Chronic Pain: A Comedy

Misc–karmic mistakes?, stand-up

As some of you know, in the summer, I was in Spain at a narrative health conference. The talks are all addressed to professionals–doctors and teachers talking to doctors and teachers. I participated as a teacher, but listened as a chronic pain patient.

The conference was really interesting, but I kept finding myself frustrated. There were all of these techniques–aimed at letting the patient tell his/her story to the doctor. In other words, instead of just having a doctor actually listen (and take the time to, which is sometimes the hard part), there were “activities” to force it.

And then someone in the audience would ask how they could streamline the activity–you know, to save all that time of listening.

There was also a lot of emphasis on art therapy, which I am behind to an extent, but the idealism at the conference annoyed me sometimes.

One of the organizers asked, “wouldn’t it be great if your doctor put away his diagnostic tool and got out a guitar?”

I leaned over to Melissa and said, “I would punch my doctor if he did that.”

I believe in holistic care, and I mix Western and Eastern techniques in my fight to feel better.

But hey, there’s literally bile in my stomach. And my discs are “desiccated.” And so on. Laughing makes me feel better, but it won’t fix my stomach lining or discs.

That said, stories are immensely important.

After watching me give a couple of presentations in the last few years, a woman suggested I do one woman shows.

“Well, I sort of do–just in shorter form with stand-up comedy.”

(This woman also seemed relieved when she learned I’m originally from the South: “Oh, that makes sense. I was trying to figure you out. I’m normally suspicious of charismatic people, but you always seemed so nice. You’re just Southern.)

This woman is right. I am nice. I am charismatic. I should do a one woman show.

And so that was on my mind when I saw the call for The Storytelling in Health conference this summer in Wales.

I sent them an exploratory email: hey, I could do a regular panel on this, or I could come in as a chronic pain patient and give my narrative–in stand-up form.

And so that’s what we’re going to do.

I’ll have 45 minutes, including a Q&A.

Thrilled. Terrified.

Wondering if a bunch of medical professionals will know they’re supposed to say, “break a leg.”

 

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Turkey Days in Davis

Misc–karmic mistakes?

Many years ago, I was surprised to see a couple of wild turkeys wandering around downtown Davis.

Then, when my backyard shared a fence with the cemetery, I discovered their main hangout–among the graves. The city had to put up a warning.

The cats were fascinated by the turkeys, who would often jump on to our roof. Mahahes would do his bird call to them, but I think he didn’t really understand that if they got close to him, he would be fighting something his own size or bigger.

Turkeys on my roof

Now, our turkey population is estimated to be about 80. They’re stupid and aggressive (like alt-right voters). They’re attacking people and prompting 911 calls (like alt-right voters).

The city council is figuring out what to do.

In the meantime, they’re providing experiences that are uniquely Davis.

A few weeks ago, I was crossing the quad. A couple of people were doing tai chi. A turkey was right up on a small Asian woman. He followed her through the moves, swinging his head to follow her arms, surprised when the arms would swing back toward him. She and her partner (and I) were trying very hard not to laugh.

And failing.

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On the other hand (backhanded, that is)

Misc–karmic mistakes?

