The More I Listen To My Body, The More I Hear It Screaming

Film still from Iavnana by Mziuri

N.B. This text includes two versions of the lavnana – a Georgian pagan lullaby for sick children – to be played at the beginning and end of each reading.

Content warning: ableism (including ableist terminology), childhood trauma, medical abuse, C- PTSD flashbacks, racism, and misogynoir.

Iavnana · Rustavi Folk Choir 

A chair covered with a red cloth was placed before the sick children. 
On the cloth, there were little pastries, sweets, cloth scraps in various colors, 
dolls, flags, red-dyed eggs, and so forth. 
This was a banquet set for the lords [and angels].

O violet, nana, o rose, nana,
O violet, naninao,
O you lords, o you merciful ones,
O violet, naninao,
I pluck a violet, I spread out a rose, 
O violet, naninao,
Bring relief to our children,
O violet, naninao!

In the garden of the lords,
O violet, naninao,
A white mulberry is bearing fruit,
O violet, naninao,
I was at the riverbank, and there I saw O violet, naninao,
An aspen wrapped around an aspen,
O violet, naninao,
We came here from the white sea
O violet, naninao,
Seven brothers, seven sisters,
O violet, naninao!
We spread out to seven towns,
O violet, naninao,
We pitch our tents in seven towns,
O violet, naninao,
As your coming made us glad
May your leaving do likewise,
Nana, nana, to the lords,
O violet, naninao![1]

–

I can still feel the prodding fingers of the doctor yesterday in my upper back, shoulders, elbows, hips, and Achilles tendon. Him repeatedly asking me, does this hurt? How about here? Jabbing me again, does this hurt? 

It was after the third time he got up out of his seat, coming towards me from the other side of a large awkward desk, to prod his fingers into my body again, that it became clear to me, how fragile his authority was in this situation.

His entire diagnosis was seemingly tied to only his index finger and a questionnaire that three people were struggling to translate from German into English and answer. 

The fact that he attributed more authority to his finger and this untranslatable questionnaire than to my own personal account of my body was darkly comical 

As is how used to this I am 

_

In her novel «The Yellow Wallpaper», Charlotte Perkins Gilman highlights that diagnosis can covertly function to empower the male physician’s voice and disempower the female patient’s. The narrator in this novel is not allowed to contribute to her own treatment or diagnosis and is forced to succumb to everything that her doctor and, in this particular story, her husband says. The male voice is the one that forces control over the female and decides how she is allowed to perceive and speak about the world around her. 

Eighteenth-century theorists believed that the womb was the cause of women’s [only] illnesses. The expanse of these supposed womb-based illnesses became known as «The Hysterical Passion.» In the 1800s, when doctors, rather than midwives or herbalists, began to treat patients, the «hysteric» woman became a commonplace label for women when the doctor was unable to understand or diagnose the problem. Women with multiple sclerosis were initially labeled as hysterics, as were women with fever-induced delirium. Even today, people who are ultimately diagnosed with lupus may be accused of exaggeration when they first present their symptoms. This is likely linked to the fact that many of the initial symptoms of lupus—fatigue, achiness, and stiffness—are the same symptoms that doctors noted in «hysterical women.» Notably, these same symptoms, especially pain and fatigue, are the hallmark of fibromyalgia. The root of the «hysteric» label seems firmly bound in misogyny and an unwillingness to believe that ill women are anything other than a «dramatic female behind the patient.» In the late 1800s, doctors discredited (white middle- and upper-class) women’s complaints of chronic fatigue syndrome, because they believed that women who did not work had nothing to be tired over. It was also a common belief at this time that hysteria was a result of too much education; that women who spent time in college or studying were over-stimulating their brains and consequently leading themselves into states of hysteria.[2]

While the history of hysteria has traditionally been told through the lens of gender, it’s essential to understand that while sexism and misogyny impacts all women, the experiences of white women are very different to those of Indigenous women, Black women, WOC, and immigrant or refugee women.[3] Middle- and upper-class white women had long been a subject of intense scrutiny in the medical field. But within this same field, the racial Other was an entirely separate issue in the sense that racial/ethnic minorities were rarely seen to matter at all. Indeed, racial/ethnic minorities were seldom included in medical analyses, much less the focus of them,[4] unless they were being used as test subjects against their will. 

