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Wednesday, June 29, 2016

Fear of Medical Settings and Medical Professionals

I've got a lot of medical appointments lately. Three this week. This week's are rather anxiety-producing. I'm going through all this alone and I hate the "alone" part. But I am alone in the universe so I have to pick up my cross and walk. "Cross" is a metaphor and a hyperbolic one in this case. If you rated medical procedures between, say, one being a conventional filling for a cavity at a very good dentist, and ten being trying to hold someone with advanced Ebola back from the door of a grisly death, the medical procedures I'm going through this summer are really only at level four: relatively low risk, predictable outcome, and to treat chronic stuff, not immediately life-threatening stuff.

I still hate it. Since I'm dealing with all this alone, I'm blogging about it. It's a way to talk about what matters to me, even if only to myself.

I am afraid of medical procedures, medical settings and medical people.

I really wish I could hug someone before each one, and I really wish I could high five someone and get a pat on the back after I survive each one.

Someone. Not really "someone." I really wish I could hug someone I love and who at least tolerates me (love too much to hope for) before each one, and I really wish I could get a pat on the back from someone I love and who at least tolerates me after each one.

I have been afraid of needles. I've had to have so many injections and so much blood drawn lately that I have to change arms because the most recent bruise hasn't healed before the next extraction / injection.

I want someone to pat me on the back after I, bravely and without complaint, fill the latest test tube.

I can't really say I'm afraid of needles any more. That's a new one. "Fatiguing the response." I think that's a BF Skinner term. 

Someone is afraid of spiders. You dump a jarful of spiders on her lap. She jumps up and yells and screams. Lather, rinse, repeat. Eventually screaming gets old and she is no longer afraid of spiders.

I've had to host so many needles lately I no longer have any time to be afraid of needles.

The best blood drawer was a Muslim guy from Paterson. Big, burly guy. Very much what you'd think a Muslim would look like. He was *superb.* He was charming, in a kind of scary, very masculine way. Like any minute he'd stop smiling and teasing you and asking about your uncle and telling you about his cousin and he'd kidnap you for ransom. I felt *nothing* when he drew my blood.

But. He got into a drag race with some Paterson cops early one morning and it ended up in the papers, and his bosses felt it necessary to terminate his employment. I would never fire a man who could draw blood like that.

***

I wasn't always afraid of medical people and settings.

In 1994 I went to Bloomington, Indiana for a PhD. My first semester there, the professor for whom I worked harassed me for taking off four work days to attend my father's funeral in NJ. I wanted to leave Indiana after these ugly events, but two IU administrators begged me to stay to testify against the professor who had harassed me. They said she was a "sociopath" who had "ruined many" and "almost killed someone." People were afraid to testify against her because she was female and black and they didn't want to be accused of being racist or sexist. I was tapped to testify against her because "You have nothing to lose."

So I spent the spring semester, in addition to taking a full load of graduate courses, testifying to complete strangers, all higher-ups at IU.

In the midst of that, perhaps because of the stress, and unbeknownst to me, my inner ear burst.

I spent the next six years very ill. At times I was functionally paralyzed. I vomited uncontrollably. My vision was compromised.

On the positive side. I lost so much weight so quickly people really wanted to know what diet I was on.

"I can't stop vomiting," I replied.

"Great! I'll have to give that a try!"

Inner ear disorders are really hard to treat. I had no money and no insurance.

Six years. Traveling to three states. Being seen by world class experts.

I received three experimental, pro-bono surgeries from two different doctors.

Each time I was operated on, I was a guinea pig. I was receiving free health care, so I had to be grateful and not make demands. One of the doctors was rather imperious and did threaten to cut off care if I was not fully compliant.

Here's what I had to comply with.

They wanted to discover exactly what was wrong with me. The inner ear is packed up tight inside the skull. I've been told it's inside the body's hardest bone, the temporal bone. So they had to perform tests.

Here was one test.

I was seated in a chair inside a booth the size of a phone booth. I was strapped into the chair so I could not move. I think I remember having electrodes placed on my body but I'm not sure if that's right.

The door of the booth was shut tight. Once the door was shut, the booth was completely black inside. No light of any kind. I was told I could not close my eyes. There was a pinprick of red light. I was told to look at that pinprick of red light. Then, the chair was rotated – sometimes to the left, sometimes to the right. Sometimes fast, sometimes slow. They did not warn me in advance of when the rotations would start, which direction they would go in, how fast or how slow. A voice through a speaker in the booth reminded me to keep my eyes open.

"Please let me out of here," I begged.

"Not much longer," the voice said, through the speaker in the booth.

"Please let me out. I can't take this."

"Not much longer."

That's what "compliant" meant.

After that test, I was strapped into a harness that gripped me between my legs and around my chest. The harness was connected leashes that were connected to walls. I was told to look at a painted backdrop of scenery – blue skies, horizon, green trees and grass. Then the floor gave way beneath me. The floor gave way from the right, from the left, from the back, from the front. Each time experimenters noted which way I fell and how my body attempted to correct itself.

In another test, I was told to lie on a metal table. Freezing cold water was blasted into my broken ear. I immediately spun out of control – overwhelming vertigo and vomiting. Not sure if that test was successful or not. But I was complaint.

