Maladies of My Mind
Ch.3 Stick and Stones
The hospital corridor is stale and the air has a tinge of bleach. The walls are white and are dented in places from the patient trolleys that have countlessly bumped into them. The portraits on the walls are prints of the Thai royal family and above the sliding glass doors is a slim red plastic sign with bolded white letters that say ‘Emergency Room.’
Wearing my blue surgical scrubs and surgical cap, I am standing by the Emergency Room’s entrance and waiting for my patient to arrive. The patient is being transferred from the outskirts of Bangkok to a city hospital because the local clinics are not able to provide the necessary care. The patient is a thirty-seven year-old female victim of an acid attack. According to the police reports, the jealous husband is a suspect. However, there are no witnesses other than the victim, who is in critical condition. The medical effects of sulfuric acid to the face are extensive. The severity of the damage depends on the concentration of the acid and the time before the acid is thoroughly washed off. However, according to the paramedics’ reports, the acid has rapidly eaten away the patient’s skin, layers of fat beneath the skin and underlying bone. The patient’s skull is partially deformed and her nostrils are closed off completely due to destroyed cartilage. She has also inhaled the acid vapor, which exacerbates the restriction of her airway.
I close my eyes for a moment, trying to conjure and mentally prepare for all the complications that could arise during the surgical procedure. Not everyone appreciates the attractions of surgery like I do. When I was a medical student in the operating room for the first time, and I saw a surgeon press the scalpel to someone’s body and open it like a juicy peach, there were two types of reaction. You either gagged in disgust or gaped in awe. I elicited the latter reaction. It is not just the blood and guts that entice me. It is the idea that a mere human being could have so much control over someone’s life with just a scalpel in her hand. Maybe I have no control over my own life and that’s why I am so addicted to the control of over someone else’s.
I open my eyes when I feel a tug on the hem of my surgical scrub. I look down to find a small girl with a bob haircut and uneven bangs, which look like she may have cut them herself. She’s carrying a leather bag pack that seems too heavy for her spine. There’s also a cotton tag on her public school uniform that says she is a seventh grader. However, her malnourished appearance and small stature make the girl looks like she’s no more than ten years old. “Doctor,” she tugs the hem of my surgical scrub again. The bruise on her round cheek and the cut mark across her forehead grab my attention.
“Hey kiddo.” I crouch to the girl’s level and say, “Let me take a look at your forehead.”
She flinches away at my touch. “Please help my mother first, Doctor.”
I cock my head curiously, “Where’s your mother?”
The girl raises her tiny hand and points her finger at the Emergency Room’s sliding door as a patient trolley rushes through it. The paramedics shout, “Incoming!” I’m not sure how the girl managed to get into the hospital before her mother but she is the daughter of the patient I have been waiting for.
I rush to the trolley and a group of surgical residents flock after me. Residents are surgeons in training who will assist me during the surgery. From my own experience, surgical residents are the most competitive type. They fight over the best cases like sharks swarming over their bleeding prey. I don’t blame them. Surgeons, as a group, adhere to egalitarianism. We believe in practice, not talent. The better the case, the better the practice. People often assume that great hands are necessary to be a great surgeon, but that’s not true. When I interviewed to get into trauma surgery programs, no one made me sew, take a dexterity test or checked if my hands were steady. Sure, talent doesn’t hurt. Attending surgeons admit that every couple of years, they’ll come across someone truly gifted who picks up complex manual skills unusually rapidly. It is also especially useful in the field of trauma surgery that I’m in to see the operative field as a whole and to be able to act quickly when complications arise. Skill, surgeons believe, can be taught; but perseverance cannot. It’s a peculiar approach to recruitment, but the tradition continues all the way up the ranks, even in top surgical positions. We take guppies with no experience in surgery and after years of persevered training, we turn them into sharks.
“Who’s the attending surgeon in charge?” the paramedic calls out and looks at the surgical residents, who happen to be all male. Even though medical schools are trying to recruit more women to create diversity, trauma surgery is still a heavily male dominated field.
“I am,” I announce.
The paramedic turns to me, surprised to hear a female voice. He regains his composure and speaks professionally, “This is Mrs. Sang Boonsawang. 37-year-old female. Victim of an acid attack.”
I look at the patient and realize that the damage may have been more extensive than the report. Her ear cartilage is partly destroyed and deafness may occur. Her eyelids are burned off, leaving the eyes extremely dry and prone to blindness. Her mouth becomes shrunken and her lips are partly damaged, exposing her teeth. She may lose her mouth’s full range of motion. Eating and speaking can also become difficult. In addition, she faces the possibility of septicemia, renal failure, skin depigmentation, and even death.
I look at one of the residents and say, “You.” The resident turns his attention to me. “Prep OR 7 and scrub in.” He doesn’t hide the fact that he’s elated.
I turn to another resident. “And you.” I look around the Emergency Room, trying to find the patient’s daughter but have no luck. I turn back to the resident, “Find a 13-year old girl who looks more like she’s 10. She has a laceration to her forehead. Make sure she’s all stitched up.” Disappointed, the resident opens his mouth to protest but common sense tells him to shut it.
The patient is wheeled into the pre operative area of the theatre suite. She is convulsing in pain and trying to cry out but no voice follows. It is possible that her vocal cord is damaged as well. Her arms and legs are secured to the operating table with bonds that are strong but padded so she won’t hurt herself as she struggles.
“Relax, I’m here to help you through this.” The anesthesiologist says. Because the patient’s nostrils have been damaged, giving her an anesthesia through a gas mask isn’t an option. Instead, the anesthesiologist inserts a small plastic tube into one of the veins on the patient’s backhand. He then puts a blood pressure cuff around the patient’s arm and attaches ECG electrodes on her chest.
The patient is then wheeled into the operating theatre and slides onto the metallic table. She is still awake at this stage. “We’re putting you to sleep now so you won’t feel any pain,” says the anesthesiologist. It will take about two minutes to get the equipment plugged in and for the patient to fall asleep.
Her breathing finally slows down, indicating that the anesthesia worked. I turn to one of the scrub nurses and stretch out my gloved hand, “Scalpel, please.” The nurse hands the sharp object to me. I press the instrument to the patient’s body and open her up like a juicy peach. I am in control now.
The surgery is a success. The patient is transferred to the recovery area for a short while, and then returns to her room on the ward. I am able to repair the vocal cord and unblock the respiratory airway. However, she is still in critical condition and complications may arise during her recovery. Even if the patient recovers physically, acid assault survivors usually face social implications. Such attacks typically leave victims handicapped in some ways, rendering them dependent on either their spouse or family for everyday activities, such as eating and running errands. In some cases, acid victims are psychologically persecuted. Despite having operated on a few acid assault cases myself, I rarely see the issues covered in the news. The media overwhelmingly avoids reporting acid attack related violence. If covered, the description of the attack is minimized and sometimes the media blames the victims, omits women’s voices, and treats husbands who commit these crimes sympathetically.
I enter the waiting room, which is empty except for the victim’s daughter sitting on the hospital bench. She appears to be engrossed in a hardcover government issued biology textbook. I remember reading an earlier edition of the textbook when I was in middle school. When the girl hears me approaching, she asks without tearing her eyes away from the text, “Is my mother going to be alright?”
“The surgery was successful but we still have to watch out for any sign of complications,” I say. The girl nods but continues to read. Usually, I would leave the room at this point. I’ve done my job as a physician by telling a relative about the patient’s condition.
However, I find myself trying to strike up a conversation with this girl. I ask, “How did you manage to get to the hospital before the paramedics came in with your mother?”
Once again, the girl speaks without looking up from her textbook, “I was at school when it happened. I heard that it was severe so I rushed to the nearest city hospital because I knew the local clinics wouldn’t be able to handle it.”
Impressed, I can’t help but compliment her. “You’re one smart girl.”
The girl finally looks up to give me an appreciative smile. That’s when I notice the gash across her forehead. I thought I told the resident to stitch her up. I know that residents would rather fight over interesting surgical cases rather than suture a cut. However, the sight of the girl’s bleeding forehead sets off my rage. I’m going to make that resident’s life a living hell. I look down to the girl and say quietly, “Wait right here. I’ll go get a suture kit to patch you up real quick.”
I smile reassuringly and turn around. I look up to find a brawny man wearing a hospital gown. He resembles a bear more than a man. Despite the patchy, unkempt beard and thick glaze over his eyes, his eyes bear a striking similarity to mine. His hand traces the hospital wall slowly and he limps towards me. Suddenly, he trips and I immediately rush to his side. Just when my lips are forming his name, his fingers lock around my throat and he says in a deep voice, “It’s good to see you again, sister.” He spits out the last word like venom. His grip tightens. Oxygen is sucked out of my lungs and I am losing the battle to hold onto my consciousness.
