I wake up to a dark sky, having slept through most of the day.
Looking over my shoulder, I smile to see Carley sleeping soundly.
Slowly, I get up, trying to move as little as possible so as not to wake her.
I note that my roommate is not home and then remember that she is at a conference for the weekend. Well that’s convenient, I’m not sure how I could have explained to her the state that I was in yesterday.
Thirsty, I grab my water bottle and chug, focusing on the feeling of cool water running down my throat, trying to keep the thoughts flying around my head at bay.
What are you going to do now?
Is there any point in staying at school?
Maybe it would be better to just run away.
What about Carley?
Looking at her, my heart hurts. I can’t put into words how grateful I am for her love, and her loyalty. I really do think she means it when she says she’ll be with me until the end.
But I’m still afraid.
Not knowing what else to do, and unable to cry anymore, I grab my running shoes.
As familiar as breathing, I pull them on and tie the laces tight.
Outside, the cold air hits me like a wave and I regret the thin layers I am wearing. Facing into the wind I take a deep breath in and swan dive forward, stretching out my legs. It takes longer and longer to get loose nowadays, and I can’t tell if it’s a symptom or just a function of not running as much.
Quitting the team had been tough, but also a relief, and now I’m glad to already have it out of the way. I just couldn’t handle not being at my best, being less then I was capable of. Most days, I was the worst on the team.
That day I cried and cried, feeling like I was losing bits and pieces of myself and there was nothing I could do to stop it.
And I know it will be completely gone soon. If I progress the way Dr. Miller thinks I will, then in a year or two I won’t be able to run and not long after that I’ll lose the freedom of walking.
Rising up from my stretch with another deep breath, I decide to try and enjoy my autonomy while I still have control over my body.
I squat down and feel my quads engage, enjoying the warmth emanating from them as I hop up and down. I feel strong. Last, I make small circles with my feet, working out the stiffness in my ankles. I admire their dexterity as I spell first Carley’s name and then my own with each foot.
Putting my back to the wind, I take off down the sidewalk, going slowly at first to get my bearings. As I warm up I push myself faster, enjoying the pull at the back of my legs as I lengthen my stride. I feel faster than I have in a long time and relish in the experience, easily finding my rhythm and only just noticing the tightness in my lower legs, the desire for them to fall out of line. The mental effort it takes to keep myself moving gracefully is intense, and I feel it begging me to stop, or to slow.
At that moment, I look up from my feet, which I had been carefully studying to help me focus and I see a flurry of birds take flight from a nearby tree, soaring into the sky all at once. The sight is beautiful and I run to them, sprinting, jumping, and flying to be right underneath them. I run along in the same path they fly, picturing myself in the air, free of the shackles that HD is forging for me. Restraints that will keep me here, on the ground, never to feel the rush air beneath my wings or wind in my face as I sprint down a hill.
The birds turn suddenly and I am forced off my path, onto uneven ground covered in the layers of decaying and freshly fallen leaves of late fall. They give way beneath my feet as I work to keep up with the birds overhead. Suddenly, I feel my right foot sink in further than expected, and the groundcover wraps around my calf as my knee buckles.
Then I am falling, first slowly and then all at once. Unable to react quickly enough, my face hits earth with a hard thump, only lightly cushioned by the leaves that had pulled me down.
Looking up, I see the last of the birds flutter away.
Rolling over, I feel my body protest, my ankle and head in pain from the fall. I stare up at the clear blue sky visible through the bare branches above me. Exhausted, I cannot find it within myself to do anything. I cannot cry. I cannot yell. I cannot move.
I want to do all of these things. To sob until my lungs scream for air, protesting at the suffocating grasp of my prognosis. To shout at the injustice of a world that would threaten to take away the decades more I could have spent with Carley. And to run, as fast and as free as I have ever been— far, far away from anyplace that has ever heard even an uttering of the words Huntington’s disease.
I grasp a handful of mulch and throw it angrily, explosively. Hitting the earth with my fists in a futile attempt to fight back. I want to fight back.
Burrowing deep into my mind I think about all the things I could have done. Graduation, a fulfilling job, pets, marriage, children, and a peaceful death — old and wrinkled in my bed, surrounded by loved ones. No matter what I do, my life will not look like that, and I don’t know how I am supposed to just accept that.
Rolling onto my side, I grunt as I prop myself up and then carefully wiggle my right foot to check its status. Definitely not sprained, just a little bit sore. I feel relieved, knowing that I will be able to run again soon.
But for how much longer?
Standing up slowly, I gaze in the direction of my flock of birds, wishing I could just spread my wings and fly away from it all. Turning back, I gaze towards home, towards where Carley is likely still sleeping soundly, hopefully able to forget the horrors of reality for a few more blissful hours.
Thinking of her I can’t help but feel guilty — guilty that I would ever consider leaving, even if it were merely a daydream.
She deserves better than a dying girlfriend who runs away. She deserves to be happy.
And that’s when I see it: I see how I can fight back against HD, futile as the effort may be. I can’t fight my symptoms, and I can’t stop the progression. I may not even be able to control how I will behave through all of this. But I can do one small thing. I can love, and I can be loved.
And it won’t fix anything. But at least for today, it will carry me through.
Taking a step, I start my journey back towards home, towards hope. And in this moment, I feel strong again.
January 21st, 2016
This is a short story about Tommy and his family. Tommy is an 8th grader who loves learning about the brain. After his uncle is diagnosed with HD, Tommy decides to learn more about the neuroscience behind HD so that he can explain it to others.
Today is a Monday. It is Tommy’s first day back at school after Thanksgiving. He is sitting at his wooden desk slightly hunched over, cradling his head with his hands, fully alert. His eyes are fixed on his science teacher, Ms. Robinson, who is standing at the front of the classroom, flipping through her notes.
Tommy gazes at her expectantly. He has really been looking forward to today. Ms. Robinson had announced the day before Thanksgiving that when they return from the holiday, they would start a new chapter in biology—learning about the human brain.
Tommy has been waiting for this day since the very start of 8th grade. He has always found the brain to be fascinating, mysterious, and extremely powerful. Brains allow us to do anything we want. Thanks to your brain, you can sing, dance, laugh, cry, listen, write, study, run, jump, or play a sport. How is it possible that such complex thoughts and feelings come from a single place inside someone’s head?
For Christmas last year, when he was in the 7th grade, Tommy’s mother gave him a science textbook all about the brain. Tommy knew exactly what the gift would be when he picked it up, and he couldn’t help but smile widely. It was heavy, and he could feel the edge of the book’s cover. He unwrapped it and felt its untouched spine. Tommy was eager to run upstairs and start looking at it, but also wanted to preserve its pristine condition. On the front cover, he saw that it was a book for 11th graders. He felt a warm pride deep in his chest, grasped the book tightly and grinned at his mother.
Today, that book sits under Tommy’s bed at home. He brought it to school once, but it was pretty heavy to carry around. His friend Eric was curious to see the vivid illustrations in the book, and the two of them pored over it intently during recess. When Eric lost interest, Tommy tried to show his other friends, but they didn’t want to spend their playtime looking at a textbook. Tommy decided to bring it back home. He was a little upset, but his mother said that eventually his friends would be more receptive to hearing about how awesome brains are.
Tommy’s friend Eric always sits next to him in class, and this Monday morning is no different. He nudges a sleepy Eric under their shared desk, because the lesson is about to start. Tommy knows when Ms. Robinson is about to start teaching, because she always takes one last sip of coffee out of her dark red mug, and scribbles a little bit on the whiteboard to make sure her marker is working. He can tell that she is drinking coffee, because he can always smell its strong aroma from his seat at the front of the classroom. Tommy notices that she brought a clay model of the brain. He is resolved to pay attention to everything she says today, and to take notes furiously.
Ms. Robinson looks up at her class and launches into her lesson:
“Good afternoon, everyone! Today we will be discussing the human brain. As you all know, the brain is a complex organ that helps you think, move, and feel. In adult humans, it weighs about three pounds and looks like a large, greyish-pink walnut. Just like a walnut, it is divided into two hemispheres, split right down the middle. I brought a model today to help illustrate this. Do you see how the brain is split into two halves? The left half controls the right side of the body and human speech. The right half controls the left side of the body and how we perceive space. For example, it is responsible for the perception of how distant or close two objects are to each other.
Some scientists say that the specific functions of these two hemispheres are what make us uniquely human. They help us process at a higher level, which distinguishes us from other animals. This high-level part of the brain is the most recently evolved, and is known as the cerebral cortex. In fact, each hemisphere is divided into four lobes, which you can think of as four areas of the brain: the temporal, parietal, occipital, and frontal lobes. Most animals do not have a cortex, but we do. It helps us to be creative, feel emotions, and accomplish complex tasks.
Below this walnut-like structure, we find the more primitive part of the brain, located at the base of the head near the neck. This part of our brain is very similar to that of other mammals. It is responsible for our balance and for bodily functions that we don’t consciously think about, like breathing, regulating heart rate, and sleeping. All mammals need to accomplish these functions in order to survive!”
She pauses to take a sip of her coffee and clear her throat. Tommy takes a moment to catch up on the notes he is taking. Ms. Robinson asks the class: “Are there any questions so far?” A student in the back raises her hand. “I have two questions. Which side is the front of the brain, and which is the back? And how is the brain connected to the rest of the body?”
“Both great questions! The front of the brain is where the frontal lobes are. They are right behind your eyes. The base of the brain is closer to the back, and that is where the lower brain connects to the spinal cord. This is actually related to how the brain is connected to the rest of the body, which we will be discussing next!” Ms. Robinson beams at her class.
She continues: “The brain is part of the central nervous system. As such, it is made of nerve cells, which we also call neurons. These cells carry information, called an impulse, from your body to your brain, and from your brain to your body. So for example, if you touch something hot with your finger, a sensory receptor for heat on your finger will send an impulse to your spinal cord, which is in the central nervous system. Your spinal cord processes this information, and to avoid harming your skin, it sends an impulse back to your finger to say: “get away from the heat!” All this happens in less than a second, and you quickly remove your finger from the heat source. Your nerves connect the brain to different systems in your body, and also help muscles move in response to stimuli. So they actually help you do almost everything that you do in everyday life.”
Tommy pipes up: “Ms. Robinson, what is your favorite part of the brain?” She smiles at him, adjusts her horn-rimmed glasses, and says: “I really like the amygdala. It’s a very small structure above the primitive part of the brain, but below the cortex. It’s my favorite part of the brain because despite its small size, it is quite powerful. The amygdala is part of the limbic system, which is responsible for emotions, mood, and instinct. It also plays a role in attention and memory.”
At the end of the lesson, the bell rings- school is over for the day. Tommy grabs his backpack and follows Eric out of the room, shuffling his feet. His black and white Converse match Eric’s shoes. People often say that the two boys could be twins. They are the same height, and both sport a head of dark brown curls.