Many of the diseases recognized in women were seen as the result of a lack of self-control or self-rule. Different physicians argued that a physician must «assume a tone of authority» and that the idea of a «cured» woman is one who is «subdued, docile, silent, and above all subject to the will and voice of the physician.» A hysterical woman is one who craves power and in order for her to be treated for her hysteria, she must submit to her physician whose role is to undermine her desires. Often these women were prescribed bed rest as a form of treatment, which was meant to «tame» them—ridding them of rebelliousness and forcing them to conform to expected social roles. 

While it is no longer called hysteria, this type of practice still continues today. Instead, these conditions are called «somatic» or «psychosomatic,» which are described as any illness that has physical symptoms but has the mind and emotions as its origin. Whether psychosomatic conditions are physiological or not, what is more important to consider is how this diagnosis is used as a tool for the oppression of all women, especially those in minority groups.[5]

The racialized stereotype of the angry and emotional woman in particular has helped generate the «angry black woman» stereotype that relies on the stipulation that Black, Indigenous, and WOC women can exist as long as they do so quietly. The «hysterical» pigeonhole serves to dismiss, discredit, and deny the minority experience by instructing that their stories are unnecessary emotional responses.[6]

Another example of the transformation of hysteria is with the disease fibromyalgia, a well-known physiological disease predominantly found in women today. Because the cause of the disease is not known it is often characterized by the medical community, courts, and insurers of long-term disability plans as only a psychosomatic illness. Leaving many people with this disease without a diagnosis for years, suffering in pain with no adequate care, no insurance coverage, and a high risk of ending up in a psych ward instead of being placed in a holistic pain reduction and physical therapy program—all of which inevitably leaves many people at the mercy of the medical industrial complex without any autonomy and self-determination over their own body.[7]

_ 

I keep expecting, at the next opening or social event, that when I’m in pain by telling people about it, it might go away. 
That saying it out loud will prove that I am making it up, 
that it is just psychological 
and that along those lines, if I admit to it, admit its existence to another person, 
an able body even, 
it will disappear. 

Like describing a dream when one wakes up, 
its texture and threads falling away as they reach your lips,
while you’re telling it to your lover lying beside you
leaving you with only a loose sense of what happened and emotions that exhaust 

The amount of silence
I actually have around my illness though
The hiding and pretending I do to act able-bodied is something I don’t know when I am turning off anymore. 

I don’t know when I am pretending
Am I pretending when I am at home?
when I am alone? 
If I am pretending then why does the pain continue? 

Why is it that with each attempt your hands, in trying to soothe my tense muscles,
only cause me more pain.

It is because of this that I don’t ask for help sometimes
Bearing the weight of someone else’s disappointment in not being able to help me can be just as painful as my symptoms
I’m also not the kind of person who is always capable of re-paying these kinds of «favors» 
I’m not even sure I’ll be able to remember to repay them, and so out of caring for everyone else I usually don’t ask. 

