An end to Huntington’s disease
Mr. Yim's body no longer belonged to him. Against the pale pink walls of the convalescent home, his left arm jerked to and fro, a violent whip. Years before, Mr. Yim had been a school principal, but it was hard to imagine him as anything from his present vegetative state. In less than a decade, he had changed – no, he had disappeared, and in his place was this frail man in a wheelchair, a stranger. His neck deflated to one side as I slowly exited the room, an unintelligible murmur escaping from his jaw. No, Mr. Yim was gone.
Combine the cognitive decline of Alzheimer's, muscle spasms of ALS, and emotional irregularities of schizophrenia and you have a rough picture of Huntington's disease, a neurodegenerative disorder in which nerve cells in the brain accumulate toxins and die. The result is a progressive loss of control of both the body and mind, manifesting as involuntary writhing movements called chorea and deteriorating mental abilities. Typically, the first signs of illness appear around age thirty to forty, worsening until patients require full-time care. Some develop depression or unusual behaviors, a by-product of damage in multiple regions of the brain. Others gradually relinquish the ability to speak, no longer able to command their vocal cords. No matter the severity of symptoms, however, all Huntington's patients inevitably die from their disease.
Although less prevalent than cancers and less gruesome than Ebola, few disorders are as heartbreaking as Huntington's. In the hospital, I’ve watched it destroy not only the physical being of a person, but thoughts, memories, and personalities – the things that make us who we are. Losing a loved one is always painful, yet especially for Huntington's patients, death can be drawn out and humiliating. And while victims of the disease undoubtedly suffer, so do the caregivers. Children of parents with Huntington's have a 50% likelihood of inheriting the condition and may spend the rest of their lives in fear, reluctant to start a family of their own or plan a long-term career. With medical testing, those at risk can find out if they will have the disease, but because there is no cure, many prefer to not know. For these unlucky individuals, fate rests on a genetic coin flip. Half of them, free of Huntington's, will have the chance to lead normal lives. The other half, predestined, will endure the horrors of neurological degeneration.
Despite the dismal outcomes of Huntington's, I believe that there is light in the abyss. As an MD-PhD student, I've learned that the disease is caused by a mutation in a single gene, opening the possibility of repairing genetic material from patients through a process called gene therapy. There are still no treatments to stop or slow down the illness, but current research is promising. In particular, recent advances in genome editing and a technology known as site-specific nucleases could make it feasible to replace the faulty gene in Huntington's with a healthy variant, thereby eliminating the toxins potentially responsible for nerve cell death. While I have many years of clinical and graduate training remaining, I hope to one day pursue this topic as a physician-researcher and translate scientific progress on the disease into future medical care.
I stand for an end to Huntington's disease. I am only one person, but I will do everything in my power to promote awareness for patients, make new discoveries in the lab, and ultimately alleviate the suffering of individuals like Mr. Yim. Our generation is closer than ever to finding a cure. I know that we can make it happen.
Magic.
I remember the way her lips tasted, and I remember the way that stupid boy pointed his finger at me when he dared me to kiss her. It was direct, no guts, no glory. I remember her tasting the exact same way a boy tasted but at the same time due to the fact that at my entire soul was brimming with finally understanding what fireworks felt like, completely, different. I remember pulling away and all at once feeling completely and utterly alone. It was a party trick, the oldest in the book. For me it wasn’t just a trick, like pulling a rabbit out of a hat, it was magic. And magic is something powerful, like when Harry Potter’s wand chose him and his hair flew back and all at once everything felt real and right. Unfortunately magic can also be dangerous, and when placed in the wrong hands it can divide us all, between the light and the dark, and between love and lost. But as I mentioned earlier, no guts, no glory, and sometimes, you just might have to dance in the darkness to realize the value of the light.
Telling my pastor I was bisexual was the scariest thing I have ever done, even scarier than going to college all the way in Iowa when I grew up in Virginia. I guess I was worried that I would get excommunicated or something drastic. I think a lot of times we hear about how judgmental Christians can be and I was no exception. I had newly discovered my faith after attending a college ministry and had not only fallen in love with the community, but with Jesus. Christianity was so new and sparkly to me, but at the same time completely overwhelming. I had no idea what I was doing, and doubted if I even deserved to be part of this wonderful slice of my Midwest campus. Most of this doubt culminated into the shame I felt surrounding my sexuality. I had always felt ashamed of my sexuality but around this group of people I looked up to, my disgust in myself grew into a ball of self-loathing and hatred.
We sat at Noodles & Company as I cried into my Pad-Thai and confessed my horrendous sin to her. I blabbered about how I knew God would disapprove even though I felt like I couldn’t stop how I felt about girls and begged her not to stop being my friend.
Her first response to me was, “I’ll always love you, no matter what.”
Now remember, Christianity was new to me, and so was my pastor. Her immediate acceptance of me was a blessing I never imagined, and a revelation to someone who had always been afraid that loving Jesus might mean she couldn’t love anyone else. She left me with this simple truth, and as I’ve grown in my faith, her statement has allowed me to separate the reality from where warped magic may have blurred the lines.
“Your sexuality doesn’t define your identity. Your identity should define yourself, and you are so much more than just your sexuality.”
Everything I do, I do with God in mind. For me, it was never about whether I could eventually marry or whether I had to be “freed” from my sin, it’s always been about my relationship with God. I’ve learned that my sexuality isn’t going to make or break my faith, and some answers are just bigger than our earthly existence. With the current social climate surrounding faith and sexuality, it’s hard to watch as people divide between the idea that who you love defines who you can be loved by. I never would have expected to be standing on my imaginary soapbox, attempting to explain how faith is supposed to bring people together, and not tear them apart. I know that I am loved no matter what, and ultimately, only God will be able to decide what is truly considered light or dark. Throughout my journey of faith, I’ve learned that we all have the capacity to wield magic, but it up to us to decide how to use it.
setlist for a funeral
it was one of those nights
where the shadows grew claws
and gouged out your stomach that was perfect for holding butterflies
an 11 P.M. where you drank darkness
and downed it like liquor
but never found the bottom of the glass
yes
it was one of those nights that you never thought would pass
it was one of those nights
where water in the shower
was turned on at its highest power
so you could spill your guts without anyone hearing your heart fall to the floor
a bathtub four inches full
with cracked violet veins spilling down the drain
it was tangled sheets
a twisted mind
and cold hands
mixed with keeping the idea of god warm
a midnight dwindling in your throat
with cough syrup washing it down
yes
it was one of those nights
where you wished two teaspoons could make you drown