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

By: Loolwa Khazzoom, Founder, Dancing with Pain

December 24th, 2013 • Patient AdvocacyPrint Print

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.



Comments

Back Pain Guy February 4th, 2014

Great article! It’s Our medical system is ruined in my opinion. It’s all about profit and opportunity. I suffered from back pain for 26 years. Therapy, 4 surgeries, I’ve seen it all. I was fortunate because I came across the back pain relief system of Dr. Jason Hurst. Imagine, 26 years of pain, tens of thousands of dollars and this natural chronic pain relief system took away my pain. I was always told that it was in my head, I’ve heard this a lot. I couldn’t agree with you more.
I’ve been treated very poorly, one of my surgeries had my back feeling worse. It’s a shame that nothing is done about it, that’s what gets me. I would be pissed to if that happened to me, clearly a sign that something has to be done. Perfectly worded!

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