This week, one of my doctors and I had to take a moment to just look at each other.
I was in acute pain. He knew how to make it stop. He couldn’t, unless I wanted to cover the entire cost myself.
“I can’t give you the treatment because insurance wouldn’t authorize it this fast. I can’t give you a shot of pain killer to tide you over–I’m your specialist. Your primary can do that, but I can’t.”
We talked about ERs and cabbages and kings.
I have a lot of complaints about my body–I have chronic issues, including chronic pain.
I have a lot of complaints about insurance and the American model of medicine–I’ve written about some of them here–not all of it. In 2017, I should run a ledger: how many hours do I spend on the phone with my insurance company? How many times are my bills wrong? How many times is my medical care (a prescription, a treatment) denied?
It was an expensive week (next week will be too). In addition to my insurance premiums and my meds (so many meds), I paid $200ish in doctor/procedure fees that weren’t about my acute problem. The acute problem added in another $200ish.
On the other hand, I am thankful I have insurance.
On the other hand, I am so thankful for my team.
With few exceptions, my health care team is incredible, and not just because they’re willing to fight for me.
Let’s look at this week.
First, my chiropractor and my massage therapist have worked very hard. On Monday, I couldn’t walk. I managed to get to classes the rest of the week due to people being willing to fight with my muscles and my misalignments.
On Thursday, my PTSD therapist (who works in the pain clinic) got on the phone with my pain doctor during our appointment to explain that my back had gone from chronic to acute and that I needed intervention asap.
Usually, it’s at least a month to get on the calendar. My pain doc is going to try a fun new intervention Wednesday morning.
That same day, my neurologist and I had the conversation discussed above. He has me on his schedule for Monday, as an intentional overboook, in case I couldn’t get in to see a primary yesterday. He called in a prescription for a patch to apply to my back (I haven’t been able to use it–insurance is being difficult).
Yesterday, I was able to get a same day appt with my primary care physician’s colleague. It was his last of the day–4:45. Still, he was thorough and kind. He listened. When I suggested a tweak on what he wanted to do–one kind of shot instead of another–we talked it through.
His PA came in to give me my shot, but so did the building’s shot nurse–a year before, when my back was acting up like this, we had an issue with this shot (for your sake, I’m being vague here). She wanted to check on me, to make sure I was as okay as possible, to make sure this shot went well.
In other words, the people who take care of me are awesome.
Insurance, I have an amazing group of people trying to tackle amazingly difficult problems. Please let them.

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Start of Fall Update

Misc–karmic mistakes?, Words, words, words

Remember when I wrote about some changes I was trying to make? Well, I’m happy to report that I’ve still been walking/exercising a lot more. However, I fell behind in doing lots of writing.

In my defense, I taught three classes this summer, went straight to Spain for a conference after the quarter was done, came back to start five more classes, and am heading to Sweden on Tuesday.

There are lots of pics and experiences to share–and I will–I just have to do this other stuff first. 🙂

In the meantime, if you haven’t seen my piece on Star Trek, it’s here.

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The Continuing Adventures of Karma’s OnLine Dating: Entry 45

dating, Misc–karmic mistakes?

Every day, I get an email about who’s been trying to hack this site. Specifically, I am alerted when a distinct IP gets blocked after 20 failed attempts to log on. Usually, these IPs are registered in other countries, but someone in Kansas wants in too.

There are also a lot of spam comments. Hundreds are blocked every day. Some are just ads. Some are in completely different languages. And some pose as real comments, with compliments on content (though never specific)–I think they’re hoping that if a comment gets approved, they’ll have unrestricted access to the comment section from then on.

I’m not alerted to all this spam–my program only shows me actual comments and what might be actual comments so I can choose to approve them.

This week, this spam comment came through for approval on this entry:

What i do not understood is if truth be told how you’re no longer actually much more well-favored than you may be right now.

You are very intelligent. You know thus considerably relating to this subject, produced me individually consider it from
a lot of numerous angles. Its like men and women aren’t involved until it’s
something to do with Lady gaga! Your individual stuffs nice.
All the time handle it up!

Obviously spam, right?

Actually, I can’t blame the program. Have you seen what real guys write to me on dating sites? The readability level is basically the same. 😉

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Below Surface Condition

Misc–karmic mistakes?

A submarine is in surface condition when she has sufficient positive buoyancy to permit running on her main engines. (maritime.org)

“This should take about forty minutes,” says the technician. He pushes a button and I start to slide into the machine. Most people compare an MRI to a coffin, but since I’m not claustrophobic, I don’t quite find that an apt comparison. It is reminiscent of something, however.

I relax. There’s nothing else to do. This is one of the few moments in the day when I cannot do anything but think. Today they are scanning my brain and my spine, but I don’t necessarily want to think about that. I’ve already made the jokes about how they’re scanning to see if I have a brain or if my students’ praises have given me a swelled head. I’m not sure if the jokes are for me or for the audience of my loved ones, but in my family, I know they are a survival strategy.