As they are walking through the yard towards the gate, Eric glances up at the line forming in front of the yellow school bus, and snorts. “How is it that the 3rd graders are always out of class before we are?” Tommy smiles, and looks for his younger sister Lily in the line. More specifically, he scans for a pink Dora the Explorer backpack, and quickly locates his sister. She is chatting excitedly with Eric’s little sister Madison. Tommy overhears her exclaim: “And we have leftover pumpkin pie!”
The boys join their sisters in line, and they clamor onto the bus. Eric and Tommy sit at the far back, and Madison and Lily sit right in front of them, as they have been doing all year. Eric unzips his backpack, rummages through it, and digs out a half-eaten sandwich. With his mouth full of cheddar cheese on rye, he asks Tommy: “So how was your holiday?
Tommy replies: “I had a lot of fun. My mom spent all day Wednesday and Thursday cooking. She made my favorite cheesy broccoli dish that we always have on Thanksgiving. The house smelled incredible! And my uncle, aunt, cousins and grandparents drove here all the way from Chicago.
“That’s awesome. Sounds pretty similar to my Thanksgiving!”
Eric trails off just as the bus slowed down in front of Tommy’s house. All four kids eagerly look out the window at the garden, because Tommy’s father, Joe, is usually watering the yard at this time of day. He is not there today, but typically waves at the children and aims the water hose at the bus as if he is trying to spray the kids when they hop off. Tommy wonders why his dad is not there today.
Both boys jump up out of their seats, and nudge their sisters to get up as well. The four kids hop out of the bus, and part ways. Eric and Madison live right across the street from Tommy and Lily, so they do not have far to go.
Tommy notices that his backpack is heavier than usual today, and sets it down in the driveway. He is still thinking about Thanksgiving. He really did enjoy the holiday, but he did notice that his Uncle Jacob, who is his father’s older brother, was not acting like himself. On Thanksgiving, Uncle Jacob bumped into the dining table a couple of times. He also mumbled a lot and seemed to hesitate before speaking. Tommy noticed that Uncle Jacob was not smiling as often. After the family meal, Tommy overheard his parents whispering in the kitchen that they were worried about him. They convinced Uncle Jacob to stay in town over the weekend to have a check-up with the doctor on Monday morning.
Tommy looks up at his sister. Lily runs up to the house just as their father, Joe, and Uncle Jacob pulled into the driveway. The two men sit in the car for longer than usual, but the kids do not take notice. Tommy grabs his backpack and follows his sister into the house. “Mom, we’re home!” Lily shouts. Their mom is on the phone, facing the floor-to-ceiling glass window in their living room. Lily runs to her, and hugs her from behind. Their mom hangs up the phone, turns around, and leans down to embrace her daughter. “Hi, sweetie. How was school today?”
Their mom made a light lunch for the kids. They gobble down some hot tomato soup with grilled cheese, and head upstairs to do some homework. Tommy had been excited to tell his mom about everything he had learned at school about the brain, but she seems distracted. As Tommy takes his empty plate to the sink, he notices that his mother is looking at the driveway with worried eyes. He gives her a hug. “Mom, is everything okay?” She looks down at her son and says: “I hope so, honey. I’m worried about Uncle Jacob’s health. Why don’t you head upstairs to do your homework and I’ll come upstairs later to chat?” Tommy nods and squeezes his mother extra tight.
He heads upstairs, sits at his desk and unzips his backpack to pull out his math notebook. Just as Tommy is putting pen to paper, his mother knocks at his bedroom door and asks to come in. Lily peeks in from behind her mother’s skirt. The rest of the house is eerily quiet. Tommy asks: “Where are Dad and Uncle Jacob?” His mother replies, “They went for a walk.” She enters her son’s room and sits on the bed. Lily plops down next to her and says innocently: “Mommy, what did you want to talk to us about?”
Their mom sighs. Tommy notices that her eyes are red and puffy. “Uncle Jacob is unwell. He has been diagnosed with Huntington’s Disease.”
Tommy’s stomach feels funny, and he stands up with shaky knees. He manages to walk over from his desk and sit next to his mother on the bed. She wraps her arms around her children and wipes away a tear. Lily looks both scared and sad. “Mommy, what does that mean?” Their mom continues: “We are still learning what this means. We know that it affects his brain, so Uncle Jacob will experience changes in how he thinks, moves, and feels. The doctors say that his condition will deteriorate over time, so it’s important to be grateful for the time we have together. It’s very important for us is to offer Uncle Jacob as much love and support as we can. When he and your father get home, give them both a big hug, okay?”
Soon after that, Joe and Uncle Jacob arrive back at the house. Tommy has never seen his father cry before, but he notices that his dad’s nose is redder than usual. Lily and Tommy had been sitting on the stairs, waiting patiently for them to get home. Tommy stands up, and walks over to Uncle Jacob. He extends a hand to his uncle, and helps him walk over the doorway. Uncle Jacob, whose hair is beginning to gray, smiles down at Tommy with crinkling eyes. “Thank you, Tommy.” Tommy buries his face in his uncle’s shirt, and Uncle Jacob holds him close. Lily, in the meantime, is hugging her father.
The following morning, the children sleepily munch on cereal for breakfast while their mother prepares their packed lunches to take to school. Knowing that orange juice is Tommy’s favorite part of the morning, Tommy’s mom decides to squeeze fresh orange juice for the kids to drink with breakfast. Uncle Jacob walks into the kitchen just as Tommy is gulping down the last of his juice. Lily smiles shyly at him. He stands at the doorway, and doesn’t make eye contact with anyone. Tommy’s mom glances at him with worried eyes. “Good morning, Jacob. Can I get you anything to drink? How are you feeling?” Uncle Jacob glances over at her, and manages a small smile. “I’m doing fine, thank you Sue for your hospitality. I think I’d like to hang out with the kids before they leave for school.”
Tommy is glad to see his favorite uncle join him at the table. He has never seen Uncle Jacob look sad before, and doesn’t really know how to act. Regardless, they chat about the upcoming day at Tommy and Lily’s school. Tommy quickly realizes that there’s no reason not to act just like himself! A few minutes later, Sue gently reminds the children that they need to make the bus, and everyone stands up to head outside to the curb. Uncle Jacob walks with the kids out the front door to see them off. Tommy hoists his backpack onto his shoulder and walks alongside his uncle. He notices that Uncle Jacob is not walking normally anymore. He is dragging his feet slightly, and also walking lopsided.
Eric and Madison are waiting on the sidewalk, watching the trio approach. Once Lily, Tommy and their uncle arrive at the curb, Madison looks pointedly at Uncle Jacob and asks: “You’re walking funny today.” Uncle Jacob cracks a smile but his eyes look sad. His voice trembles but he says: “I know. I have been feeling sick recently.” Tommy feels confused and sad. Madison shouldn’t have treated Uncle Jacob that way, even if she doesn’t know any better. She doesn’t even know Uncle Jacob that well.
Tommy hugs his uncle extra tight before boarding the school bus. He sits at the back next to Eric and leans his head against the glass window. People don’t understand why Uncle Jacob has been moving and behaving strangely. It probably has to do with changes to his brain, just like Tommy’s mother said. Tommy remembers his neuroscience lesson from yesterday, and decides he wants to learn more. He is resolved to find someone to explain it to him.
He would have asked Ms. Robinson if she knew anything about Huntington’s Disease, but his schedule does not include science class on Tuesdays. After school, Tommy runs upstairs to his bedroom and pulls the neuroscience textbook from last Christmas out from under his bed. Laying on his stomach on the bedroom floor, Tommy looks for a glossary at the back of the book. Under the letter “H”, he finds Huntington’s disease, and reads: “Huntington’s Disease is an inherited condition characterized by the breakdown of nerve cells over time. Progressive movement, cognition, and psychiatric symptoms tend to appear.”
The next day, there is no school due to a teachers’ in-service day. Tommy accompanies his father and Uncle Jacob to a doctor’s visit, and is feeling ready to ask some questions about Huntington’s Disease. Tommy sits in the waiting room during Uncle Jacob’s check-up, and peeks his head in at the very end to ask Dr. Peterson if he has time to answer a few questions. Dr. Peterson emphatically nods his head to say yes, and Tommy steps inside the room, walks over to the bed where Uncle Jacob is reclining but wide awake. Tommy leans against the side of the bed, resting his hand on his uncle’s shoulder. Joe is sitting in a chair near the doctor’s desk.
“Dr. Peterson, I really want to understand what happens in the brain when someone has Huntington’s Disease.”
“That’s great, Tommy. Why is that?”
“I find the brain really interesting, but more importantly, I want to be able to explain it to others who ask or are curious. People don’t seem to understand what Uncle Jacob is experiencing and I don’t want his feelings to be hurt.”
“Well, young man, I really appreciate your sensitivity, and I’m sure your uncle does too. I’d be happy to give you an overview of the disease. Huntington’s Disease is also known as HD. It is quite rare—it affects about one in every 10,000 people in the United States, and usually appears between 30 and 50 years of age. Many of the symptoms of HD can be explained by changes to the brain. There are movement, psychiatric and cognitive symptoms. Movement symptoms of HD can include muscle spasms, tics, rigidity, and difficulty speaking. There can also be uncontrollable movements like twisting and writhing. Symptoms affecting the brain include difficulty learning new things, and impairment of spatial perception. For example, Uncle Jacob mentioned to me that he bumped into the table during Thanksgiving, and that might have happened because he thought it was further than it actually was in real life.
There can also be difficulty planning and multitasking, since information processing in the brain is slowed and altered. Uncle Jacob sometimes has difficulty communicating with others, because is has gotten hard for him to organize words in his brain. Lastly, depression is a common psychiatric symptom for HD. So it’s important to show Uncle Jacob lots of love and support.”
“Thanks Dr. Peterson, that’s really helpful. So what is happening in Uncle Jacob’s brain?”
“Uncle Jacob’s ability to think, feel, and move is changing. This is happening because nerve cells, also known as neurons, in his brain are deteriorating in certain areas, like the basal ganglia and the cerebral cortex, which I’ll explain in a minute. HD is a progressive, neurodegenerative disorder: this means that over time, involuntary muscle movements develop, and the ability to think and remember deteriorates.
The disease affects the basal ganglia, which is part of a circuit linked to the thalamus. This part of the brain is most affected by the disease, and many of the symptoms result from damage to this circuit. The basal ganglia sits at the base of the brain, and is involved in the coordination of movement by muscles. In fact, the striatum in the basal ganglia is the first to lose nerve cells. As this happens, pathways between the basal ganglia and the motor cortex are damaged. This is why coordination of movement is affected in the disease. The motor cortex, usually responsible for the planning and execution of movements, can no longer do its job properly because it is not stimulated enough. This likely leads to the slow speed of motor movement of HD patients. Tommy, are you familiar with the word “cortex”?
