a whole lot of stimuli going on at the same time. And you know what? I did a damn good job of advocating for myself. Maybe not a perfect job, but a damn good one.

I let her know I was hypersensitive at the beginning. When we came in, she was talking kind of loud, so I told her that I had sensitive hearing. I specifically mentioned banging things and such, and she closed the door and said that would keep the noise out. But I figured that having laid the groundwork for a conversation about loud noises, I could tell her if her voice was too loud, without her taking it personally.

I asked for the triangular pillow (wedge, I think it’s called) to be put under my knees. I kept moving it around because I did not feel comfortable. I asked for her help. When she asked me to move to the side, I did not just move; I asked for her help, because I knew that with the wedge there, I would end up hurting myself and being in pain. She moved the wedge. I kept moving until I was sure I was situated in a way that I would not have pain. Or at least as little as possible.

Her touch was very gentle. I praised her on how she was doing with that and on letting me know about stuff ahead of time. Positive reinforcement is important to me emotionally/spiritually, as well as pragmatically. On the latter tip, when you let people know they are doing great, especially when you are high maintenance like a pain patient, it encourages them to continue being careful like that.

When the towel was causing problems – I kept moving my head because it was not comfortable, and I could never move it as far back as she wanted for my neck to protrude – I asked her to stop so that I could rearrange the towel. And when my neck started hurting beyond the point of discomfort, I asked for a break. She asked if I could wait a minute. I said yes. I knew I’d already crossed my threshold, but there was another factor to consider – wanting the test to come through accurately. So I waited a minute.

Then I sat up. I told her I needed a break. And I took it. Despite feeling a bit uncomfortable about taking as much time as I was taking. I took the break until I no longer needed to be taking a break.

So I really did advocate for myself. It’s just that there was so much stuff going on, both above and below the surface.

And then when she started spraying that bottle of liquid, and I didn’t know what it was, I wanted to yell no, to bolt, to ask what it was. While I didn’t do those things, I did take the immediate action of closing my eyes. Despite feeling uncomfortable about doing it because it would seem weird, over-reactive, etc. And she did say something about it. I don’t remember what she said, but I answered, “My eyes are very sensitive.” To which she replied, “Oh.”

And then I did ask her what it was, and that’s when I found out it was alcohol. Which truly shocked me. I thought it was water or some, I don’t know, conventional spray of some sort but not alcohol.

Well after something like this, when I was totally over-stimulated and confused, and ended up in pain all day (from my shoulder to my head, through my neck, ear, and eye, I was in bad pain the rest of the day, leading me to bed after the appointment), I can end up kicking myself. Because I want a retake. Because I notice where I could have better advocated for myself. Because I want that person to undo what she did, to behave better, act differently. I want a rewrite.

Of course, I can’t go back.

But I have been writing about it – this is my third blog post about it – not only to get the angries out, but to process it and share with the world the lessons from it. because every single interaction that I experience in the medical world is a microcosm of the dynamics in medicine today. I can honestly write pages about every wanky experience I have had in my, shall we say, career as a patient. Because in each dynamic are all kinds of social norms and expectations and power differences and so on.

Maybe, just maybe, this experience is opening the gateways for my writing about my journey through chronic pain hell and the medical establishment that was behind most of that hell.

But the bottom line of what I want to share in this post are these two things:

1. The onus must be on the doctors/bodyworkers.
   When a patient or client comes in for healthcare, she is in the vulnerable position, the child-like position. The practitioner is the one who is responsible for creating a safe and inviting space. Doing that requires a lot of consciousness and care and attention to details. It is a job. It does require effort. And everyone, from doctors to office managers to techs, need to be trained with this level of sensitivity. It is sacred service, with the patient at the center, and must be treated as such. The patient must not be the one who has to set the boundaries and be in the awkward position of saying, “you’re asking invasive questions” or “I can’t talk when you’re doing this test, because it might compromise the quality of the test.” Practitioners are there to do a job and must perform it excellently. We need to set the bar much, much higher.
2. The only time a practitioner should ask for personal information is when it is directly relevant to effective clinical treatment of the patient.
   The technician had no need to know about what activated the pain and sensitivity or what my choice was for how to deal with the nodules or what the results of my blood test were.
3. Dual realities are real.
   Just as gender dynamics can make for totally confusing and fucked up human interactions, so can the provider-practitioner relationship and medical context make for all kinds of wanky and conflicting dynamics. Just because I was going along with the banter and just because I was enjoying some aspects of this practitioner’s energy does not mean I would have chosen that kind of interaction or that it was appropriate. And the fact that I participated in it goes back to #1: The practitioners need to make a safe space where patients do not feel compelled, however blatantly or subtly, to participate in dynamics that do not feel comfortable for them. Just like teachers need to create a safe space for students and not misuse their power or access to information.