If we had a family crest, it might well be “And if I laugh at any mortal thing, ‘Tis that I may not weep.” But we don’t have a family crest. And if we did, I would have to invent it. My family doesn’t read Byron, and I don’t think they’d go for something that artsy. Or that honest.

This isn’t the first time I’ve been in one of these. I’ve had several, for different body parts. I wonder if I’ll be able to get the technician to give me a hint. After my first MRI, the technician said “Good luck” with a tone of sympathy I understood when I saw the report, which indicated I needed surgery to remove a herniated disc. Another technician was kind enough to show me the picture of the cyst in my ankle when I asked.

I tend to like technicians more than surgeons. My back surgeon, with the bad bedside manner and the inability or unwillingness to discuss the future of a back with degenerative disc disease, woke me from my blissful slumber with the news that my hernia was the biggest he’d ever seen. “I showed everybody!” he said. He sounded so proud, you’d think he grew it himself. He remarked upon its size three more times before I was discharged that day.

My ankle surgeon, with a name as unique as mine, Scarlett, was nicer, but was also happy when my cyst turned out to be something she’s never seen before. “I had to look it up!” she proclaimed. “I’ll always remember you because of this.”

As I have several chronic, but nonfatal, diseases, I see doctors a lot. I’ve always found it hard to get them to see the pain in me. Part of living with chronic pain and remaining productive is the ability to mask it. Maybe because of my theatre degree, I can do it better than most. The only person I’ve ever known who was able to tell when I had a singularly bad headache was a former boss—she could read eyes like no one else.

I’ve had a headache, one that changes in form and intensity, since I was twelve. It might be due to TMJ, to stress, to muscular problems in the neck, to the twisted vertebrae there, or, more likely, it is the product of all of these things. I only say I have a headache when I have a guillotine day. These days find me daydreaming of guillotines—of the cold metal relieving the pain by removing the offending part. Guillotine days find me unable to concentrate. The pain reduces my abilities to move information from one synapse to another. I take enough drugs to kill animals bigger than I am. I worry when my breathing slows. I wonder how the medications can be shutting down vital systems while not even taking the edge off the pain. Over the years, my tolerance for these has become dangerous, yet they have not yet put me on anything effective enough to cause addiction.

I can understand their reluctance—we are currently in a political climate where Americans in pain cannot be given anything strong enough to help, unless they’re Rush Limbaugh, because they might become addicted, like Rush Limbaugh.

And I’m young. When I first tried to tackle this problem, one doctor dismissed me completely: “You’re too young to be in that kind of pain.” I agreed, but I still was.

I have had my eyes checked; I have a weekly massage; I do yoga; I take painkillers; I am regularly chiropracted; I have tried cranial-sacral therapy; I have tried herbs; I have tried acupuncture. I even allowed one healer to lance and cup me. When I was younger, and a Christian, I was prayed over. My headaches were attributed to the devil and I underwent Deliverance, the Protestant form of exorcism. It did not deliver me. At home I have various massage toys, a TENS unit, and something that gives electrical charges to my shoulders in vain attempts to make the muscles release.

When one chiropractor I dated proposed after two weeks, I was sorely tempted.

Despite all of this, few people have caught on. It took one practioner several months before he diagnosed me: “The more you’re smiling, the more you’re hurting.”

******************************************

Lying restfully in the machine, I listen to the different noises. Occasionally, when they hit a certain frequency, I can feel it in my thighs. Other frequencies resonate in my hands. Being in the machine is like living within a loquacious tube that talks in fire alarms and sirens. One of the noises is a pinging. It reminds me of naval movies, and I realize that this machine is more like a submarine than a coffin. Ping. Ping. Ping. The pinging of the torpedo on radar is frequent—the missile is close, but is not coming closer. There is prolonged, impending contact.

It occurs to me that only 10% of the submarines in WWI ever returned home. What relief they must have felt, coming up into the light.

