Important Disclaimer: I do not endorse (or recommend) Komunitas Salihara’s Stanislavski class, please read my post here: https://miadjojowasito.com/2016/11/14/important-disclaimer-maria-djojowasito-does-not-endorse-the-stanislavski-class-at-komunitas-salihara/

I do not want my name associated with this community in any capacity and wish to distance myself from Komunitas Salihara and the Stanislavski class. This is not an acting class, this was run like a pay-to-play programme misleadingly marketed as a ‘class’, which was run in a disability-unfriendly environment that is not safe for women:

 

Sexual harassment at Komunitas Salihara (2016)
Sexual harassment at Komunitas Salihara (2016)

 

 

Dear Friends/Potential Employers:

If you ever find a video of Salihara Acting Class 2016 (Level 1) dated February 13, 2016 where I [appear to] behave unprofessionally, I want you to know that I was ill (with a seemingly-harmless autoimmune disease called Sjögren’s syndrome). And today I have found myself in a Catch-22 situation where I was finally forced to reveal a medical condition I have been trying to keep a secret since 2013 in a tweet:

On one hand, if I reveal the medical condition, I know people will be reluctant to hire me as my poor health would be viewed as a liability. But then if the video gets circulated, then people will think I’m a whiny, spoiled, immature prissy princess who turns into a crybaby when she can’t have her water:

A Day In The Life of a Public Enemy
A Day In The Life of a Public Enemy

So what happened today was that we did some physical exercises (martial arts stuff). And for some strange reason, I couldn’t handle it—and I say it’s strange because I’ve been training butoh/ballet every day all week and I’ve been totally fine:

So me getting a bad bout of thirst was completely unexpected (IDK why/how it happened or what triggered it, because I was properly warmed-up and I’ve been doing the same level of intense work all week anyway—I’ve even been timing my dances, and I was reasonably well-hydrated).

Mia the Ballerina: REBORN! 🎀 #Day2 #February13 #Rusty #StillDoingItWrongThough

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But, anyway, what happened was, I started to get very, very thirsty (which is a common symptom for Sjögren’s). And when you have Sjögren’s, it’s a different kind of thirst, if that makes sense? You can actually feel air grating your throat as you breath, and it gets very “physically frustrating” which then turns psychologically painful (IDK how to not make that sound weird, it’s difficult to explain). And then eventually, I also got dizzy and started seeing stars/orbs… And I started feeling faint (I’m too scared to look at the video, but it felt dazed and I remember not being able to follow instructions I couldn’t even keep my sight focused to the teacher’s arm movements let alone follow him—I wasn’t even thinking straight, could barely function, and I even forgot how to say “can I have a drink” in Bahasa Indonesia, so I said the whole thing in English). So I asked if I could have a drink, and I got a snarky smile… And I wasn’t allowed to drink. I tried to continue for a bit, but I ended up walking out of class so I could lean against a wall.

The very idea that my being sick is on video is immensely humiliating to me, because I was helpless and desperate. So I do hope it doesn’t make rounds. I wanted to ask the person who was recording it to stop filming but that would make my classmates vilify me even more (but if you were in an A/E, would you like yourself documented whilst vomiting? I didn’t think so).

After that, I cried in class, but not because I couldn’t handle the thirst. I cried because I was so sad that it had to come down to this. I know my classmates and the teachers/class manager have had very low tolerance for every little mistake I’ve made since I dared to ask for the role of Cordelia because I felt like I worked hard for it with no pretenses (like I said, even when I make tiny mistakes like when I sat on the wrong spot during first rehearsal, I could literally feel the ‘angry energy’ like a heatwave). But I never dreamed that I would end up in a class that forced me to out myself as having an autoimmune disease. I really thought I could have an entire acting career without ever having to tell anyone. Even outside acting, only three or four of my friends know exactly which autoimmune disease I have, three of them I’ve known since middle school and the newest friend because she ran a charity event for autoimmune disorders. I never dreamed, in my worst nightmare even, that I would have to ‘announce’ it on my stagename Twitter account (that I use for acting purposes) of all places.