I don’t ask because it’s a taboo, 
I don’t ask because of my job, 
I don’t ask because of losing respect, 
I don’t ask because people will not believe me, 
I don’t ask because I will lose friends, 
I don’t ask because people will be flakey, 
I don’t ask because pretending to be fine is easier and helping me cope,
I don’t ask because i’ll learn the worst sides of people that are closest to me,
I don’t ask because it puts me in such a vulnerable position,
I don’t ask because people will give me unsolicited and uneducated advice, 
I don’t ask because it means my experience will be undermined, 
I don’t ask because you really do not care how I am feeling and you might just take this as an opportunity to talk about yourself. 
I don’t ask because I don’t want to have you compare your stress and struggles to mine 
I don’t ask because I don’t want to hear you equate what is causing you stress in your able-bodied life, which is entirely based on the choices you have made, and not like me happening due to diseases I never chose to have,
I don’t ask because i’ll be told I’m not doing enough, be given yet another set of instructions on how to fix my chronic illnesses and be mansplained yet another treatment I’ve already done, or looked into and know more about,
I don’t ask because i’ll be ostracized, 
I don’t ask because people will insult me «but you look great, you’re so productive», 
I don’t ask because I will have to witness the shock, horror and disgust on peoples faces when they hear the word disease, and ‘there is no cure’,
I don’t ask because I will hear the same remarks of ableist rhetoric directed towards me over and over again, 
I don’t ask because it hurts to feel like a burden, 
I don’t ask because I hate being portrayed a dumb victim that isn’t strong or smart enough to take care of herself, 
I don’t ask because I don’t want to be seen as complaining, weak, inferior, dramatic, or making excuses
I don’t ask because everyone has their own shit to deal with, 
I don’t ask because it will be held against me, 
I don’t ask because I’m not going to give you an award for being there for me and having you feel like you’re a better person for it when it is a simple task for you, 
I don’t ask because sometimes I just need to do it for myself, 
I don’t ask because I can’t remember what to ask for sometimes, 
I don’t ask because it’s exhausting and I have no spoons left,
I don’t ask because explaining what I need won’t benefit you or me,
I don’t ask because i’m not capable of it in the moment, 
I don’t ask because I’m tired of telling you I’m not fine and you ignoring it,
I don’t ask because I don’t believe anyone actually gives a shit, 
I don’t ask because it sounds like an annoying favor that I can do on my own and like i’m lazy, but I actually don’t have the courage to tell you how sick i am,
I don’t ask because I don’t believe I should have to always ask, I believe when people know my condition they should check in and ask me, 
I don’t ask because I have strategically pushed all my close friendships away due to a fear of rejection and abandonment, 
I don’t ask because I don’t think anyone is capable of helping me, 
I don’t ask because I don’t want to talk to anyone or don’t have the strength to, 
I don’t ask because it’s embarrassing, 
I don’t ask because sometimes I’d rather stare at the ceiling until the will to live comes back to me, 
I don’t ask because hurting myself through an afternoon of starvation and the adrenaline high from that can feel a lot better,
I don’t ask because it’s nobody’s business,
I don’t ask because I don’t want to lose people in my life,
I don’t ask because I sometimes think it’s pathetic,
I don’t ask because I don’t want to talk about it, 
I don’t ask because it would involve an amount of honesty that hurts others, or wakes them up to a reality they are not ready for, 
I don’t ask because I hate watching my friends fail to be as loving as they think they are,
I don’t ask because I hate having to call them out on being good time friends when they think they are not.
I don’t ask because I don’t know what I can offer back and that maybe I’m a bad time friend, and I may never have good times in me.

Walking into the ubahn
As usual a man is playing saxophone 

I’m waiting for the U8 and trying to not think about the fact that I haven’t replied to my mother’s text 
I’m trying to avoid feeling guilty about it and about setting boundaries with her 

This is when I begin to hear him play, «Somewhere Over The Rainbow»

This lullaby haunts me 
And it’s as if while thinking about and avoiding her
she’s sent this song request to him 
her usual codependent gestures making me feel even worse than before

And then I realize, I can’t even remember her voice
Only the twinkle of the music box that she would play while singing this song to me
I still can hear it now 

As I grew up I would listen to that music box 
Eventually learning the lyrics to then sing this song to myself, when in need, as a kind of self soothing 

I sang, closing my tear-filled eyes 
Imagining the possibility of being happy
That by singing the lyrics or humming the melody 
The song would take me far away from my isolated circumstances, that I would open my eyes to an actual brighter world 

some place where there isn’t any trouble
Behind the moon, 
Beyond the rain

I don’t remember when I stopped singing this song
And at this moment I just don’t really care to know why 

but instead, standing here on the platform, I just want to cry 
And I want to sing 
And as I imagine singing this song to myself now, a gentle soothing hum escapes my lips, and I can see my old bedroom, myself on the floor staring at the ceiling, my arms wrapped around me 

I begin to grieve for my body and my mind
I begin to grieve for my lost childhood 
And for the child that is still in me that is heartbroken and scared 

The train arrives and I snap back into my body
The twinkle of the music box fades
I grip my cane, finding a sense of comfort in its stability and walk onto the train.

_ 

The Iavnana is a genre of Georgian folk song known famously today as pop-song lullabies, but historically sung as healing songs for sick children. On the occasions in which the Iavnana was sung, the lullaby is addressed, not to the sick child, but rather to the spirits, known as «lords» or «angels» who are believed to be possessing the child and causing the illness. Although their «visit» might very well result in the death or permanent disfigurement of the sick child, these lords were believed to have come down from heaven. Therefore they must be treated with appeasement, especially in hopes of a positive outcome. So the family would refrain from outward signs of distress, or indeed from any activity that might irritate the powerful, potentially lethal supernatural beings that had come into their home. And for as long as the child remains ill, the household members avoided conflict, loud or angry speech, sexual intercourse, the slaughtering and cooking of food, the lighting of fires (except for candles), and most forms of domestic labor. The child was fed for the most part bland dairy-based foods regardless of the illness, and spicy and salty dishes, alcoholic beverages and certain meats were not to be eaten out of respect to the spirits. Furthermore, the visiting lords were to be entertained by the household during their stay. The child was wrapped in red blankets and bathed in red light. The sickroom was decorated with red-colored fabrics and had a banquet of food and sweets. Candles were lit, sweet-smelling incense was burnt, and the family members danced, played instruments, and sang the Iavana.[8] 