I never cry in doctor’s offices; I save that for when I walk outside, putting my sunglasses on in the inevitable glare. Crying has only happened three times. Once, when a doctor told me that perhaps I should be evaluated for fibromyalgia. My doctor friend told me that fibromyalgia was code for “hypochondriac” in files. Because doctors don’t understand it, it doesn’t exist. Restless leg syndrome did not exist until there was a cure. Yet part of me longs for the fibromyalgia diagnosis. Maybe I could tell myself to take more time off; I could become Flannery O’Connor—sickly, but writing. In my imagination, she is praised for simply getting out of bed every morning, because people understand that what an achievement it is. She has a condition, and there’s great power in naming it.

At one point, I was referred to a neurologist. He put me one medication after another. They constipated me (no one ever warns you about that). After four, he told me that there’s nothing more to try and that he was retiring, anyway. I repressed the urge to question his field—they only have four drugs? I asked him what he was going to do with all that free time. I pretended that he had not just crushed me; that I did not feel abandoned. It took a few minutes of crying in the car before I could drive home.

A year or so later, my primary care physician sent me to him again–he was seeing patients in retirement. I told my doctor the other doctor had given up on me; he couldn’t believe that was true. And then I was greeted with, “What are you doing back here? I told you I can’t help you.”

When I was a graduate student, I was sent to a specialist in neuro-muscular pain. He examined me briefly, told me he was worried about my bitten nails and cold skin. He informed me that there was no reason for me to hurt and suggested I try past life regression therapy. I thought at first that he was making a joke about my name, but he wrote the name of a book on his prescription pad. When I looked at the nurse, she seemed bewildered, but would not meet my eye. I did not understand how knowing that my skull was crushed a few hundred years ago would take the pain away, but I read the book.

I went to a psychic, who told me that one of the women my father cheated on my mother with put a curse on us when I was a baby. She could take it off for $2000. As she was Catholic, she did not believe in past lives. After paying for the consultation and being blessed with holy water, I went home and cried at the absurdity of it all.

Remembering this, I start to tear up in the MRI machine. Crying doesn’t count as moving, but wiping the tears would, so I stay motionless. Saltwater fills my little sub. I have stopped by the time it’s over, when I am moved back into the light.

“See anything interesting?” I ask, feigning disinterest.

“I don’t read them.”

I look into his eyes, but I can’t read them, either.

 

 

 

(I wrote this piece half a decade ago, but realized I’d never shared it with you.)

 

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London 2016

Misc–karmic mistakes?

At the start of the summer, Melissa and I got our Spring grades in and headed over to London for the 19th annual Great Writing Conference at Imperial College. The conference was fascinating, and we both did very well on our respective panels. We hope to return next year.

Here’s a look at this year’s highlights:

  • Dinner with Courtney and Liam, before they headed out of town. I got to finally try bubble and squeak!
  • Staying with Chaz and Carmen (and their two year old, Michael). I am exceptionally lucky that Chaz and Carmen are in my life and that they let us crash with them. Not only is there always a pot on for tea, but I love just spending time with them. I was able to introduce them to American-style brownies and a couple of bottles of my favorite California reds.
At the V&A

At the V&A

  • The V&A, where we hit the underwear exhibit, the theatre history exhibit, and one on Botticelli, called Botticelli Reimagined, which started with modern day homages and ended with actual Botticellis. I learned that women during the wars were livid when rationing restricted their access to nylons, etc.–rather than feeling liberated, they felt like the government expected them to leave the house looking indecent, that people made corsets for “active wear” (aka horseback riding and tennis), that I’m really glad tondos (round paintings featuring the Madonna and child) aren’t in fashion anymore (cause once you’ve seen one . . .), and that I want someone to explain this painting to me. What are all the demon-like creatures in this painting doing (look at the bottom)? What do they represent?
The Mystical Nativity