“Sticks and stones will break my bones
But words will never hurt me”
I first heard of the Sticks and Stones children’s nursery rhyme when a group of English missionaries came to our village when I was in pre-school. We call these towering, pale foreigners ‘Farang,’ which is also a Thai word for the guava fruit. I was curious as to why we call them guava because the two bear no similarities at all. One is green and delicious. The other is white, at least the ones I have seen when I was younger. Most importantly, I doubt that a foreigner tastes as a good as a guava. The elders in my village said I’m too nosy for my own good and that I should just continue to call these outsiders Farang like everyone else does. After days of burying myself in the public library, I finally learn that foreigners are called Farang because the French were the first Europeans to establish ties with Thailand. I guess the words Francais and Farang sound close enough that they become interchangeable.
Even though it has been years since those Farang missionaries have taught me the meaning behind the Stick and Stones nursery rhyme, I disagree with the lesson behind it. The rhyme persuades the victim of verbal assaults to ignore the pain that comes from words, to refrain from retaliation, and to remain calm and good-natured because words can’t break your bones.
I have been broken physically countless times at the hands of my drunken father. But those broken bones never hurt me like words do.
There were two times words destroyed me.
The first time was when I first learned about the devastating impact my mother’s illness had done to our family.
I was lying on the hospital with my back exposed. The nurses rinsed my burned skin with cool water and left to retrieve the antibiotic ointments. I recalled crying in pain at each contact to the open blisters on my back.
At the corner of my eyes, I saw my brother walked into the room. Awut approached me and I noticed the dirt stains on his round cheeks. He kept a straight face and said, “I just gave the police a statement about the fire accident.”
The memories of my brother holding an oil container and lighter in his hands crept back to me. I avoided his eye contacts and said quietly, “An accident huh?” Maybe I was mistaken. Maybe I was imagining things when pain from the fire consumed me.
“That’s what I told the police,” Awut replied stoically. I sighed in relief. Of course, my sweet older brother who cried because of the most mundane things wouldn’t do the unimaginable. “But just between you and me,” My train of thought suddenly stopped when Awut continued in a cold, distant voice, “Father shouldn’t have left his lighter within a child’s reach.”
My face, the once blank canvas, broke – first into confusion, then shock and finally realization. My mind witnessed wave after wave of emotion; as it crashed down, my lips trembled slightly. Before I could utter a word, I heard the door propped open. My brother’s back straightened and he asked, “Doctor, do you have news about our mother?”
The doctor cleared his throat, “You might want to sit down for this.”
I blocked out all the noises in the room and just stared at the glass of water on the table stand near my hospital bed. Through the water in the glass, I saw a distorted image of myself. My eyes traveled up to where a wound licked across my forehead, singeing away my brows but missing my eyes. The scent of blood curled into my nose, down into my throat, squeezing it tight with despair. I was brought back to the memory when a shaman whipped my mother repeatedly with the dried stingray tail. I tried to stop him and I was hurt as a result. But it didn’t matter at that time because my mother was alive. All those years that I thought she ran off with another family was a lie. She was actually sick. My father had hid her away from the world because he was ashamed of her mental illness. When her conditions worsened, he paid an undertaker to fake her death so he could hire a shaman to drive my mother’s illness away without suspicions.
But by the time the hospital ambulance arrived after the fire, my mother’s health had deteriorated due to constant beating and starvation. Not long after her hospitalization, she passed away. I also found out from the doctors what mental illness my mother was suffering from. I had to ask the doctor to repeat the name of the disease twice because it was in a foreign language. The disease was named after a Farang physician, George Huntington, who wrote about the illness in late 1800s.
The doctor concluded that my mom had Huntington’s disease; a rare mental illness often described as a deadly combination of Alzheimer’s, schizophrenia, and Parkinson’s. The doctor explained that in Thailand, there has only been one reported case in the past twenty years. However, this low number may result from under reporting and the extrapolated statistics of Huntington’s disease prevalence in Thailand is approximately 2,000 people.
A few key words seared into my memory regarding this disease:
- 50 % chances of inheritance
- Symptoms begin at age 30 to 50
- Losing control of mind and body
Early signs of the disease vary greatly from person to person. Behavioral symptoms may include mood swing, anxiety, memory loss or hallucinations. Physical symptoms progress from clumsiness and loss of coordination to the point where speech is slurred and vital functions, such as swallowing, eating, speaking, and walking, become abysmal.
I took in the doctor’s description of the symptoms my mom was supposed to have. My first reaction was denial. From what I remembered, mom was an adventurous woman who loved to take Awut and me to swim in the lake. But then I recalled how her body twitched uncontrollably when I encountered her in father’s praying room. Coupled with Awut’s account of her incorrigible speech, the doctor’s description of the disease my mom was suffering from sounded accurate.
My second reaction was anger—anger of what my mom had to go through and anger towards my father for putting her through more suffering. But selfishly, I was most angry at the fact that my brother and I could inherit this devastating curse at just a coin flip away.
I recalled the doctor saying that there’s a test I could take to see if I carry the gene for the disease when I turn eighteen. Since there is no cure anyway, I didn’t want to know. But, my brother didn’t share my opinion. He wanted to know. He believed that knowledge is power.
The second time words destroyed me was two weeks after Awut’s eighteenth birthday when he told me his genetic test came back positive.
For more information on Huntington’s Disease and its symptoms, please refer to this our articles.
Maladies of My Mind
Ch. 2 Twenty Years Later
My insomnia’s acting up tonight. Instead of sleeping, I am standing in the lobby, and taking in the bright chandelier light, the sound of an artificial waterfall, and the wooden Thai sculptures. In front of me, the casino entrance beckons. The ceiling lights are muted inside, allowing the glow of a hundred slot machines to fill the room. As I move towards the entrance, the sounds of gambling draw me in.
The guards in the doorways are vigilant, and whatever they miss, the eyes in the skies catch. Most people don’t look up, but I do, and there are casinos where I’ve seen over fifty camera domes around me. Entranceways are often covered by five or six, and sometimes even more domes. The domes are hiding all sorts of cameras looking at us, through us, and maybe even inside. I take one last sip of my vodka and toss the bottle aside. I skip the long line of people and am greeted by a woman.
The woman wears vibrant clothes that contrast nicely with her curly black hair. I admire her icy personality and sultry voice. She says, “I didn’t know you’d be coming in tonight, Orasa. You mentioned something about having to make an early round tomorrow.”
I shrug, “I’ll wake up just in time for that, Kris. For now I need to do something to help me sleep.” Kris is the owner of the casino and she also lives in the room right across my apartment. We became instant friends and at one point, even more. I broke things off because I didn’t want to commit.
As I walk beside her, the plush carpet and art gives way to hard florescent light, linoleum, and serious men in suits. “Quite an establishment you got here, Kris. I heard you finally got the government’s official approval for the casino. Congratulations.”
She smiles and continues to lead me through the casino. It’s filled with color, and the constant undertone of the slot machines. I really don’t know how to describe that sound. It’s neither musical nor just noises. It’s more of a robotic background – tinkles, clanks, and the occasional beep of brief snatch of melody. The sound of the slot machines in action sends my thoughts scattering. No one talks. The gamblers are serious, focused on their machines. Most players have gray hair. They sit back, lean forward, and draw deeply on cigarettes and play. Some push a button. Others pull a lever. I just want to close my eyes and let the chaos take me away.
Kris motions her head closer to my face. I feel her breath falling on my neck as she whispers, “I’m assuming you’re here for the regular game.” When I nod, she continues, “You got chips?”
I smile and hand her my credit card.
In the center of the casino, guarded by rows of slots, I find the games. There are crap tables, poker, blackjack and roulette. The players talk but their language is abbreviated. “Fold,” “call,” “all in,” and the patter of dealer as he rakes the chips and deals the cards. I take a seat at the poker table and order a margarita.
“So that’s it then, we start the game huh? I ain’t waiting no more,” I hear a man sitting besides me say. He has a weird accent and is a lot paler than most people I’ve seen in Thailand. I can’t tell his ethnicity, which is unusual around here, considering how few few foreigners there are since the military coup in Bangkok a couple months ago. He looks Caucasian. No wait, Thai. A mix maybe. I don’t know but he’s attractive in a way that distracts me. The man takes another gulp of beer and burps out loud. Okay, maybe he’s not that attractive. He arranges his chips in an orderly fashion – ten chips per pile and ten piles in total. He nudges me in the shoulder, “You know the rules, eh birdie?” I give him a side-glance and a half smile.
