hey friends, new and old,
how strange to return from a long hiatus to so many new followers and subscribers, thanks to my pal Katharine Hargreaves getting a big press hit!
how glorious - and disorienting!
a bit of context:
i started this substack 3 years ago as an experiment, a space to give myself creative fruition while disabled and working on longer term projects (features, tv)-
note i did not create this for exposure.
i created it to give myself a space for creative completion. fulfillment.
a kind of a soul mission more related to the stars than the earth.
and so i welcome you new people, and i sit here a bit puzzled:
what shall we do together here today?
*
when i first started with substack it was only possible to send email newsletters. now there are many social media functions. the homepage has a ‘times square’ quality to it - flooded with posts from i don’t even know who!
i have not yet learned how to post notes. or create chats. or even add recommendations. when substack alerts me of these options,
i slam them away quickly, like a child afraid of a monster in the closet.
then i run just as fast.
*
well, rather than getting caught up in the meta of it all, now that i’ve aired it out (and thx for listening!), i think i’ll crawl into bed and just pick up where i left off.
but before i do i want to acknowledge that i took a workshop yesterday - a shorts-to-feature workshop at The Gotham - which was truly inspiring and wonderful, but true to form all the filmmakers on the panel are in marketing, and one even said
“we are creating for the market”
and is any true artist soul somewhere rolling in their graves?
or was this the contract all along?
(the implicit contract: artists create for the market
instead of: artists are visionaries who create for the world we wish to see)
maybe i missed the memo,
am too naive and catching up,
piddling away at this substack with concepts like authenticity,
sharing my diaries with the public like i’m 12.
if you’re new here, you’ll note this is not my first public self-lashing.
but i digress.
*
back in March, i said that i had faced my worst fear, i did not know how to talk about it, and i would tell you about it when i could.
5 weeks,
a trip to Japan, and
a Passover Seder later,
i’m as ready as i will ever be.
*
so here goes:
having been disabled and in recovery from chronic illness for 6 years,
having faced such intense crashes of fatigue, including
days where i could not get a glass of water and cried about it from my bed,
weeks unable to walk from my bed to the kitchen,
months unable to lift my own trash,
seasons unable to participate in normal social activities,
years unable to definitively maintain any kind of plan:
not a holiday, not a plane ride, not a film festival,
not a yoga class, not a dinner, not a performance.
and in that timeframe, also experienced intense, embarrassing, awful crashes in public:
the times that i would only walk around my singular block,
instead of a few blocks away,
in case i could not walk all the way back home.
the times that i sat on the floor in a Target,
or a Ralph’s, gathering strength to get home.
the time that i nearly fainted in synagogue, and not only did nobody notice - but when i asked someone for help, the person who offered to get me help walked away and forgot, so i had to keep finding the strength and the words and the right person to ask- repeatedly- and yes, i ended up in the emergency room that day, accompanied by my favorite lesbian rabbi. (sometimes my issue is i look too OKAY, i had been sitting calmly, and did not want to call attention. i don’t like a scene, or to look out of control, if others over-ride my ability to self-advocate, they can make it much, much, worse, if people are too loud or panicked around me, i cannot be clear about what i need.)
given how hard these incidents have been on small-scale,
my biggest fear was getting sick while traveling-
specifically, trapped sick and alone in an airport.
being so sick in a hectic public space far from home, or worse - ending up hospitalized in a very stressful situation, unable to advocate for the care my hyper-sensitive sweet little body needs.
and so, of course, mid-march 2024:
i was graced with the opportunity to face that very fear.
*
it does not give me pleasure to milk this story, so i am going to tell it to you plainly:
my partner and i were together in new york city. the night before we had to fly to separate locations (me: Los Angeles, him: Somewhere), the condom broke.
i am already stressed about flying.
in the past, i had already experienced lots of vomiting on flying,
many cancelled and rescheduled flights due to symptoms,
many spells of recovery time post-flight.
so, when faced with taking Plan B the night before a flight, i knew i might need to change my flight.
i also knew it was better to change the flight if i had to, than risk a pregnancy for we were not prepared.
we moved quickly,
he ran to CVS,
me swallowed the Plan B with water and a prayer-
i knew Plan B would make me sick.
some people can pop it like Advil.
but for me, it could become a full season disabling event if my body did not adjust.
i have only been on hormonal birth control once, for one month, and it was a disaster: acne, mood swings, uncontrollable crying, weight gain, the works.
the one time i took Plan B i felt sick too, though that was fuzzy - a decade ago.
i was terrified.
