Downloadable Audio Class, “The Breakfast Mix,” Now Available for Purchase!

By: Loolwa Khazzoom, Founder, Dancing with Pain

August 31st, 2011 • Leave a Comment

It’s here! “The Breakfast Mix,” the first in the series of downloadable audio classes on dance for natural pain relief, is now available for purchase through our online store. (more…)

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Protected: Militant Wing of the Chronic Pain Movement

By: Loolwa Khazzoom, Founder, Dancing with Pain

February 24th, 2014 • Enter your password to view comments.

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Tell It Like It Is: The Medical System Is a Disaster

By: Loolwa Khazzoom, Founder, Dancing with Pain

December 24th, 2013 • 1 Comment

I recently went in for a routine eye exam, to get glasses, and came out with injured eyeballs and yet another doctor denying that anything happened, while I live the adverse impact every single day. The medical assistant numbed out my eyeballs with drops, then prodded my eyeballs several times per eye, with some pokey stick thingamadoogee. I had an immediate and severe reaction of sweating profusely, feeling nauseous, and nearly collapsing. My eyes have not been the same since.

I have had the gamut of sensations including burning, flashing light, excess mucus in my eyes, blurry vision, intense headaches, nerve pain, disorientation, confusion, pain and pressure when objects are less than an arm’s length from my eyes, the sense that my eyes are fuzzy, thick, and/or numb, and the sense that I cannot, no matter how hard I try, access the outer world.

It’s like my nerves or neurons are firing from behind my eyeballs but just not getting through. It is as if I walked the earth with bare feet my whole life, then suddenly had shoes put on them. I feel blind. I can see, I can point to whatever object you want me to, but the sensation is that I am blind. Similarly, if one walked barefoot all her life but then had shoes put on, she could feel the earth below, in a way, but not really. Not the way she could with her bare feet touching the dirt. Her feet would feel “blind” with shoes on.

In addition, shortly after this incident, I began having trouble accessing information in my brain. Words are suddenly absent, where they flew through my mind at lightning speed before. When I needed an exact word to describe an exact emotion or sentiment, it was there. Bam! Now it’s as if I am grasping, searching, looking for that word, knowing it is in the dark room somewhere with me, but I just cannot find or access it.

There is a laundry list of consequences that the doctor will never have to deal with but that I will: First, I have lost many work hours, which has translated into lost income, during a period of my life that I need to pay thousands and thousands of dollars a month, in out of pocket medical expenses for self-healing from cancer.

Second, I have had tremendous anxiety, fear, and uncertainty about my future, as a result of all the pain and vision problems in my eyes. How long will it last? Will I ever return to normal? Will I ever be able to work as quickly and efficiently as I used to? Will I always struggle, from here on out, looking at the computer screen? It is as if, in the words of chronic pain author Paula Kamen, I am driving with the parking brake on.

Third, I have had to deal with the same-old-same-old, infuriating denial of the medical system, when I reported what happened – simply in the interest of getting my eyes examined and being guided on what drops to use.

On this note, up ahead I will have to go through the struggle of “proving” that something happened, using the very limited conventional medicine machinery, in the interest of receiving compensation for body work and/or lost work hours. I will have to justify that certain forms of body work (like the massage session with a Shamanic healer) in fact greatly helped eliminate or reduce the symptoms, despite the fact that they are forms of body work not directly working on the eyeballs.

The medical system is infuriatingly ignorant and unsophisticated, blind – as it were – to the fact that the body is an inter-connected, highly complex organ with multiple systems criss-crossing throughout. And yet the legal and insurance systems rely on this bass-ackwards medical system to validate what is and is not true.

Fourth, the incident brings up all the past trauma and struggle I endured through the better part of a decade of chronic and debilitating pain. Years spent housebound and/or bedridden, months spent wheelchair-bound, and years and years otherwise spent with severely limited mobility. I plowed through it. I triumphed over it. And what, now I have to do it all over again? Can’t I just fucking enjoy my life after scaling that massive mountain everyone told me would kick my ass for the rest of my life? Must I climb the damn thing again?

There are a slew of consequences for every act of medical negligence. And then there are the scores of people who don’t want to hear you “whining,” which makes it more challenging to heal. Writing is cathartic and, at least for expressive types like me, essential for the healing process.

I remember when I wrote an article about the complications of the patient-doctor relationship, for a magazine that advocates for people with chronic pain, and I was told that the brilliant, articulate, outspoken woman I interviewed was “whiny.” What she was, was a warrior spirit telling it like it is – rising above to speak in a clear, ringing-with-truth voice, despite the cascade of experiences that would have taken a lesser woman down and muted her for eternity.

