Friday, January 11, 2019

Health update: loops and spirals

A few days ago, our cat Abby "discovered" one of the toys our cats got for Christmas, thanks to my Mom: a little plastic spiral, simple as can be but apparently Very! Exciting! on a grey winter afternoon. She batted at it, bit it, pushed it and ran after it, jumped over it, and generally made such a commotion that our other cats became curious and started playing with it, too. A good time was had by all! It was funny that the toy had been sitting around for two weeks without the cats noticing it, apparently, and then suddenly it was a Fabulous Thing.

Abby and her new toy. Thanks, Busia!

Around that same time, I got some test results, long awaited, from the Cleveland Clinic: the more accurate (and expensive) bloodwork than the test I had done before showed that I have four tick-borne diseases, including Lyme, and the CC lab also showed that I have four "co-infections" as well. The Lyme spirochetes are floating around in my system, burrowing their spirals into my organs, my brain, my white blood cells and red blood cells, making themselves at home in my body.

Lyme spirochetes, Borrelia burgdorferi
Content Providers(s): CDC [Public domain], via Wikimedia Commons

I feel validated--in part because I now have labels that I can produce when I tell medical professionals and insurance workers that I am sick and exhausted, that I feel terrible, that I am disabled, that my body struggles with the everyday tasks of being a grown-up human (cooking, showering, working, thinking). I have diagnoses to point to rather than being a medical mystery.

I also feel like my immune system is kind of badass; after all, it took EIGHT infections to take me down! And that's on top of thyroid problems, an autoimmune disease or two, and Epstein-Barr! My body worked really hard for a really long time to operate despite these problems, and it did a damn good job--I have (had) a career, I ran and rode horses and did yoga, I wrote things, I traveled, I learned things, I raised a kid with my partner. My body is amazing!

At the same time, I am feeling a certain level of dread. It's Lyme, after all, which is "controversial" in its diagnosis (one reason it took 3 years for someone to order the more accurate blood test, which insurance does not cover), and in its treatment. (Here's an article that details some of the weirdness of having Lyme. I can also tell you that the closest "Lyme-literate" doctor--someone who has a clue about the latest research, which is changing swiftly--who takes our insurance is a 1.5-hour drive from here. The one closer to us, in Columbus, doesn't take insurance; the first office visit costs about $800, and that's without any treatment or testing.)

It's highly likely--pretty much certain, actually--that my trajectory from ill to well (or at least better) will look nothing like a straight line. I will most likely need to try something, see if it works, try something else, try a combination of things, try again, go into remission, experience a flare-up... Loops and loops of therapies, care-taking, ups and downs, good days and bad days.

I have long loved the image and metaphor of the spiral--coming back around to the point you saw before, but from a new perspective, the past carrying an echo of the present which in turn echoes into the future, like the seasons each year, or like rereading a favorite book. Looping back to a place you've been before, but with new experiences and new knowledge. Dancing a spiral dance and looking into the faces of your beloved friends, winding and unwinding connection and then winding it again.

Fiery spiral
from the blog Ideas on Fire, which looks pretty great...


So today I am wondering how to take in and process this news about the spirals in my body that I will try to expel, and about how to proceed when I can't see around the bend. About how to hope for better times, if not resolution. About how there's no way to go but forward.

May you find peace today,
Karen

Sunday, December 16, 2018

Christmas visitation

I'm not sure why I'm posting this blog entry, except that I feel compelled.

The other day I went to a doctor appointment. I sat next to a Christmas tree in the waiting area, and looked around at the wreaths and other decorations as I made my way to the examination room, and then the lab (for a blood draw). One of the office workers had a radio on, tuned to a station playing Christmas carols.

At one point, an older woman walked by; the scent that followed her was delicate, but hit me right in the heart. It told me, in less than the space of a blink, "Grandmom Poremski." A feeling of love swept through me, and I found myself smiling even as the tears started, thinking about holiday traditions at her house--the afternoon dinner, the candy and cookies she made, the visits we'd have at her house with cousins and aunts and uncles. Her smile. The songs she liked at mass.