The dealer shuffles the cards and lays down two cards for each player and one for himself. He burns one and places one in the center. He burns another and places one more in the center. He repeats the pattern another time and leaves the deck by the side.
There is only one winner and the stakes are huge. I’m sweating and my left leg is shaking as I reach for my cards. I slowly turn my cards open; making sure no one else sees them. Ace of Hearts and King of Hearts. I smile mentally. My face doesn’t move an inch.
“I call 500, losers!” shouts the man with the weird accent. He pushes five large stacks of chips towards the center of the table and looks at his cards one more time. He looks at me and smiles, “It looks like you’re my lucky charm, birdie.” He’s brimming with confidence.
All the players sigh and put their cards down. “Fold,” they all say.
The man with the weird accent grabs the beer bottle and kisses it. He starts swaying his head sideways. “It appears today is my lucky day. Hmm…Ok what day is it again, birdie?” He turns to me and laughs, “Yea it’s Friday. Friday, Friday, fun fun fun. That song cracks me up every time.”
Just before he reaches for the prized chips, I grab his hand. “I’m calling your bluff.” Then, I see it. It’s subtle but I can see through his façade of confidence when a drop of sweats beads on his forehead.
The hint of his nervousness almost vanishes a second later when he lowers his gaze to my hand on top of his. He smirks, “Aye, birdie. If you want an excuse to hold my hand, all you gotta do is ask.” He removes his hand from mine. He motions towards his piles of chips and pushes all of them to the center. “All in,” he announces.
Maybe he’s not bluffing after all. Adrenaline rushes through me. I hear my heartbeat pulsing in my ears, blocking out all other sound except the breath that is raggedly moving in and out of my mouth at irregular, gasping intervals. I cannot tear my eyes away from the prized chips. The red paint that covers them seems to dance in synchrony with the glow of the surrounding slot machines and they have captured me. I cannot comprehend what is happening to me. The connection has to hold. If it breaks, I fear something within me might break as well. I have to win those chips. “All in.” I move all my chips to the center of the table.
The man with the weird accent stops smiling and drops his cards on the table. He sighs, “You caught my bluff, birdie.” He takes another gulp of beer and turns his attention to me. “How about you take me out to dinner with all the money you won?”
After the game, I look at my watch as I am about to head out of the casino. It’s 2pm and I have about 6 hours before I have to get ready for work. I’m beginning to regret my decision to order so many drinks after the big win.
As I stumble, I feel someone catch me by my shoulders. “You shouldn’t be driving home tonight,” I hear a woman’s voice. My head is buzzing from alcohol but I recognize that voice right away.
I take in Kris’ appearance. The room is too blurry for me, and all I see are glimpses of her glossy skin, curly hair, and frowning lips. I lean forward and brush my lips over her ear, “I think I’m a tad bit tipsy, Madame Christmas.” Her body stiffens at our close contact. It’s so easy to tease her, especially when I use her nickname.
Kris’ face is almost covered in shadows. “Orasa, how are you getting home?” Her voice softens, “And what about your brother? The psychiatry ward called again. They said Awut’s mood swings and hallucinations are getting worse.” I shrink away instinctively at the mention of my brother.
I flatten my hands against her shoulders and push her away lightly. I smell alcohol in my own breath. It doesn’t take too many drinks to reach the legal limit; but my fastidious side still wants to check. I reach into my coat and bring out a portable breathalyzer. I blow into it. 0.16 BAC. I sigh knowing I can’t legally drive home.
Kris looks at the monitor on my breathalyzer and frowns. “Let me drive you home.”
I snort, “No need for that.” I scan the lobby. I smile when I find my target. When I turn my heels, Kris grasps my hand. Her eyes are filled with concerns. I tease, “Why? Do you want to join me?” She continues to frown. I squeeze her hand reassuringly. She hesitates but finally lets go.
I walk towards my target and tap him in shoulder, “Where do you live? And how much did you drink tonight?”
He looks confused but then his expression turns into amusement. He answers with a weird accent, “Ramkamhaeng 84, birdie. And I only had one bottle of beer. Couldn’t afford to order more after I lost all the chips to you.” He smiles slyly, “Why? Are you going to compensate me with a date, birdie?”
Ramkamhaeng 84. Perfect. That’s two blocks away from the hospital. I prop the breathalyzer in front of the man’s face and announce, “If your BAC level is below 0.08 and you have a car, let’s skip the whole dating thing and go straight to your place.”
He blinks. “W-what?”
Without missing a beat, I add, “Just don’t get attached.”
Screams pierce the air as the smoke engulfs my father’s praying room and the collapsing aluminum roof mows down a group of monks in orange gown. A strangled cry comes from my throat but no words follow. I lost grip of my icy demeanor, when I see the fire creeping towards me. I inch my hands to my ears, trying to block out the angry sounds of the crackling flames. When I straddle the corner, I swing my right foot up over the side. Suddenly, I feel something catch my feet, dragging me across the floor. Panting and trembling, I try to crawl away from the grasp and grab the edge of the wall for anchor. The image of my mom comes rushing back to me. I remember her anguish cry and her shaking body as the shaman whips her repeatedly with a dried stingray tail.
“Mom…” I croak into the abyss, heedless of being recognized. “Mom…”
“You need to get out of here!” I turn my head towards the source of wilderment and catch a glimpse of a pair of eyes that scare me to my bones. Father.
I smell the leaking gas nearby and the next thing I know is that my father is carrying my body as he limps towards the door. We are so close…for a moment my father looks at me.
Then, he flings my body and I stumble to the outside world. I open my mouth to call after him but that is when I see an explosive shockwave consuming everything and everyone in its path.
There are ringing in my ears. My head throbs and I want to vomit. But soon the nauseous feeling is replaced by a single sensation—agony. Flame runs its tongue up the back of my body and I can’t feel anything else but the unrelenting burning of my flesh. I open my eyes to see my brother, Awut.
‘You’re not supposed to be here,’ I want to say. Father will be upset if he finds out Awut comes to his praying room. So what is he doing here and why on earth is my older brother holding an oil container and a lighter in his hands?
I jolt awake in bed, gasping. I can barely breathe as my lungs heave in an attempt to suck in air. ‘It’s just another dream,’ I remind myself. I look around frantically. The unwelcoming white walls blind me, and the smell of harsh cleaning solvents fill my nostrils. The floors are black and white tiles arranged in checked patterns, and the walls are interrupted by sets of glass, revealing views of the bustling Bangkok city outside.
I turn to the side and notice a bright neon sticky note on the nightstand with a neat cursive handwriting on it. I pull the note off and take a closer look at it. “Your clothes are folded in the closet,” I read quietly. That’s odd. When I wake up at a stranger’s place, I usually find my clothes scattered across the floor.
I flop the blanket to the side and hop off the bed. I scan the room and my eyes land on the white closet that is probably large enough to fit a full-grown man inside. I saunter towards it and am faced with a towering mirror attached to the closet. I pause to look at my own reflection. I’m wearing a matching set of imported Victorian Secret underwear. I grin smugly. Not bad for a thirty-something year-old woman. My hand reaches for the closet’s metallic handle and when I slide it open, the smell of harsh cleaning solvents that I woke up to greet me again. On the top shelf, there are three stacks of towels folded stylishly in a triangular shape like the towels I in a fancy hotel. The stacks are organized according to their color with red towels to the left, followed by yellow and then blue. Beneath the top shelf, men suits hang across the closet, arranged from light colored suits to darker ones. At the bottom, I see an extra comforter set with matching color pillows and folded blankets placed to the side.
In awe of the closet’s organization, I almost forget to look for my own clothes. I finally find my dark blue blouse and slim black pull-on dress pants folded neatly at the bottom corner of the closet. When I grab hold of my clothes, I smell lavender scented detergent. I realize that not only are my outfits folded neatly, they have also been washed and ironed.
After I am dressed, I find the man I came back with last night sitting by the kitchen table. Noticing that the man is reading a newspaper, I try to walk out of the apartment as discreetly as possible. I stop when I hear him say, “You mentioned you like Thai boxing last night, birdie.”
I did? I must have mentioned it once I got back to his place. I was too drunk to remember much of our conversation from last night.
Before I could utter a response, the man walks up to me and says, “I have an extra ticket to a Thai boxing match if you want to come along, Orasa.”
