There's a mustard yellow, velvet chair that's deep enough for me to put my feet underneath myself when I sit in it. It's next to our living room window, and it gets alot of light on sunny days. It's where I often sit when I have phone sessions with my therapist, it's where I used to sit to meditate, and it's where I like to go when I need some time to myself, to read, to write, away from the TV that's always on in our bedroom since its on/off switch broke off. (It's old. )
This past Saturday was a freakish 77°F, and mostly sunny. I'd known about the forecast since Monday? Tuesday? and I'd been looking forward to possibly getting out somewhere in my powerchair to enjoy it before the return of our regularly scheduled 40°s and 50°s rainy days. Unfortunately, the night before, my heart rate had stayed hovering somewhere between 102 and 118 bpm for hours, leaving me dizzy and with the worst migraine I'd had in weeks. On Saturday, I was still wiped out and didn't get to go out to enjoy the weather. Instead, in the late afternoon while our south facing window still filled with Springtime light, I sat in the gold chair, my legs folded beneath me, my lap covered in a burgandy throw my mom sent us years ago.
Chronic illness has a way of reconfiguring our desires. Three years ago, maybe two? full of the urgency of a first hot Spring day, I would have been on my way to Riis beach with my bestie, a backpack of snacks and my usual Riis look of a short skirt, a bra and my punk vest. These days were the days I lived for, the chance to see and be seen by the Riis Queer-noscenti, and to feel the warmth of the sun and of the community.
I still miss this world so much, but it's become so much harder to access. I rarely have the spoons to be social anymore, even though I miss my friends. Even more, I miss myself. I know that sounds corny, but I miss being the Sarit who goes to shows, who goes to Fat Femme Clothing Swaps, who works (I don't miss sex work itself, but I miss so many things that it gave me, ) and who goes to Riis.
My world has become small. Being able to shower, get dressed and take my powerchair to the supermarket up the street feels like a huge outing, and tires me out like a huge outing.
I've had short periods since I got sick where I felt honest to goddess close to normal, and I've learned to never take them for granted. When they come now, whether they're a day, a week or a few hours, I treasure them and do everything in my power to make the best of them. But they're rare.
For now though, I look forward to warmer, sunnier days, and I'm grateful for my velvet chair by the living room window.

"May the bridges I burn light the way"
-Dylan McKay, Beverly Hills 90210
...
May the bridges I burn be well selected for burning.
May I have done due diligence, checking that they might not have- with some care and repair, continued to serve as good connections.
If the above is satisfied, and only if,
May their embers float harmlessly into the sky
never to burn me or trouble me again.

Today is yom hashoah, Holocaust remembrance day.
I was born in 1968, 23 short years after the end of the Holocaust. (For comparison, 9/11 was 17 years ago. Think about how close that feels.)
I grew up surrounded- and I do mean surrounded, by living survivors, some of whom were younger than I am now, hearing their first hand stories of life and death in the ghettos and camps. None of the movies I've seen, and I've seen pretty much all of them, even came close to touching on the horror of these accounts: the violence and egregious sadism enacted upon women, children, men and families is somehow uncaptureable on film.
I've heard first hand tellings of infants ripped from their mothers' arms, and literally, physically ripped apart by laughing SS guards before their suddenly silenced bodies were tossed onto a pile; I've heard first hand accounts of witnesses who watched as a young SS sat casually on the edge of an open pit, a cigarette dangling from his lips as he fired a tripod mounted machine gun into line after line of the naked bodies of Jewish fathers, mothers and children who held hands for the last time.
I carry these and other painfully lucid memories, many of them as if they were my own. I am a child of these stories. For those of us who are aware, we're watching what looks alot like a repeat of what led to the first Shoah.
This is why we say #NeverForget. #NeverAgain.

I've made and worn punk vests since I was 15.
My first, a bluejean jacket I'd cut the sleeves off of, thick layers of acrylic paint stiffened the back until caked with South Florida sweat, it would stand on its own, leaning lazily in the corner of my North Miami Beach bedroom.

Recent vests have been yellow floral, blue pokadot, blue or black denim, trimmed in lace at the collar and pockets and/or pierced with pyramid or arrow point studs, and held together with silkscreened canvas patches stitched on in dental floss. My most recent was half of a 50.00 gift card, bought at the Fulton Street Macy's in Downtown Brooklyn. It's black, has been kept relatively unadorned except for a back patch that says "Believe Survivors", one pin that says "Black Lives Matter", another that says "I can see right through your bullshit" and a third that simply says "End Violence Against Sex Workers".
It has pockets, allowing me easy access to my phone, my wallet and a knife without having to go into the backpack on the back of my wheelchair. This vest is largely utilitarian, and I almost always wear it because of that, even if it doesn't quite go with whatever else I'm wearing.

