Ch. 5 Lullaby of Wishes
My brother had just died of pneumonia. Huntington’s Disease is not fatal in itself. People with HD have a shorter life expectancy and die of other life-threatening complications related to this disease. I remembered not being able to move when I was brought to the morgue to confirm his body.
It almost felt like I was floating above myself to get an aerial view of the tragic end. My first thought was “Awut. Wake up. That’s not funny. I have something to tell you.” I thought I might have spoken those words out loud to him. But of course he didn’t wake up. He didn’t answer. Didn’t move. Fear consumed me. I had dreamed this very scene many times before. Sometimes even hoped for it to happen in those moments of despair because Awut had mentioned so many times that he wanted to die. But in those brief moments, it wasn’t like this. I had imagined relief. But this is nothing like relief. I wanted to tell him I had just tested positive for HD as well. Maybe we could do this together. Perhaps we could even morbidly joke about how our odds were just bad. Awut had always thought I would get away from the disease since there’s a fifty percent chance of getting it and he already got it. But that’s just a myth. Even if your siblings already inherited the disease, you still have a fifty percent chance of inheriting it.
I’m startled from my thoughts by Sujin’s voice. “Hmm?” I murmur, as he loops his arm around mine when we find our way through the crowded street.
Sujin purses his lips in a familiar expression of concern. He can tell I’m distracted, but I’m grateful he decides to let it go. “I said, when we get back, we should meet Dr.Roongroj. He’s the director of the Motor Disorder Center in Thailand and is also a friend of mine. He told me there are many clinical trials you would be a great fit for.”
I let his words slide pass me. That seems to be happening a lot recently. Even though he is not my doctor, Sujin would tell me about the clinical trials I should sign up for or the medications I should be taking. The more he kept telling me what I should do, the less I feel like his partner and more like his patient. The control I once have is escaping me.
So I try to distract myself with the unbearable heat that surrounds me. I feel a bead of sweat slowly drip down my neck and sacrifice itself to the fabric confines of my already damp shirt. I lethargically fan my hand at my face, hoping it might grant some brief respite from the overwhelming heat. The air is so thick with moisture and humidity that I feel I could swim through it. The entire village seems to be slowly melting. I could swear those Buddha statues were standing a few inches taller a couple minutes ago. It is early evening on the longest week of the year. We are lost in the thick of a celebration in the Songkran Festival, which is a weeklong festival in April. It’s a Thai New Year and is also the most important holiday of the year. Traditionally, water is sprayed on statues of Buddha as a means of purification. But now, this festival has turned into a countrywide water fight. It sounds like fun for most, but for a trauma surgeon like me, it’s a nightmare. This year alone, Thailand’s roads claimed 364 lives over the 7-day Songkran holiday, with a further 3,600 people injured.
The sun has nearly dipped below the horizon, and the moon hangs low and plump, ripe golden orbs suspended over the lake. Sujin and I wander through the throngs of revelers, lost amid the celebration’s rainbow of colors. Both of us are dressed in Northern Thai silks tonight, my hair wrapped up and our fingers adorned with silver rings. People draped in jasmine garlands are everywhere, packed into the narrow alleys and spilling out into the squares, dancing in long lines around bathing temples. We walk past waterways swollen with cargo-laden boats carved in gold and silver with repeating circles and squares. Ornate tapestries hang from balconies in the smoky air.
I feel as if I were in a haze, the celebrations floating around me. It’s strange to look out at all of this joy when I am feeling the opposite of it. Even with his death, my brother still found a way to bother me. In his will, he wanted to be cremated back at our hometown. Little did he know that our quiet little town in Chiang Mai has now turned into a popular spot for tourists. I stay silent, letting Sujin guide us through the busy streets, as I return to my dark thoughts.
Since my Huntington’s disease symptoms start progressing, I have woken to whispers at my bedside that fade away seconds later. They are not always there, and I cannot always understand them even when they are speaking to me. But I can always feel their presence lingering in the corners of my mind. They are blades, rotations of sound and silence, lamps that burn black. They whisper, “Orasa, you should blame yourself for Awut’s death.”