The Mystical Nativity

  • The National Theatre, where we saw two great plays with two great sets. First, The Suicide, a comedy by Suhayla El-Bushra. It’s a satire and reminded me a lot of a play we did in high school–Was He Anyone by N.F. Simpson. Both are about our lack of empathy for others and our ability to make everything in the world about us and our needs. Second, we saw Deep Blue Sea with Helen McCrory–also about suicide and way more depressing, but beautiful.
  • The British Library, which had a Shakespeare exhibit, including a clip of a show Denise and I saw in Chicago years ago, Othello: The Remix. I learned that actress playing Desdemona in 1660 was the first woman on the British stage, that there are no tragedies in traditional hindu theatre, and that Vivian Leigh has played basically every Shakespeare female character, having been trained in British theatre.
  • The Houses of Parliament, which we toured on the same day a member of Parliament was murdered, although we didn’t know that until later. I learned that the Parliament houses are too small for the members of Parliament now, so you have to get there early if you want a seat, that people say, “I spy a stranger” if they want the people around who aren’t members of Parliament to leave, that Oliver Cromwell shouldn’t be the most prominent statue outside (since I don’t like him), that I will get the Monty Python song “Oliver Cromwell” in my head every time I think of the man, including right now, that there are statues and paintings everywhere inside of Kings, Queens, and Consorts, that they used to have bells in nearby pubs that would ring when it was time to vote, and that they have a weird and wonderful tradition: Black Rod–a person/position–has the door of the House of Commons slammed in his face during sessions, to symbolize the House of Commons’s independence from the throne and the lords. One can see years and years of damage the door, because the Black Rod has to knock–with his rod–to be let back in. Melissa said we should institute a similar tradition, slamming the door to our Congress in the face of religious figures to symbolize that they have no place there (but we’re not for letting them back in).
  • My new favorite sign, because it’s both a practical warning and an invitation that some self-assessment may be in order:
priorities
  • The British Museum’s Sunken Cities: Egypt’s Lost World exhibit. I learned that coastal cities in Egypt had active Greek communities before Alexander conquered them and instituted Ptolemy’s rule. In both periods, religious tolerance was high, and thus, the religions melded into each other a bit. Some Egyptian gods were made to look like Greek heroes in certain places (see Serapis/Osiris below), while the strong female influence changed the Greeks in Egypt. I also learned about Egypt’s dark queen (Cleopatra VII was called that, but there was one before her) and Neith, a sort of cross between Athena and Artemis, but in early Egypt.
Osiris as Serapis

Osiris as Serapis

  • Falling down in front of a pub due to my stupid body and its stupid clumsiness was not a high point for me, but the drunken guys standing outside the pub loved it.
  • We also very much enjoyed a quick drink with my friend Tim and his husband. I met Tim when I was in Oxford for a conference last September. Although the drink was too quick, I was able to reassure Tim and the rest of Londontown that I’d be back for sure next summer. Thanks to a very generous Amy, I’ll be in Oxford for four weeks, leading the Fantasy Summer Abroad class! In other words, I’ll be able to do this for real:
0917151135a
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I don’t get shoes

Misc–karmic mistakes?

I am not a shoe person. I blame this on two things.

  1. I’ve only ever found one pair of comfortable shoes–my FinnThink sandals–I’m currently on my third pair.
  2. My white-trash heritage surely plays a role in my anti-shoe fetish. I grew up on dirt roads out the woods, and I didn’t always keep my shoes on outside. The second I stepped inside, the shoes came off–a habit I continue today.

Because I don’t particularly like them, I hate shopping for them (especially since I know that something that feels okay in the store often will kill my feet the first time I try to wear them to classes).

As I hate shopping for them, I don’t give myself the chance to find comfortable shoes that I won’t hate, and thus the cycle continues.

But there’s also the problem of my shoes simply falling apart.

A few years ago, in London, the heel came off the only pair of shoes I’d packed with me. The cobbler I took them to–while wearing flip flops a size too small that Carmen had lent me–he told me that my cheap Target boots weren’t worth fixing. “But they’re my only pair here!” He glued the heel, and wouldn’t even charge me, preferring to shake his head at me instead.

Last summer, in Iceland, another pair of boots lost a heel while on a tour–we were on an amazing beach, with basalt columns that looked like organ pipes. The sound of the waves coming to the shore was marred by the loud flap my loose heel made with every step. Those boots stayed in Iceland.

A couple of weeks ago, I happened to glance at a pair of sandals–Danskos–that I hadn’t worn in a long time. Later, after entering Target, I heard a noise like I’d dropped something. Part of the shoe had come off. As I grabbed bread and my prescriptions, I left a trail of shoe. Here’s what the bottoms looked like when I got home:

0621161845

 

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Because My Love For You Would Break My Heart In Two

Misc–karmic mistakes?