 Oh one final thing: My mom, Gd bless her, who is always there for me and steps to the plate, came with me to the appointment. Despite having a hard time walking. And after the appointment, when I left, the technician ended up coming down the hall and finding me. (I waited for her, but she didn’t show for nearly 10 minutes, so I left.) And when she saw me and my mom, with my mom in her walker, the technician said, “Who is taking care of whom here?”

It felt like an intrusive question. It also felt at the heart of the “but you don’t look sick” phenomenon. Sometimes those of us who look really strong on the outside have a lot going on inside and need help.

“It’s mutual,” I answered her, without skipping a beat.

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OK it’s funny, and I’m a fun-loving gal. The problem is that it set the tone of palling around. I mean, if I answer something like that in a very serious manner, well, first of all, it’s not my personality to be a kill-joy, and second of all, it would set an air of tension with this person in whose hands I was about to put my body.

It’s all jumbled and confusing, because on the one hand, she was a lovely woman – funny and seemingly caring – but at the same time, there was an undertone like I was making a big deal out of nothing. Purportedly because she could not see anything “wrong” with me.

She kept repeating this refrain, “everyone gets grey hair and wrinkles.” I couldn’t figure out what she was trying to say. Was she trying to put me at ease? Was she trying to give me unsolicited counseling on not making a mountain out of a molehill?

It’s happened before, and damn it, if it wasn’t so charged and triggering to write about stuff I’ve been through, and if a decade of my life wasn’t sopped up by surviving the fallout of what doctors did to my body, and if it weren’t more important to me to haul myself out of a pit and move forward than to write about the past, I could have written the detailed stories about what happened.

All I can say now is that it has happened numerous times before that a doctor or body worker was so busy having fun with me, my story, my pain, that I ended up injured. Because they were not present and paying attention to what they were there to do, and they were not approaching their job with the appropriate seriousness.

Yes it’s a serious job, taking care of people’s lives. And we put our bodies in your hands to do just that. I do not go to the medical center to pal around with people. I go to cafes, meetup groups, or friends’ houses to do that, thank you very much.

And this tech kept saying how you have to have fun on your job, how she doesn’t want to be in a position where she just goes, “Next!” I hear that. But here’s the thing: I’m there in the capacity of a patient. It’s very different than going to a bank teller for money or going to get my car repaired. My body is what’s being worked on, what’s being handled. Handle with care, as they say.

This technician kept chatting and saying funny things (which made me laugh out loud) and asking me questions (which I felt rude not to answer, at least very briefly) while the test was in progress – therefore making my throat move, and creating sounds that easily could have been picked up by the ultrasound. So now I may need to go back and get another test.

I am going to say something I have said or alluded to before, and I’m going to say it loud: It’s enough that patients are dealing with whatever crap landed us in the doctors’ offices. Trust me, we do not want to be there. We’d rather be swimming, dancing, playing with our kids, riding our bikes, having sex, watching the movies, or hiking the Himalayans.

Again: We have enough on our plates dealing with cancer scares, chronic pain, surgeries, or whatever the fuck else is going on in our lives – the reason we are there with you. Unless I initiate a joking tone, please do not joke around with me about the reason I’m there or my request for you to be super gentle with my body. I need you to be paying attention and thinking how to make the space safe for me, thinking about how to give me the test or treatment I need so that I get out of there safely, instead of with some new issue.

Examples:

My mom was in the hospital, predominantly unconscious, unable to speak, unable to open her mouth, bones broken throughout her body, lungs punctured, brain damaged, blood everywhere, neck in a brace, hands tied to either side of the bed. And what does her head doctor fucking say? What does her doctor fucking say? She gets a patronizing, sarcastic tone and tells my mom she did a really great job messing herself up.