At first I would argue with the whispers. But now, I’m too weak to even come up a counter. So I agree silently to the whispers. I should have taken the genetic test sooner. At least he won’t feel alone when he died.
“All of it was your fault,” the whispers in my head grow. “You killed him. Not the disease but you. You killed Awut.”
Yes. What kind of a doctor am I when I can’t even do anything to save my own brother’s life?
“We both know deep down you wanted him to die,” the whispers say. “So you can finally be free.”
“Orasa,” Sujin says. He tugs on my arm and the whispers scatter. “We’re here.”
We arrive at the temple my brother mentioned in his will. He wanted to be cremated at the same place our mother was. The undertaker emerges from inside the temple and stomp towards the gate. I recognize him from my mother’s funeral years ago. He no longer wears a youthful enthusiasm he once had when he was excited to have his first job so he could support his family. He wears an expression of a dead man who is stuck in a dead end job he despises. I don’t blame him. Undertakers are considered the lowest of the Thai society. People avoid them because they are associated with death. But I don’t care. He is one of the few familiar faces I recognize from my childhood and I can’t wait to greet him. I force my steps towards him but my legs wobble. Before I could stop myself, I trip on my own feet and fall face down to the ground. Sujin rushes to my side. I look up to find the undertaker towering over me. I force a smile but the man says, “We don’t allow drunkards in the temple.” I thought he was joking at first. Any second now he would laugh and welcome me home like what old friends do. But he doesn’t remember me and he looks dead serious about his accusation.
Sujin helps me up. “She’s not drunk.” He tightens his fists and grumbles, “She’s just sick. The way she walks is one of her symptoms”
The undertaker looks unfazed. He doesn’t believe a word Sujin said. I turn to Sujin and mutter, “I’ll be by the lake. Please make sure my brother’s funeral arrangement is settled.”
He looks concerned but I slip away from him anyway. I walk towards the lake nearby the temple. It is also the lake my family loved to visit – when we were a still a family that is.
I stare silently at my reflection in the lake, studying my long dark hair and the broken look on my face, both illuminated by the orange and yellow hue of the temple’s candlelight. I scream at my reflection and try to shatter it with my fist. The water splashes. The image becomes distorted but it quickly returns to its shape. My brother blurs in and out of the lake’s reflection, gliding behind me with a dark and mocking face. I try to make him go away, but to no avail.
I look away and found an empty bottle of alcohol by the lake. I seize it and angrily smash it to the ground. The bottle shatters and my hand starts bleeding. I grab a shard of glass, ignoring the sharp pain from my wounded hand. I take hold of a lock of my hair and frantically begin to cut it off. The wound on my hand twists in protest, tearing open, but I don’t care. I hate everything about this disease. I want it gone. It has brought upon me all of the pain in my life. It has taken from me everything — my mother, my brother and even my father who lost himself in grief and alcohol. I am alone, broken and small, like a wingless butterfly fighting for air in the flooding monsoon.
I have to get rid of this disease. I slice away again and again, chopping off locks of my hair and spilling the broken strands all around me. In my madness, the shard nips at my fingers and my scalp, leaving cuts as it goes. Red blurs my vision.
Somewhere in the midst of my hysteria is a strong, clear voice. Then Sujin is here beside me, his large hands reaching for mine. But his pleas fall deaf on my ears. I jerk away from his grasp and continue to slash away my hair. “Let go of me,” I hiss, tasting salt and water on my lips.
Sujin tries to seize the shard from my hand. In blind rage, I lash out at him with it. I stop when I see an oozing flow of red seeping out of his cheek. My hands tremble and I drop the shard. The sudden rush of control leaving my body robs me of my breath. I gasp and brace myself against the floor as my body crumples. Sujin’s arms are around me, trying to calm me down. All around us are locks of my hair, painted in orange and yellow by the candle lit temple. Sujin pulls me into a tight embrace. Frightened and distraught, I cling desperately to him.
“I’m losing myself,” I whisper, my voice cut by broken sobs. “I’m a surgeon who can’t operate. I’m a daughter who couldn’t save her mother. I’m a sister who left her brother to die all alone.”