In another test, I was told to lie on yet another metal table. All I can tell you about this test is that it was administered by a doctor whose last name was Polish, and the English translation of his last name is the word "swingletree," a word I had never heard before.

If I dared ask what any given test was for, it was always, "You might have MS, a brain tumor, or advanced syphilis."

They always said these things as if they were talking to a lab rat. There was no attempt to couch the words. They could have at least thrown something vanilla in there. Like, you may have MS, a brain tumor, advanced syphilis, or it could just be the common cold and you'll be better in no time with some bedrest and plenty of fluids."

Never. They just ran down their list of life-destroying illnesses.

When it came to the MRI, I was *not* compliant.

"Get me out of here."

"We need this test. We're trying to discover if you have a brain tumor."

They knew damn well that I had an inner ear problem. They knew it wasn't a brain tumor. They just liked sticking pins into their lab animal.

"Miss Gorskek, if you will not submit to this MRI, we will not be able to treat you. It is medically necessary."

"I don't care. Get me out of here."

And they did. They got me out.

"Miss Goshrap, please go sit in this little room we have for pussies like you, and give it some thought. If you won't allow us to perform this MRI, you will not receive any further medical care from us. And take this. It's called Valium."

While I was sitting in that little room, I felt as if Jesus walked up to me and said, "I will do it for you." I don't think Valium can do that. I do think it was Jesus. I went back and did their damn MRI – or Jesus did it for me – and eventually got more, experimental, medical care.

I'm deaf in one ear. The illness didn't do that. The free medical care did. Being deaf makes me sad. I do wish they hadn't done that to me.

So, yes, I am now afraid of medical people and medical settings.

***

In the past four years, I broke my arm, was diagnosed with cancer, and was also diagnosed with a chronic illness. My sister was diagnosed with a brain tumor. She was in four different medical facilities.

Medical people hurt my sister's daughter in unnecessary and even sadistic ways.

There was one doctor who struck me as very cool. He was an older Jewish guy. Fifties or sixties. He was old school.

My sister's diagnosis was misery and death from day one. There is no hope for those with what she had. Of course after I received word I googled the name of the illness. I immediately found web pages calling her tumor "the terminator." It was medical professionals, on dot gov, dot edu and dot org websites calling it that.

That's why, from the beginning, I prayed for a miracle for her. And every time I prayed that prayer, several times a day, I heard a little voice say, "No."

This one good doctor had stepped out of a 1940s movie. He wore suits and ties in sober colors. He knew that Antoinette was "Toni" to all who knew her. I alone consistently called her "Antoinette." She was someone special to me and she deserved her own special name – a long, French name, pronounced correctly. Not Ann Tin Et but Ann Twa Net.

But to everyone else she was Toni, and this doctor called her Toni.

He knew she had no hope. He knew she was dying. He said those things, but never in those words. He chose old, dusty words like "grave condition" and "appropriate caution" and "limited outcomes." He said tough stuff that needed to be said, right to Antoinette's family's faces, and he said it *the way it needed to be said.*

And he did this all day, every day. He specialized in this disease, "the terminator." He had said goodbye to many patients, and not the kind of goodbye a doctor wants to say. "Great! You're healed! I'll never need to see you again! Go out there and have fun at life!" No. He said the other kind of goodbye. I could see it in his eyes. I don't know how he took it.

That doctor, I could respect.

I've had to deal with my own stuff without health insurance – I'm an adjunct professor – and with the onset of Obamacare, which was a Kafkaesque nightmare I have not fully described to anyone, although I've told bits and pieces of the story, so people know that "Obamacare" does not mean "Utopia." Really. Not.

In the past four years, not a single month has gone by that I haven't been in a medical facility of some kind.

Before every visit, either for myself or for my sister, I experience anxiety – tight chest, shallow breathing, worms wriggling around in stomach. During every visit, all I want to do is spring for the exits. After the visits, I so want that pat on the back. I give it to myself by buying some expensive treat, like Trader Joe's truffle-infused Marcona almonds. Seventeen dollars a pound!!!!

I'm on a temporary, very restrictive diet right now and so I can't buy myself something special to eat, so I treated myself by watching three movies, back to back, this weekend: "Free State of Jones," "The Conjuring 2," and "Me Before You," all of which I reviewed on this blog. Watching movies in a theater, writing about them, and talking about them with other movie fans is one of the great joys of my life. It's my bubble bath.

I try to tell doctors and nurses that I am afraid of medical settings and people in the hopes that they will use this information to exercise some caution, some respect, some tenderness. Ha, ha, ha, ha, ha.

Geez, I thought I was going to write this blog post about my bear encounter yesterday. But it's getting to be time I need to get ready for today's medical appointment. The bear narrative will have to wait.

4 comments:

  1. I'll be 65 this year and only in the past few years have I met any medical anybodies I felt I could trust. I've been thru some stuff, so I feel your pain.

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    Replies
    1. Trudy thanks for sharing. I hope we both continue to meet some decent folks in white. (And pink and blue)

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  2. Prayers for you. This is the only blog I check every day and I had been wondering what was going on. I hope you are soon we'll.

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