“Yes, I am. We just learned about it in class yesterday. I know that the cortex is the high-level part of the brain in humans.”
“That’s right. If you were to look at a human brain, you would see gray on the outside and white on the inside. That’s because the cell bodies of our neurons are on the outside of our brains, and look gray: this part of the brain is the cortex. The extensions off those cell bodies project towards the center of the brain, and are white due to a fatty substance called myelin. Anyway, initial loss of cells in the basal ganglia leads to cell loss from other regions that are not getting feedback anymore. All of these things happen in the brain, and lead to behavioral symptoms that are visible to us.
“OK. You mentioned that there are emotional symptoms. Does something in the brain lead to that?”
“Indeed. Huntington’s Disease progressively damages the caudate nucleus, which is a relay station between the limbic system and the frontal lobes. The limbic system controls emotions, while the frontal lobes are really important in personality, in emotion regulation, and in responding to emotions. So in HD, there is a disconnect between emotion processing and response to emotions. This produces apathy or lack of interest, a common symptom of HD.
“Dr. Peterson, do we have a cure for HD yet?”
“Not yet, but researchers are hard at work trying to find one. There is a buildup of plaques in the brain that we still don’t understand, and lots of research is being done there. Scientists are currently trying to determine whether that is the cause of toxicity, because if so, we will know what to target for treatment. Meanwhile, there are therapies available to mitigate symptoms.”
“Thank you so much for explaining this to me.”
“Of course, I am happy to help. Let me know if you have more questions.”
Tommy shakes Dr. Peterson’s hand, and Joe stands up to leave. Along with Uncle Jacob, they make their way out of the office.
The next day is Thursday. It’s been exactly a week since Thanksgiving, but to Tommy, it feels like much longer. So much has happened, and his life feels like it has changed very much. At breakfast that morning, Tommy sits next to Uncle Jacob so that he can crack jokes and try to make his uncle laugh.
On the bus, Eric is playing with a Rubik’s cube. He and Tommy talk about the toy for a while, and marvel at how difficult it actually is to solve them. Madison and Lily, who are sitting in front of their brothers, notice how much fun the boys are having. They turn around to face Eric and Tommy, and watch the boys play with the cube. The four of them chat about the toy.
A while later, shortly before arriving at school, Tommy remarks to Madison: “Hey, do you remember the other day when my uncle was walking funny?”
She looks at him with large brown eyes. “Yeah. He said he was sick. I hope he’ll be ok!”
Tommy replies: “Thanks, Madison. He has Huntington’s Disease, which does not have a cure. Over time, his ability to think, feel and move will be affected more and more. I am hoping that we can all treat him with respect even if he moves or acts differently than we do. Over the week I spent some time learning about the changes that happen in the brain due to Huntington’s Disease, so if you’re curious about that I can try to explain it to you!”
Madison nods energetically. “I understand. Thanks for explaining that to me.”
Tommy smiles. “Of course!”
He sits back in the cushy bus seat, feeling much better. Tommy is confident that with the right words, he can help people understand that HD patients are just people too. Madison is a little young to hear about the changes HD causes in the brain, but he knows the knowledge will come in handy in the future. Tommy grips his backpack and excitedly sways his legs, eager to get off the bus. Maybe Ms. Robinson will have something to say about this too.
Up next: Tommy learns about the genetics of Huntington’s Disease. His cousin, Uncle Jacob’s son, is debating whether or not to get tested next year when he turns 18. Stay tuned for another short story, where Tommy learns about genetic testing and how HD is transmitted in families.
Today’s the day.
Time to flip the coin.
That’s the metaphor that was first used to explain HD to me, and it’s deceptive. Supposedly, heads you live, tails you die — slowly and painfully. But I’ve flipped a hundred coins and the act is too simple to accurately describe what is happening. Any comfort lent by the quarter landing face up is cancelled out by the fear of seeing that same face hit the tabletop.
I want to live.
I read a bunch of stuff about people not wanting to know their gene status, or feeling guilty for being gene negative because they have a family member who is positive. But I think HD already gave me more than my fair share of misery when it took my mom. What sense is there in me dying too?
I look up from the bench I’m sitting on and watch as an elderly couple walks by, hands intertwined. My heart reaches out to them in yearning. The couple turns off from the main road and meanders down a path framed by maple trees, eventually wandering just out of view. No matter how much I strain, the trees obscure them from my sight, as though the world is trying to tell me I will never see such a scene again.
Sighing, I look the other direction in search of Carley. I wouldn’t be able to face today without her. I can’t imagine facing any day without her, especially if the odds are against me. She has been so much stronger than I have, staying calm in my sea of chaos.
But I’m afraid.
What if she doesn’t want to take on a dying girlfriend? And even if she will, I can’t ask that of her. She’s here now, and has been amazing. But I can’t ask her to go through this hell with me. My genetic counselor, Andrew, made us talk about what this disease looks like at the end — and it’s my worst nightmare. I’ll likely lose control over my body, as though I’m possessed, unable to ever be still. Eventually, I won’t be able to feed myself. I’ll be in a wheelchair. Then I’ll be bed ridden. And then, less than 10 year from now, I’ll die.
One of the most common ways HD patients die is from choking on their food, and not being able to control swallowing. If I wanted to have a feeding tube it could extend my life, but at that point I won’t be able to make my own decisions.
Arguably even worse than the physical torture, are the behavioral changes — the list of psychiatric symptoms is long enough to make anyone break: anger, impulsivity, depression, and compulsiveness to name a few. And much as I deny it, I think it’s already happening. I can it in the rollercoaster that is my moment-to-moment emotional state, and in the way I lash out at those around me. I’ve never been a particularly sweet person, but never have I as cruel as I have been in the last 6 months. When I look in the mirror, I hardly recognize the person I see anymore. I try to convince myself that it’s just the sleep deprivation, but my reflection looks back at me knowingly, unmoved by my protests.
I watched a documentary about HD and all I could see was this new face of mine in the writhing, pained looks of those affected. The world tells me my results are just chance but I can feel that something is wrong.
I think I have it.
I see Carley walking towards me, and it brings me back to the present. I can tell she’s working hard to stay calm through the layer of worry that has enveloped her all week.
Ever since my last appointment, we have both been on edge. The neurologist said that I had showed some indications of symptoms, but they were slight enough that it was not yet possible to confirm. She also said that HD presents differently in younger patients, and the usual tests are not always completely accurate and I would need to get the genetic test to be sure.
But deep down… I already know. I’ve devoured literature on HD day and night, and at this point I’m informed enough to consider pursuing research on the topic. In every science review and patient narrative I can feel the truth of my fate, I can see myself. But I have to hope — for Carley, for myself, for our future.
Why is this happening?
Looking at the clinic, I imagine seeing through the walls, straight into Andrew’s office. And I see the envelope on his desk. Waiting. My results are in there. A single sheet of paper holds my entire fate.
I look down at my feet, willing them to never lose their ability to carry me for miles, free and swift as a bird.
“Hi there” says Carley.
Looking up, I offer my best attempt at a smile, and so does she, mutually acknowledging each other’s feelings in this moment.
She sits down and holds my hand. “Are you sure you want to go in there?”
“Yes. I’m sure. I feel like the only thing worse than knowing would be not knowing.”
“Okay, if that’s what you want. Either way I’m here, I hope you know that. Through everything, I’m here.”
Looking at her, my eyes water— in love, in fear, in guilt. My whole self wants only to fall into the warmth of the comfort she’s offering. But I can’t put this weight on her. I just can’t.
Sensing my resistance, Carley looks me in the eyes and says, “Hey I mean it. I know what you’re thinking and I’m not going anywhere. You can’t make me. And you know what, if it’s bad news, we’re getting the hell out of here anyways.”
I laugh bitterly, “Where exactly are you proposing we go?”
“Well, we both have a lot left to see of this world, and I want to see it with you. Let’s blow our savings and live out our daydreams. We’ll go to all the places we talked about growing up—New Zealand, South Africa, Brazil— we can even do the touristy stuff and make some stops in Paris, Rome, and London.”
“I don’t know about making it to all of those, but I guess if I’m dying, what do I have to lose?”
“We’re not going to go because you’re dying; we’re going to go because you’re living. So focus on now, focus on what’s left. Whether that’s seven or seventy years, we both have so s lot to look forward to. Whichever way this goes, we’re going to make the best of it. And I will be here. Do you hear me? I’m not leaving you.”
Crying now, I embrace her and sob freely.
“I’m so scared. I’m just so scared.”
“I know, I know”, she breathes, holding me tighter.
We enter the clinic hand in hand.
The receptionist recognizes me and smiles. But I see her hesitation. She knows why I’m here.
Trying not to tremble, I approach and give her my name “Michelle Thompson.”
“Hi Michelle, please wait just outside Andrew’s office, Dr. Miller will also meet you there.”
“Alright, thank you.”
Carley and I walk down the hall to the office of my genetic counselor, the hallway seems to lengthen as we walk, Andrew’s door getting further and further away. I walk faster.
Last time I was here, when they did the blood draw, they asked whom I would like to deliver the results. I surprised myself by asking for both Andrew and Dr. Miller.
We sit in the chairs just outside of Andrew’s office, still holding hands, refusing to let go for as long as possible.
I stare out a window at the now bare trees that once sheltered the building. I try to imagine the new buds of springtime emerging along with the sun, and watching as the once empty trees fill back up with life, only to be lost again to the winds of fall. What seems like an eternity later, seasons coming and going during my wait, Andrew emerges from his office, smiling softly and beckoning us inside. I try not to read into his behavior — I know that he has not opened the envelope yet either. However, I can’t help but hope that his small smile is a sign of good news. Hope is all I can do.
“Patricia is on her way right now, sorry for the delay.”
I’m surprised by the first name reference to Dr. Miller, and wonder if it’s meant to be comforting. As though to say that the impending reveal of my fate places us at an intimacy level that calls for at least a momentary respite from formalities.
“No problem, I know we’re a little early.”
Our hands separate as we sit in the chairs opposite Andrew. I grasp at empty air, feeling suddenly alone.
Sitting quietly for a few moments, I appreciate that Andrew doesn’t try to ask any routine questions. Even a gentle “How are you?” might tear down the wall I’m trying to hurriedly build around myself.
Dr. Miller walks in no more than a minute later and pulls up a chair from across the room.
“Hi Michelle, hi Carley”, she greets us both.
“Hello,” we say in unison. Carley reaches back over for my hand.
I had agreed at my last appointment to being asked about my desire to hear my results one more time before getting them. But I’m still a bit surprised when Andrew addresses me.
“Michelle, do you want to know your Huntington’s gene status?”
I pause for a moment.
I hadn’t harbored much doubt before this. I had been sure I wanted to know. So much was hidden from me growing up that I didn’t want anything else left unknown. But it could be nice to pretend I’m okay… To just go on, hoping that my symptoms never progress.