I’m slightly taken back. The man with the weird accent just replaced ‘birdie’ with my actual name and asked me out on an actual date. Didn’t I tell him not to get attached?
“Look…” I try to remember his name.
“I’m Sujin,” he beats me to it.
“Oh,” I nod slightly, biting my lips as my cheeks color. “Look…Sujin. You seem like a nice guy but I’m just not looking for a relationship right now,” I use the same line I’ve rehearsed many times before to men and women I hooked up with. I roll my hair back and confine it with a clip I found in my pant pocket. I’m all business now, taking refuge in the formality of my professionalism. “I have to go to work if you’ll excuse me– ”
Sujin pops a grape into my mouth, “Aye, Orasa. You’re one rude birdie. First, not remembering my name and now you’re going to leave without eating my home cooked breakfast.” Taking advantage of my befuddlement, he grabs my hand and tugs me to the kitchen table. He places me on a seat and heads to the kitchen. He returns with two plates of breakfast and says, “I couldn’t recognize you at first but now that you roll your hair back like that, I think I’ve seen you at the hospital before.”
I flinch. Is he a patient? Or is he a hospital staff member? This is bad. What if he’s one of my co-workers? I gulp. I tend to forget a lot of faces at work; and I don’t want to break my personal rule of not getting involved with someone I work with. I speak casually, “So, are you a patient?”
“No, I’m a doctor,” he replies.
I pretend to act cool. “I see. So, what department do you work in?” Please not surgery. Please not surgery. I chant mentally.
“I’m the new attending psychiatrist,” he adds enthusiastically. “I just moved here from the States. I’m originally from the UK though. My father’s British and my mother’s Thai. To be honest, I’m quite excited to back in my mother’s home country.”
He gives out too much familial information for my taste. Nevertheless, I’m relieved. At least psychiatrists and surgeons do not interact that much and I probably won’t see him again. Soon my relief turns into confusion. I look around the room and notice Sujin has a nice apartment. From what I recall last night, he has a fancy sports car too. I blurt, “How much money do you make?” A long silence follows and I break it, “I mean, this isn’t the States. Thai people don’t use shrinks. Shouldn’t you be broke or something?”
He stares at me. I didn’t mean to offend him because I was actually curious. But it’s probably better this way. No strings attached.
Finally, he smiles and pushes a plate of breakfast towards me. Thai people tend to eat porridge for breakfast but I notice that Sujin has prepared a Western style breakfast. He made me bacon and scrambled eggs with grapes in one corner of the plate and steamed vegetables in another. I look up and notice that he isn’t eating his breakfast but using his fork to separate the corns, carrots and broccoli from the vegetables mix into their own smaller piles based on the types of vegetables. Without looking up from his plate, he says, “Oh, don’t worry about it, birdie. I have Obsessive Compulsive Disorder. I’m better now though. I used to pop tons of pills.”
I’m surprised at how casually he reveals this private information. Finally, I manage a question. “How can you admit it so easily?”
He looks up from his plate and returns my gaze. “Would you hide the fact that you can’t produce insulin if you have diabetes?” He explains, adding quietly and sitting straight, “Psychological actions can result from of physiological causes; and I think we shouldn’t treat mental illness differently from other diseases.”
I take in his words but don’t say anything. I look at my breakfast and take a spoonful of steamed vegetables into my mouth.
Maladies of My Mind is a fictional account of a female surgeon in a top teaching hospital in Thailand; and how she struggles to come to terms with the possibility of carrying the gene for an incurable neurodegenerative disease in a country where mental illness is a stigma. This story does not reflect the experience of any one individual, nor does it cover the entirety of a mental illness experience in Thailand. However, it hopes to explore themes of social stigma in a country where mental illness is not often talked about. Hopefully, Maladies of My Mind, told from a perspective of someone affected by a mental disorder, will help readers to understand mental illness and empathize with those affected by it.
The following is a series of fictional short stories from the perspective of someone with Juvenile Huntington’s Disease. These works do not represent the experience of any one individual, nor do they aim to encompass the entirety of an illness experience such as JHD. Rather, these stories strive to capture and explore themes presented across different JHD and HD experiences through a collection of punctuated narratives. Hopefully, engaging with JHD through storytelling will allow readers to better empathize with, and understand the nature of, the experience of this illness.
It’s the first day of classes and I’m late. I’m running both towards and away from my destination, unable to nail down a sense of direction. Suddenly I arrive, unsure how I managed to find the room. The door swings open to reveal a huge lecture hall full of people. I trip on my way in. Darn it. I look around and see an ocean of faces all trained on me. I don’t recognize any of them, their features blurry and indistinct. Then a few gazes lock with mine and suddenly they are familiar. My high school classmates. I don’t even question their presence at the same college as myself, but instead sit down in a desk immediately in front of me and hurriedly dig out a notebook. When I look up the room has changed and my backpack is gone. I’m at a round table with people I don’t know, blank faces that look somehow identical and radically different from each other. I have a feeling we are waiting for someone, a professor perhaps? When did I sign up for this class anyways? The door opens and someone enters the room. The furniture and people disappear, and I’m standing right in front of the newcomer. She introduces herself and reaches out to give me a hug. Where did everyone else go? Stepping back, I look into her face and see my own eyes staring back at me.
My 5am alarm jolts me awake. Smacking at my phone a few times, I finally manage to hit the snooze button, but it has already done its job. Lying in bed, I attempt to stay in my dream haze as long as possible. I grasp at memories just at the edge of my mind, trying to recall the scene I was pulled out of. A room. A different room. That face.
Nothing, it all slips away. Except for those eyes, the same ones that have been haunting me all week. Big, brown eyes with flecks of gold in them, the same as my own.
Their owner never says a word. She appears, attempts an affectionate gesture, and meets my gaze for just a moment before I am pulled back to reality. I know it makes the most sense to say that this woman is my mother, showing up in my dreams as I prepare to embark on ‘adulthood’. But I have long since adapted to living without her and my high school graduation doesn’t seem like a good enough reason for her sudden presence.
You can’t miss what you never had right?
I rotate onto my back and stare at the ceiling, contemplating the significance of the day — I’m almost free. Graduation day is bittersweet for a lot of people, but I feel only relief at its arrival. Once today is over, only a single summer stands between me and the rest of my life.
As Valedictorian and Athlete of the Year, I am giving a single double-length speech, the two titles usually going to separate individuals. I attempted to turn down the offer to speak, not feeling much excitement about speaking to a group of individuals I was hoping to never see again. However Carley talked me into it and helped me write the speech, so I guess I’ll put on the bunny ears for a day.
Luckily we are both heading off to Duke, her on pure merit, me on running. It’s actually a miracle I pulled off good enough grades to stay Valedictorian and not have my offer rescinded; second semester was tough once the burnout caught up with me and I could not focus in any of my classes. Senioritis is not something I had expected of myself.
All right, I’ve wasted enough time staring at the ceiling, time to get going. I slowly stand up. My body resists the movement, straining at the change in position. I’ve been remarkably stiff in the mornings lately, my muscles tightening almost to the point of pain. Maybe I should stretch more.
Walking to the bathroom, I can hear my aunt and uncle snoring in their room down the hall, their dog Elvis padding towards me to say good morning, and the soft coos of the mourning doves out back. I close my eyes and enjoy the pre-dawn sounds— this has always been my favorite time of day. On autopilot now, I throw on shorts and a sports bra before grabbing my favorite Nikes. In June, even the early mornings are warm enough to build up a sweat, and I remember to throw on sunscreen before chugging some water and heading out the door.
Outside, the horizon is a blooming shade of coral above a still dark landscape, a new day just moments away. I set off at a leisurely pace on my usual path, enjoying the pain in my legs as they work out the tension from the night.
The beginning of this run is flat and bare, a few Joshua trees the only greenery, but I remind myself to stay focused so I don’t lose speed or trip. When I reach the top of a nearby hill, I pause, needing a breather. I gaze out at the now brightly lit view.
Without the pre-dawn shadows to hide behind, I can see the entirety of the town. There is the high school whose fences I have fought for the last four years. There is the single street of downtown where adults go for a night out and kids go to get into trouble. There is my dad’s house, only a few miles away from my aunt and uncle’s. There is the Old Mill Bridge, crossing 50 feet over a long ago dried-out riverbed— maybe my mom thought there was still water in it to catch her when she jumped. I turn away from the sight and take off down the hill, hoping to put some distance between my thoughts and my body.
Why is she on my mind again?