The Goralski sisters and me on my wedding day:
Aunt Agnes, me, Grandmom (Marie), and Aunt Frances.


I like to believe that our ties with loved ones are not severed, even after death. I like to believe that, in the moment I was reliving those memories, Grandmom was with me--the part of her that nurtured and loved me and planted itself in me bloomed, always there hidden but visible for just a moment.

I hope you have the chance to visit with your loved ones, even if not in person.

Karen

Tuesday, October 2, 2018

On silence and speaking

A lot of my beloveds turned their profile pictures black yesterday on Facebook. It's a powerful visual signal--black evoking darkness, silence, dread. It reminds me of the photos I've seen of protesters at the Supreme Court the past two weeks, women with black tape over their mouths, veils over their heads, being led away with their hands cuffed behind their backs. (Go here for a photo.)

Living through the news the past few weeks has meant, for me, reliving my experiences of being a high school and college student in the suburbs of D.C. in the 1980s. I am a contemporary of the people testifying before the Senate; their words have brought back so viscerally the atmosphere of power and privilege, the desire to be in the "in" crowd, the necessity of conforming to certain styles of dressing and talking and behaving. Even at my high school--a public school, in the "wrong" county--we mimicked the boat-sailing preppies in their pink Oxford shirts and topsiders.

Or at least I did up until 1980, when I discovered punk rock and decided that if "normal" meant adopting the values of the people in power--the ones that put profit ahead of people, and that brought us to the brink of nuclear annihilation--then I did not want to be normal. I decided, at the beginning of my senior year, to wear black every day. Not necessarily all black, but something black, every day, as a kind of visual protest, a way of saying no without having to say a word.

So I was inclined, at first, toward joining the "blackout" on FB. Early notices said that our black profile pics would be accompanied by our silence--women not posting anything, not explaining anything, just metaphorically disappearing and being replaced by a black spot. But a friend of mine expressed her objection: we have been silenced enough! Why should we silence ourselves? Isn't it men who should be silent now, and listen? Why should we make it easier for them to dismiss us? Her arguments were compelling.

I have a "Me Too" story, though it was only an attempted assault, hardly anything when I think of the pain and terror others have been through. My story involved a requirement to speak, again and again--to the RA on duty in my dorm, to the police officer who was called, to the courtroom full of people listening to my testimony weeks after the incident. Other women in my dorm who had been touched, groped, kissed by this stranger on that same night opted not to come forward--which was absolutely their right. But I was too angry to let it go; I did not think it right that a man could trespass in my home--no matter that it was a residence hall of cinder blocks and linoleum--and put his hands on me and say those nasty things he planned to do to me. If not for my anger, for my insistence that this was wrong, he would have gotten away with it. The process required that I show up and speak, again and again.

My friend's comment also made me think of people who are, in fact, standing up and speaking--screaming, even--to be heard: my beloveds who are Queer and Trans and shouting for someone to pay attention to the ways they are abused and hurt and killed; my Indigenous beloveds whose sisters, mothers, daughters are becoming the Missing and Murdered Indigenous Women their deaths going unanswered by our justice systems. And I have learned, now, that some of my beloveds who are men have been assaulted. This is not just about (white) women; there are so many whose voices we have not listened to.

And then I remembered something else from the 1980s: the phrase "SILENCE = DEATH" and the posters of Act Up (the AIDS Coalition to Unleash Power), a symbol that reclaimed the pink triangle and black background as they insisted their voices be heard; organizers wrote, "silence about the oppression and annihilation of gay people ... must be broken as a matter of our survival.Silence was literally killing people.




We need something like that for the survivors of assault; we need survivors to be visible, and heard. We need something loud enough to get through to those who are discounting or ignoring the stories of survivors. All the different ways we become prey to hatred and dehumanization are unacceptable. We need to speak, and we need to listen.