And there it is.
I know it’s happening, I know something is wrong. I can feel it deep down in my core.
I remember the falls — rare and spread out, but happening nonetheless.
The tightness in my calves as I attempt a sprint.
The angry outbursts I try to tell myself are normal. My emotions constantly laid bare for the whole world to see.
Looking up from my lap, I clearly state, “Yes. I need to know.”
“Okay,” he says as he opens the envelope.
Dr. Miller reaches over to rest her hand on my shoulder. Carley leans closer to me.
Knowing exactly where to look, it takes only seconds for Andrew to read the paper and clearly say, “You’re gene positive. Your CAG repeat is 62.”
I have Huntington’s.
The world fades out and I feel as though I’m falling.
Carley and I walk out of Andrew’s office a little while later. I didn’t hear anything they had said. An apology. Support. Something about making an appointment with Dr. Miller.
As we exit the clinic, I ignore the receptionist. Carley leaves her number and asks her to call tomorrow.
Everything is numb. The world feels blurry and indistinct, like a camera unable to focus.
I’m afraid to move. As though the horrors of my disease will descend upon me all at once if I show any sign of life. Carley urges me forward, and carefully, trying not to disturb a single leaf, I put one foot in front of the other. I’m not paying attention to where we are going. Not paying attention to anything but the sound of my footsteps and the feeling of Carley’s hand in mine.
At home now, I curl up in my bed, Carley holding me tight.
I still haven’t cried. That’s weird.
“I don’t want to move,” I explain to Carley, realizing I hadn’t said anything since we left the clinic.
“Okay, then we won’t”
I roll over to face her.
“You don’t have to do this. I won’t ask you to stay,” I tell her again. I have to give her a chance to leave. This isn’t fair.
“I’m not going anywhere. And I’m not being selfless. I can’t lose you yet. You’re stuck with me for as long as possible.”
Looking in her eyes, I pray that she means it. But I also pray that she doesn’t. I don’t want her to suffer with me.
I manage to choke out a “Thank you,” before burying my head in my pillow and finally crying— wracked sobs that fill up my lungs and claw at my chest. Everything hurts.
Eventually my tears run out, and I’m tired. Just so tired. I close my eyes, and allow myself to drift away. The last image I see before slipping into a dreamless night is of a single bare tree, begging for the beautiful shelter of its now lifeless foliage.
The hall is silent as I slowly shut the door behind me, careful not to wake up my roommate. Though she is as much a stranger now as she was on move-in day, we coexist well. Double-checking that I have my key, I turn around and sling my backpack up onto my shoulders, hoping it will protect me from the day.
As I step outside I can smell the first hints of fall, though the temperature is still relatively warm and the humidity is a constant companion. I pass through my building’s parking lot as I walk to my bike— a less than glamorous form of transportation but appreciated all the same. Almost six weeks into classes now, I’ve become accustomed to not having a car and can bike to just about anywhere in less than ten minutes.
Besides, I like biking— it makes me feel strong.
Today’s ride is to the Duke Neurological Disorders Clinic about 15 minutes away. It irks me that the clinic is so close to the center of campus, I feel as though it should be miles away and sealed off with a warning “Caution: For damaged people only”. Its proximity suffocates me.
I can’t get away.
My heart feels heavy, and suddenly every rotation of the pedals requires extra effort.
I think back to my first appointment, a visit I would never have made if Carley had not practically dragged me there. The building was cold and sterile, offering little comfort and no answers. It seems ridiculous that such a clinical setting is necessary to determine my fate.
I still think this is all just a dream. After my aunt and uncle broke the news of my mom’s Huntington’s disease diagnosis, I spent the summer in a haze, unwilling to address the implications of this new information.
After that first day of obsessively researching the disease, I figured out just about everything I needed to know. 1) If my mom had it, I have a 50% chance of also having it; 2) there is currently no treatment or cure; and 3) it has been described as a combination of Alzheimer’s, Parkinson’s, and Schizophrenia. To sweeten then news even further, since I am still under 21, if I am diagnosed it will be classified as ‘Juvenile Huntington’s Disease’, which typically progresses more quickly and unpredictably.
That was when I tried to shut it all out, blatantly ignoring my aunt, uncle, and Carley as they tried to convince me to get the genetic test or at the very least talk to someone. I just wanted to pretend nothing had happened. That nothing had changed.
But everything has changed, and I can’t go back now.
That first appointment broke the dam I had built to contain my fears and questions, now I need to know— do I have the gene? How bad is this going to get? Will I even be me anymore? Am I destined to die before I’ve really lived?
I stop my bike outside of Carley’s building. The genetic counselor I spoke to during my first trip to the clinic told me that they highly recommend I bring someone with me to all of my appointments, usually a family member or close friend. Carley offered before I could ask. She also wanted to call my aunt and uncle and update them so that they could be here for me. I refused. I can’t trust them anymore, not after all the years of secrecy.
Carley is bundled up in a peacoat, boots, and scarf, not having adapted to a climate with real seasons quite yet. She takes the stairs two at a time, every breath forming a tiny puff of condensation in front of her. How does she always have so much energy?
I suspect she is trying to stay upbeat for my sake, I’m certainly doing a poor job of it.
She gives me a bubbly “Good morning!” as she unlocks her bike and rides over to meet me. A quick kiss on the cheek is followed with the usual ”How are you doing today?”
This small, seemingly benign question means much more than it suggests. Underneath those 5 words are a host of hidden fears. “How has your temperament been?” “Have you felt any more muscle stiffness?” “Have you had any chorea?” “Are you dying?”
I try for a cheerful “I’m good”, but can tell from the look on her face that I failed to mask my mood. I wish I could hide some of the fear, if only to make her feel better.
Trying to move past the moment, I suggest we get going, claiming that I don’t want to be late. Getting through the genetic testing process is the only way either of us has to cope, so I’m trying to be a model patient.
As we bike along, I ask Carley about her night.
“Oh, it was good. I spent most of it after you left working on that terrible essay for 18th century literature. I honestly don’t know why I thought this class was a good idea.”
“You’re becoming cultured remember?” I tease.
“Culture-schmulture, if anything, I’m becoming dumber. All we talk about are dead white guys’ writing. Where the heck is the other 50% of the world? And what about a country outside of Europe and North America? Are you seriously telling me that the only substantial work to come out of an entire century was from like 15% of the world’s population?”
Unable to resist, I laugh at her rant. Not because she is wrong, but because it feels good to laugh.
She throws me a look that says ‘not funny’, but the smile afterwards tells me that she knows exactly what I’m thinking. Amazing really, seeing as I hardly ever know what I’m feeling or thinking anymore.
We arrive at the clinic and our laughter evaporates like a morning mist, the dread of what this appointment could mean settling in. Today is my neurological exam, during which I will be prodded and tested in order to determine if I am showing symptoms of HD.
It’s a little weird that they would put this exam before the actual genetic one, like some cruel preview of my fate. Either I get to live a normal life, or I’m receiving a death sentence. There is no third door to choose from.
I turn to Carley, “What if this goes badly?”
”If you’re showing symptoms you mean?”
“Yeah, what the heck else would I mean? That’s what we’re here for.”
Carley flinches. My brief and irrational frustration fades.
“I’m sorry. That was unfair.”
“It’s okay, I’m worried too,” she grabs my hand and suddenly I am calm.
“Thank you”, I smile gratefully, “well, if I’m symptomatic that means I’m gene positive. And… and… I don’t know if this is how I want to find out. But I do have to find out eventually. I just— I’m afraid.”
She pulls me in for a hug, “This is terrifying, and I’m not going to tell you that you shouldn’t be afraid because I know I am. But I’m here no matter what happens. I love you.”
“I love you too” I hold the embrace for another moment before letting go and looking towards the door.
“Alright let’s go in.”
I fidget in my seat waiting for the doctor to arrive, staring at a poster titled “Caring For Your Loved One”. It features an attractive middle-aged white couple; the husband seated with his wife embracing him from behind, both gently smiling.
Cool, I think, hugs are key, thanks for the advice.
The door opens and I’m surprised to see an older woman greet me with a smile, her eyes wrinkling the same way they had surely done thousands of times before.
“Hello, I’m Dr. Miller, you’re neurologist”, focusing in on me immediately, even though we have never met before.
“Hi, I’m Michelle. This is Carley,“ I introduce us, purposely leaving out any details about our relationship. This woman seems kind, but I’m not in the mood for any judgment today.
“It is very nice to meet you both, thank you for coming in as well, Carley”, looking at her now.
“Oh, yeah, of course,” Carley responds, surprised at the sudden attention.
“I suppose we should get started. But first I’d like to tell you a little bit about myself. It seems unfair that I get to know so much about you but you don’t know anything about me,” Dr. Miller explains.
“Um, okay, thanks,” I respond unsurely.
“Alrighty then, so my first name is Patricia, and I’m part of the team of neurologists, counselors, physical therapists, and nurses we have here, all of whom specialize in movement and memory disorders. I’ve been married for almost 20 years to my second husband, and I have two sons from my first. My eldest is 25 and my youngest is graduating from college this year. I did my undergrad at Pomona College and went to medical school at Johns Hopkins. I have two dogs that I dote on and I love to knit. Mmmm, those are the basics. Is there anything more you would like to know?” she asks us both.
“Uh no, no I’m okay. Thanks for, um, sharing,” I mutter.
“Of course! Like I said, you deserve to know who I am. Please let me know what I can do to make you feel more comfortable going through this process. So, when did you meet with the genetic counselor?” she asks, diving in abruptly.
“I met with him about a month ago, on the 31st”, I respond.
“And how did that go?”
“Well I guess it went fine, but to be honest it was mostly information I had already figured out”, I confess.
“That makes perfect sense. With the Internet nowadays, I’m sure you’ve done a lot of research already” she predicts.
“I mean yeah, I guess I have. I needed to know”, I reply.
“Yes, of course you did. So what are you expecting today?” she asks.
“Um, well I read that you’ll do some tests to check my neurological function and see if I am displaying symptoms yet. The counselor sort of told me the same, and also that if I have symptoms I can decide to stop the testing,” I answer.
“Right, that’s just about all of it. One other thing that is important for you to know is that if at any point you don’t want to know or do something— for example the test and results of today, or the blood test later on, you can always say no. Please don’t feel obligated to continue or find out something you don’t want to know. We want to make sure that you are completely comfortable with your decisions in this process” Dr. Miller expands, looking at me carefully.
“Alright, but if I’m showing symptoms that means I’m positive right?” I ask.
“Most likely yes” Dr. Miller responds.
“Okay, well let’s just do this. I want to know. It’s my body, and I want to know,” I say emphatically, Dr. Miller not the only one in the room I am trying to convince.
“Okay then, if you’re sure?” she probes.
“Yes I’m sure” I retort.
“Okay, then to begin we’ll do a simple motor test. It works like this, please hold up both of your hands and copy me,” she says as she raises her own palms to face me.