Like the doctor is some fucking comedian and my mom is going to burst out laughing, “Yes, hah, you’re so right doc, I really did a doozy on myself, didn’t I? Gotta make that note to self not to fall FIVE FUCKING FEET on my head next time around.” >Insert playful punch to doctor’s arm.<

I wish I wrote down the exact words the doctor said, but again, these things are so devastating, so emotionally traumatizing and therefore charged to revisit, that I have not been able to write about most of them along the way. And trust me there are a million examples.

Gd bless my mom, who in her near-death state still had the presence of mind to scrunch up her face into a snarl from hell and shoot this woman a rage-induced look in the eyes that shouted, “If I had one move left in me, I would strangle the fuck out of you, you demented imbecile!” I was so proud. That’s my mama!

I was afraid to say anything, because my mom’s life was in the balance, and you don’t want to piss off the head doctor when you’re mom’s life is in the balance. But I had to say something. So I quietly requested, “Please do not talk to her like that.” The doctor turned her head and shot me a look like I was the asshole. She was clearly pissed at my audacity to challenge her authority.

The intimate – emphasis on intimate — insanity that goes on in the medical world is just shocking and appalling. And those words are too weak to describe what goes on. It’s one of the best protected secrets, like the rampant forms of child abuse in families. We persevere with this deluded notion of the Leave-It-to-Beaver family and happy-go-lucky healthcare team that is there to serve you and has your interests at heart.

Bullshit.

Have you seen the ads for nurses? The ads are not about attracting people who care and love and provide nurturance for people who are hanging between life and death. The ads tout how a nursing job is stable in a bad economy. How a nursing job will get you health insurance and a stable paycheck. What kind of nurses are those ads going to attract? The kind who end up killing people and not caring, that’s what kind.

And doctors? People go to medical school for a whole host of reasons. I’m willing to bet hard-earned cash that most medical students want to become doctors for any reason but helping people get well — prestige, money, parent-pleasing. They don’t give a rat’s ass about their patients.

And so we get healthcare practitioners on power trips and people who expect their patients to entertain them and all this bullshit.

In other words, get this: When our lives are falling apart; when we live in terrifying uncertainty about our very survival – whether physical, financial, or spiritual; when we do not know what’s going on with our bodies; when we are in our most vulnerable, weakest condition ever, this is when we go to put our bodies and lives in the hands of people who are there to make money, impress the parents, drive fancy cars, and have people obeying their socially-determined authority.

Talk about sick.

So back to the situation today, to recap:

Fun, lovely, very nice tech. Would pal around with her in a nanosecond in another environment.

Not appropriate to make jokes about my communicating something very serious – namely, that I have a hypersensitive body, which means a lot of things in terms of how you work with me, and which I might add took me about a decade to have the knowledge and courage to communicate.

Not appropriate to get your jollies off palling around with the patients. Get it from your colleagues and your friends. Or work in hi-tech, not bio-tech.

And do not, ever, not even once, spray in someone’s presence something as toxic as alcohol, especially if the person has indicated that she is hypersensitive.

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There are so many subtle, yet profoundly impacting, dynamics in the smallest of interactions in our health care system.  Admittedly, I don’t have the energy or time to read various blogs in the world of people with chronic health conditions, so I’m not sure how much this issue is talked about or not.  But I certainly don’t hear people talking about these minute details that make or break a healthcare experience.

I really want to connect with other people who are able to see these subtle nuances and recognize their power, people who recognize the entrenched socio-political dynamics at play in every doctor-patient interaction, people who have awareness of energy and how different energetic vibrations can radically alter an experience that is otherwise technically identical.

I woke up feeling very overwhelmed, as well as frustrated, sad, angry, and exhausted.  I have been dealing with so much — leading a disciplined life on many levels, in the interest of healing naturally from potentially cancerous nodules; developing Dancing with Pain® as a company; launching my media and public relations work for health and wellness practitioners and building that business; healing from a serious auditory injury that left me very disabled, and navigating through the fallout of that injury; dealing with the manipulation, psychological torment, and power games that my dad has imposed on me, under the pretense of wanting to help me; and on and on and on.

I’m very proud of myself how I’ve been taking everything in stride, focusing on what I can do, and doing it.  Living with chronic health conditions and opting for the path of natural healing, in a world that predominately fails to support that path financially or otherwise, is extremely challenging.  One of my personal goals is to always distinguish between the challenge and how I’m handling the challenge.  In other words, just because something is extremely difficult and overwhelming does not mean I am failing.  To the contrary, it means I am bold, defiant, and trusting my vision.