Lately, I have been thinking a lot about the stories of the goddess Pele, and how she speaks, exploding with fire, raining down destruction. Lately, I feel less like shutting up, and more like speaking like Pele. We need a cleansing fire to burn away the lies and reveal the truth. And after that, maybe what's left can be the start of something new; maybe when the fire cools we will have a place where new ideas can grow--about what power is, about who is human, about how we treat one another, about what bodies are for.

May you speak today.

Love,
Karen

Friday, August 24, 2018

Difficult truths

Earlier this week, a storm came raging through, bringing tornado warnings and ushering in volatile winds that dramatically changed direction--in the morning, coming from the south, and in the evening, the northeast. Within another day, the weather cleared, the oppressive humidity of the last month broke, and we were left with a perfect autumn day: dry, sunny, breezy, the crickets singing and crows squawking.

Back in the late 80s, when I worked in D.C. after graduating from college, this was the sort of day that would make me long for school again, envious of my friends who were starting new adventures and learning new things. Sometimes I think this yearning played a big part in my going to grad school, and pursuing a career in higher education--to be able to start a new year every fall! The wonder of it!

This week's perfect autumn day just happened to fall on the first day of classes. And I stayed home: I'm on sick leave again this semester, still experiencing daily pain and exhaustion to the point where going back to work would be a huge mistake.

It was a difficult decision to make; there are financial implications, not to mention having to admit the seriousness of what's happening to me. It's truly scary, on lots of fronts. But in the end, it felt less like a decision and more like facing the truth: my body can't sustain going back to work.

So I'm staying home, wondering about all the wonderful things happening on campus--ideas being thought, expressions finding their way into writing or paintings or movement, connections between people being forged, new ways of seeing the world being discovered. I am missing them all, but feel right that staying home--resting, continuing my treatments, seeking new treatments--is what I'm meant to do.

Sending love and light to everyone starting a new academic adventure!
Karen

Sunday, May 27, 2018

What can I do?

I have two main projects today: a) don't get a migraine; and b) figure out what I can do about the intolerable situation of 1,500 children being "lost" by agents of our government. It was already intolerable that children are being separated from their families by agents of our government, which means more of them are treated as "unaccompanied minors" in judicial proceedings; now this, too.

I think my two projects are related. Every time I think about the children and their parents, I get dizzy and short of breath. I feel like my blood is thinned somehow. I am having a visceral physical reaction to this news.

Part of the reason: I am a scholar of American literature, from its beginnings to its present, and therefore think about a lot of moments in U.S. history that most people haven't thought about since they were in high school--or, more commonly, that most people have never heard of.

I know what happened during hundreds of years of chattel slavery; I know what happened during more than a hundred years of Indian boarding schools, and adoption policies that stole Indigenous children from their people. (This problem was so bad that the U.S. government had to make a federal law about it--in 1978. And just a few years ago, the state of South Dakota was sued for violating this federal law. So this particular problem is ongoing, friends.)

I know how this story goes; I know the horror of its details, and the trauma it will cause, not only now but in generations to come. I read stories and poems, some by the children and parents who live this nightmare, and some by their descendants.

I want a different ending, but I don't know what to do. So I'm going to try these actions, and am sharing them in case you'd like to try, too:

-- call the office of Senator Rob Portman (R-Ohio); he is chair of the Senate's permanent subcommittee on investigations, which has already pressed the HHS for solutions to this problem. Phone 202.224.3353 (DC office) or 614.469.6774 (Columbus).

-- call your congresspersons and demand they call for policy change, investigation, accountability, anything. Ask them what they're doing about this problem. The main switchboard in DC is at 202.225.3121 for House of Rep.s and 202.224.3121 for Senators. The people there can help you get ahold of the right offices. Or you can check these websites to find your senators and find your representative.