The experience of active and passive forms of medical negligence is shit. Saying that it is shit does not make one a wallowing whiny victim-y type. It makes someone straightforward. We must not tidy up messy, real life narratives so that we don’t have to deal with the truth of a situation – ie, hide the evidence from the scene of a crime. The medical system is a fucking disaster. Fortunately people are starting to wake up to it, but not enough. We need to speak out even more.

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Doctors Can Be As Dangerous As Disease

By: Loolwa Khazzoom, Founder, Dancing with Pain

December 24th, 2013 • Leave a Comment

I had a very rough night tonight. I have been suffering and struggling with the latest assault on my eyes. And feeling very anxious about expressing my feelings about it, because I have found that far too many people are eager to blame someone when they have been traumatized, instead of extend love and compassion and a helping hand. Writing is my way of overcoming. If I feel silenced, shut down, then I lose my strength to rise above and transform ugly situations.

I have endured many forms of assault in my life – physical, emotional, sexual, and spiritual – from those whom I should have been able to turn to for shielding and healing from such assault – family and medical professionals. When an assault of any kind happens once (depending on how far along a particular society has come at the time), people may feel compassion and empathy. When it happens more than once, I have noticed, people start to blame the victim.

I hesitate to use the word victim because it is loaded. There are all kinds of writings about “victim mentality.” Quite simply, by my definition, a victim is someone who has been on the receiving end of unjust behavior, an assault of some kind. A victim is someone who was just going about her life, her business, and got blindsighted by someone else’s violent or otherwise irresponsible action. A victim is someone who has to pay the price for someone else’s bad behavior.

I feel angry – angry about what was taken away from me, angry about the tremendous amount of strength and will it has taken for me to overcome numerous traumas, only to face more trauma and have to go through it all again. I feel uncomfortable airing my feelings and thoughts publicly, because doing so makes me vulnerable to other people’s judgments and reactions. And yet, I refuse to hide. I believe that when I write and publicly voice my opinions, I am speaking to the Creator Spirit. And when I throw my seeds up into the air, all kinds of magic can happen. Maybe not today, but someday, those seeds can take hold and grow beautiful trees that bear fruit and provide shade and shelter and all those other good metaphors.

If I let other people’s limited thinking limit my own, I do not get to live the vibrant life that is my birthright. And yet it is so scary to go against the stream, to share my experience when I am vulnerable, and risk getting shot down – as has happened on numerous occasions.

When I was in a car crash recently, I was terrified to say anything about it to people other than those in my pre-selected circle, because I did not want to hear someone saying, “Again?” And while most people were kind and compassionate, I was just waiting for the other shoe to drop, and it did. Not because I was waiting for it to drop, as our pseudo-spiritual friends would have us believe, but because that is how a certain amount of people think and act. Which is the reason why I anticipate it: It has happened before and most likely, until society radically changes, will happen again. Which all goes to say, two people did respond with, “Another car crash?” which made me feel unsafe and feel like shrinking in.

I feel angry. Angry that people will look at certain details of my life, the scant few details with which they are familiar (and I say scant few despite the fact that I write extensively and very personally about my life, because truly, there is so much more that you have no fucking idea) and connect whatever dots they want in whatever formation they see fit. Variables. You do not know all the variables at play or how they all come together. It’s basic science: Stop assuming you know what is going on. Stop seeing through eyes that are of the fashionable thinking of this thinking. Stop. Observe. Listen. Ponder. Listen some more. Pay attention.

Pay attention to what someone is sharing with you about herself. About her story, her life, how things have affected her. Think about what this means about our world, what you can learn from the situation for your own life, what we can do to make the world a better place.

Tonight was a very difficult night. I was feeling despair. I have lost my connection to the outside world through my eyes. I feel blind. I can see, so it is something that no doctor will understand. The damage is on the sensory level. I feel as if my senses are throwing out tentacles through my eyes, to feel, but they cannot feel. It’s like there is a bounce back. It’s like there is dead space. It’s like my eyes have gone numb. And they very well may be numb. The medical assistant put numbing drops in my eyes, and my eyes have not been the same since. In the past six weeks.

I constantly feel disoriented and confused. I feel that the impact was neurological, which makes sense, because my eyeballs are in my head. I have trouble remembering words that, before the ill-fated eye exam, just flew through my mind, were accessible to me in the nanosecond that I searched for them in my brain. Suddenly it’s like I am going to the filing cabinet, opening the drawer, and pulling out a folder, but the damn folder is empty.