A word about singing one’s own praises: I think it’s important that we honor ourselves and express appreciation of ourselves, just as we do with others.  In this society, especially in female culture, it is socially acceptable and encouraged to put ourselves down in front of others, whereas it is scorned at to sing our own damn praises.  Why?

When I taught third grade, I had my kids circle up each day and go around, with each child saying what s/he loved about and was proud of in herself or himself.  In the beginning, my kids were very self-conscious, laughing and hiding their faces while they said things.  I asked them why they felt okay about putting themselves down but not about praising themselves in front of others, and we had a conversation about society’s screwy values. 

By the end of the class year, it was a natural and joyful exercise for the kids to go around and say what was awesome about themselves.  They did it with not a drop of shame, but rather with earnest self-respect and recognition.  Imagine a world where we patted ourselves on the back, privately and publicly, and we also made a point of expressing appreciation for what we admire and are grateful for in others as well.

As people living with chronic health conditions, I think it is even more imperative that we take the time to stop and recognize how strong, resilient, courageous, and full of life we are as we wake up every day and begin again.

As for my own endeavor to begin again, today I will dance, maybe do some guided imagery and art, and otherwise have a relaxed, gentle day, where I allow my body the time, space, and energy to heal from yesterday’s distressing experience. 

What will you do today to take care of your body, heart, and soul with love and appreciation for yourself?

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Today I had my third ultrasound. Each experience was different, because each technician was different. Same machine, same bed, same gooey stuff. Different outcome.

The first guy was the best. He was super gentle and kept asking how I was. The second woman was OK. She was responsive and told me what she was doing, but her pressure was a bit too firm.

The third one, today, was a fun-loving person, but honestly, save it for when I’m not getting a procedure done. She was asking me all kinds of personal questions, while I was splayed on the table in a flimsy nightgown, head back, neck pointing skyward, thumb tucked under my ass because she had me so far on the side that my arm and shoulder were hanging over the edge.

And isn’t it a bad idea to vibrate, ie, move, my neck when you need to get clear images of my nodules?

To her credit, she was amusing, and I did enjoy our banter, but not so much once I was lying down. I really wanted to just go to a meditative space, but she kept talking to me. Plus she was the only one who had me lying over the edge, and I don’t think it’s coincidence that this is the first time I ended up with bad pain after an ultrasound – from my shoulder up through my head.

When the procedure was done, I got off the table. I was standing on one side of the narrow bed, and she was standing on the other side, facing me, when she picked up a flimsy towel, put it between us, and began spraying something on it, spray facing my direction.

Although I felt uncomfortable about it, because doing anything “different” or seemingly “extreme” elicits comments, I closed my eyes. I know from experience that anything – even my biodegradable, super green household sprays – can set off eye problems (thanks to the doctor who dumped liquid nitrogen on the table between my legs, for funsies, when I got a wart removed about four years ago – splashing just s teeny tiny drop in my eye for a parting gift.)

I really wanted to dart away, but I thought it’s probably something harmless, it’s probably water, and I’m overreacting. That’s when I opened my eyes and asked her what it was.

Alcohol.

Fucking alcohol? Why the hell does someone need to put alcohol on a towel, much less fucking spray it, much less pointed towards someone who has not consented to anything having to do with alcohol? I didn’t even use the alcohol-drenched towel, so it was all for naught. Why would I want to bathe myself in alcohol and inhale the fumes?

I did not feel a sting, so I assumed the alcohol did not get into my eyes, but my right eye (the one messed up by aforementioned wart-removing doctor) has been increasingly fucked up since the incident. To the point that now I’m just in bed. There is this film thing happening, and my eye feels lazy. It feels like there’s a disconnect between my brain and my eye.

Anyhow, the point is that it’s really a crap shoot every time we go to the doctor’s office. And the more we go, the more we put our bodies, and therefore lives, at risk – in the hands of total strangers. As for my ultrasounds, I think I’ll try to see if I can schedule an appointment with the first guy and avoid the third practitioner. I might also write a letter to the medical center, advising them not to spray alcohol onto towels. Especially while facing the patient. Especially without first asking.

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