Today my therapist and I were talking about survival. I was talking about how ill at home I feel in my sick body so much of the time. About how I spend so much of my time dissociated from my body, especially when I start to bleed heavily from places I shouldn't be bleeding from, or when my illness becomes apparent on my skin in visible rashes like the Bartonella rash I have right now on my left tit.
I recognize my own internalized ableism in this struggle, as well as the privelege and costs of living with largely invisible illnesses.
We talked about the time two or three years ago when assaulted on 6th Ave, I spun around and for the first time in my life, smashed the nose of the man who'd violated me, and we talked about the very different kind of vulnerability of being in a wheelchair, strapped to the floor of a bus when a man with beer sweat and visible and triggering masculine anger demands my attention. We talked about the particular kind of vulnerability that existing as a Femme in a wheelchair in the world entails.
We talked about the way that for most of my life when my agency had been violated, I'd disappeared into suicidal ideation or attempts, and how- now that I've decided to survive, to make it to at LEAST 50, that's no longer an option or a comfort. We talked about how scary that is.
Today, she told me I was one of the most resilient people she'd ever encountered in her practice.
While my imposter syndrome did acrobatics to argue and disprove her assertion, part of me felt seen and validated. I realized that I am resilient.

At 15, my punk vest was my armor. Its stiffness and weight were reassuring to my queer, autistic, depressed, trans, extremely sensitive, scared, scarred and embattled body.

Tonight, I wrapped myself in my therapist's validation. This feels like the most fitting punk vest I've ever worn.

Mouse

Turns out, you were right to fear us afterall,
Even with our best intentions, we broke your fragile back.

In mystical Judaism,
Each time one is very sick, or
Faces extreme, threatening adversity,
One is given a
New name, to add on to the names one was given when they entered this world
[adversity some might say in its own right]
I have so many names
Each one the hope of a
New life
Was once Avram Tzvi Ben Aryeh Leib
Now Sarit Michelle Ben-Aryeh
I will collect one day,
A hundred names
I know I will face a
Hundred adversities
Let my names then fill a page
Let my lives fill a hundred books

In Gratitude

When I got my new powerchair
I wanted her to feel like mine
Like
Some extention of my being
Legs because mine no longer work the way they did, or
Wings because I never had them to begin with
Except I did
I didn't know that my ancestors had carried me for a million years already
Would carry me for a million more
When I got my new powerchair
I wanted her to feel like mine
To name her and so I went to my community
The ones who'd given her to me
And I asked them
But none of the names felt right
Until I thought of what she does
What she is
Like my ancestors- those who've taught me/who teach me how to live in this new body
She carries me
And that's what I'll call her
She Carries Me

For every hard assed, soft hearted Femme who has other Femmes' backs when the shit goes down

For every Femme who already knows, who teaches others that there's an "after this" where the air is still clean

For every Crazy, Sick and/or Crip Femme who spends precious spoons just to stand with other Femmes in crisis, or even just reaches out to say "I see you"

Thank you.
I see you too.
And I love you with
All I've got.

Head back
Arms out
Legs kick
Kick
kick
Gulp air
Hold breath
Waves crashing overhead again.

Give me new faith shine
Something on me
In me
Give me new light
This dusty carcass is crumbling and only the darkness shows through its holes
Give me new light
Shine in Shine out
This
Dental floss sewn duct tape sealed shit can't carry me much further

Tits and Sass By and about sex workers The End of The Life: Leaving Sex Work Because Of Progressive Illness

My newest piece, published in Tits and Sass:

This is a hard piece for me to write, because everything I’m about to describe is still very fresh.

Two years ago, the all-over body pain and extreme exhaustion I’d been dealing with began to become more common. But I was still only using my cane sporadically, allowing me to work the stroll and occasionally go on outcalls from Backpage.

The doctors had confirmed fibromyalgia, as well as chronic fatigue syndrome. At the time, these diagnoses felt validating. The body pain, the spasming tendons and odd stabbing pains that I could name—this one felt like a rusty railroad spike going up through my foot, another like a piece of rebar traversing my torso diagonally, another like needles being shoved under my fingernails—were not my imagination, nor was the exhaustion that kept me sleeping for 19-plus hours a day, often for weeks at a time.

