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This is a story about what comes next. This is a story about a wolf eating me bite by bite, and licking his chops. 

No, no, no. It’s just that the word lupus lends itself to such beautiful and malevolent injury. 

But anyone living with disability and chronic illness–any of my fellow crips–will tell you that the lived experience is not beautifully dramatic. It is about mundane pain. It is about how pain becomes circadian and normal. It is about what humans can get used to–carrying glasses with both hands to spare the weight on your joints, the film of oil that accumulates on the stove because you can’t scrub it. 

It is also about what can’t be gotten used to. Daily pain doesn’t cease to be pain. The rhythm of hold back, hold back, hold back hurts. The closet hurts. If by used to one means “getting over” and “ceasing to notice,” this is a fantasy. Usually, a TAB fantasy from someone who isn’t willing to be with it. Mind over matter is another TAB fantasy. The idea of the indefatigable human spirit is another TAB fantasy. 
Content note: my doctors don’t know what the hell is wrong with me; lupus is just one option. There will be no answers for a long time. 

Claire Blotter:

I was married, and I was divorced.

I had three babies. I never had kids.
I never had sex. I had sex.
It seemed I never had sex,
that I was never divorced
nor even married.
It seemed that the three babies
who grew to adults
were never really mine.
I never “had” them, and
the sex it seemed someone else
had, when I remember it now.
I was never married nor divorced
nor did I have any children.
I never thought to have them or
simply never had them.
I had plenty of sex though
and sometimes, sometimes
simultaneously, I had love, too,
that frightened me, that I pushed
away as if it were a dark alley
rather than a garden of light.
But sometimes I allowed a few
white gold strands to pierce
the dark burnt blotches
of my heart, replace dried
branches of pale pink geraniums
with life. Yes, love restored me,
and coupled with sex, made me laugh
till my whole body shook.
Looking back, I was a man once, then
a woman, then a man, and a woman again.
I came simultaneously as myself, laughing.
Was this tantric, shape-shifting—
or shifting gender identification?
No, I was the darkness of my heart once,
then great rocking laughter of light.
I was the baby and the mother
at the same time.

I’ve been realizing why I can’t talk to people at work; both how odd and apart I am, and why.

When I started working here, I got hurt. And there was that terrible year of injury and isolation  and surgery and deep financial fear, and this–this university, this lab, graduate school–was the context of this trauma.

And I can’t talk about it with most people in my life. And I certainly can’t talk about it here, not only because talking about disability and poverty are both completely socially unacceptable in middle class America generally, and the ivory tower specifically, but also because it is to my professional disadvantage to reveal how difficult it is for me to work here. No one around me here has any idea that each and every day I have to balance the work I want to/ should get done with my physical abilities and pain that day, that I have to pace myself in ways they don’t, that my research is significantly slowed because of my physical limitations. 

So, I feel like I am in the closet here. Because I can’t talk about this elsewhere in my life either, there is a general closetedness in my life now. I could write, “I feel isolated,” which is true, but the truer statement is: disability is profoundly isolating.

At least with friends I can share some parts of myself. At least there the choice to reveal or not doesn’t have professional or financial ramifications.

But here–My disabilities are part of who I am, and I have to hide them here, and that means I can’t bring my whole self to work. I can’t be who I am here. I have to be in the closet. 

I am a pretty integrated person. And even more so now than five or ten years ago. This is a good thing in many ways, but it also means that I’m not good at splitting. I don’t know how to bring only certain pieces of myself somewhere. I don’t know how to compartmentalize myself.
It would be best for me professionally to smile, put on a happy face, talk about hiking and maybe fiction. I do occasionally, but most of the time, I simply can not. 

Work, of course, isn’t for showing your whole self. I don’t want to come here and talk about sex, or my childhood. My complaint is that I have to hide and lie here. I have to be in the closet. 

The only way I can do that is to shut off and show nothing. 

From “Monogamy” by Adam Phillips:

If you start life as part of someone else’s body, your independence is a dismemberment. Being a couple reminds us, persuades us again, that we are also someone else; of a piece with them. As everyone who is in love (or in mourning) knows, what is politely referred to as separation is mutilation. Growing up means becoming a phantom-limb; falling in love means acquiring one.

Jim Harrison, via The Art Divas:

After days of darkness I didn’t understand
a second of yellow sunlight
here and gone through a hole in clouds
as quickly as a flashbulb, an immense
memory of a moment of grace withdrawn.
It is said that we are here but seconds in cosmic
time, twelve and a half billion years,
but who is saying this and why?
In the Salt Lake City airport eight out of ten
were fiddling relentlessly with cell phones.
The world is too grand to reshape with babble.
Outside the hot sun beat down on clumsy metal
birds and an actual ten-million-year-old
crow flew by squawking in bemusement.
We’re doubtless as old as our mothers, thousands
of generations waiting for the sunlight.