It is traumatic.

It was only after the fact that I found out that the doctor knew that some people have a very severe reaction to this numbing agent and prodding stick poked at the eye. The doctor did not find this to be information relevant to share with me, despite my specifically telling her at the beginning of the session that I am hypersensitive. I remember being so full of life and vitality, humming to myself, writing down my ideas for repositioning my business, so excited about my new projects and possibilities, while I was waiting for the doctor, prior to the exam. And then my life was turned upside down, again, by a doctor. And then when I contacted the doctor to share what had happened – to share the symptoms of burning, flashing light, blurry vision, intense headaches, shots of nerve pain, and so on – her response was that I need bifocals because of my age.

As if my age kicked in at the very second that I was in that exam. Amazing coincidence!

Age is a lame fucking excuse that doctors and even lawyers will throw at you to escape having to deal with the consequences of their actions or the complexity of a situation. When I was in my late 20s, and my lawyer – my lawyer – told me she needed to know everything that had happened to me, and every way I was affected by the car crash, purportedly in the interest of advocating for me, I shared with her that – among other things – was no longer able to dance as vigorously or as long I could before. Her response? “Well you’re no spring chicken!”

I was all of 27 years old.

When I shared with doctors the fact that my mobility had become severely limited, I was told it was my age. When I shared with an eye doctor that my eyes were adversely affected by liquid nitrogen splashing into my eyes, when a primary care physician decided to toss a cup of liquid nitrogen between my legs for funsies, the eye doctor responded that I was having trouble with my eyes because of my age.

It is infuriating.

It was so validating when I spoke with the owner of a café I frequented back in Oakland. He also was in a car crash, and when he had physical mobility issues and pain following the crash, the doctors told him that it was his age. I believe he was in his thirties.

It is sick. Absolutely appalling. And then when I speak up about it, I anticipate that some if not many people will respond by pointing a finger at me, because it is far less exasperating and far less work to single out one lone woman as a nut job than to deal with the fear and uncertainty of a medical system that might just hurt you as often, or more frequently, than it might help you.

In my world, doctors are not to be trusted. Any overcoming of that mistrust was just unraveled by the eye doctor six weeks ago. And that is what happens: Every time a  doctor fucks you up, they do not just create a pain and suffering situation for that particular incident, but they make it that much more difficult to trust a doctor ever again, or to even go to a doctor.

The other night I was watching Netflix – some movie with Brittany Murphey starring in it. I looked her up on Wikipedia and discovered that she died from some over the counter drug cocktail she was taking to mange pneumonia. She fucking died from a mix of over the counter meds. I remembered when I was taking several medications for some health condition I had, many years ago. I started coughing very badly, and I called the doctor on the after-hours line, to verify if it was ok to take a certain cough medicine, since I was adding it to the mix of several medications.

The on-call doctor did answer the question but was pissed and admonished me for calling on an emergency line for something that was not urgent but could wait until morning. I told him that I did not want to add a medication to the mix, being that I was already taking several medications, when I did not know the reaction of the cocktail of drugs. The doctor began arguing how I was wasting his precious time. He was getting into a fight with me, instead of just being a fucking doctor and guiding me on whether the medication mix was safe. I told him that he was wasting more of his precious time by getting into an argument with me than if he just answered my damn question. He continued to argue with me, and I hung up the phone.

That kind of behavior is criminal, because it actively discourages a patient from calling in an emergency. That kind of behavior can kill. My mother has nearly died a few times, because she has not wanted to call a doctor, because she is terrified of doctors. This is what doctors do when they are patronizing and arrogant, when they treat you like a fucking imbecile, when they dismiss your complaints, make you feel worthless, or otherwise create an environment that is anything but loving, nurturing, caring, and supportive. Doctors may take the Hippocratic oath, but it’s more of a hypocritical oath, because from what I have seen, doctors can be as dangerous as disease.

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Standard Protocol for Personal Injury Cases Is Rife with Flawed Assumptions

By: Loolwa Khazzoom, Founder, Dancing with Pain

December 15th, 2013 • Leave a Comment

When one is injured by a responsible party and is attempting to file a claim for that injury, there are numerous flaws in our legal and insurance systems that effectively punish those taking responsibility for their health and that otherwise encourage individuals to fester in a pit of pain and suffering.