I was still occasionally able to make it out without my cane at this point. It had become a comfort and it provided a sense of security, a way to signal a request for patience when I was unable to move as quickly as others, and it allowed relief from the pains that shot like lightning up the bones of both my legs. But I knew that as a fat, tattooed, (although cis passing) trans woman, the cane would work against me on the stroll. Though I was 47 at the time, I easily passed as closer to 30 (the “Trans Fountain of Youth”?). But sex work is mean. Anything that detracted from cis-hetero-able-bodied standards of beauty meant lost income, so I leaned a lot. I’d stop by the church gates and rest, half-hoping I’d go unnoticed so I could regain a bit of my strength, half-hoping I’d be noticeable enough to catch a car date without having to move to more lucrative stretches of the stroll.


About nine months ago, a friend in one of the sick and disabled communities I’m in on Facebook suggested that from the sound of my symptoms— in addition to those listed above, I’d developed brain fog, my exhaustion was becoming markedly worse, and I suffered from dizziness, cracking and popping joints, arthritis, and more, that I should be tested for Lyme. Since Medicaid and most insurances don’t cover adequate testing, she offered to pay the $256.50 to cover my test through IgeneX. I took her up on her offer, and sure enough, I tested positive for not only Lyme, but Babesia, Bartonella, and later, through other testing methods, Mycoplasma, Candida, and heavy metal poisoning. Lyme Disease is a tick-borne autoimmune disease; once you’ve got it, your body is open to countless other comorbid conditions.

They say the first year of treatment is the worst. That the die off, especially of Lyme bacteria, is slow and releases toxins like ammonia into the body, exacerbating symptoms. For the past nine months, I’ve slept an average of 22 hours a day, five-six days a week. I’ve developed POTS, Postural Orthostatic Tachycardia Syndrome, a condition whereby when I go from lying down to sitting or standing, my blood pressure suddenly drops and my heart rate soars to triple digits, often resulting in immediate black-out fainting. Most recently, I’ve begun suffering from MCS, Multiple Chemical Sensitivity. I can no longer tolerate exposure to most artificial and some natural scents without my lips, tongue, nasal passages, skin, and throat burning, and dizziness and a pounding migraine developing within seconds of exposure.

It’s this most recent development that’s been the most life changing in terms of my ability to return to the stroll. Until I developed MCS, I held onto the hope that after this first year of treatment, the “hell year”, I’d be able to go back to work. But let’s be real here; men do like their scents, don’t they? If they bathe at all, they seem to love their Irish Spring, or other deodorant soaps, not to mention Axe (the worst!) and cologne. Even something as seemingly innocuous as the detergent or fabric softener used to wash their clothes can set off a profoundly debilitating reaction in me.


Not having enough spoons. (Photo by Flickr user Iris Slootheer)

This all feels so raw. It was just this past week that I had to buy a respirator mask just to go through the lobby of my building, where the super has placed a plug-in air freshener, and the elevator, that’s mopped daily with something heavily scented.

It was also within the last couple of days that I realized how bitterly ironic it is that I, like many of us, came to sex work because of a lack of privilege, as well as the confluence of mental illness, autism, and chronic illness that precluded me from being able to hold down conventional employment (I’ve literally never not been fired from a civvie job). Now it’s a chronic illness that’s making me unable to stay in sex work.

I can’t begin to say how heartbreaking it all feels. It’s like the end of a life, and I’m afraid of losing closeness with so many people who’ve become my chosen family.

Sex work has never been easy for me; being very niche, I’ve never been high volume. It was never empowering, but as a crazy, autistic, chronically sick and crippled trans Femme, it was a way for me to cheat capitalism a bit. It helped me do something that people like me aren’t meant to do in this world: it helped me breathe. By simply sucking cocks in a dark car, I was able to make something above the bare minimum that I get from SSI. Sex work was access in an inaccessible world. What’s more, it’s given me a community I’ll always treasure and support in any way I can.

The sad and ironic thing is that what brings so many of us to this work can in so many cases be exactly what eventually makes it impossible for us to carry on.

There is no safety net for most of us. There’s no such thing as a union or pension fund. But maybe there can be. We’ve built support collectives like Lysistrata, following historical models like the Workman’s Circle and the Black Panthers in attempting to create self-sustaining funds for our marginalized community the way they did for theirs. Maybe one day these things can become the space from which we build a fund to support not only workers who are struggling, but those of us who have lost our able bodiedness and had to retire. A whore can dream.

For Leah Lakshmi Piepzna-Samarasinha
1.
"If I'd've seen you someplace, I'd've thought you were a straight girl" was the day I went home and shaved half my head
Undercut
"Femme Visibility Cut"
7 months later for my birthday, I got the word, "Femme" tattooed in black above my cleavage.