I need to stop obsessing over someone long gone and buried. For the most part what had happened was thoroughly swept under the rug — or in my dad’s case drowned in gin. But throughout the years rumored mental health problems have been brought up by more than one of my peers. Whatever the reason, at the age of only 20, Denise Thompson took a swan dive that left her husband in a 17-year tailspin and her year-old daughter without a mother.
She was not that much older than me.
Disturbed, I push myself to move faster, but quickly falter. Still panting, I am overcome with exhaustion and have to stop again. Shoot, I need to get back to a normal training schedule; I am getting way out of shape. I have not been able to finish my morning trail at a decent speed in weeks. I need to kick it up a few gears if I am going to be ready for the fall.
I’m still tired but have caught my breath, so I continue the descent at a slow pace, watching the ground to avoid any slipping— my hands are still raw from where the gravel cut my palms last week and my knees have scars from the months before.
Hot and sweaty in my dress and graduation gown, I struggle to keep my cap on against the wind. Everyone is lined up on the soccer field adjacent to the stadium, waiting for the ceremony to begin. A class of only 57, I can recite all of our names in alphabetical order in my sleep. The music finally starts and that is our cue. We walk into the stadium single file, trying to look as though we don’t all have minor heat exhaustion. I arrive at the front row and take my seat next to Carley, resisting the urge to hold her hand. Once everyone is seated, we say the Pledge of Allegiance and someone’s little sister sings the national anthem. Our principal starts the speeches with a few non-specific words about school pride and tradition. The District Superintendent follows him, rambling on for a solid 20 minutes before it is inevitably time for student speakers. Going first is Joey Anderson, the student body president and town’s future mayor to hear him tell it. He stumbles over a few cheesy words about our accomplishments thus far and our impending entry into adulthood before closing with our (only) school cheer.
I know I am next but still futilely hope that I’ll be saved the pain of giving the fluffy, inspirational speech written on my notecards. When the last ‘Go Bulldogs’ has finally faded away, Joey smirks and sarcastically introduces me as the school’s “star student”. No one else seems to pick up on his tone but me— does everyone think he is praising me?
No. The little rat is taunting me. I feel a boiling rage begin to build up inside of me as I stand to walk the few steps to the stage. I want to throw Joey off of it with every fiber of my being, but he returns to his seat before I get to him.
How dare he mock me? Yes, I am the star of this mediocre school and town. And I worked incredibly hard for it. Screw him and everyone else like him in this town— telling me my whole life that I was crazier than my mom, that my plans were nothing but a pipe dream. This town has given me wall after wall to tear down on my way to success and now that I have finally done it, I am being teased as though I’m just some third-grade brownnoser. Not a pat on the back, not an apology for doubting me— for holding me back.
Forget them, I don’t need this.
Standing at the podium, I look out and realize that my face must be betraying my emotions.
Good. They should know how I feel.
The speech Carley and I wrote flies out of my head and I have nothing left to say but the truth. “I have hated the last 17 years here and I hope to never come back. Good-bye and good luck. Actually, just good-bye.”
I stalk off the stage, across the turf, and straight out the main gates, leaving shocked silence behind me. Still fuming, I kick at a trash bin and knock it over, scaring a flock of birds out of a nearby tree. As I watch them fly away, my anger dissipates and all I feel is emptiness.
Arriving back at my aunt and uncle’s, I look around my room unsure what to do.
Should I pack?
No I guess that’s bit extreme.
But staying is going to be exceptionally miserable now that I have basically flipped off the entire town. I feel a twinge of guilt for my aunt and uncle, who are probably embarrassed after my stunt. They don’t deserve that. They took me in when I had nowhere to go and they’ve always been kind to me, hell they even showed up to a few races. I hear the front door open and cringe at the thought of facing them, but I know it is inevitable.
They knock on my door before entering. Standing there, they look worried, exceptionally so actually. This strikes me as odd, I had anticipated anger.
“Michelle, we need to talk to you,” my aunt says.
Ominous, but expected.
“Yeah okay. Look, I’m sorry about what I did back there, I was angry at Joey and it got me rolling,” I explain.
“That’s okay, we get it. You have some right to be angry— the kid was being petty. But it was just a dumb comment. What made you so mad?” my uncle tentatively asks.
“I mean he was being a jerk. And it’s not fair that he can just get away with that.” I see the look in my Uncle’s eyes and feel guilty; I must have really embarrassed them.
“And okay yeah I guess I overreacted. But I was just so angry— I can’t explain it. I’m… I’m sorry guys.”
“We forgive you,” my aunt responds, “but we’re worried about you.”
Do they think I have anger management problems or something?
“Look, I’m sorry I worried you, but I’m okay. I just got a little angry,” I say in defense.
My aunt looks at my uncle before responding, “Michelle we know, but you seem to get a little angry a whole lot lately.”
“What are you talking about, no I don’t,” I snap.
My uncle steps in now, “What about after that final race earlier this year? You almost bit off your teammates’ heads.”
“My last race? You mean the one where I came in second? Of course I was angry I had a right to be! I shouldn’t have lost,” I say.
Thinking back I remember that day. I had fallen and twisted my ankle. I kept running but didn’t stand a chance at taking State after my mistake. It killed me to lose.
“Alright, what about last month when you couldn’t find your shoes? You tore this room apart,” my aunt says.
“Ugh, okay, maybe I overreacted then. But you know those are my favorites, I thought Elvis had eaten them. Look why are you bringing this up, do you want me to go to anger management classes or something?” I ask.
My aunt glances down, “No Michelle nothing like that, we don’t think it’s your fault… You, you may want to sit down, we need to tell you something.”
All right, this is weird.
“Um okay… what is it?” I ask.
“Well, it’s about your mom…” my uncle answers.
Looking at my aunt, I see something that looks like fear in her eyes. Or maybe it’s grief; she has never been willing to talk about her sister.
Why do they want to talk about my mom?
I can’t help but think about my recent dreams, my obsession with the Old Mill Bridge. Maybe they know about the dreams.
Have I been talking in my sleep?
Hesitantly, I perch myself on the edge of my bed.
“My mom? Um, okay, what do you want to tell me?” I ask.
“Has your dad ever told you why she killed herself?”
Surprised I respond, “No, he didn’t. I thought she went crazy, people have said she was… distressed,” trying to save my aunt’s feelings.
My uncle looks at my aunt and she nods, her eyes glazed over with tears.
Confused, and more than a little afraid, I shoot off a stream of questions, “What the hell is going on? Why are you both acting so weird? What do you want to tell me about my mom?”
My uncle looks at me and says, “I don’t know how to tell you this Michelle, but your mom was sick. That’s… that’s why she jumped off that bridge.”
“Sick?” I ask, “ Like she was insane?”
Are they trying to say she was schizophrenic or something?
What does this have to do with me?
My aunt suddenly jumps back into the conversation, “No, no, she wasn’t insane. Michelle, your mom was diagnosed with early-onset Huntington’s.” She looks visibly ill as she forces the words out.
Surprised I reply, “Huntington’s… I’m sorry what, what is that? Why does that sound familiar?”
“It’s a brain disease, we don’t know that much about it but… it’s fatal” my uncle answers, my aunt too choked up to say anything more.
After a moment I ask, “Wait, so she killed herself because she was going to die anyways? How long did she have left?”
I feel surprised and hurt, old wounds I thought long ago healed opening up. My mom chose to die. I always thought it wasn’t her fault… she had a mental illness or something. She went crazy— you can’t blame someone not in their right mind for their actions, for abandoning their child.
“No, no that wasn’t it. I mean partly yes, but it was the guilt that killed her. Michelle, this disease— it’s genetic,” my uncle responds.
All the blood drains from my face as I realize what they are trying to tell me.
Even my one biology class had taught me enough to realize what that meant. I might get it.
“Why are you telling me this now?” I ask them, not wanting to hear the answer.
My aunt can’t look me in the eye.
My uncle answers, “Because the doc told Denise that there was a 50% chance she passed the gene on to you. We, we always hoped that you wouldn’t get it. That maybe it was a mistake, or that you would beat the odds. But today… well, your mom was angry a lot before she was diagnosed. She… couldn’t control it.”
My aunt finds her voice again and continues, “She got clumsy too. She had been a dancer, but all of a sudden she was tripping over doorways.” Overwhelmed, she buries her head into my uncle’s chest and the floodgates open. But her sobs feel miles away.
My runs. I fall all the time.
No, there is no way.
I realize that my hands will not stay still.
50% chance, that’s a coin flip.
Looking up at my aunt and uncle, I realize that they are horrified at the sight of my shaking hands.
“Please get out,” I say.