Quickly, I glance over at Carley; she smiles and nods but I can see concern in the way her smile does not quite reach her eyes. I smile back in an attempt to reassure her before turning back to face Dr. Miller’s upraised hands.
I feel like I’m confessing to a crime I didn’t commit as Dr. Miller touches her forefinger to her pinkie and nods for me to do the same.
Maladies of My Mind
Ch.4 Invisible Girl
The first time Awut tried to kill himself was when his genetic test came back positive. I found him lying on the bathroom floor with sleeping pills scattered all over. I took him to the emergency room and he threw up a bit, before a doctor made him drink activated charcoal. He was then hooked up to a heart monitor and the doctors put a line in him to draw blood and give him saline. After they concluded that Awut wasn’t going to die, an ambulance transferred him to a specialized facility, where he was put on a three-day mental hold. Awut told me that he spent most of his days hanging out in the lounge and talking with other suicide and self-harm survivors. A guy told him that people hurt themselves because of anger and that he needed to learn healthy ways to address it. So when Awut was released, he tried to teach me a game called “knuckles,” where we put our knuckles on a table and flick coins as hard as we can across the table at the other person to make them bleed. The loser is whoever flinches first.
Awut flinches when he sees me approaching. There are wires glued to his chest and coming up from the neck of his hospital gown. The gown has no back and lets everyone see the fat parts my brother might want to hide. It is the most embarrassing garment ever invented. Both his hands and legs are also strapped to the hospital bed as if he’s a cow about to be slaughtered. The doctors finally decided to restrain him after his countless attempts to hurt himself and others. His pupils dilate, black and with adrenaline, like rabid animal’s eyes– wild, unfocused, and full of rage. His wretched eyes are glued to my face because there is nothing else to do but lie in his bed, emaciated, and possessed. He begs me to kill him with desperate eyes.
I say quietly, “Did the voices in your head tell you to drown yourself in the tub?”
Awut opens his mouth to say something but hesitates. He then opens it again and says, “T-they said that if I don’t, you’ll come and dr-drown me yourself.” His voice is more staggering than the last time we spoke. It takes him more effort to finish his sentences. “J-just do it already! Kill me and get it o-over with!” He spits at me.
Paranoid schizophrenia-like symptoms occur in 6-25% of Huntington’s disease cases and my brother is one of them. Other than paranoia, Awut also suffers from auditory hallucinations. There are many types of hallucinations, including visual, auditory, gustatory, olfactory and tactile.
I slowly put my hand on his arm and notice how unusually stiff he is. He tries to pull away but has no control over his movement. His body twitches and his muscles spasm. I say calmly, “Why would I hurt you, Awut?”
“Because y-you’re just like him. You’re like f-father.” His limbs jerk involuntarily and his face grimaces, “Y-you want to get rid of this d-demon inside me like father did to mother.”
I touch the scar that runs across my forehead and licks away my brow. The memories of the shaman my father hired to whip my mom with the dried stingray tail rush back to me. I tried to protect her and was marred as a result. Despite my efforts, we ended up losing my mother anyway. My knees weaken and I kneel down beside Awut’s bed. I place my forehead on his arm and he struggles beneath my touch. “I’m not like him.” I feel tears trickle down my face and I fight to keep my voice straight, “If anything, I could turn out just like you and mom.”
Awut’s breathing becomes less erratic and his body relaxes slightly. When I lift my head and look at him, I notice that his facial expression softens. I say, “Awut, I think I’m ready to take the test.”
I wake up beside Sujin. My cheeks are covered with a cocktail of sweat and tears. I’m breathing heavily. Sujin leans over me and brushes a wet strand of hair out of my face. I asked him to be my counselor for the genetic test but he refused. He said he’s already attached to me and it is unethical for him to be my physician.
I shouldn’t get involved with him. But waiting for my test result has been so stressful that I often find myself getting drunk and ending up in his bed. He gently grabs my hand and whispers, “Are you okay?” That’s become his constant question. Almost recited.
It’s been almost two weeks since my genetic test and I have one day left until the result is out. Although specific procedures vary among testing centers, genetic testing for Huntington’s disease generally involves several sessions, including pre-test genetic counseling, neurological examination and psychiatric interview, that can last for months. The genetic test itself is a simple blood test. The blood sample is sent to a laboratory where DNA testing is performed to check for the expanded CAG repeat within the Huntington gene. My fate depends on these three little letters. If the CAG repeat size is less than 35 repeats, I do not carry the genetic mutation for the disease. But if I carry more than 40 CAG repeats, I test positive and am cursed with the devastating illness.
I often wake up gasping, my eyes hunting frantically for the family I’ve lost and the family I have decided not to have. This cursed disease can extend its claws and prey on the next, innocent generation. Even though I’m not religious, I often find myself praying to all the gods in every religion in hope that one of them can overturn this curse. I try not to show my concerns but my eyes always betray me. Sujin often tells me that I can still have a family if I want to. He says that I can get what he calls ‘Test tubes babies’ through pre-implantation genetic diagnosis. I respect those who choose that path but I still don’t want my children to witness my mental and physical deterioration like Awut and I went through with our mother. I stare at the wall across from us, lost in my nightmare, and Sujin has to tap my foot with his to snap me out of it.
“I’m fine,” I say as I look away. Sujin develops the habit of stroking my hair and kissing my tears away. He runs his hand down my scarred back. Even though I received this unwanted art piece years ago during the fire my brother started to rescue our mom from the shaman, the smell of my burning flesh still haunts me. My tender skin has toughened into an unnatural patch of quilt work. I despise the pattern but Sujin always reassures me that I’m beautiful. A labored breath escapes my lips and I snap at him. “Stop.” The lump in my throat threatens to choke me. I say coldly, “I can’t be bothered with menial displays of affection right now when I have so much at stake.”
He removes his hand from me and pretends it doesn’t bother him. “If that’s what you want, Orasa.” His words, meant to be mature and comforting, instead sound faker the more he says them. “Well, I’m here if you want to talk about it, birdie.” His cheeks flush when he uses my nickname. The hint of a smile appears on his face, pulling me in with its irresistible warmth. But this time, he doesn’t try to hug me. He doesn’t reach for me or scoot closer to let our shoulders touch. He doesn’t stroke my hair, whisper reassuringly into my ear or rest his head against mine. I hadn’t realized how much I’ve grown to crave these little things he does.
I hear humming on the bed and I turn to Sujin. “Do you hear that?”
He looks at me, confused. “Uhh…I don’t think so.”
I grunt, “I swear I heard something.” I search through the sheets and finally find my vibrating phone.
I pick it up and hear a girl’s panic voice. I recognize it immediately. It’s the daughter of the acid assault patient I met in the emergency room. “D-doctor,” The girl sniffles. “Are you free right now?”
I look at the clock. It’s 4 in the morning. I have to perform a surgery in a couple of hours but the girl’s shaky voice prompts me to tell her otherwise. I reply, “Yes I’m free, kiddo. Where are you?”
“At the hospital,” the girl pants. It sounds like she’s running away from something and I can sense fear in her voice when she adds, “My father’s here. Please help me!” I hear the girl screams before the line goes quiet.
“Hey, kiddo! Hey!” I yell into the speaker but I hear no response. I try to redial but I go straight to voice mail. I immediately jump off the bed and scramble to get dressed.
Sujin asks, “What’s going on, birdie?”
I fumble to put on my buttoned clothes. I reply, “I just need to go somewhere.” My hands tremble slightly. It must be from my lack of sleep. “Can I borrow your car?” I pull out the drawer and grab his car keys before Sujin can reply.
He gets up from the bed. “What’s going on?”
“I don’t have time to explain!” I respond a little too aggressively and Sujin seems taken back by my outburst. I pace towards the door and mumble. “It’s just something I have to do.” I look at his befuddled face one last time before rushing out of the apartment.
I get inside the car and hit the pedal. I hit the pedal harder, wanting to go faster and wanting to scream, break something, rip out my hair, scratch my skin off or throw a punch through the window. But, I’m stuck. Bangkok traffic is betraying me. The girl’s scream still rings in my ears. Why is she running? Is her father abusing her? I’m so angry at the injustice the girl is facing. Why isn’t anyone at the hospital helping her? Why doesn’t anyone care? I try to redial the girl again but I still get no response. The burning rage inside me is tearing through me. I feel possessed, a puppet strung to the sadistic hand of a devil.
I finally arrive at the hospital’s underground parking lot. It’s mostly empty, except for a few cars, and it reeks of rotten sewage smell. There’s a glass door at the end that leads me to an elevator and a set of stairs. I run towards the door and swing it open. I bang my finger against the elevator’s button repeatedly. I tap my foot, impatient at its snail pace. It’s taking too long. I decide to use the stairs instead.
As I rush upstairs, I misstep and descend downward. I skid down a couple of steps on my back before I have the presence of mind to stop myself with my palms. I ease myself up to sitting, and I can already feel a nasty series of bruises blossoming on the knobs of my spine. I twist around to examine the stairs, expecting to blame some kind of obstruction. There’s nothing.
When I look up to the top of the stairs, I find the girl I’ve been looking for running towards me. How did she get here? Did she know I’d be here? Logic tries to reason with me but it quickly vanishes when I hear the girl screams.
“Help me!” The girl whimpers, “Please, doctor!”
I lift each arm up and notice that both my elbows are scraped and bleeding. But I don’t have time to examine it. I stand up and grab the girl’s hand. We need to get out of here before her father catches up.
“Where are you taking my daughter?” I hear a chilling voice echoing through the parking lot. I turn around to find a man eyeing the girl like a prized piece of prey. The man’s voice turns eerily calm as he walks towards us and politely says. “Doctor, this is a family affair. Please turn my daughter over. I just need to teach her a lesson that’s all.”
I take a deep breathe and say, “Sir, I’m sure whatever conflict you have with your daughter, we can resolve it over coffee.” I try to distract the man while keeping my chin down and eyeing the girl beside me. But, the first punch glance my chin. I notice too late it is a feint though and the second punch doubles me over and expels the last bit of choked air from my abdomen.
“Please don’t hurt the girl,” I say, lying on the concrete floor. I feel another blow to my guts. My eyes plead for the man to leave his daughter alone. Instead, the man grabs the girl by her hair and starts dragging her away from me. The girl screams again and again as he tugs her away. As if to mock the dire playing inside my head, the girl’s scream plays a familiar dance tune that reminds me of the times I screamed for help when my father punished me as a child.
I cough out blood. “Stop!”
The man stops walking and he turns around. He lets go of the girl’s hair. His face turns red at first but then his lips curl into a vicious, animalistic smile. I can’t decide whether to let my eyes rest on that wicked smile or on the girl’s teary face. Another blow throws me across the floor and my abdomen blazes with pain. I slump against a wall but bear the punishment silently. It is just another bruise. I have dealt with them before. “I heard you’re a surgeon,” the man finally speaks up. “I wonder what kind of trash you’ll be if you can’t operate anymore.”
