I just got back from Office Depot. I went in to get them to open the impenetrable plastic containers preventing access to the various products I bought a few days ago. Why they use so much plastic wrap for such little things is beyond me, never mind why they make it impossible to open without the equivalent of a machete. Especially sucks for anyone with any semblance of hand pain, arthritis, etc.

Anyhow, so I walked in, and there was nobody at the check-out register. There were a couple of people in Office Depot uniforms talking to someone, and there was another guy in a uniform walking around. I was trying to figure out where to go and whom to approach. I stood there a minute, confused, then made my way toward the two customer service people talking to someone.

I stood patiently waiting for them to finish. Suddenly they both came at me, simultaneously, with no space or time for me to get out of the way. Never mind that neither of them acknowledged my presence or asked what I needed. They barreled at me, in a very narrow passageway that was no more than two people wide. And the guy was quite big.

It was all so sudden, I couldn’t do anything to protect myself. In retrospect, probably the only self-protective move I could have taken would have been to yell, “Stop!” Of course that gets into all kinds of weirdness. I mean, I look totally able-bodied, so why would this woman (me) be yelling at people out of the blue? I’m not sure they would respond postively, much less change their movement, becuase they probably would have no point of reference for what I was asking them to “stop.”

I felt energetically assaulted. I twerked my body, to avoid collision, and my nerves got all jacked up. What’s the deal with people who can’t hold off for, I don’t know, maybe three seconds, possibly four, to allow others the space to move and adjust safely. Pain shot through my body as they jammed past.

The woman said, “Excuse me.” The man said nothing. Nobody actually physically rammed into me. But they were so right up in my space, centimeters away, that their energy did. I was left in pain.

I was more or less limping while walking to my car and up the stairs to my home. After several days of pain-free bliss, I’m now hurting and having spasms, even as I post this blog. I’m going to dance it out of my body in a minute. But fuck, this kind of careless, thoughtless behavior really pisses me off. And it doesn’t seem there’s much I can do about it, other than raise awareness in my own little way through this blog.

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Somewhere in the process of negotiating a holistic approach to physical therapy that would be covered by my health insurance, Joanie (the physical therapist I stayed in the USA to work with) decided to stop playing on my team and go to bat for the health insurance company:

Whereas she initially confided in me that interns with no medical training were responsible for approving or denying my doctor referrals for physical therapy (indicating that she thought the system was absurd), and whereas she initially promised to help me get the treatment I so desperately needed, she suddenly did an about-face – claiming that I was “committing fraud” by arranging a holistic approach to my physical therapy, and saying that she would not go along with it.

“This is a hospital,” she practically yelled at me in a shocking phone conversation. “We only treat people with acute conditions.” Um, not so much. I distinctly recall a conversation with a medical group representative, where I was advised to go to Joanie’s center specifically because it was a community rehabilitation center not tied to the hospital, not treating only acute conditions. The center’s title, in fact, was “[Medical Group] Outpatient Physical Rehabilitation” (emphasis added).

I turned to my doctor, seeking help. On the one hand, she was supportive. “I’ll ‘commit fraud,’” she said, shrugging her shoulders, clearly of the mind that the assertion was preposterous. On the other hand, she wasn’t so supportive: “Why do you need to keep going back for sessions?” she asked. “They have already given you exercises.”

“Well,” I replied, “my body changes from week to week as I progress. I need someone monitoring me. I can’t just keep doing the same exercises forever. As I get better, I need different exercises.” (Um, why exactly do I need to explain this to a doctor?)

As we continued talking, I also shared with my doctor how critical it had been to my rehabilitation to have a place to go for coaching, guidance, and encouragement — a place where people finally cared and supported my healing, instead of fighting it. “I think that’s what the insurance company has a problem with,” Nina responded. “They don’t want to pay for a cheerleader.”

A cheerleader? A competent and caring physical therapist is a far cry from a cheerleader. But hell, if a cheerleader is what it takes to get someone back in the game, then pay for a fucking cheerleader. For chrissakes, I mean, what the hell is wrong with our healthcare that 1) it takes forever to find someone who cares and 2) when you find that person, s/he is considered a luxury item outside the purview of medical coverage.

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Seven years after my chronic pain journey began, following non-stop struggle, I landed in the office of Nina — a doctor who took me seriously, treated me like a human being, cared about my wellness, and didn’t fight me in my attempt to heal.

Not only that, but she was willing to go the extra mile. She applied herself and took on the health care system with me, to secure the medical attention and treatment I needed — attention and treatment that is commonly denied yet critical for diagnosis and healing.

For the most part, I did the footwork, and Nina signed the referrals. We also tapped our combined knowledge to figure out what other tests I might need and what other methods might help, and we brainstormed together about how to work the system, when it was not cooperative.

From the outset, I was adamant about getting physical therapy. In the hands of Joanie, my superstar physical therapist, I began improving by leaps and bounds. In a short period of time, for example, I went from barely being able to lift my arm to lifting five pound weights.

There was just one problem: My health insurance. See, according to American health care ideology, our injuries are supposed to be healed within four visits. If they are not, we are clearly duping the system, seeking attention, or otherwise looking for a little extracurricular fun at the local rehab center.

Whereas my Canadian friend Aviela got an entire year of physical therapy – several times a week, I might add – until her wrist was completely healed, I was supposed to be all better with a few scraps thrown my way.

Not only that, but as much as I loved working with Joanie, and as much as I was improving, everything was approached in piecemeal fashion: I’d get four sessions allotted for my shoulder pain, and during that time, we were not allowed to work on anything else. Then I’d get four sessions allotted for my ankle pain, and lord help us if we touched my knee.