My uncle hesitates, but looking at his sobbing wife, decides otherwise and gently guides her out the door. Before he closes it he looks at me and says, “Please talk to us. You can get a test done to check. You might not have it,” trying to infuse his words with hope. They ring hollow.
Quietly, they exit the room. The moment the door shuts, I jump across the room to my old desktop and open up the web browser. I type in “Huntington’s Disease”.
Almost 3 million hits.
The first is the HDSA site — Huntington’s Disease Society of America.
Shoot, this is real.
Reading quickly, I see “fatal genetic disorder,” “deteriorates physical and mental abilities,” and “no cure.”
Do I have this thing? No way. There’s no way.
“Symptoms usually appear between the ages of 30 to 50.”
I’m too young.
Then I see a header “JHD Overview,” followed by a short paragraph. “In approximately 10% of cases, HD affects children or adolescents.”
There’s no way, I have to be too old for that. I’m 17.
Opening a new search bar I type in “Juvenile Huntington’s Disease.” I find a different site.
“20 years or younger.”
Too shocked to move, I stare at the screen. I’m looking for something — anything — that will confirm this isn’t me. I come up empty. Frustrated, I stand up and grab my backpack on my way out. I don’t know where I am going but I need to get away from here.
Maladies of My Mind
Ch.1 Father’s Praying Room
I see sacred white strings tied around my mom’s ankles and wrists. Although I haven’t seen her since father told us that she left us for another family, I want to see her one last time. The charred body lies before me, burned beyond recognition, but the necklace father gave her years ago is still recognizable. I wouldn’t have believed that the burnt corpse was my mother if it was not for that necklace and my trust in the elders. They say my mom died in a fire accident. She is laid out on a table with her hands held together in a prayer-like gesture, holding a lotus flower and incense sticks. I look down at her blackened face and graze my hands over her necklace. Bits of ash flake off onto my hands. The act alone almost causes me to break mentally. The smell makes me turn my head and gag. My hands start trembling so hard that I push them against my black dress in an attempt to steady them. The undertaker pulls me aside and gently puts a coin in my mother’s mouth. I don’t know what sets off my anger, maybe it’s the ash stains on my hands that I can’t seem to rub off or the fact that my dead mother has broken her promise to never abandon me for the second time. First was when she left me for another family and now she has left me forever. The undertaker stops me before I can shove that stupid coin down her throat.
While he subdues me, I notice a slight difference in the undertaker’s choice of outfit in comparison to the rest of the guests at the funeral. Wrapped around his black cotton shirt is a traditional Hmong sewing embroidery piece. I learn in the history class that hundreds of thousands of Hmong refugees flee to Thailand seeking for political asylum during the Vietnam War and many haven’t left. However, most of them are not registered as Thai citizens and have to live as nomadic hill tribal villagers. They often seek out menial jobs to pay for their living. I’m not surprised that a Hmong is working as an undertaker, a job often labeled as that of a lowest social class. I recall father mumbling in his drunken state, “Yea those dogs clean out the entrails of the dead. Don’t associate with them.” But still, I can’t help but admire the details of the artistic embroidery piece attached to the undertaker’s shirt.
As if I am caught committing a crime, I tear my eyes away from the Hmong outfit. To distract myself, I take note of others around me. It’s been seven days since my mother passed away but the monks continue to chant and people in black continue to weep. They take turns pouring scented water over her hands. Most make blessings or ask for forgiveness for past misdeeds. The line to my dead mother is endless and I am waiting for my older brother, who is almost fourteen and a year older than I am but his squeaky, stupid sobs put me in a bloody temper. “Stop crying, Awut. Father will be displeased if he finds his eldest son crying like a little wuss.”
“But that drunken fool isn’t even here, Orasa.” My brother stops crying and those angry brown eyes are now playing tricks in the light coming from the candles situated around the temple. “He won’t even come to Mom’s funeral.” His dirt marked face wears a painful expression and while I am not crying like he is, his face mirrors my own. My dark short hair makes me look more like a boy than a girl; and more often than not, people mistake my brother and I for twins. My train of thought is interrupted when I feel drops of water falling onto my face.
“It’s raining. Let’s go home before father knows we are here,” I mutter. When Awut gives me an accusatory look, I deadpan, “Or would you rather face father’s wrath tonight? I’m not in the mood to get kicked out of the house again because of your stupidity.” My brother looks like he wants to beat the shit out of me. Instead, he sucks in his round cheeks and stares past me. Even though he’s my older brother, I’m the scarier of the two of us and he follows me around like he’s the younger one.
We find ourselves rushing to our house on silent feet. I nearly slip. It has begun to rain and everything turns slick. We make our way to the wooden fence that circumvents our house, and I climb on top of it. As I crouch on the apex of the fence, I look down to my brother and tilt my head to signal for him to follow my lead, “Come on over, you coward.”
He ardently shakes his head. He’s too scared that our old man will be waiting for us on the other side. I roll my eyes. I dangle on the edge of the fence for a few moments before my trembling hands finally let go. My legs crumple beneath me when I land. The impact knocks the breath from my chest, and for a moment I can only lie there on the muddy ground, drenched in rain, muscles aching, fighting for air. Strands of my hair cling to my face. I wipe them out of my way and crawl onto my hands and knees. The rain adds a reflective sheen to everything around me. My focus narrows. Awut and I need to get back into our house before father discovers we went to mom’s funeral. I scramble to my feet and just when I am about to call out for my brother, I hear something. I freeze in my tracks. At first the familiar deep voice seems distant, almost entirely muted by the rain, but an instant later it turns deafening, “ORASA!”
I tremble where I stand. Father. Before I can think of anything else, I see him, a sight that sends terror rushing through my blood –my father, his eyes flashing, materializing through the fog of a wet midnight. “Where were you coming from, Orasa?” he asks, his voice suddenly turns eerily calm.
I try in vain to escape his grasp, but his hands only grip tighter until I gasp from the pain. My father pulls hard – I stumble, lose my balance, and fall against him. Mud splashes my face. All I can hear is the roar of rain, the darkness of his voice. I peer through the fences to see if my older brother is still on the other side. Of course, he is nowhere in sight.
“Stand up, you ungrateful brat,” my father hisses in my ear, yanking me forcefully up. I smell alcohol on his breath. Then his voice turns soothing. “Come now, dear. You’re making a mess of yourself. Let me take you home.”
I glare at him and pull my arm away with all my strength. His grip slips against the slick of rain. My skin twists painfully against his, and for an instant, I am free.
But then I feel his hand close around a fistful of my hair. I shriek, my hands grasping at the empty air. “So rebellious. Why can’t you be more like your brother?” he murmurs, shaking his head and hauling me off away from the wooden fence. “Where did you come from? Did you run off to the funeral? Answer me!”
I scream. I scream with all the air I have in my lungs, hoping that my cries will alert the people in the village, and they will witness this scene unfolding. Will they care? I doubt that. I’m just a daughter after all. Girls are expendable. My father tightens his grip on my hair and pulls harder.
“Come home with me now,” he says, pausing for a moment to stare at me. Rain runs down his cheeks. “Why don’t you be daddy’s little girl? You know daddy knows what’s best.”
I grit my teeth and stare back. “I hate you,” I whisper.
My father strikes me viciously across the face. I stumble, and then collapse in the mud. My father still clings to my hair. He pulls so hard that I feel strands being torn from my scalp. “You look so much like her,” he whispers in my ear, filling it with his smooth, icy rage. “You look so much like your mother.” My father slowly pulls out his belt. I immediately recognize that predatory look on his face. I shut my eyes and pray for the beating to be over soon.
Later that night, I wake up to the sound of a thunderstorm. Water drips from the leaky ceiling, running in streams and splattering over my head. The electricity is cut short but I can still hear the echo of footsteps heading towards me. “Orasa! Orasa, wake up!” It’s my backstabbing brother.
I mumble, “Go back to sleep, Awut. It’s just a thunderstorm.” My body aches from the beating I received from father. I roll to the side and try to cover my body with the ragged blanket. However, the blanket is too small to cover my feet and I can feel my toes freezing as the wind blows through the cracked windows. As if the wooden floor I’m sleeping on and the water dripping onto my head are not making me cold enough, my brother has to put his cold hands over my face in an attempt to wake me up. Frustrated, I finally turn towards him. “For Buddha’s sake, what do you wa—”
I stop midsentence when I see the look on his face. Despite the darkness, I can see how pale he is. His voice is shaking, “Orasa…I think I did something I don’t think I’m supposed to do. I think…”
I roll my eyes. “Spill it out already.”