He eyes my hands with a predatory gaze. Understanding comes later. “No! Please No! Not my hands! I beg you!” I scream but here, in the empty parking lot, no one can hear me.
I limp across the hospital lobby, cringing at the smell of puss leaking out of my bruised hands. I hide my hands behind my back when hospital staff members greet me. I don’t have time to explain my condition as I drag my feet across the floor. I need to get to the security room. There must be a camera in the parking lot. If I’m able to obtain the footage, I can use it as evidence to charge the girl’s father with domestic abuse. Even if the man bribes the police, hard evidence like video footage of him beating the girl up will surely get him arrested.
I’m so close to my destination when I see one of my surgical residents runs towards me. “Doctor, you’re here! We’ve been paging you all morning. You have a surgery to go to.” When he approaches me, he gapes. “Doctor…Did you get into an accident?”
He tries to examine the wound on my face but I push him away. I wince while doing so and the resident notices my bruised hands. His eyes shift between my hands and my face. He finally says, “Doctor, I don’t think you can operate in this condition. Don’t worry about the surgery. I’ll call in another attending surgeon while you get your injuries check out–”
“Just prep the OR!” I yell and I notice that everyone in the hospital lobby turns towards me. No one speaks but just stares at me. They’re all mocking me. They’re just like the elders in my village, who think all girls are worthless. Do they think that because I’m a woman, I can’t do my job as a surgeon? I despise the patriarchy in my country. White-hot rage consumes me, the pressure building up and pressing against every cell in my body. I’m sure I’ll physically explode if the rage doesn’t leave me. I turn to the resident and growl, “I said prep the OR! I’ll be there in a minute!”
I don’t bother to see his reaction but continue limping down the corridor. I find myself in the dark security room with the only source of light coming from sets of computer monitors hanging above the long metallic table. I point my finger to the screen and demand, “Check the underground parking lot about half an hour ago. A man was abusing my patient’s daughter.”
The two slightly obese guards stare at me. They’re holding grilled meatballs sticks in their hands and their mouths gape in confusion. They seem inexperienced and unsure of what to do. I roll my eyes. I ram one of the guards against the wall with my elbow and press him deeper into the wall. He drops his food on the ground and I yell, “Check it now!” I eye the other guard. He quickly throws his meatballs away and types something on the keyboard. When I see a screen pop up, I let the fat guard off my grip. He rubs his neck with wide eyes, scared out of his mind.
I pull a chair over and sit on it. My elbows rest on the table as I examine the footage on the screen. I point, “There! That’s the man I was talking about.”
The security guards exchange weird glances. “D-doctor…I think there’s a misunderstanding.”
I growl, “What are you talking about?” The footage is clear. It shows a middle aged man beating me senseless and pulling the girl by her hair away from me.
The guards blink confusedly. One of them finally speaks up, “The video…There’s just you in it….” He pauses for a long moment before he mutters, “You’re throwing your fists against the wall.”
What are they saying? That’s absurd. The girl’s father must have bribed these pigs to say all this nonsense. “How much did he pay you?” Heat rushes through me. “Is that why you’re turning a blind eye?”
“No doctor,” The guards raise both their hands defensively. “Please, doctor. Please calm down.”
I push back from the table to stand, but the push is dramatic and forceful, and the chair crashes to the crappy linoleum floor. I stumble over the upturned legs as I back up, and now both the chair and I are on the ground.
I hear mocking laughs leak out of the guard’s mouths. “How dare you make fun of me?!” I bellow. The guards quickly shake their heads and tell me they didn’t. Liars.
Now riding the back of humiliation, my rage accelerates. Ignoring the throbbing pain of my bruised hands, I stand up, lift the chair by two legs, and smash it against the floor. The legs crack off and several of the back spindles break apart. I toss the legless chair to the ground and march towards the guards.
I look at them and grunt, “What’s your name? I have to get to surgery but once I’m done, I’ll make sure I get incompetent fools fired.”
Both of them look at me in horror. They won’t answer me so I look at their nametags. I pull out my phone to jot down their names. But my hands suddenly feel weak. My fingers flick, as if they are doing their tap dance over my phone screen and ignoring my command. I’m concentrating on my fingers as if I’m performing the most difficult surgery in the world. I try to will my thumbs to type down the names of the security guards onto my phone, but no amount of focus will stop them from trembling.
Heat is building inside me, and I’m holding my breath, losing patience, about to throw the stupid phone to the ground. Even though the room has an air conditioner, the air suddenly feels thick with moisture and humidity. The heat is unbearable and I feel a bead of sweat slowly drip down my neck and sacrifice itself to the cotton confines of my already damp shirt. The entire room seems to be slowly melting. I could swear those security guards were a few inches fatter a couple minutes ago.
When I look up, I’m surprised to find the girl standing beside my surgical resident. She has a gash across her forehead. Instead of helping the wounded girl, the resident rushes to me and says, “Please doctor…Please pull yourself together.”
I point my finger at the girl, “Why aren’t you helping her?” Apparently the girl’s father must have bribed the resident too. I spit in his face. “Can you even call yourself a doctor? How much did the acid assault patient’s husband pay you to turn your eyes away from their abused daughter?”
“Doctor…” He’s sweating, frazzled and directing his eyes towards where I’m pointing. He takes a deep breath before whispering, “I can’t see the girl, doctor. Besides, the acid assault patient doesn’t have a daughter.”
My eyes widen. What is he saying? Of course she has a daughter. She is standing right in front of me. Before I can retort, I feel a pair of small arms wrap around me. I look down to find the girl hugging me. She pleads, “Please doctor. Don’t listen to them. To them, I’m just a poor girl. No one cares about a poor, abused girl.” She cries, “To them, I’m invisible. But you care about me. To you, I’m real.”
I look at the girl’s wound across her forehead. It singes her eyebrow and slightly misses her eye. I frown. “Did your father give you that?”
The girl shakes her head. “No.” The girl takes few steps away from me and says quietly, “The shaman did…with a dried stingray tail.” She pauses before speaking in a somber tone. “I tried to stop him from hurting my mom and I got hurt as a result.”
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 girl. The wound across the girl’s forehead has 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 step towards the girl but she takes another step back. I grab her arm and twirl her tiny body around. I pull her shirt up and stumble back when I see a burnt scar running its tongue across her back. I trip over my feet and fall to the ground. I raise my trembling finger towards her and ask, “W-who are you?”
The girl turns around and heads towards me. I push myself backward until I’m trapped against the wall. She looks down to me and puts her palms together in a Thai prayer-like position as if she is greeting me for the first time. She smiles and says, “I’m you.”
For more information on the association of HD and schizophrenia-like psychosis in HD pedigree, please refer to this article.
Before the diagnosis my husband would lose his temper at me. He’d leave the house and I’d not know when he would return. He wouldn’t go to marriage counseling, so I did. What was I doing wrong?
Then one day he lost his temper at our child. I’ll never forget that moment, and our child holds it still. Our family was hurting.
Years after diagnosis I suddenly realized the temper episodes stopped. Cold turkey!
I could look back before the diagnosis, and I saw we had been in denial, and I realized we worked very hard at supporting our denial. Perhaps my husband’s anger was part of his denial tactics, a masquerade of a “normal” person under stress. Before the diagnosis the stress of denial disrupted our family, and after the diagnosis, Huntington Disease disrupts our family, too. But now struggles are genuine and contain a good measure of peacefulness and acceptance.
I subscribe to a caregiver’s newsletter from Mayo Clinic’s Alzheimer’s Disease Research Center. Recently it had an article on “Pleasant Dementia”, the characteristic of some people with dementia who, like my husband, are “stuck in the moment” which is one filled with ease, appreciation for each sunrise, deep love for his family and silly jokes.
For us, going from before-diagnosis to after-diagnosis is not about losing your whole life, although the losses are many. Rather it’s about replacing denial with acceptance, anger with letting go, and worries about the future with being fully present with today’s life.
The author who submitted this story to HOPES wishes to remain anonymous
After noticing some unusual mental and physical behavior, appointments with and tests by a neurologist, we got the startling diagnosis of Huntington’s disease (HD) in March 2010. It was an unwelcome surprise as we were not aware that this genetic brain disease was in her father’s family. Katie’s reaction was, “I don’t want to know that…” and even now, almost five years later, while resigned to her fate, there’s still some denial.
I was glad to know what we were dealing with, but had no idea that I would spend my retirement as a 24×7 caregiver. We’ve been married 53 years and had plans to continue the world travel that began in Japan after our marriage. But it was not to be. Our new adventure is learning about and managing the symptoms for this neurologically degenerative disease for which there is no cure.
HD often first shows up with involuntary movement known as chorea (Greek for dance) or tentative gait, and Katie began to walk very slowly even pulling me back if I had her arm. And, as home manager, she was having difficulty making decisions, paying bills, handling checks and compulsively collecting newspapers. In the last year she has become more emotional—sudden crying, anger, angst.
The diagnosing neurologist referred us to the Huntington’s Disease Center of Excellence at UCDavis where we met with the HD team for an evaluation. A year later we switched to the UCSF Memory & Aging Center that takes a more horizontal approach to neurological diseases and was geographically closer.
We met with several team members for observation and consultation. The prognosis was annual observation that has become semi-annual, and for the past 12 months the anti-anxiety drug Mirtazapine before lunch and bed. If she’s still agitated and unable to sleep we back up the Mirtazapine with Melatonin.
As it turned out the most significant meeting was with the physical therapist, who, after a brief interview, showed us strength and balance exercises, and how to get up after a fall. But her most important recommendation was: “Get a dog!”
It had been about 18 years since our last dog. We had enjoyed a black Lab, then a Siberian Husky while our two daughters were growing up, but they had gone off to college and out into the world, so we did not get another after the Husky died.
Our younger daughter had been advocating a dog for several years and Katie, who had been our leader in acquiring dogs, had said she would like a lap dog that would sit with her in the car or next to her on the couch while she watched TV. I had balked at the idea as I thought it would just be more work for me.
While thinking about a dog, we joined two HD support groups, one for caregivers only, the other for caregivers and patients. Both formats are good, but I found the combined group to be more helpful as hearing from those affected and those who care for them was usually enlightening. And it didn’t seem that caregivers held back in talking about their challenges, problems and successes.
We connected with some distant relatives and learned about other family members who had been affected. I talked with the niece of one of Katie’s cousins who was just 50 and was about to enter a care facility. She has four children, a husband who has left, but a loving sister who has taken care of her.
I reached out to Care.com and posted a physical exercise job, got amazing response and found a professional caregiver who began a weekly Walk &Talk with Katie getting her out of the house without me—good for both of us.