My friends outside this class are actually good people, so IDK how I ended mixed up with such vile human beings in this class. There’s even this one big-mouthed dick who always specifically argues against me in the WhatsApp group (check the records) as well as IRL, and during the break after I calmed down, he just kept walking back-and-forth in front of me, reciting this one Jester line, “tak seorangpun peduli […] yang lapar dan menangis minta susu” bit really sarcastically (I think he must’ve repeated that one line in front of me at least 11 times). And this is the same guy who said misogynistic/sexist stuff when I helped make tea for another male classmate (when we mistakenly thought he passed out). The video itself was recorded by a fellow pupil, who for some reason, wouldn’t just participate in the martial arts exercise and started recording the class (I tried to start a conversation with her about the thirst to gauge whether she would be open to deleting the video, but she was extremely unsympathetic: acted like I was making ‘excuses’, when I was also genuinely concerned that if I can’t drink backstage, I might pass out and ruin the entire show for everyone else/steal the attention of the play). This class is hell. I didn’t see this coming.

And now, either I let the video get circulated and people will misunderstand me (again) for being “unprofessional”, or I tell the truth and it’s going to turn off potential employers for being a liability (because then it makes me ‘difficult’ to work with). I mean I really believed I could build an entire acting career without ever telling anyone about it. And trust me, if I wasn’t scarily seeing orbs, light-headed, and about to pass out, I would never have asked. Never.

I was diagnosed in October–November 2013, I think? Basically, I was supposed to pick-up my first bloodwork results (where I was misdiagnosed with RA) the day Mark Rutte met with Holland alumni at Erasmus Huis (I just remember being very anxious that day knowing that I was get my diagnosis after the alumni gathering). So if you’re wondering why I follow the Dutch PM on Twitter and every once in a while favourite his tweets—when I don’t even follow the president of the Republic of Indonesia or the mayor of Jakarta, that’s why (because I have some weird, twisted attachment to that day). It’s not because I’m unpatriotic or I glorify the Netherlands’ “history” with Indonesia. I wasn’t treated for it (although I positively do have Rheumatoid factor) because they just couldn’t believe someone so young could have it, and they just shrugged it off (even now when I’m at the MMC waiting for my turn to see the doctor for my monthly check-ups/bloodwork, all the other old ladies there are curious to know why I’m there).

Although in retrospect, I think the autoimmune thing had started much earlier because I remember filming Fifteengate—and because Indonesian productions are so cheap and inhumane, I was only given a medium-sized bottle of mineral water for 12 hours of work between 14:00 and 02:00 (in a secluded area). And also, that was when I started to get allergic reactions to Dior Lip Glow (which I never had issues with before but now that I’m on medication, I can wear that lip balm again).

The way I found out was, I woke up one morning and I thought that I had fractured the outer-sides of my right hand (which is my writing hand). And I wasn’t surprised because I am very clumsy like that (like, I’ve already accidentally broke both of my pinky toes anyway—in fact, I can’t even bend one of them properly anymore! LOL. So it came to no surprise that I might have fractured my right pinky finger, et al. without realising how/why). But I took my time to see the doctor about it and get it checked because I stupidly waited for it to “get better on its own” (and I actually thought it was dangerous to drive with an achy hand). And I know it’s hard to believe that I have this condition when I’m drawing stuff like this and raving about 005 precision pens:

#TheBridezillaEpisode: My character is an Anglophile (she did beg to be allowed to marry "that English toff" and obviously money is no object for a girl who blows her nose using hand-drawn batik) and she's always wanted to wear a western wedding dress. But it's still #JavaneseDowntonAbbey! 🌺🍻🍋🔥✨ So I gave her a Javanese bride's jasmine headdress, although she's wearing her hair down. I really wanted the "something old" to be an heirloom kris, but I couldn't slip it behind the bride's waist… So I'm letting the groom hold it, and decided to change his entire outfit (from British morning suit, which have tailcoats, to Javanese beskap) just so it wouldn't look weird for him to be carrying a kris. But because he's an Englishman, I've added a bow tie (not sure about a top hat, tho… It felt OTT). 🎩🇬🇧☕️ Kebaya lace under cheongsam collar (went through great lengths to make the lace look as un-European as possible). Note marrying in white isn't a thing among the Javanese (we marry in any bloody colour we want—it's presumed that you're a virgin anyway, veil or no veil). How does one even begin to explain how difficult it is to draw a bridal batik pattern on lace? One can't (I don't think it batik lace exists IRL even). The groom is in Kstarian and my character is Ragam Hias Sida Mukti, I chose them based on their philosophical meanings. Jasmine is a Javanese wedding staple (the jasmine on her belt are fresh flowers). But the purple orchid I chose for its Victorian era meaning (its symbolism is to be interpreted from a British point-of-view). FTR, that kris is laced with poison. Just because. As for the something blue, Lady Macbeth eyeshadow (as she is her role model). IDK what I'm doing, TBH! LOL. At some point, I'll blog about the process (like a BTS thingy along with higher-res photos to show the details—which is what took this so long! This was originally scheduled for #CNY but now it's already February 10). I'm even thinking about doing a short video clip show everyone the glitters! Check DeviantArt (mia76). 💍 #JDA #ChineseNewYear2016 #CNY2016 #CostumeDrama #PBC4 #ChillaxThursday #Keris #Kris #WaterColours #Drawing #ChineseNewYear #HaNaChaRaKaFail