He fidgets and rubs his hands together nervously. “I went to father’s praying room.”
“You did what?!” I sit up and grab my brother’s shoulder tightly. I wince slightly at the throbbing pain that runs through my body. My brother looks at me with concern. I know he’s sorry that he didn’t stand up for me; but of course, my cowardly older brother would never do anything about it. I regain my composure. “You fool. You know what father will do if he finds out you went into his praying room.” I grab his shoulder tighter as if I’m trying to force a confession out of him.
“I didn’t go in though,” he continues weakly. “I followed the monks from Mom’s funeral. I saw them heading towards father’s wooden hut in the forest so I thought they were going to pray for mom. I was about to follow them in but then I heard something.” At this point, Awut’s entire body is shaking uncontrollably and his puffy red eyes are starring into empty space. He whispers, “Her voice wasn’t soft and smooth like I remember. But I heard her, Orasa. I heard Mom calling out for us.”
I sit still and stare past my brother’s face. He looks at me and his hands reach to grab mine as if to comfort me. My body is shaking and I think he is expecting me to cry. Instead, I give him a small chuckle. “You fool. I think you ate too much of that free intestines soup at the temple today.” I push my brother away and slump back onto the ground.
“But, Orasa. I – “
“Go back to sleep.” I cover my face with the blanket and mumble. “If you talk about this nonsense again, I’ll beat the crap out of you.”
I hear my brother sighs in defeat as he scuffles back to his sleeping spot. I hear him shifts uncomfortably at first but eventually his breathing levels, indicating that he has fallen asleep. I try to go back to sleep as well but my brother’s words keep haunting me. A fragmented image of my mother comes back. I can barely remember what she looks like. All I can see is that charred face with none of mom’s resemblance at the funeral. Despite the cold weather, my brow is covered with sweat, and my cheeks are wet with tears. I’m breathing heavily. I sit up, brush a wet strand of hair out of my face and rub a hand wearily across my eyes. I feel dumb. Crying doesn’t solve anything. It’s pointless now to go back to sleep so I stand up and take one last look at my brother before I walk out of our room. As I exit, I make sure that father isn’t around. I look first at the stacks of crates in one dark corner, then at the burlap lining the floor, and lastly the little sack of jasmine rice and water sitting between them. Good. He’s nowhere in sight. It takes me a minute to reorient myself and direct where I am heading.
Father’s praying room is situated in a hut in the middle of the woods away from where we actually sleep. He says that the praying room is too sacred to have little brats like Awut and me running around. As I take a step out of our house, the cool air washes over my face and the moonlight drenches the whole night in dark silver. My heart pounds erratically in the way it does after running away from my drunken father when Awut or I have disappointed him. My train of thought halts when I reach a lake our family used to swim in— when we were still a family that is. I hesitate but quickly shake the happy memories out of my head. I turn the corner and head towards a tiny, boarded-up hut with faded inscrutable Thai characters carved on its door.
Gingerly I climb my way over the rusty aluminum roof, and then listen intently for any sound from within. Through the roof’s gaps, I see and hear bald men in orange gowns chanting prayers. I still can’t see the entire view but these men must be the monks my brother told me about. They are sitting in lotus positions and forming a circle but I can’t see what is in the middle of that circle. I hear shuffling noises inside but they are soon subdued when I hear father’s shaky voice, “Please. Please. Please.” I can’t believe my ears. The last time I heard him say such a polite word was when mom was still with us. My pulse quickens. I need to see more. I go from one spot on the roof to another until I finally find one that has a crack between two of its aluminum boards. Father is standing furtively in the corner of his prayer room with his head in his hands. I see him reach for a small family portrait. The moonlight shining through the roof allows me to make out the image of father smiling in the picture. “Please release her,” he mutters. My father suddenly swings our family portrait across the room. His breath comes in ragged sobs, and he claws his scalp in agony. Blood trickles down his face. The sight of it alone triggers the smell of iron filling my nose. My father puts both his hands to his face and I hear him cry in despair.
It’s too dark inside for me to immediately make out the figure in the middle of the monks’ circle. However, I can see that one of the men who was sitting among the monks stands up and walks towards the figure in the middle. He appears to be wearing a different outfit from the monks. Instead of having his head shaved and wearing an orange robe, this man is in a white robe and he grows his hair and beard wildly. He holds out a long sharp object and after squinting my eyes, I realize that it’s a dried stingray tail. I gasp. I have never seen one up close before but the man in front of my eyes is the shaman. The elders said that a person’s illness or drastic change in behaviors is caused by black magic called “tai”. Specifically, it is an object that is magically implanted in the body of the afflicted person by another person. The shaman must then suck this object out before a cure can happen. In one swift movement, the shaman whips the figure in the middle of the circle with the dried stingray tail and the silhouette shakes wildly. The sound the figure makes is incoherent but I can see the anguish etched into every single crumpled, devastated muscle of the uncontrollable body. It does not take long for me to realize what, or more specifically whom, that body belongs to. The sound of her crying is so foreign that it tears my heart. I’ve seen my mother cry before, but never like this.
For more information on Exorcism in Mental Illness Across Different Cultures, please take a look at this article.
I stand at the starting line alongside the other competitors, stretching and jogging in place, contemplating the race ahead. Just shy of six miles long, the course winds through the desert relentlessly, pulling runners further into the heat until every ounce of moisture is drawn from their bodies. This is easily one of the most difficult runs in the area, but I am always ready for a challenge. Past successes confirm my knowledge that I am stronger than everyone else.
Out here in the middle of nowhere it is easy to get lost. The trail we will follow, lined with mismatched rocks of various shades of reddish-brown, offers no comfort or guidance in the face of this lifeless climate. Without obvious landmarks or pretty scenery to keep one company, runners have to rely on the fortitude of their minds to push through.
In spite of the bleak road ahead, or perhaps because of it, I am excited. This stretch of land off of Highway 62 is familiar to me and I thrive in the heat in a way that my coastal counterparts can not. When you say “Southern California,” most will immediately conjure up images of the beach and palm trees, 70-degree weather, and vibrant cities full of beautiful and interesting people. That is not the case for my small town. Here, the drought is old news and most people live lives about as full as the reservoirs. But I have hardened myself against the harsh conditions of such monotony and after suffering through this place for years, I anticipate a landslide win in my territory.
My thoughts continue to wander and, willingly or not, I land on my favorite topic—Carley. I secretly hope that she will make it from work in time to see the race, though I would never consider asking her to come. Thankfully, despite my stubbornness, she always knows when I need her and shows up anyways. Carley is the one distraction I appreciate and winning feels better when she is there to see it.
I have often wondered if it is wise to allow myself to care so strongly for her, but despite efforts over the years, I have never been able to distance myself. We both have college dreams and are well on-track to achieve them — I run fast and she is the smartest person I know. But I constantly worry that I will be forced to choose between her and my dreams. If we are split up, or God forbid one of us ends up stuck here, long-distance is definitely not an option.
Shaking off my anxieties about the future, I try to refocus. I need to stop letting myself be so easily distracted, especially during races. Senior year is my last chance at recruitment and I need to dominate. I take a deep breath of dry desert air, clear my head, and ease into my pre-race routine.
Preparing myself, I block out the rest of my thoughts and focus on the race specifics. Seeing the twists and turns of the path in my mind, I make a plan for the run. First, a smooth and strong takeoff, launching into the race with perfect form. Then I will settle into a comfortable speed at about 6th or 7th place for the following four miles. At around the two-third mark I’ll kick it up a gear and move ahead a few spots. Finally, in the last stretch of the race, I’ll take the lead and win by a solid 50 to 100 meters. It’s the perfect formula for victory.
With a couple of minutes to go, I systematically begin flexing and relaxing my muscles in preparation. The temperature makes loosening up easier, but I still have some trouble shaking out my calves— a chronic issue that my coach claims is due to not weight training enough. Since I am the strongest runner as well as team captain, he feels the need to give me advice, warranted or not. I have never exactly trusted his judgment though, given his status as a mediocre former athlete and my old man’s long-time drinking buddy. When neither of them made an appearance this morning, one not invited and the other abandoning his coaching responsibilities, I was forced to organize the carpool and bring all the food and drinks for the rest of the team. I suppose I shouldn’t be shocked at the incompetency of someone put in charge of minors — after all I lived with it for about a decade with dear old dad.
Darn it, my mind is wandering again. But I can’t help being bothered by the whole situation. Although I care for my team, I am frustrated by anything that pulls my attention away from my own needs, my own race. I can’t afford to be distracted.