I met with Family Caregivers Alliance to learn about their services, educational programs and workshops. I asked our housekeeper to come every week and do some part time care giving. She, in turn, introduced me to a caregiver relative who comes weekly for six hours so I can see my grief counselor and meet up with friends.
Finally in September 2012, just after Katie’s 75th birthday, we went to an SPCA Open House Adopt-A-Pet Event in San Francisco. We couldn’t find the “right” dog so Katie said, “Let’s go to Berkeley Humane,” a place we often passed. When we told the attendant that we were looking for a small dog, 20 pounds or less, 1-2 years old, she said, “You should meet Flo who’s in the next room.”
It was love at first sight. Flo is a tan Border Terrier-Dachshund mix with brown eyes, black eyebrows and muzzle. We took her for a walk and said we’d like to “rescue” her. After two hours of paperwork we got in the car and took our new little friend home. I told Katie that she still had good dog karma.
Flo was just one-year old, in late puppy-early maturity development, and after some environmental adjustment was just fine. With our daughter and son-in-law we took her to a park and to everyone’s delight she loved to run and fetch a ball, bringing it back most of the time. With training she has become a great little retriever, but most of all she’s become a comfort to Katie and a little pal for me.
Having a “third party” helps us keep a positive outlook, and she is a great stress reducer as she loves to play with a ball or chew toy in the house, then curl up in Katie’s lap when we go out in the car. Katie has become less mobile so holding the dog in her lap allows me to run into stores for quick errands.
Flo is a great little watchdog barking when the doorbell rings, then settling down after the guest enters our home. And, she likes TV. Her favorite program is the PBS Nature series, and she’ll often watch an entire show, charging the screen and barking at animal close-ups, but just watching during the long shots.
One of the most rewarding values for me is dog and dog owner sociability. During our early morning and late afternoon walks we have met nearly a dozen new neighbors down the street and around the block because the dogs react to each other and their owners generally talk, get acquainted and sometimes become friends. These daily encounters are welcome mini-respites.
One dog walker has become a part-time caregiver. She and her dog come three days a week for two-hour periods allowing me to do some work around the house, run errands and attend my Tai Chi class. The dogs play to everyone’s delight. We now have part time caregivers everyday but Sunday.
We caregivers need to take care of ourselves so we can be effective in helping our loved ones and those for whom we care. Even with part time caregivers, support groups, workshops and professional guidance, I have a long way to go to become a better caregiver as I get frustrated, fatigued and angry.
Care giving is more art than science. And an unconditionally loving, four-legged friend can make a big difference.
This story was originally submitted to the 2014-15 John A. Hartford Foundation Story Contest. The author who submitted this story to HOPES wishes to remain anonymous.
Maladies of My Mind
Chapter 3. Drowning
The cold collar chafes my neck and makes the shivering hard to control. At least I am no longer in the claustrophobic tube, while the machines click and whir around me, listening to a disembodied voice telling me to hold still while I try to convince myself I can still breathe. Even now, when I’ve been assured there will be no permanent damage, I hunger for air. The residents are scheduled to remove the collar around my neck today but it takes them a lot longer than I expected. My patience is wearing thin. I’m not sure if their reluctance is out of their fear of hurting me or just of me, their superior physician.
After I change into my normal clothes and put on my white doctor coat, I slide the curtains that surround my hospital bed open. I am not surprised to find a shapely woman in a voguish red dress and black heels. Kris is my best friend and at one point, even more. But I broke things off with her because I believe serious commitment isn’t an option for me. Kris greets my residents with a traditional Thai wai. She slightly bows, with her palms pressed together in a lotus position and says sweetly, “Thank you for taking care of Orasa.”
The young doctors swoon over her. They quickly press their palms together to accept her wai. A resident adjusts his glasses and scratches his trimmed pepper beard nervously, “Oh– yes, of course. Umm…With pleasure, miss.”
I roll my eyes. I send a dismissal hand signal to my residents. They won’t pay any attention to me but continue to stare at Kris’ smiling syrup lips. I finally find my voice, “Shoo.” The residents turn to me. I growl slightly, “You’re all dismissed.” The minions scurry out of the room.
I turn to Kris and ask, “How’s Awut?” I straighten, tensing. Doctors and nurses nearby were able to subdue him after he strangled me the last time we met. Even though he has just begun to show subtle signs of motor disabilities, my brother’s cognitive and behavioral symptoms are growing rapidly. Coupled with his existing anger issues, the aggression and paranoia symptoms from Huntington’s disease exacerbate my brother’s violence.
It’s been a while since I’ve heard any real updates on Awut’s condition. My eyes scan Kris’ face, searching for clues. I notice that her pupils slightly dilate and her face conveys anxiousness. What is she going to tell me? Or perhaps it’s no news at all and she’s simply going to tell me what she usually does. ‘Not much change, today, I’m afraid, but at least he’s still stable.’ I’ve grown so used to hearing that.
“Is he lucid?” I ask.
“Yes,” Kris says quietly. My pulse quickens. The news is so sudden. One minute my brother is being strapped in bed, losing control of his identity day by day, and now he’s awake and himself. Just like that.
I break into a smile, and before I can stop myself, I pull Kris into a tight hug. She stiffens. I haven’t held her this closely in a long time. She smiles and pats my head awkwardly, but I don’t care. I want to see my brother. “I’m going to the psychiatric ward.”
Just as I am about to head out, Kris grabs my hand and her smile wavers. She says, “Awut told me he doesn’t want any visitor.” My heart twists until it threatens to break. “He just felt really guilty for hurting you. He’s not eating much and has trouble sleeping.” Her voice trails off quietly, “He said he wants some time alone to rest.”
“Oh,” I say lamely. I take in Kris’ words and my fist tightens
“I’m sorry,” Kris replies guiltily. Now that I take a closer look at her face, I notice how stressed out she looks. Her under eyes blacken from the lack of sleep.
Over the course of my brother’s hospitalization, Kris has always been so supportive. I try to come up with ways to thank her but even now that she is standing in front of me; all my thoughts go to mush. I manage, “Don’t apologize. You’ve done all you can for my brother and me. I don’t know what I’ve done to deserve such a great friend like you.” I unclasp my hand from hers. “I have a lot of work to catch up with anyway,” I mumble. I know I’m supposed to take a few days off from work but I need to distract myself right now.
I give Kris a weak smile and numbly walk out of the room. As I exit, I find a surgical resident leaning against the wall. He is holding a red clipboard with notes on it, which I am assuming are lists of patients’ stats from his round this morning. He is also sweating profusely and fidgeting.
“What do you want?” I deadpan. I’m dumping my frustration on the resident.
The resident jumps lightly. He adjusts his glasses and stammers, “I’m waiting for your friend, sir… I mean ma’am…doctor. I-I’d like to ask for her number.”
His stammer annoys me. Typically, I would let it slide. But for a second, I want to smack him in the face with the stupid clipboard just to shut him up. “Do whatever you want to do,” I mutter and grab his red clipboard. I quickly scan through the list of patients’ stats. My eyes stop at the name Sang Boonsawang. I swivel my head towards the resident and raise my voice, “Here it says that the acid assault patient is conscious but still unable to speak.”
I ran the surgical procedures I performed on the patient through my mind. Maybe the surgery wasn’t a success like I thought it was. Maybe the damages to her vocal cords are more extensive than I suspected. Maybe I missed something.
Unsure of what to say, the resident just stares at me. I feel a boiling rage seeps through my dry demeanor. This useless brat is a waste of our government’s resource. “Uhh…I’m not sure…It could be a complication.” He finally clears his throat and says, “There’s another attending physician looking at her case right now.”
I glance over the patient’s room number. 202. Perfect. That’s just two rooms down the hall. I shove the clipboard back to the resident and head to my destination. As I enter, I notice that the room has a low light on, and there are cords hanging down by the patient’s side for the nurses’ call button and the IV solutions. The patient is sleeping; but there is an empty aqua colored glass with a bent straw in it and a half eaten tray of food with the big metal cover that is on the plate.
“Hello, doctor.” I hear a small, squeaky voice. It’s not coming from the patient. Following the source, I bend down to find a little girl with a bob hair cut and uneven bangs. It’s the patient’s daughter I met in the emergency room.
I hear the door propped open and the sound of sensible shoes squeaking on the pristine tiles approach me. The girl raises her index finger to her mouth and whispers, “Shh…” I’m confused at her gesture but I decide to play along. She’s probably just shy.
When I stand up from my crouched position and turn around, I bump into a well-built figure. I inhale his overly strong cologne and recognize the scent immediately. The man speaks with a weird accent, “Birdie, it’s good to see you again.”
I bite my lips, trying to hide my frustration. I didn’t expect to find a psychiatrist; especially the one I had a one-night stand with, as the consulting physician for my surgical case. “What makes you think this is a psych case, doctor?” I ask.
Sujin runs his hand through his hair and says, “The patient has gone through tremendous emotional trauma. It is possible that her loss of speech may be due to psychological reasons.”
Despite our different specialties, he makes a valid point. However, physiological causes should still be considered. The patient could have had a stroke during the surgery that affects her brain’s Broca’s area in the left hemisphere, which typically disrupts the patient’s ability to speak or comprehend language.
I turn my attention back to the patient. There is an electronic machine sitting on a cart with wires leading to it, and a curtain hanging from a track on the ceiling. The patient’s chest is moving steadily and her heart monitor indicates that she is stable. Sujin walks towards me. “I have another consult but feel free to contact me when the patient is awake,” he hands me a small clean-edge business card with his name and number on it.
“You can also call me for other reasons, birdie.” His lips curl into a crooked smile, “I’ll be going to a Thai boxing match this weekend if you want to come along. It will be Champion Veera’s first return to the ring since his leave of absence.”
Nostalgia of my days when I practiced Thai boxing rushes back to me. I started practicing it because I couldn’t take my father’s abuse anymore and I wanted to fight back. I miss the feelings of wrapping my hands with ropes and dipping them in water to harden them. Because ropes are abrasive and able to cut, they’re used to increase blocking and striking power. The elders in my village claim that females are not worthy enough to practice this sacred sport. However, I was able to practice it because I had a hideous boy cut so people mistook me for my brother. As an avid fan, I’m tempted to go with Sujin just to witness how Champion Veera’s first return to the ring will turn out.
But I can’t. Dating leads to attachment and I can’t afford any attachment. It wouldn’t be fair for either of us. I answer professionally, “I’ll contact you if I want another consult, doctor.”
Sujin’s smile falters slightly but he immediately returns to his cavalier tone. “Well, if you change your mind about my latter proposal, you have my number, birdie.” He winks at me before heading out of the room.
At the sound of the door shutting, I hear shuffling noises of skin and clothes rubbing against the floor tiles. The small girl props her head from under the patient’s bed and crawls out of her hiding spot. “He sounds cute,” she says innocently. “I like his accent.”
I ignore the girl’s observation and ask, “What were you doing down there anyway, kiddo?”