2.
When I met you at Bluestockings, we had the same haircut
Proud gray roots
#FemmesOver40
But yours was dyed pink at the ends, and on your chest,
Where mine said "Femme" was the word "home"

3.
I'm sitting at a table in the Met Life building in Midtown Manhattan, waiting for the charger port on my phone to be fixed. My overwhelmed autistic ears are stuffed with rolled up halves of a paper napkin, an insufficient measure to block out the large wall mounted TV tuned to CNN, and the men around me taking up too much space with their voices.
I've been re-reading "Love Cake", and I'm writing this longhand on a piece of stenographer's paper with a pen I borrowed from the front desk on top of its cover.
In the picture inside, you have a full head of hair, and I wonder if someone once made you feel invisible. I want to tell you, that even without the undercut, the tattoos or the "switchblade hip switch"
If I had seen you in the wild
I would have seen you right away
Queer, Brown, Hard Femme
Because we are not invisible
We take up more space than these chattering men, CNN and Midtown put together
Just by being the
Unbreakable bitches we are
But until I picked up your books,
Found your words when I lacked my own
I might never have discovered this Femme/home.

When Tired began for me, I didn't know the language to tell you
Tired
Like an 8 hour shift as the "sandwich specialist" at Burger King
Covered in grease and sesame seeds, with a 2 and a half hour bus commute both ways in the South Florida heat
Tired
Like the time I broke down sobbing in the Galil- that riverbed hike through the mountains, over slippery rocks the size of Volkswagen Beetles
I didn't know yet I was sick then
Only that my body was giving up
Tired
Like waking up now Taking shower Brushing teeth and collapsing twice on the bed between steps to pant for half an hour
Tired
Like smiling and saying everything's ok
I'm fine
I'm so glad to be here
I've missed you
Because I am
And I have
And I don't have the strength to shoulder your guilt
When Tired began for me
I didn't know the language to tell you
That there is no language for this kind of Tired
But drowning
Slowly
Too much effort to fight for air.

For all the sick and crippled Brown and Black queers still awake at 4:47 AM on a Thursday

In Praise of waking up- or more accurately still being up at 4:47 on a Thursday morning
In Praise of IBS with cramps that threaten to send bodily waste out both ends at a time, and make you think of that scene in Braveheart when Mel Gibson's guts are being pulled from his living body and wound around a spiked and thorny skewer; he was an amateur. (We know this.)
In Praise of cracking knees, popping elbows, shoulder joints that no longer rotate and the pain that reminds us of that when we try to put our bed-side arm up under our pillows so we can lie on our side
In Praise of Herxing, with daily migraines, dizziness, hives and hands so swollen you can barely bend your fingers
In Praise of shit that smells like ammonia
In Praise of boldly canceling plans at the last minute because you're not sure which tricks your body is going to play on you today, but you're pretty sure she's cooking something up
In Praise of shooting pains brought on by having to adjust your gait because of other shooting pains
In Praise of bed, where you'll spend countless hours, often lacking the energy to get up to pee
In Praise of neuro symptoms like brain fog, loss of hearing,
Stumbled, slurred and stuttered speech, and feeling like your skin is on fire
Or maybe cold and soaking wet
And on that note
In Praise of night sweats
And day sweats and anytime sweats, even at 20°F
In Praise of night time rituals- the taking of so many tinctures, and so many pills it's almost a meal in itself (you jokingly call the open handful of your pills "fruit salad")
In Praise of morning pill rituals too
In Praise of being the cranky ass sick crip who demands space in this world that constantly tries to squeeze you out,
or at least make you invisible
I raise my purple cane and point it at the sky for you,
For me
In Praise of us, and all we have to teach the next generation of chronically sick crippled Brown and Black queers.
We shape this world build scaffolding of our bones and stories
Our lives are not inconvenient
We Stay Here.

I speak to you of my people- the dispossessed, the powerless the oppressors and the oppressed, the colonizers, the colonized
I tried to express the nuances, and how
We are no monolith, despite the places
We Call Home
How, even in this temporarily "safe" space
Our bodies, our genes remember each diaspora,
Every pogrom
Every displacement and rape
Each edict and genocide
The mass graves and the
Stench of every oven
Tried to explain
Transgenerational inhereted trauma,
The ways each of us carries millions of individual traumas in our cells
These horrors that were
Not our own /Are our own
But to you these things are academic
Things to be analyzed
"Not an excuse"
(I'd never said/say they were)
I said, they are the pain with which we stitch together-
Through Savta, through Saba, through Mother, through Father, through child
This ragged tapestry- this hole filled quilt
Disjointed because we are
Not one people/Are one people
But you cover us all with it, call it a flag
I will not wear a flag
But this ragged tapestry, this
Heavy, hole filled quilt is also mine
And while you can see it, pick apart its threads, critique the spacing of its stitches,
Only we who carry it know its true weight.