I know I will win. I see the course in my mind again and am certain. Victory is not a question but an expectation. Not just because I know I am better than everyone else, but rather because I have to win. Barring death, few ever leave our town. Caught up in young marriages or family-owned businesses, there is never any encouragement to work for better, to hope for more.
People tell me my mom was smart, I wonder if she ever had an escape plan. I guess even if she did it was foiled by her pregnancy with me. My plan is to make a run for it, literally. Victory is a standard I have set for myself ever since I realized that running could be my ticket out. The goal is an elite Division I school. A place where I can take advantage of the countless opportunities that will be laid out for me in a neat little row, one after the other.
The gun goes off.
I am embarrassed beyond belief but hastily regain my footing and launch into the first phase of the run. What the hell just happened? I’m not concentrating and it ruined my start. A rookie mistake, I need to do better.
I steady my breathing and lengthen my stride, working to make up the lost ground. After a few minutes I find 6th position and resist the urge to take the lead of the pack in retaliation for my earlier blunder. Instead, I find a comfortable pace that will keep me poised to overtake those ahead of me while simultaneously conserving energy. Self-control is the key to my wins. Even in a pre-season training race such as this one, I never stray from my mantra.
Start slow and steady.
Beat ‘em to the finish line.
I always find a certain sort of pleasure in that final surprise. As I run, alert for anyone creeping up behind me, I visualize myself pulling up to the front of the pack, still calm and breathing steadily, perfectly in control. Feeling me on their heels, others will quickly lose morale and I know that I have won.
The desert passes by unremarkably for the next couple of miles, the pounding of my feet and the sound of my breath all I can hear, the puffs of dirt with every step all I can see. My mind is the clear, still surface of a seemingly endless lake and I feel strong.
About three miles in I wobble and almost fall, a rut in the dirt my feet do not react quickly enough to. I lose no time but my meditation is broken, and the slight error strikes me as odd. I typically respond to the irregularities of the dirt path reflexively, without thought. I am not paying attention again. I must be letting myself become too relaxed.
Focus, focus, focus.
My ability to command my body to continue, to push further despite the screaming of every muscle fiber, is my greatest pride— complete self-control.
My father used to tell me that the key to success in life is power. “Powerful people can have what they want, do what they want, control their own destiny.” I now know this for what it was: the angry rants of an unemployed alcoholic with absolutely no authority over anyone or anything. However, there is a certain truth to the old fool’s words, and I value my power over myself extremely highly.
Almost five miles in now. I am still towards the front of the group, hovering just behind the current leaders and feeling strong. My shoulder feels weird though, stiff and sore as though I had slept in an odd position. I try to rub the ache out.
The final stretch is my favorite part of a race. Most runners feel a rush of exhilaration as the finish line approaches, but I feel a rush of almost inhuman energy. My body filled to the brim, I feel as though I have been given a good scare and all of my basic instincts are yelling, “run!”
I throw myself forward, ready to strike everyone in that last half-mile. I at my strongest, they at their weakest. I pass a few runners, briefly indulging in the looks of exasperation that flash across their faces before I move onwards. About a minute later though, with just over a quarter-mile left, something odd happens— I can feel my legs weakening. Suddenly, they feel as though they are made of lead, drained of all the power they contained only a moment ago. Despite my best efforts, I cannot will them to run any faster and I know I am falling behind. Looking forward, I see that there are still two runners ahead of me and not enough dirt left. Steeling my mind, I practically scream in my attempt to catch up and manage to pass one of them, but seconds later the other cruises across the finish, a full 10 seconds ahead of me.
The spectators are cheering as my teammates pat me on the back, saying how great I ran and that I had State in the bag this year. I’m not listening to any of them. I look down at my legs and they shake, as though the shear effort of holding me up is too much for them anymore. The post-race exhaustion hits me like a wave. Usually a bearable feeling, this is much worse than anything else I have ever endured. It is the sensation of all my dreams crashing around me, pushing me down into the dry desert ground. I stare at the earth as though I am afraid it will swallow me whole. Looking up I see people cheering, including Carley, who managed to make it to the end of the race. She looks at me with concern, but I find no comfort in her gaze. Slowly, I sink to the floor and grab my ankles, too drained to move any further. I ran my race and I lost.
Why did my body disobey me?
Something is wrong.
My usually infallible confidence fails me and suddenly I am afraid.
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I get an odd rush out of telling people how nervous I am about the Bar results coming in today. And it’s true, I suppose I’m somewhat antsy about them and it’ll be great to know officially. But I’m not actually worried: I do well on standardized tests. I studied for months and I felt fine when it was over. Yet here I am, refreshing the results website every two minutes, frantically dissecting with my colleagues what we can remember of the exam questions, feigning more nervousness than I have. It took me until 2:53pm today to realize why:
I didn’t get to do this the last time around.
Years ago, during a summer break from college, I worked as a lowly intern at a small newspaper. I didn’t get to do much substantive work (again, intern), but I enjoyed the office and my co-workers and the blueberry danishes they sometimes brought in. But as the summer crept along, tension and frustration churned in my stomach. I knew what was coming. Before the job started, I’d made the first appointment to get tested for Huntington’s. I respect people who make the decision to hold off on testing, to let it go until there’s a pressing reason for it. I wish my brain could work like that. But it has to know more, has to keep asking questions, has to know more than it has earned and more than it should. It was a surprise to exactly no one when I chose to get tested almost immediately after finding out about being at risk. I also knew myself well enough, however (at least I thought I did), to postpone getting the results until the day after my summer job ended in case things went poorly.
From the moment the phlebotomist walked away with my sample, the summer turned slow and agonizing. For all my confidence in the psychiatrist’s office about my support network, I didn’t trust myself enough to talk to any of them. I didn’t want to burden my family about it, so I tried not to let out more than small snippets of my anxiety to them. My friends were on the receiving end of slightly larger bits of crazy, but there was only so much stressing I could do over e-mail before I knew that their eyes might be glossing over or they might just skip reading my epic, five-page and completely self-absorbed email entirely. (How dare they, I know.) My boyfriend, a truly wonderful person who played a key role in this support network, wasn’t my boyfriend anymore. I’d picked fights and pushed him away ever since learning about HD, and even when I realized I wasn’t being fair to him, that I was projecting my fears about what was happening and what might happen onto him and our relationship, I couldn’t stop myself from deciding I was finished.
That left my co-workers, the people I spent most of my waking hours with. Of course I couldn’t talk to them. Those were the people from whom I’d be seeking recommendations, the people with whom I wanted to work in the future, and to let them know that my mind wasn’t entirely on work so much as it was on the degenerative illness I might have that would destroy my brain function? Not a great idea. Looking back on it, I was probably underestimating their empathy (and overestimating the impact that co-workers during one college internship would have on the rest of my career), but not talking about it at all to them did help me maintain a professional facade in the workplace when I felt nothing but nerves inside.
The waiting seemed endless, of course, until it ended. My best friend sat next to me holding a box of tissues and the genetic counselor looked so somber and the neurologist was direct when he told me I fell on the wrong side of 50/50. For a moment, I wanted to be back in the waiting, but then I felt the knot in my stomach dissolving and was grateful that, no matter what was in store, at least I’d made it through this part.
The pass rate for the Bar exam I took is a little over 50%, unfortunately and eerily symbolic of that summer a few years back. But this time I’m waiting on results that I put a great deal of effort into, gave myself the best possible chance on, and frankly, did well at. (If I failed, I take this all back.) So I’m not nervous today, not by how I’ve started defining “nerves” since I took my HD test. But everyone else seems to be, and I’m happy to make a show of it for my co-workers, for my friends, and for my parents. My parents have called and e-mailed often, wanting to talk about what the waiting is like and how excited and nervous they are. My mother even told me about a nightmare she had about waiting for Bar results. (I wouldn’t be surprised if, a few years ago, there were lots of nightmares about the waiting that she didn’t and never will tell me about.)
And when I get my results back, I will post them on Facebook, because there’s no one in the world I have to hide it from.
The author who submitted this story to HOPES wishes to remain anonymous.
HOPES is excited to present a new Stories section on the website! This section is meant to be an open space in which individuals affected by Huntington’s disease (patients, caregivers, and friends) can share their experiences with HD in the form of anonymous text excerpts. We believe the sharing of narrative can have healing qualities and promote connectivity within the greater HD community.
Stories can take the form of submitted text or transcribed, in-person interview. We are open to all forms and styles of writing. If you are interested in submitting a story or setting up an interview, please contact HOPES member Annie Rempel (firstname.lastname@example.org).