_

I feel my mother’s hands on my shoulder
wanting to brush my hair 
my small body at the age of 9 tensing 
my long hair at first softly brushed, 
then suddenly ripped out of my head at the first encounter of a knot
the brush catches, 
my mother pulls at it expecting through pure force to have it break and come apart
I sit there pretending I’m not in pain, as she continues to rip my hair out
a knot of hair hangs from the brush in her hand
I smile

_ 

In 1998 the ACE study explored «adverse childhood experiences.» Surveying 17,000 middle-income adults who had health data stretching back to their early childhood, the ACE research indicated that the more adversities an individual experienced as a child—poverty, parental death or incarceration, neighborhood violence, or abuse—the more likely that person would suffer from serious physiological disorders as an adult. While the causality between childhood adversity and adult chronic illness has yet to be fully determined, researchers now have enough knowledge about the way chronic stress impacts physiological health to make some educated guesses about their potential link. When the flight or fight response remains highly activated in a child for an extended period of time without the calming influence of a supportive parent or adult figure, toxic stress occurs and can damage crucial neural connections in the developing brain. According to Harvard’s Center on the Developing Child, the impacts of experiencing repeated incidents of toxic stress as a child «…persist far into adulthood, and lead to lifelong impairments in both physical and mental health.»[9]

_

Claws digging into my arms, dragging deeper into my flesh the more I pull away. 
as if stuck, like a cat’s claws in cloth.

«hi»

my mother texts me 

Just 

«hi» 

Nothing more. 

Just 

«hi»

With that one text I could write a novel, 
A novel solely composed of all of her needs
the needs she is using one word to express
the needs she is ignorantly but firmly holding me responsible for. 

The anger this brings with it,
is complicated by a claustrophobic sense of never being far enough away 
from the weight of having been her caregiver 
and never having my own. 

_

When a sick child succumbed to a disease during the visitation of the lords and angels, mourning was strictly forbidden, since the victim was thought to have been «taken by the angels.» The Georgian Academy of Sciences’ collection of Georgian folk poetry lists over sixty lullabies, in the chapter Cradle songs. Sixteen were specifically performed in the presence of children suffering from smallpox, measles, scarlet fever, or other infectious diseases. It was believed that the child taken by the lords and angels «goes to paradise, is an angel, and will be with the angels.» Like the shrine built in the home around the child, its coffin would be painted red and sprinkled with roses.[10] 

Ivnana - Mziuri 

This text was written the winter Lauryn Youden went through the final processes of receiving her diagnosis of fibromyalgia. It is an auto-theoretical text depicting her experiences during this process and examining the socio-cultural surroundings of receiving a diagnosis and having fibromyalgia. Informed by Susan Sontag’s Illness as Metaphor and AIDS and its Metaphor as well as by the Crip meme community on Instagram, the text includes a stream-of-consciousness listing of her desires, fears, and others' ableist biases and ignorances—beginning with «I don’t ask for help because….,» explaining with each sentence how a space for support, help, and care can be inaccessible due to ableism, capitalism, and misogyny. Also included in this text is an exploration of one of fibromyalgia’s claimed causes, childhood trauma, and the Iavnana, a Georgian pagan lullaby for sick children. This text includes two versions of the Iavana, to be played at the beginning and end of each reading.

**All of the cursive text and the majority of this work was written by Youden during altered states of consciousness/cognition due to flare ups, panic attacks, migraines, etc. Words will be spelled incorrectly and grammar and punctuation are usually flexible devices used for pausing between subjects or pacing how one reads. 

**«The More I Listen To My Body, The More I Hear It Screaming» was originally performed as part of the 2019 exhibition «WHEN THE SICK RULE THE WORLD» at Gr_nd, Berlin curated by Christina Gigliotti. This version of the text has been revised for print and includes two songs: Iavnana by the Rustavi Folk Choir and Iavnana by Mziuri, that were played originally at the beginning and end of the performance.