I am celebrating independence from my uterus and cervical fibroid by resting indoors while my body knits together my post-surgery innards! I told you my posts would be strange for a while.
I am celebrating independence from my uterus and cervical fibroid by resting indoors while my body knits together my post-surgery innards! I told you my posts would be strange for a while.
At long last, I am on the other side of “hystery.” I’ve had a rough year, health-wise, culminating in this crisis. But on Wednesday I got my long-sought-after hysterectomy (ovaries stayed in, everything else removed). It was complicated, due to the location of the fibroid in my cervix, and the surgery itself took 4.5 hours, and the doctor tells me I can expect more recovery pain than a “normal” hysterectomy. But I’m recovering steadily and glad the wait is over.
Photos below, including one of the “specimen” the surgeon removed. If you are weak of stomach, do not scroll down.
Reviewing these photos, it doesn’t look like such a big deal. But it was at the time! And is now, to be honest, as I spend most of the day sleeping and dreaming very weird dreams, like having to eat my way out of a giant bathtub of lentil soup. Right now is my big morning at my ol’ computer, feeling semi-normal for a few minutes. I’m supposed to be mostly recovered in 2 months, at which time I am allowed to bicycle again. Until then, my posts may be stranger than usual.
UPDATE MONDAY JULY 2: I’m still getting better. My biggest challenge is coughing, which I can’t do without bad abdominal pain. But I have to cough to clear the crud from my throat, which is still recovering from the breathing tube I had in me for many hours. It’s quite a conundrum. Fortunately, laughing is not nearly as painful.
I had my first walk outside today, about a quarter of a mile. Everything looked amazing: flowers, trees, blue skies, clouds. I’m grateful to be alive.
UPDATE JULY 15: at my 2-week post-op appointment, the surgeon said the biopsy revealed the cervical fibroid was 7cm. My cervix also contained a 2cm polyp. And there were multiple fibroids in my uterus. Neither cancer nor endometriosis were detected.
My recovery continues to go well. I can now walk up to 3 miles a day, and don’t need any painkillers, even over-the-counter ones.
UPDATE SEPTEMBER 19: Today marks 12 weeks since my hysterectomy. I officially deem it a success! No more constant low-level abdominal pain. No more periods! And…I can have sex again without becoming violently ill. That’s right, I was facing a future of no more sex ever, because I got so sick from it (including vomiting, the last time before my fibroid was discovered). Turns out you’re not supposed to have a tennis-ball sized tumor rammed up in there! Now that it’s gone (along with its numerous sister fibroids and polyps, and the cervix and uterus they grew in) I feel MUCH better. A+ would recommend.
Note: updated below
A doctor in my family recommended someone at Loyola Medical Center who looked promising. So I called, and while they accept Medicaid, they don’t accept Medicaid managed by Meridian, which is what I have. So I called Illinois Medicaid and asked if I could switch to Molina, and they said no, I’m locked in until April of next year. So I called Meridian, who put me on hold for half an hour and then gave me numbers of nearby medical establishments which aren’t Carle. One of them was a disconnected number, the other, Kirby Med Center in Monticello, has no gynecologists at all. I called an affiliated gynecologist in Peoria, but his office is booked until at least July – and that would just be for an initial appointment.
What I REALLY want is a doctor that actually pays attention and can help me figure out what I should do. I won’t get that through my local med system. I probably won’t get that anywhere. But here’s my last-ditch effort before I resign myself to a life of pain and permanent celibacy (I can’t have sex without getting violently ill; celibacy is how I’ve been managing at all):
Are there any gynecologists among my fans? Any? I will travel to your state. I just want someone who will actually pay attention to my case. I am desperate.
Update 5-18: Due to help found through my cry of despair here & on fecebook, I have an appointment Monday with a gynecologist at SIU Med Center in Springfield IL. I was advised that teaching hospitals are eager for patients like me, and so far that seems to be the case. I called this morning, they were very helpful, and called back within 4 hours with said expedited consult appointment.
Then all I had to do was get my records released from Carle. Carle doesn’t accept emails for this (“they take too long,” they said on the phone). You have to visit their new vortex-of-evil administrative hell-plex on Staley road at Curtis, on the outside of town. Fortunately, SpecialManFriend(tm) was kind enough to take me there. I filled out the form, talked to the clerk, and came back after lunch. “Here are your records!” they said, handing me a big envelope. I almost walked off with it, but then decided to read through them first. Good thing, too – they’d neglected the most important, recent, and pertinent records of my MRI and ultrasound. They also neglected to include images, which I specifically requested. I politely asked for these things and they said, “oh, sorry, we’ll print those out now,” and “oh, ok, we’ll burn you a disc.” I’d be disgusted but I’m feeling too hopeful about getting a new doctor in a completely new, totally non-Carle system.