-- if calling people on the phone gives you the willies, you can use the script prepared by 5calls.org.

-- two recommendations from politicalcharge.org, shared on FB by my lovely friend Fiona Pearson:


  1. The ACLU is gathering signatures to petition Kevin K. McAleenan, Commissioner of United States Customs and Border Protection to stop the government from abusing immigrant children. You can find the petition here.
  2. You can contact ICE (Immigration and Customs Enforcement) directly. Write to them here or call them at 1-866-DHS-2-ICE.

-- talk to family members and friends, especially those who voted for this racistass president, about what's happening.

-- other things I will be doing today: sending good thoughts/praying. Sending love, love, love out into the world. Sending my wishes that those in power will really see what is happening, and practice their empathy skills.


The past year has dulled my confidence that telling my elected officials what I think will actually create change. But really, doing nothing would make me sick. I know too much to stay silent.

May you be well today,
Karen

Sunday, April 1, 2018

I plan to sing along...

One of the chapters of the book of essays I'm reading right now* starts with the line: "Tell me a story you know by heart." As it happens, the 1970 version of Jesus Christ Superstar is a story I know by heart--its words, notes, rhythms, its instrumentation and voices. Tonight, when the live version airs, I'll be singing along.

When we were kids, my sister and I used to spend one weekend a month at my Dad's house as part of the custody arrangement after our parents' divorce. Until I was 13, he lived in a rowhouse in Baltimore, spare of furniture and food in the fridge, but thick with associations of our childhood; it was the place we all had lived before our parents split up. I still remember the wallpaper in the room my sister and I shared when she slept in a crib, the bathroom where Dad kept the ever-useful Mercurochrome, and the room on the third floor where my Mom had made a collage on the wall of images she cut from magazines.

One of my Dad's prize possessions was the stereo, which I remember being huge, a piece of wooden furniture that opened on the top to reveal the record player inside; it had black-and-gold woven fabric on the speakers that looked like upholstery. I usually joke that he had only three records at his house, where there was no TV for entertainment, so we pretty much memorized them: Carol King's Tapestry, the original London recording of Jesus Christ Superstar (not the film soundtrack), and one by Herb Alpert and the Tijuana Brass (which one? I can't remember. But sometimes we could get my Dad to take out his saxophone and play along.). Now that I think of it, he probably had more records than that, but maybe those three were the only ones my sister and I were interested in hearing.

Listening to JCS recently, I thought about how influential that music was. What it meant for a child to encounter this way of telling a story central to my family's Catholic belief:

-- This version of the story is a political one, where the people in power are worried about the masses rising up and throwing off their oppressors. (Definitely not the slant of the story I was told in Catholic school.)

-- This Jesus is human. He is frustrated with his followers ("Look at your blank faces / my name will mean nothing / ten minutes after I'm dead."), tired of everyone asking him to solve their problems ("Heal yourselves!"), worried about whether what he did would matter ("will I be more noticed / than I ever was before?"). He is angry and afraid. His voice ranges from soft and tender to panther-like screams. He is more like us than the Jesus I learned in school.

-- Jesus is willing to go through with it, to let God (the real force behind everyone's actions, the only one who knows the plan) torture and kill him even as he feels fear and doubt. Even now, when I get to this moment in the soundtrack, I have to stop and just breathe.

-- The music surely influenced me--unusual chord progressions, unusual time signatures, a frenetically chanting chorus, wailing guitars and an insistent bass line, sudden silences. The organ's brassy tone sounds like a classical church organ but it's mashed all in with the rock instruments. The opening to Judas's first song is still compelling to me, still speaks of movement forward, something important beginning that will bring the world of these characters spiraling out of control.

-- And while I'm thinking of Judas: he is a complex character, the costar of the story. His reasons for being afraid, for doubting the direction of their project together, seem totally reasonable. The story I heard in school focused on his wrong-headedness, his duplicity and intent to hurt Jesus. In the JCS story, Judas loves Jesus, and is doomed to by his love to play a part in everything coming undone.