You’re not allowed to talk about disability. It’s taboo. I’m more closed than I’ve ever been  because this fundamental part of myself is taboo. It’s not bad to be so closed, but it is a different way of existing for me. It isn’t limited to health and disability. The imperative to privacy has become part of my social existence in a new way.

I know this is redundant. I haven’t figured out the words yet.

This is part of the reckoning my social world after that terrible time of being out of school a few years ago. I am less explicitly bitter. I am more just living the results, closed in on myself like a flower at night. I’m more resigned than bitter, now. Still, this hit close to home, and makes me shake my head and smile in a wry way:

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My own pain has become so much better less interesting to me. I think this is because it is rarely new. I drop Jason off, and I don’t sit in the Jeep to feel the contours of my sadness. There is nothing here I don’t already know. The hole left by pulling out an attachment is like the hole in the soil when a tree is uprooted. I already know what it means to come home to a silent apartment, my towel on the floor where I dropped it while dressing, Apple core still on the cutting board in the kitchen. I know the start, stop, rewind of imagining a future, and then unlacing it stitch by stitch. I’m more nimble, now, and can yank the thread, undo a whole row of bites. I used to have to pull each one out with care, millimeter by millimeter, over months or even years. I stitch less and more loosely now, and that makes it easier.

And I’ve gotten better at heartache.  I know the pain is finite, I know I made the right choice, I know sometime my heart will rise at the sound of some other name. None of that is interesting to me, either. 

I don’t really talk about it with anyone. Who is there with whom to speak of it? And why? 

I meet friends and bring it with me, quietly. I get a bagel and eat, despite my stomach being turned with sleeplessness and jealousy. I read papers and write notes. 

I just keep going. 

I was thinking about the line ending, my line ending, if I don’t have kids. No one to tell a great grandchild that they were a good cook like me. An idle thought, driving home in the evening sun.

And then I thought: I’m not a line. I don’t have an ancestry. I don’t come from somewhere. I’ve never been told I have a trait like anyone before me, with the exception of my mother saying that I’m a good liar, like my father. I don’t know where my parents came from, or why they fell in love, or why they didn’t work. I don’t know where their families came from. I know nothing. I know nothing, and the knowledge would be meaningless, anyway. Too many steps removed, too many people removed, people I never knew or saw or heard of.

I bought myself tulips because I am finally that far away from the parents who raised me. I am finally far enough away that tulips are just bursts of color that look like the women’s skirts on my new painting. They are no longer the flowers my father bought my step-mother nearly every week. They are no longer her favorite.

I’m not a line; I’m a dot.


Tony Hoagland:

I like that, he said in the hospital, where I was rubbing his feet
which were dry and smelled a bit.

Ahh, he said, ahhh, as I worried
what the nurse in the corridor might think,

pushing my thumbs into the pads and calluses,
the skin that had grown leathery and hard

over a lifetime of streets and shoes—

and me trying but unable to forget
some of the things he had done

over the course of our long friendship.
Rubbing his feet was like reaching into some

thick part of my heart that couldn’t feel
and kneading away at it—

Blame caught inside the love
like a fishhook, or a bug in honey.

It is in my character,
this persistent selfishness—

one of my hands offering the gift,
the other trying to take something back.

Giving and getting
like two horses arriving at the same time

from opposite directions
at the stone gate

that will allow only one to pass.

Christopher Citro, from The Rattle: 

I’m doing a balancing act with a stack of fresh fruit
in my basket. I love you. I want us both to eat well.
We’re not allowed to buy blackberries anymore
because they’re mean to their workers and you
read left-wing news sites. Till when? I asked and you
said nothing. So that’s one healthy food off the list.
I’m still buying pineapples and you’re still eating them.
I guess you’ve never seen the websites about those.
Nobody in this supermarket knows that I am a puma.
This morning our cat rolled on the floor showing me
her belly which I leaned down and rubbed.
Beneath a backyard pine tree the neighbor’s cat
was eating one of our cat’s moles—at least the moles
we rent from the landlord for her. It’s so complicated
staying alive sometimes. The voices of the collection
agencies on the answering machine sound menacing.
They’re paid to sound that way and they’re not paid
much more than the people they’re menacing,
which can get you thinking if you’re the sort of
person who likes to think about that sort of thing.
Other people subscribe to adventure cycling
magazines and read about men who rode across
Turkey in the late 1800s before anything was
happening in the world. Before cantaloupes
probably existed. When you could get an honest
wage for an honest day’s blackberries. When we
loved like fierce mountain storms, with the blood
of eagles in our hearts, exchanging grocery lists
that just said you you you you all the way down.

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