This is consistent with the film’s opening credits:
and end credits:
Why? Who? WTF?
I made Sita Sings the Blues almost entirely alone. That caused an unforeseen problem when it came time to send the film out into the world: I was usually the only person who could represent it at festivals. Other films have producers who aren’t also the director. Other films also have crews, staff, multiple executives, and money. As SSTB’s only executive, I couldn’t be everywhere at once. Often I couldn’t be anywhere at once, due to having a life that includes occasional crises. Sometimes, if I was lucky, I could send an actor like Reena Shah, or musician like Todd Michaelesen, or narrator like Aseem Chaabra, or sound designer Greg Sextro. But most of the time it meant there was no human being representing the film when it screened at film festivals.
I’m even more hermitic now, and made Seder-Masochism in splendid isolation in Central Illinois. This time I worked with no actors, narrators, or musicians. I did try recording some friends discussing Passover, but that experiment didn’t make it into the film. Greg Sextro is again doing the sound design, but we’re working remotely (he’s in New York).
I like working alone. But I don’t like going to film festivals alone. And sometimes, I can’t go at all.
Such as right now: in June, Seder-Masochism is having its world premiere at Annecy, but I have to stay in Illinois and get surgery. I have an orange-sized fibroid in my cervix, and finally get to have my uterus removed. (I’ve suffered a lifetime of debilitating periods, but was consistently instructed to just suck it up, buttercup; no doctor bothered looking for fibroids over the last 30 years in spite of my pain. But now that I’m almost menopausal, out it goes at last!)
Film festivals are “people” events, and having a human there helps bring attention to the film. The reason I want my film in festivals is to increase attention. The more attention, the better for the film, especially as a Free Culture project. So I want a producer with it at festivals.
Fortunately, Producer X has been with Seder-Masochism from the very beginning. After Sita’s festival years, I knew that credit would be built into my next film.
So who is Producer X?
Whoever I say it is.
She’ll see you in Annecy!
My two goals for 2017 were to bicycle 5,000 miles, and to finish Seder-Masochism. I have 30 miles to go on the first goal, slowed down by mysterious health problems (for which I’m about to undergo a series of invasive tests). But the second goal keeps getting farther away.
I have all the pieces made, and they’re pretty good. The musical numbers are entertaining, and the “Our Father” scenes, based on recordings of my own father shortly before his death in 2012, worked remarkably well.
But the overall story isn’t holding together. In fact, it’s hard to tell what the overall story is. I set out to retell “The Passover Story,” but what is that? It’s Exodus. But it’s also more than Exodus, and far less. I tried structuring the film around the Passover Seder, and the result is incoherent. Perhaps because as a story, the Passover Seder is itself incoherent, its popularity and persistence due to early indoctrination and strict rules rather than narrative quality.
So now I’m looking for the story again, at this rather late stage. The narrative quality of the Book of Exodus itself is dubious, but it does contain at least one strong story: the going out, the leaving, the separation, the exit, the Exodus itself. I thought a lot about the meaning of Exodus a few years ago when I animated Death of the Firstborn Egyptians (the solo clip of which has become rather popular, at over a million views on YouTube alone).
Even as the mythological Hebrews exited mythological Egypt, the mythological Firstborn Egyptians exited Life, led by the profound power of Death – who is the Abrahamic God Himself, according to many Haggadot. According to the ancient Egyptian conception of Death and the afterlife, this was not necessarily a tragedy; in fact it would have meant something entirely different to the mythological Egyptians than it does to us. Still an Exodus, but from another point of view.
And that’s where I’m returning to seek my story. To Abrahamics, the Exodus is the story of going forth from the “narrow place,” from cruel slavery to freedom. But what were they exiting, really? According to them it was slavery, oppression, and, worst of all, the worship of false idols. “Thou shalt have no other gods before me,” commands Yahweh in Exodus 20. How does this story look from the point of view of “other gods”? Specifically, goddesses?