NPR yesterday: mumble mumble mumble [I had not yet had my tea] . . . David Bowie has died.

I felt like I’d been punched in the chest.

I won’t claim to be the biggest fan in the world; I’ve never even seen him live.

But he meant something to me.

Labyrinth premiered when I was 13. The combination of medieval scholar/screenwriter/Python Terry Jones, Henson sensibilities, and David Bowie rocked my young world. Is it a coincidence that I was coming into my sense of sexuality (aka puberty) just when David Bowie appeared as a sexy stalker/s&m king/rocker?

Of course not.

That man started everything.

I know the whole point of the movie is that Sarah learns about being strong and independent, but every single time Jareth/Bowie says, “I ask for so little. Just fear me, love me, do as I say and I will be your slave,” I say, “fuck, yeah!” (Coincidence that the Heathen album has a song called “I would be Your Slave”? I think not.)

My step-father took a strange pleasure in telling me that Bowie was gay when he learned of my crush (he was trying to crush my crush). I didn’t know then that Bowie was bi if anything. I just had my step-father’s word on things. Now, I was being raised in the South, being forced to attend Southern Baptist churches.

I know I was supposed to be disgusted. I don’t remember how long I ruminated, whether it was hours or days, but I do remember coming into the living room and announcing that my step-father’s news didn’t change anything. Bowie was famous; I had no chance with him; thus, who he loved didn’t matter in my life or to my crush at all. DSCN2007

I named my last little kitten Jareth.

I dressed as Jareth for Halloween a couple of years ago.

While wearing that Halloween costume, I first met my niece, Artemis. She was screaming at her parents, as one month olds are wont to do. I showed up in my costume and took her in my arms. She fell instantly asleep on my corseted-up breasts. The Goblin King is so good with babies.

My first piece of fan fiction (before I’d ever heard the term) was written when I was 13 or 14. I started writing a sequel to Labyrinth: Between the Stars.

After I discovered Bowie in film, I discovered his music, playing the albums my step-father had, and getting cassettes of my own when new stuff came out. Never Let Me Down (1987) was my first acquisition. “Beat of Your Drum” is one of my favorite love songs. “Time Will Crawl” is an apocalyptic masterpiece, and I sometimes listen to it when I fear my migraine will last “three long years.” “Glass Spider” is epic, despite its terrible intro. When Bowie was bad, he still managed to be awesome.

Like everything I love, Bowie intersects with my work. Years ago, I wrote a movie column: 13 Facts About Labyrinth. When I teach poetry, I always start with a couple of songs, to both demystify poetry and to encourage students to pay attention to words. “China Girl” is a staple of the lesson.

My work on Hanif Kureishi (I wrote the encyclopedia entry on him for World Writers In English) includes Bowie; Kureishi went to the same high school as Bowie and models a character on him in The Buddha of Suburbia. Bowie did the soundtrack for the film version.

When I teach Sandman, there’s Bowie–Gaiman had his artists model Lucifer on him. Gaiman also wrote a piece of fan fiction about Bowie.

In Y: The Last Man (another graphic novel series I teach and do work on), almost every man in the world dies in the same instant. One woman mourns when she realizes that all the male rockstars are dead. Grief is especially painful when Bowie’s death hits.

We’ll miss you so much. We are honored to have shared this time with you. Thank you for everything.

 

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The Continuing Adventures of Karma’s OnLine Dating (Entry 21): I Can’t Win

Misc–karmic mistakes?

I used to have a note on OKC saying that I would answer messages other than “hi” etc. Faithful readers know that this causes problems.
Thus, I now have a note on my profile explaining that I used to answer all messages, but that I have to be more discriminating due to the rudeness some guys exhibit. I apologized to awesome guys for letting the un-awesome guys wear me down, but still invited awesome guys without dealbreakers to message.

This morning, this was in my inbox:
“After re-reading you message me if, I just want to say. You kinda get what you put out there in the universe. With that said I think you may be getting what you deserve. not to be rude but we reap what we sow.”

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