Meanwhile, it was a no-brainer to me that all my pain was inter-connected. I didn’t have the sophisticated neuroscientific understanding that I have today about how things work, but my intuition told me that whatever was going on was systemic:

I knew that my body had been traumatized far too many times and that it had essentially shut down in response. I knew that I needed a methodical, integrated, whole-body approach to physical therapy, to give me the chance to heal.

Besides, as I knew without a doubt from kindergarten, “The hip bone is connected to the (beat) thigh bone…” So I fought for it. I wrote letters. I spoke with gatekeepers. I laid out my vision for a holistic approach to healing and justified the rationale to the health insurance powers-that-be.

Somewhere during the process, Nina suggested bringing on a “patient advocate” to help plea my case to the health insurance company. Barbara, however, proved to be more of an enemy than an advocate.

“You’ve had this condition for so many years,” she said in a phone call I will never forget, “that we consider you to be disabled. Our assessment is that you cannot at this stage be rehabilitated.”

“But the reason I have had this condition for so many years,” I replied, “is because it’s gone untreated. It took me all those years to find a doctor who believed me and responded appropriately and got me into physical therapy. Now that I am in physical therapy and getting proper treatment, I am improving by leaps and bounds.”

I’m not sure how she looks at herself in the mirror each morning, but somehow Barbara managed to simultaneously acknowledge that I was rapidly improving, as evidenced by my physical therapy reports, and yet insist that I could not have more access to physical therapy because I was a lost cause.

She then blacklisted me from any more physical therapy. Ever.

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OMG a friend just sent me a link to this book by Barbara Ehrenreich, Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America . I have not read it yet, but I already love it, just from the description. Finally a Law of Attraction hater goes public and in a big way! I’m hoping to score an interview with the author. I’ll keep you posted.

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It’s great that everyone is singing the patient empowerment song today. Yes we patients need to go do our thing and take responsibility for our health and all that jazz. Applause applause.

But for chrissakes, stop pretending we live in some Law-of-Attraction bubble where the only force in our lives is our own will. There are twenty million other factors going on that are way the fuck out of our control. So despite the passionate desire and absolute commitment a patient has for her own healing, she may not have the resources or physical stamina or medical knowledge or a host of other things to know where to even begin looking or what questions to even begin asking.

And this is why I get really fucking pissed when people who don’t truly know people in chronic pain, who don’t actually know our stories, start fishing around for “the real reason” why we have chronic pain. Here’s the real reason: Our health care system is fucked.

In the early days, I would wake up about every six months with a silent scream, sitting bolt upright in bed. My life was being drained from me, and I felt powerless to stop it. Everywhere I was supposed to turn, the only places I knew to turn, were failing me and humiliating me and further injuring me in the process. I – an educated, assertive, resourceful, determined, powerful young woman full of life and vitality – had no fucking idea where to get the help I needed. And neither did anyone around me.

To date myself, it all happened before the internet was accessible to the masses, so it wasn’t like I could go to Google and type in “chronic pain + healing” or the million variations thereof. Meanwhile, my life was falling apart, and each component of my life’s dissolution was feeding another:

Less physical ability ->less ability to work -> less financial resources -> less access to out-of-pocket health care -> less effective response to pain -> depression -> less energy -> less social life -> isolation -> more stress -> more pain…I was running  – er, hobbling — around like a mouse in a maze, positive that the exit was somewhere close, probably right under my nose, but absolutely unable to find it.

How dare anyone judge people fighting for their lives like that.

In my case, I just kept on keeping on, doing what I could, working my edge, getting more creative, more assertive, more inquisitive, more demanding. I started talking to anyone I could about what was going on — thinking that maybe someone would have the answer, someone I might not even expect to have it. I wrote down what worked, what didn’t, what might, and how I could access new possibilities.

In 2003, I devised a system to interview doctors, based on what I knew I needed and what I knew didn’t work with past doctors. Among my requirements for a new doctor was the interest in working with my alternative health care practitioners. Through various means, I came up with a list of seven doctors to interview.

I found one of those doctors indirectly, through talking with a friend. She’d had a great experience with a East/West medicine doctor in my area. He had been able to heal her quickly from a condition that had stumped the Western medicine doctors. While he was not covered by health insurance, my friend suggested that maybe he would know someone who was.

He did.

I felt she was the right doctor for a few reasons, not the least of which was that she actually had a different rate for an office visit and an initial consultation – ie, interview. Since my health insurance did not cover doctor interviews, I was paying $100/visit out of pocket. But with this doctor, I only had to pay $25. In addition, this doctor had a whole host of other positive attributes for which I was looking, and above and beyond that, I liked her energy. So I switched.

I was disappointed, however, in my first visit with her. Like many doctors before, she made an assumption about a heart condition I was having, without doing the footwork of getting an accurate diagnosis. So when I called to make another appointment a few weeks later, I was pleased that she was not there that day. I figured it was a great way to check out other doctors in the practice.

“Are you Loolwa Khazzoom, the author?” the substitute doctor said as she walked into the room. I knew right then I was switching doctors again. I didn’t know which of my writings this doctor had read, but I knew that from the moment she laid eyes on me, she was seeing more than a frustrated patient in a paper gown. She was seeing a whole human being.

As it turned out, she had just heard me on the local station of National Public Radio, where I’d been interviewed as part of my book tour. Her first introduction to me had been to me – an articulate, passionate, accomplished, dynamic, powerful, and funny woman.

This doctor proved to be the best I ever had up to that point. I can’t say how much of her compassion for and dedication to me had to do with the way she perceived me in particular, versus the way she just was with all her patients. I did, however, for the first time in my life since facing chronic pain, receive proper medical care. And lo and behold, I began to heal.

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