Patriarchy celebrates Exodus as a triumph of civilization. But these days I question the value of civilization, since it’s (we’re) killing the planet and perhaps our souls and minds as well. The popular myth, amongst anxious environmentalists like myself, is that Once Upon a Time humans lived in harmony with nature, gathering and hunting, attuned to the natural world through animism and reverence for the Great Mother. There followed a Great Fall: Agriculture, and its attendant sins of property, hierarchy, and slavery. With the plow we were expelled from the Garden, and things have gotten worse ever since. Genesis in a nutshell.
Exodus is a different angle. This time the Great Mother isn’t a nurturing Garden, but a suffocating oppressor. Man isn’t expelled; he escapes. All those (formerly) animistic spirits are now ridiculous and evil idols. The sacred snake becomes the demonic serpent. Nature and fertility become disgusting things to be controlled. Yeast – spores of Life in the very air – is loathed and mastered through the fetishized Unleavened Bread. This loathing and mastering continues today, as we continually kill Life in the soil with fertilizers, herbicides and pesticides. (My 4,970 miles of cycling mostly took place in Central Illinois, the heart of the agri-desert, where yesterday I rode past tanks of ammonia being dragged through denuded fields.)
What does Exodus look like from the point of view of the Goddess? She was in Egypt as Hathor, Hekket, Wadjet, Nut, Maat, Isis, and others portrayed already in Moses Goes Down. She was elsewhere in Mesopotamia as Ishtar, Astarte, the “Queen of Heaven” and other mis-named or un-named “idols.” She was in Europe. She was everywhere – all humans conceived the divine as female, long before the invention of the male God.
Watching Man walk out on Her, going forth from revering Nature to enslaving and killing it – would she even want Him back?
So I’m currently trying to articulate the Exodus from the Goddesses’ point of view. I hope it works. I’ve put a lot of effort into Seder-Masochism so far, I’d hate for it to be a BIG FAILURE WITH NO COHERENT STORY. Then again, I may end up with a coherent story that is despised. If my current storytelling angle succeeds, even more people will hate it, especially men. But that I could live with. Releasing a weak, incoherent film would be harder.
But this late in the game, that may be its fate – it’s up to the Goddess.
A few weeks ago I ran this comic at Mimi & Eunice:
I’ve long suspected that soy sauce could contain only small traces of wheat, so I did a little online research. Surprisingly, I found only one item that addressed the gluten content of soy sauce directly, and found it contains none at all:
The article contains a link to a lab report which appears to be Belgian. It’s strong evidence, but celiac organizations are still claiming soy sauce contains gluten, which leads trolls to leave furious comments at mimiandeunice.com and my Facebook page for daring to suggest otherwise.
I’d like to clear up the soy sauce confusion once and for all. A Belgian lab report makes one data point, but more data points are needed, especially because these substances may differ between the US and Europe. What I’d like is an analysis of several brands of American soy sauce, both conventional shoyu (derived from wheat ingredients) and “gluten-free” tamari. Also both fancy health food store brands, and cheap run of the mill supermarket kinds. What would really be helpful is a brand-by-brand chart the wheat-sensitive could refer to.
So, is there an analytic chemist in the house? A chemistry grad student? A biochem hacker space with time and resources on their hands? I’m certainly not a chemist, but if you produce such a report you’ll have my undying gratitude and whatever publicity I and Mimi & Eunice can muster. Also, you’d be doing good for the world.
Wanna spend a fun weekend with me improvising drawn stories on index cards at a renowned yoga retreat? I sure do!
Register here! Caveat: it costs money.
OK, so I’m not in Athens right now. I left Israel early. I got sick, is what happened. A little food poisoning, a little irritable bowel syndrome, a little appetite loss and not eating for days, a little nervous breakdown, and next thing you know I’m back in New York trying to recover in a friend’s apartment, because I lost mine to bed bugs in July – not that that could be contributing to my stress or anything.
Unfortunately airports and airplanes and trying to sleep in different time zones are kind of killing me, so I’m canceling personal appearances for the next few weeks. It is a serious bummer, because I love meeting audiences and doing Q and A’s; and also because some of my upcoming lecture gigs actually pay, and I need the money. But my body and brain apparently can’t take this much travel, and I’m really sick.