I finally begin to understand my brother’s wish to end his life. I push Sujin away and grab hold of the broken shard of glass again — tighter this time, more blood flowing out of my hand as I pull it closer to me. There will be books that I will never finish reading, patients that I will never finish treating, TV series that I’ve started and will never see the end of. There were times in medical school when these never moments overwhelm me. When I realized there were medical textbooks and journals that I would probably never read, I went to the medical school library data and created a list with every single medical related textbook and journal. There are 28 pre-modern textbooks, 21 modern textbooks and 25,400 scientific journals. So now I mourn. I mourn for the textbooks and journals that will never reach me. For the words and knowledge that lie in the eternally unopened pages. For the patients I will never see again. I mourn my 30th birthday that won’t be celebrated. The overwhelming never moments I must face are too much for me to handle alone and I just want to drown in them.
“Please.” Sujin’s soft words cut through the angry voices poisoning my mind. He hesitates. “Please don’t give up.”
I flinch away. “No,” I snap. “I don’t need your pity.”
“How could you say that?” Sujin’s eyes glow with tears. “After all these years, you must know how I really feel about you.”
I know. But I won’t allow him to feel it. “You don’t have a future with me.” Sujin studies my face. The sadness on his face breaks my heart. Finally, Sujin lets go. “Just leave me alone,” I mutter over and over again. “Just leave me al–“
My words cut off when he puts his forehead against mine.
“Orasa,” he closes his eyes and whispers. “Do you remember how we used to skip lectures and lie on top of the med school building, pretending that we could actually count the stars in the polluted Bangkok night and ignoring our responsibilities?” I nod against his forehead. “Do you remember how your patients left gifts at the hospital for you once they knew?” His voice starts to tremble. “Do you remember how we sat up late into the night, holding each other and crying when your genetic test came back positive?”
I nod, biting back my tears.
“You are not alone.” He places both his hands on my face. “I’m here for you.”
Something breaks inside me, dissipating the ugly whispers that plagued me moments earlier, and the gates holding back my tears break down. I hug Sujin fiercely, as if I might die were I to let go. Grief envelops me. I was brought back to the time my family was happy before the disease caught a hold of us.
Sitting by the lake, mom unfurled her fingers with her palm up, like a flower opening to the butterflies. Awut and I fluttered to her sides. Mom held our small hands and said she could read our futures in the lines of our palms.
“Orasa,” Mom said. “Your education line is long. Maybe you will become a doctor.” Mom traced the line with her slender finger, tickling my hand as it moved from the base of my palm up to my pinky.
Awut shoved away my hand and offered his for mom’s reading. “Look at mine, Mom!”
I pouted, but mom chuckled. “Let me see…” She held his hand, studied it for a moment and then suddenly kissed it. Awut groaned out of frustration but I could see a smile at the corner of his lips.
“This one, dear. Please tell me about this one.” Father joined us, extending his hand in front of mom. He was a whole and healthy vision of a man I used to know, with laughter in his voice and the scent of jasmine rice on his shirt instead of the familiar perfume of alcohol. Mom pointed at a line on his palm and predicted that he would live to be an old man with happy and healthy children.
It did not matter that we heard the stories before. Each story was a lullaby of wishes we were always reaching for. We were always reaching and wishing to feel mom’s touch.
I hold the memory for as long as I can. I would have held it forever, happy to lose myself in it for the rest of my life. Finally, I release the memory and open my eyes. The image of my family is replaced with Sujin, his arms still wrapped tightly around me. I lean against him, weak and exhausted.
In that moment, I realize that all I’ve ever wished for, kindness, companionship and family, come from the people I still have in my life. Not in the past where I’ve lost too much or in the future I may not have because of this disease. But in this moment, I am not alone. The people in my life give me the courage to live and overcome the overwhelming never moments.
Tomorrow morning, I will ask Sujin about the clinical trials he has been talking about. But tonight, we stay where we are, holding on, lost in the lullaby of wishes.
Author’s note: I hope you enjoyed the story! For more information about HD resources in Asia, please check out our articles. For more information about the clinical trials, please check out our articles on research updates.