I don't know if my parents thought about how much this record would influence my thoughts, beliefs, musical preferences; how could they have? We never know what sticks in the mind of a child, for better or worse. And they had so much else to worry about, as we grew up the only kids we knew with divorced parents. They were navigating a space unknown to anyone around us. I admire them for how difficult that must have been.

I plan to sing along tonight. But maybe quietly, as I see what this new production has to say about a story I know by heart.

May you sing something good today,
Karen

* I can't say enough good things about this book, Joni Tevis's The World is On Fire. If you like lyric essays, run right out and buy it now! Some of them are so intense that I have to let the book sit for a while before I move on to the next one.

Monday, November 20, 2017

That feeling when

you wake up from a nap that you decided to take because you couldn’t remember the word “scatter” for several minutes and anyway that stack of student papers can wait until later in the afternoon or maybe until tomorrow, and fighting exhaustion gets old after a while, after months and months of it sometimes you let yourself give in and burrow under the covers into oblivion until a cat comes to lick your eyelid.

So you wake up and wonder if there’s news about David Cassidy because he was your first crush, or anyway your first celebrity crush (there was that boy in first grade), and you find out he is still alive, still fighting, but you know what multiple organ failure means, and you know what “critical” status means thanks to December 1983 learning all about shock-trauma, and you imagine what his family members are doing, mostly crying in places that smell of disinfectant and then the weird moments where something is funny and they’re laughing and they think god, what a relief, and anyway if he were awake, if he could talk with us, he would laugh, too.

And you look on Twitter and accidentally find Shaun Cassidy, your other crush, the one you were devoted to after his brother disappeared for a while from the public eye though maybe you should have been too old for a celebrity crush at that point, but real boys were too scary and likely to make fun of you besides, so Shaun was a safe bet behind the tv screen, in the magazines, singing on your record player, trapped behind the shiny surface of the posters on your wall, and you imagined he would not mind that you wore thick glasses, and you noticed he was also kind of shy, less shiny than his brother (despite the satin baseball jacket), less outgoing and with a voice that had a roundness to it, like you imagined his butt did.

And you decide to look at his Twitter profile to see what he’s like now, and maybe he has aged well but you can't tell, that profile pic is so tiny, so you look at the Tweets and right there near the top is something he RTed that at first looks like support for the tax bill and your heart sinks because oh damn, he’s a Trump supporter, but then you read it more carefully and see that it is a joke, a rallying cry for this tax plan “for the people” only it’s the people who own private airplanes and want their deduction or else they will march in the streets so this means even though he’s rich, he’s got to be rich from that teen idol money, right, and anyway he has done other things since then in show business, behind the scenes, you remember hazily, but even though he’s rich he doesn’t support that horrible man and those horrible policies, so you keep scrolling and reading.

And you think: he seems like a nice guy, and you notice that’s surprisingly good to think about, a relief that has caught you unawares, and then because of the news lately you wonder if he has sexually harassed anyone and you hope not because Jesus Christ, internet, just give me this little small thing, just give me being able to feel secure that he’s one of the good ones, like the one who loves me, let it be true because you can see that he has kids he reads to and he loves the Dodgers like your friend the composer who is smart and funny and he has a sense of humor and is self-deprecating.

And you scroll down further and see that one of his Tweets uses the hashtag #WhyIWrite so he is a writer like you, yes, go ahead and say that, you’ve earned it by now, go ahead and claim it and know that you and that man whose lips you dreamed of kissing decades ago when you had never kissed a boy are both middle aged and have this thing in common, the struggle and frustration and mystery of putting words on a page and feeling good when it’s working.

And you remember where he is. And you remember why. And you send love as in a prayer of comfort this time, not desire. Love because none of us will escape heartbreak and loss. And all we have nowadays anyway is love. Go ahead and send it to this stranger.