The girl rubs her neck sheepishly, “I was hiding.”
“Not what but who,” she corrects me.
“So who were you hiding from then?” I rephrase my question.
The girl sucks in her round cheeks and stares at the ground. Avoiding my eye contact, she mumbles, barely audible, “My father.”
My heart drops. According to the reports, the patient’s husband is the main suspect for the acid assault. However, there isn’t enough evidence and because victims of domestic violence rarely come forward to testify, the husband is still free.
I notice the bruise on the girl’s cheek and say, “Did your father hurt you too?”
The girl doesn’t reply and continues to look down at her feet. I understand her reluctance to talk to me. When I was younger, I avoided answering any question regarding my father’s abuse like a plague because I didn’t want to face more punishments.
I walk towards the table by the patient’s bed and grab the empty glass of water. I pour water into it and return to where the girl is standing. “You should tell the authorities,” I hand the girl a glass of water. “Here, have a drink and then we can talk more about it.”
Her eyes harden and her cheeks turn red. “The authorities don’t care. No one cares. They’ll just say it’s none of their business and that it’s a family affair. They’ll say that my father is just teaching a disobedient daughter like me a lesson. To them, I’m invisible.” The girl raises her voice and pushes me away.
I lose my balance and drop the glass of water. The glass shatters and water spills all over. Immediately, I reach for the napkins and start wiping the floor. I look at the shattered pieces of glass and suddenly stop cleaning. I remember what the elders in my village taught me: how to carry beverage without spilling, how to cleanup after someone else makes a mess, how to be a good girl, how to be a virtuous daughter, how to respect even if the person doesn’t deserve it simply because he is a man and your father, yet still, how not to respect your own self worth. I can relate to the girl’s pain and burden.
I feel a prick on my index finger and notice blood flowing out of it. A broken glass must have cut me. The girl’s eyes widen and she snaps out of her anger. She scoots closer to me so she can look at my wound. She says quickly, “I’m so sorry, doctor. I didn’t mean to push you. I’m so sorry.”
“Don’t’ worry about it, kiddo. It’s just a little cut.” I smile. I know that if I continue to probe the girl about her father, she will just shut me out. I need to gain her trust first. I reach into my pockets to search for my business cards but I only find the business card Sujin gave me. So I grab a small stack of neon sticky notes and a cheap hospital pen I found on the nightstand near the patient’s bed.
I write my number on it and hand the sticky note to the girl. I say, “Feel free to contact me if you have questions about your mother or just want a friend to talk to.”
The girl reluctantly takes the sticky note. She looks up from it and I notice that her face is filled with concern. “I was so caught up with my own problems that I forget to ask.” She says, “Who’s the man that hurt you the other day?”
I tilt my head slightly, trying to figure out how she knows about Awut’s attack. Then, I remember that the girl was there when it happened. I reply calmly, “He’s my brother. He’s just sick, that’s all.” I keep the tone light. “Don’t worry about it, kiddo. Siblings quarrel all the time.”
The girl giggles, “I think I can relate to that.” She nudges me lightly, “But y’know… if your brother is sick, maybe you can ask that cute doctor for a consult. His accent makes him sounds like a knowledgeable British knight.” The girl reaches into my pocket and pulls out Sujin’s business card. She places it on my palm and beams, “Here. Call him. If you end up going out with him, I want to hear all the details.”
I look at the business card and then at the girl. Even though it’s obvious that the girl is playing cupid, it doesn’t hurt to call Sujin since I have to contact him about the patient’s psychiatric consult anyway. Maybe the girl will open up more if we talk about boys and knights in shining armor or whatever. I smile and say, “Alright, kiddo.”
I walk into the hospital’s café, distinguished from the other parts of the hospital not by walls or a door but merely a change in the pattern of the floor tiles from plain white to different shades of beige. As soon as I step into the café, warmth embraces me. I approach the glass display glittering with meals and desserts. I scan the treats then look up to the chalk menu hanging on the wall above the coffee bar.
“What can I get you?” asks the barista in a bored, drone-like voice. I gesture with my index finger and give him an amiable, apologetic, and closed-lips smile. I’ve been so busy with surgeries lately that I barely have time to go to cafés. Occasionally, my residents get me coffees in hopes of getting on my good side, but I actually don’t drink coffee. I’m going to cherish this moment, where I can place my own order.
“It’s just a drink, birdie,” Sujin whispers, leaning towards my ear. He turns to the barista and chirps, “Double espresso for here please.”
Ugh. Double espresso? Disgusting.
“Coconut Thai Tea Latte for here, please,” I finally place my order.
Sujin and I saunter towards the drink-delivery end of the counter. “Double Espresso,” the barista calls out, leaning over slightly as he places the ceramic cup on the counter. Sujin takes the cup, taking a sip immediately without a thought. That disgusting hot water probably burnt the tip of his tongue.
After I receive my order, I take in the perfect image and aroma of my beverage. Its orange color and sweet taste come from crushed tamarind seeds and condensed milk. When I turn the cup at certain angles, I notice that the reflective sheens from my coconut Thai tea latte catch light and play tricks with anything and everything that screams ‘paradise.’
We head towards the corner table that is squeezed into the small space, shoved amidst the shelves with selections of coffee beans and tea bags. We sit there, taking off our white coats. Sujin’s brown eyes look at me as he excitedly devours his espresso like an addict. When he finally places his drink on the table, he says, “It’s too bad that this isn’t a date. I’ve managed to get us front seats at the boxing ring.”
My ears perk and before my logic can stop me, I ask curiously, “How did you manage to get that?” Darn it. He successfully reels me in.
“Champion Veera is a close friend of mine,” he replies smugly as he returns to his nasty drink. “If you want, I can get you his autograph.”
Interesting. I’ve heard rumors that Champion Veera had to take a leave of absence because he was suffering from hallucinations in the middle of a boxing match. I can’t help but ask, “Are you the psychiatrist that treated his Schizophrenia?”
Sujin stops drinking and says quietly, “You know that’s confidential.” His gaze shifts from my eyes to his espresso and then back to me. “But even if he does have Schizophrenia like the rumors say, schizophrenic patients, like other patients with any illnesses, can live a relatively normal life with proper treatment and support. I have patients with mental disorders who go on to have families and successful careers of their own,” he adds protectively.
I take a couple sips of my coconut Thai tea latte and look to the right to avoid meeting Sujin’s gaze. Suddenly, I feel a vibration in my pant pocket. “Excuse me,” I say quickly and move my fingers downward to pull out my mobile phone.
When I answer it, I hear panic seeping through the speaker. All I can manage are a few “ahuh” and “I’ll be there soon.”
“What is it, birdie?” Sujin asks.
I try to compose myself but somehow the air in the café seems thin. I can’t breath and I feel like I want to vomit. The coconut Thai tea latte is betraying me and is climbing its way up my throat. Restroom is the first thing that pops into my head. I tell Sujin I have to go. I almost run when I see the restroom sign. Forcing my way through the crowd, I lack the time and motivation to throw out redundant apologies but simply use my palms to push people off my way, unable to focus on anything but the growling queasiness rising inside my stomach.
There’s no one in line so I lunge at the stall. Without bothering to shut the door, I lean over the toilet stall and move my head closer to the water. A loathing sound escapes through my lips. I taste the acid, battling its way up my throat. I bring my face closer to the water, arching my saliva between the liquid and me, as if bringing two star-crossed lovers together, our lips longing for a desperate wet kiss. I wonder what will happen if my face unites with the water and I just allow myself to drown in it. I wonder if it will be the happy ending to my tragic story. I used to love happy endings but then I grew up and realized that they are all lies.
I pop my eyes open to find Sujin, kneeling beside me. A string of saliva pathetically hangs from the corner of my lips. My chest heaves heavily and I try to take in as much air as possible. Sujin hands me a brown paper bag with the café logo on it and says calmly, “You’re having a panic attack. Just breath into this.”
I take the bag and put my face into it as I breath in and out. When I finally manage to control the dizzying sensation, I straighten myself up and take some toilet paper to dry my mouth. I push the door open and attempt to get out of the stall only to stumble and hold onto Sujin’s arm for support. I push him away and take two steps away from him but then turn back as if a string has attached me to him.
Maybe I’m emotionally vulnerable right now or maybe it’s the lack of oxygen that impairs my judgment. But I pull Sujin towards me, and my arms wrap around him. I’m so unused to touch but instead of pushing him away, I close my eyes and collapse against his chest. His shirt is rumpled and soft against my skin, and beneath it, his warm body pulses with the faint beating of his heart and it calms me down. A labored breath escapes me. “I-it’s my brother.” I bury my head against Sujin’s shoulder and finally let myself cry. “He tried to kill himself.”
For more information on the coping strategies for HD patients going through depression and suicidal thoughts, please refer to our article.
Maladies of My Mind
20 Years Later
Ch. 2 Sticks and Stones
Screams pierce the air as the smoke engulfs my father’s praying room and the collapsing wooden 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 rushes 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.
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 he says, “Good morning, birdie.”
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 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.
Before I could utter a response, the man walks up to me and says, “Are you free this weekend, Orasa? I have an extra ticket to a Thai boxing match this weekend.”
I’m slightly taken back. The man with the weird accent just replaced ‘birdie’ with my actual name and asked me out on a date. I thought I told 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 occasionally 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 in Thailand 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.
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. 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.
“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.”
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.”
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 optimal. 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. 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. 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. 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 learned about the devastating impact my mother’s illness had done to our family and what it could continue to do.
I was lying on the hospital with my back exposed. The nurses had just finished rinsing my burned skin with cool water and left to retrieve antibiotic ointments. I recalled crying in pain at each contact to the open blisters on my back.
I saw my brother, Awut, walked into the room. He 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 him holding an oil container and lighter crept back to me. I avoided his eye contacts. I 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 at 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 led Awut to a seat and 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 nearby 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 hidden 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 the 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, are abysmal.
I took in the doctor’s description of the symptoms. My first response was denial. From what I remembered, my 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 response 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 there’s a genetic test I could take to see if I carry the gene for the disease. Since there is no cure anyway, I didn’t want to know. But, my brother 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.
Disclaimer: Even though the image above depicts the monster holding a U.S. coin, Huntington’s disease affects families around the world. It is just not often talked about. Maladies of My Mind is inspired by interviews of Thai individuals affected by different mental illnesses, but it does not cover the entirety of a Huntington’s disease experience in Thailand. Significantly, the main character and her brother suffer from paranoid schizophrenia-like symptoms, which occur in a minority of Huntington’s disease patients. The story aims to explore themes of abuse and domestic violence in hope to shed light on the negative consequences of what mental illness stigma can do to a family. Nevertheless, these experiences are not necessarily synonymous with all mental illness or Huntington’s disease experience.
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.
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.
Please check back soon or follow us on social media for news of the next segment in this short story series.
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).