A note to myself:
Write your truth
Do not apologize
Do not seek approval
Listen to Anne Lamott
Do NOT seek approval
IT'S TOXIC
it's toxic
So write your own truth
Write your OWN truth
Tell all your stories
The messier, the better
Open your wounds
Poke around inside
Carefully though
No need to reinjure yourself
There are your stories
Do you feel them? Their edges?
What are they like, is the blood still fresh?
These are your stories
Tell them
Tell them
Tell them and maybe
You'll start to heal.

Today has been so long. It feels like this morning was weeks ago.
I'm feeling very small tonight. I feel myself shrinking, and everything is so big. It feels like I'm a mite, and toppled skyscrapers are being piled atop me.
I am so small that I can crawl out between their gaps and maybe dissappear.
Maybe.

For Kyla, Leah and Kay, and all my Teachers who Teach me to Survive

First of all, floundering is part of the process
There will be voracious googling to make sense of each new diagnosis
Tumblr and Facebook groups will become your
Can't-sleep-middle-of-the-night comfort places
"Pain"- a word everyone seems to think they understand
Has a different meaning for you now
"Exhausted" too
If you're an extrovert
You may start to feel like you're dissappearing as
Fewer and fewer invitations to join your friends come through
Not that you could go anyway 
But you hold on to "maybe"
In the beginning
By the day
Then by the week
Soon you're wondering if certain months might be kind enough to unshackle you from your bed for an afternoon
One day you'll discover another voice 
One that feels like it comes from your own heart
This might feel like joy that could burst from your pain filled ribcage like broken glass through tissue paper
Little by little
Through community
You'll begin to make sense of some things
Burbur and lemon water bring quicker relief from your migraines than Excedrin or any narcotic
Lavender tea for twitching muscles
Narcotics help some things too
Crystals and herbs and sleep are powerful medicine
Help will come from corners you didn't know were there
You'll attain new living ancestors-
A "Crip Fairy Godmother" and a "Mama", both chronologically younger than you
Both hundreds of years older in Sickness wisdom
You'll learn that
Sometimes "medicine" isn't something you ingest
But space
Time
Compassion
Patience and
The forgiveness you take for yourself

TW: sexual assault

I was 19,
My parents hadn't noticed yet, the budding breasts that grew under my black tshirts
Street bought Premarin and Provera
I covered them in the South Florida heat in the same motorcycle jacket I still wear
Face sweating off concealer I'd applied too thick
No one to teach me
No one to tell me how much better it'd work to cover the blue beard shadow if I dabbed on a layer of lipstick, red/red, under the concealer
No one to teach me,
Use powder to set
No YouTube, or Internet, this was 1987.
I remember how thrilled and scared I was when approached in the Xtra parking lot by a man who asked for my number, even though I was dressed
Butcher than butch
That was also the year I was forced to blow a biker who called himself Satan, the broken tip of his fishing knife pushed
hard against the side of my neck

I discovered my bravery in Femme a little bit, before my parents kicked me out that year.
Door knocker earrings- my other punk friends made fun of me. Terri just looked at me, shook her head and smirked outside of Jonestown on South Beach.

No one taught me Femme. It was something I pulled out of myself like teeth.

When I first came out as trans, I did it in small, scared steps,
So used to this body belonging to
Everyone but me.
When I came fully into my Femme,
It was violent, like being born.

He knows despite the Harm Reduction Outreach backpack
"I'm not working tonight though sweetie, you need any cleans? Cookers, cottons, ties?"
He knows he can have me anyway,
because I'm Femme, because I'm Trans,
Because this is the stroll.
As we walk back to my car, parked on a side street, away from streetlights,
still a fishbowl, still a silent prayer for
invisibility & safety, I ask him quietly
"how much do you want to spend tonight?"
He knows the local prices but I
get him up to 35 and covered.
When we get into my gray Hyundai,
windows dirty enough from the
road salt and backsplashed FDR slush to
hopefully afford a little more privacy,
he notices on my dashboard,
the purple, Styrofoam, glittered skull,
the two plastic Christmas Disney Princess snow globes from Duane Reade,
the dried roses and dogwood blossoms.
"You don't seem like someone who'd be into this shit" he laughs,
as I lock the doors,
peel off my leather jacket,
and dig out a fresh condom from the plastic bag on the floor behind his seat.