Diagnostic Tests Are Limited
Diagnostic tests are turned to for a definitive evaluation of whether an individual does in fact suffer from a given condition. If a diagnostic test comes back negative, the response is that the test is “normal,” and that therefore “nothing is wrong.” And so it becomes anywhere from difficult to impossible for someone to get compensation for a very real and life-altering injury that simply may not show up on a test. When my knee was injured in a yoga class, for example, both the X-ray and ultrasound came back as normal.

My knee was anything but normal. I was wheelchair-bound for months and in excruciating pain anytime that I tried to walk. Fortunately I had a smarty-pants lawyer who called the diagnostic results “inconclusive,” which – hand in hand with my Washington Post article documenting the fallout of that injury – helped get me a settlement.

Diagnostic tests are limited by the human beings who created them. They are nowhere near as sensitive as the human body. We know when something is “off” in our bodies, regardless of whether x-rays, MRI scans, ultrasounds, blood tests, urine tests, or any other diagnostic tool picks up on the issue or not. Just because a test does not verify the existence of a condition does not mean the condition does not exist. It means, quite simply, that the diagnostic equipment did not pick up on anything, within the limited measuring capacity of said equipment.

Diagnostic Tests and Conventional Treatments Can Be Dangerous or Deadly
X-rays are known to add to the cumulative radiation exposure in our bodies, which in turn can make the body hospitable to the development of cancer. In addition, medical mishaps and negligence are pervasive, so even a diagnostic test thought to be benign can have debilitating consequences. Furthermore, procedures such as surgery often have not only debilitating but also fatal consequences, even for operations that are standard protocol. Medical mishaps and negligence have been cited as being anywhere from the third to fifth leading causes of death in America, never mind where such mishaps and negligence rank with regardless to injury and illness.

In my case, I once was electrocuted by a routine MRI scan, causing my back to go out completely and daily, for an entire half year. I continued to suffer from weakness in that area for years after – leaving me unable to do basic tasks such as scrubbing a bathtub, without my back going out again — and even almost a decade later, I still have sensitivity in that area, as well as the sense that there is a hole.

There are many reasons that someone may not want to submit her body to any number of diagnostic tests or medical procedures that are standard protocol for conventional medical, legal, and insurance systems. It can anything from a matter of dignity to a matter of self-preservation. Besides, why subject oneself to a barrage of invasive and altogether unpleasant poking and prodding, when one can go straight to a massage therapist, cranio-sacral therapist, nutritionist, or other holistic health practitioner who proactively and effectively can resolve whatever issue presents itself — in a way that is positive, heart-centered, and in and of itself healing?

When I was told I may have cancer, back in November 2010, I declined to get a biopsy. “I will not get surgery, even if it is cancer,” I advised the doctor. “So there’s no point.” Instead, I dove straight into radically altering my diet, working with my trusted holistic nutritionist, while keeping an eye on the nodule through the use of ultrasound scans. Only when the nodule grew a teeny tiny bit, albeit statistically insignificantly, did I agree to the biopsy, and only because I had promised myself I would do so — back when I dove head-first into the holistic response — as a way of stabilizing and balancing out my decision of how to move forward.

Doctors Can be Downright Awful.
Our entire society operates on the assumption that doctors are the nice, smart people who make us better. In some cases, that is true. In other cases, doctors are the very people who harm us. In addition, while some doctors are intelligent, humble, and kind, working with us as partners in our health, others are ignorant, arrogant, and patronizing, going so far as to punish us if we question them.

By way of example, take the primary care physician whom I came to see for a routine treatment of a wart: He dumped and splashed a cup of liquid nitrogen between my legs — on purpose, for funsies, and despite my explicit objection – following which I had a stinging sensation in my right eye, months of debilitating headaches and eye pain, and years of hypersensitivity to light. That is just one of many examples in my arsenal of medical experiences that have taught me not to trust doctors until they have proven themselves to be trustworthy.

For those who have been through the wringer of chronic health issues with the gamut of doctors, seeing a doctor can be an outright traumatic experience to be avoided at all costs, or it simply may be Plan Z – for emergency situations only. For all other health concerns, we turn to our trusted body workers, who have proven to be far more caring, knowledgeable, competent, and effective.

The diagnostic and treatment system relied upon by our legal system is in bed with the conventional medical system. It is focused on injury and disease, pain and suffering, past trauma and the negative consequences thereof. With the promise of financial compensation – touted as “justice” — hanging in the balance, our legal, insurance, and medical systems together seduce throngs of people to feed the neurological circuitry that keep one locked in dis-ease, instead of focused on the restoration of health and harmony in the mind, body, and soul.

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