These last few weeks have been pretty awful. I am broke and homeless. Time I should be spending working on promoting my film – my only asset, my life’s work – has instead been consumed salvaging what I can from my apartment, bagging things in ziplocs, laundry laundry laundry, carrying stuff up and down and back and forth, throwing things out, calling exterminators, calling the landlord, calling friends, sleeping on a sofa, not sleeping on a sofa, taking showers and immediately changing into more ziploc-ed clothes, more laundry, wiping salvaged computer parts down with alcohol, weeping, talking to other tenants in my now-former building, confronting debt, canceling accounts, checking messages, begging for help, watching red bumps grow on my hands and arms (I have a delayed reaction to bed bug bites; it takes 9 days for the red welts to really blossom, then they linger a long time), reading bedbugger.com, reading craigslist housing ads, weeping some more, et cetera.
Bed bugs are like Syphilis for apartments. They appeared on the other side of my building a few years ago; it was only a matter of time before they came here. My downstairs neighbor detected and began treating an infestation while I was traveling last month. Possibly they were driven upstairs when her place was sprayed, or perhaps they were waiting all along. Whatever the reason, I didn’t leave an infested apartment, but I have returned to one.
Treating bedbugs is a lifestyle. Anything made of fabric must be washed and dried at high heat, then immediately transferred to ziploc bags. You then live out of ziploc bags for months (I’ve already spent the last month living out of suitcases, which I thankfully haven’t brought back to the apartment; those at least are not infested). You vacuum constantly. You change into ziploc-fresh clothes immediately before visiting friends, in order to not transfer hiding bugs to them. Everything you own must be inspected, cleaned, sterilized, heated. Furniture must be emptied and pulled from the walls. Exterminators visit every few weeks to spread poison. You are supposed to continue sleeping in the bed, as bait to attract the bugs from their hiding places over the poison. You keep doing this for weeks or months, until the bugs leave you alone. Of course they just move to a neighbor’s apartment, and play musical beds unless your whole building is treated. Good luck with that.
So I’m moving out. My lease ends September 30 anyway. I can’t move my stuff, of course, as it is possibly harboring renegade bugs and needs to be sprayed at least 3 times over 2 months, with no guarantees. I’d like to salvage my computer, but everything else I own could vaporize for all I care. I wish it would.
Bruno and I are going to stay at a friend’s house for a while (friend will supply a fresh outfit from my off-site suitcase I can change into to prevent infecting his car, and anything else I bring with will be sealed in bags and placed straight in a washing machine; cats aren’t known to carry bugs except in the most severe cases). Much as I hate travel and have longed for home these past weeks, I don’t really have a home right now. Since I can’t afford to rent or buy a new place now (I’m in deepening debt from Sita) I may just go from festival to festival for a while.
By some miracle I haven’t completely lost my mind yet, but I’m getting there.
I got back from Stuttgart, still coughing (albeit less), and slept for about 2 days. Now I’m slogging through my backed-up emails and figuring out what to do next. I looks like I’ll be touring the Eastern Hemisphere most of June and July, and sub-letting my Hell’s Kitchen apartment. Interested parties please get in touch – the apartment comes with my cat Bruno, who needs daily food and love.
You’d think I’d be all overjoyed about this, but actually I’m stressed and confused. Will Sita get a distribution deal? Will it win an award? Awards drive me crazy – I always want one, “for the sake of the film,” I tell myself, but surely it’s for my ego. Press too is like coke, I always want more; google blogsearch is becoming a compulsion. I compare Sita‘s progress with other films, which can’t be good. I’d like to detach from all this, but what about the festivals? This is my big chance to attend film festivals, it’s not like I can postpone them all until next year. But film festivals are orgies of comparison: who’s getting the most press? the best reviews? whose shows are selling out first? who’s getting the award? These are enemies of the Muse, and I’m not sufficiently mature to maintain my equilibrium in their midst.
Also, I am out of money and racking up expenses like you wouldn’t believe. Take “film festival rights”: publishers charge at least $500 a song just to play the film at festivals – and I don’t get money at festivals, I spend money to make the prints and stuff. I’m spending money I don’t have to get the film out there, and although something always works out, I have no idea how I’m going to pay for French subtitles (the “honor” of attending the Annecy Animation Festival is costing me over $5,000), or legal fees, or rent. Someday the film could bring money in, but I’m not sure how I’m going to make it to that day, if it ever comes.
What a whiney post this has turned out to be. On the brighter side, I’ll post next about all the sweeet reviews Sita got at Tribeca, with tasty little quotes selected by Publicity Bitch herself. But I am not Publicity Bitch. I am a servant of the Muse who is losing her way.