*
the next morning, i felt totally fine, and so we said our sweet goodbyes,
and i got on the plane.
halfway through the flight. i start to heat up. i clutch a vomit bag while the plane spun, every breath coaxing my system to relax and keep the chunks in.
by the time we land, i’m so sick i tell the flight attendant i might need a wheelchair when i get off the plane, and help with my luggage.
i decide it will be easier for me if i walk, so
he helped me with my luggage, handed me a ginger ale, and wished me godspeed.
once i enter the airport, i’m so sick i need to sit down.
and then i threw up. a lot.
not one person asked if i was okay. like, if i were in a public space and someone was throwing up, i would ask them if they need help. not so in LAX in United Airlines domestic on a wednesday afternoon.
so i do the thing that frequently symptomatic invisibly disabled people do, i look around and weigh my options, suss out who seems like the right person to ask, where they will be helpful without asking too many questions - someone efficient.
i choose a girl with animae characters in her pigtails.
i ask if she can get someone to help me, and skipping ahead:
a woman comes who has clearly never experienced this before, and offers me an ambulance? so i’m like no, but can i please get, like immediately:
-tissues
-water
-another vomit bag
-a wheelchair attendant
she returns with a vomit bag that’s as large as a trash bag, and granola bars.
tells me the wheelchair attendant is coming.
i sit there throwing up. again, not one person around me asks if I’m okay.
i speak to my cousin and try to maintain as much calm as possible because i hate scaring people, i hate being the problem.
when the wheelchair attendant arrives, who we’ll call Angel, we review my options. she is short with kind brown eyes, soft-spoken, but clear. she has a walkie that goes off but she ignores.
Angel says she can take me to car pick up area, but she can’t get me all the way to uber/lyft area - for which I’d need to take a shuttle alone. I’d left my car at the airport to save money, and I don’t even know if I can handle driving home.
I find a way to say that I literally cannot be alone, what I need her most for is to stay with me until I’m safely in a car with somebody I know. I need her to help me figure out how to get home. So she waits while I start calling friends and fortunately my friend can come.
Angel and I begin our descent to baggage claim, where I pop into a bathroom and scramble to rinse myself off and regain some dignity. When I return to the wheelchair, I find that it is actually making things worse and by the time we get to the baggage claim area - an entire elevator ride later (during which I successfully scared off a couple from crowding in by warning them I might throw up if they do :) )-
i’m wretching in public again. in a wheelchair. kind of (no - definitely) pissing myself.
in the center of Baggage Claim.
i’m so sick i can’t look to see if people are looking but i know that i’m screaming while Angel pats my back gently and says “good, get it out” over and over,
says “everybody has moments like these,”
i continue to divert my eyes, and pray that none of my former bar or bat mitzvah students and their families are here and can see me like this, this wretched wreck.
the smell in the airport makes my nausea worse.
i ask to be wheeled to a not-crowded location, Angel does.
i ask to lay on the floor, Angel lets me.
she throws me a sweatshirt.
encourages me to drink water.
while laying on the floor. i can tune into a sense of quiet. feel the cold air from outside.
notice how parts of my body feel okay. (somatic therapy paying off.)
i dont remember if i cry more but i know that i just stay.
and staying feels good.
when my friend is almost near, i tell Angel that i cant get back in the chair, and she wheels my luggage out while i walk. turns out she’s only been on the job two weeks-
i tell her she is already SO good at it.
i ask my friend to put a dog towel down because i suspect i’ve peed while vomiting so much, and i’m right. he doesn’t mind.
he drives slow, lets me cover my eyes, doesn’t complain that i’m oversensitive to every smell and light, or might throw up again.
when we get back to my place, he helps my luggage in, i make sure i have my medication and water, and discover my bed is not made -
the catsitter has left half-dried sheets hanging on the doors.
so i half-make the bed with half-wet sheets, and sleep and sleep and sleep.
*
in the days to follow i’m a wreck.
i want to break up with my partner.
the dishes are too blue and make me nauseous, i need to replace them all.
my amazon cart is full of thousands of dollars of things i’m convinced i need.
my partner puts martial law on the amazon cart (as in - no buying),
he says let’s discuss our relationship once the Plan B has moved through.
(he’s a smart man - we’re still together, folks)
i make sure to talk to my doctor, who puts me on a special remedy to make sure my whole system adjusts and flushes out the Plan B properly.
my partner and i start tracking my cycle, together.
i not only survive, but i some how have the strength to get ready for a two-week trip to Japan, and complete my taxes. in two weeks in Japan i throw up only once, navigate disability flare ups- but mostly have a fantastic experience making lifetime memories with my mom.
*
i have emerged from facing my worst fear:
getting sick while travelling,
and this has
initiated me into a new phase of life,
one in which i do not shrink to my perceived limitations of my disability,
but instead embrace that discomfort is a part of my life,
choose to stretch my capacity,
take the pain with the pleasure,
the joy with the ache,
the loss with the triumph-
and oh, honey - isn’t that life?