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But I’m not making this up (and, ja, I do draw my drawings on an achy hand sometimes—and I get scared that if I don’t do everything now, I won’t be able to anymore when things get worse… Like, I’ll read a colouring book review and this lady with RA wrote she prefers to colour with markers because it hurts her hand to colour with pencils and I’d just feel so, so queasy). I legitimately have this condition. And I know people keep telling me to take it slow and not push myself too hard, but that was the idea: It’s because I’m not entirely healthy that I want to take as many good roles as I can (while I can). It’s not a degenerative condition per se, but one can get complications (some of them are scary as fuck). Plus, I take immunosuppressants and they kind of ‘help’ but not really? In that… They’re immunosuppressants, FFS (that’s why when other people have coughs for a week or so, I have them for like 2–3 weeks). I’m not dying, Sjögren’s syndrome isn’t life-threatening, but it still makes one want to make the most of their lives (because with the chronic fatigue, your days are shorter and it makes your entire life as a whole feel shorter as well as a result).

It wasn’t until around one day before the “Naked Mole Rats” audition that I began taking those immunosupressants (after finally getting a proper ANA/ENA test at the MMC) which makes me susceptible to infection and landed me in the hospital:

Just in case anyone thinks I'm being irresponsible by fighting an army doctor to get discharged yesterday, I just want you to know that I am taking good care of myself (while actually getting stuff done). I'm not being naughty, I truly did it out of necessity (and the fact that I had so much on my agenda's to-do list was seriously making me anxious—which, in my defence, would've made me worse). I will stay hydrated, then I will be resting for the remainder of the week, and I will also be living within the vicinity of the play venue during the show dates (to avoid traffic, force majeure, and to preserve energy). And, ja, that's 7 bloody pills for this morning (and I will be very disciplined about it too). I have a follow-up doctor's appointment on #ChillaxThursday (November 5) at the Army Hospital to make sure everything is under control. I'm also not sitting myself down to force myself to reach 1,667 words for #NaNoWriMo until November 16, I'm just noting any sporadic ideas I might get during the day. See you at #NakedMoleRats2015! 💛✨ #OhAndAlsoByTheWay #MiaDjojowasitoWillNotBeDoingStageDoor #FlipsHair #Sorry #ButIfYouBuyYourTicketsDirectlyFromHerSheWillSignAnyBodyPartOfYourChoice #WhichYouCanThenTattooPermanently #AndWhenSheBecomesABigDealSomedayYouWillNotRegretIt

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Stress exacerbates it. Like when I filmed my first good short film, “Makan Malam”, the day before filming I was so tense (and therefore stressed out) that my right hip hurt so bad, I couldn’t walk (thankfully, I had two hand-warmers–an Oranje heart and a Union Jack one—I bought compulsively at Kinokuniya and it helped numb the pain). But ask my castmates if I whined or behaved unprofessionally during filming. I’m pretty sure they had no idea I was ill just the day before and had no problem working with me. I’m usually a trooper.

I know it looks like I’m a whiny, prissy high-maintenance actress, but I was ill. So I’m swear to God, if it wasn’t because it became unbearable, I wouldn’t have asked to be allowed to drink.

Please believe me.

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