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I remember one very early winter morning, I was sleeping alone in the basement living room. The laundry door opened, and out gnarled a crawling hairy demon, surprised that I had woken up and saw it’s presence. I was paralyzed by fear and the monster quickly crawled itself ontop my chest. I fell unconscious attempting to scream for help, unsuccessfully. At the time, I was a high school student who would eventually come to be diagnosed with Epilepsy eight months later, after my parents finally decided to confront their shame of my health condition and finally take me to seek medical attention.
Almost seven years later and still living with epilepsy to this day, this is my story as a Hmong-American; a journey of my painful experience and my traditional family.
This is a story of my health; a story of shame, spiritualism, and recovery.
I’d have these continuing nightmares on repeat, over and over again, until a sudden numbing jolt wakes me up. My right arm shaking violently and repeatedly, until I would succumb to my epilipsy, ultimately knocking me unconscious. There are no final thoughts, only thoughts that you were going die. Only the fear of death and the violent pains in my brain.
In my pain-ridden mind, it felt like an eternal nightmare. I couldn’t feel anything, but just the physical feeling of something powerful and fearful just smashing my head and my brains over and over again with a giant hammer while gasping to breathe.
It was February 2007, and my first experience with a seizure.
I suddenly woke up from my seizure, gasping for life. Breathing heavily, still screaming for help, screaming for air, afraid to die alone. When no one was home, I’d crawl out of my bed, tumbling down, unable to stand, hitting the walls, unable to open doors. You just forget how to walk, the pain in your head is just so unbearable.
I didn’t know what happened. I didn’t ask for help because I didn’t know what to say or how to explain it. I thought it would be the last of it.
I was visiting my cousin that Summer the second time it happened. It didn’t go away like it did the first time. This time, it kept happening almost every single night. My parents were informed, and drove hours to pick me up and went straight to home. They never spoke to me of my pain, they just consistently told me it was my fault I became sick, it was my ancestors’ spirits punishing me for my misdeeds. But what have I done? I was only a young teenager who did not know the bitterness of alcohol, who did not know the weight of a cigarette in my hands, nor recognized the difference of drugs and substances looked like.
We finally got home. They made me a bed on their bedroom floor, and told me to be good, pray, and stay home. I didn’t know what was wrong with me. They didn’t take me to the hospital; they didn’t take me to see a doctor.
No one told me what happened. I would suffer in the daytime full of fears and wake up from the unbearable pain in the morning from my seizures until finally, begging my mother for four months, she took me to see a doctor.
My doctors never found the cause of my epilepsy. My EEG’s and MRI’s, these test they did on my brain, turned out fine. No matter how many times I’ve taken tests, nothing showed up. I was a ‘normal’ kid, just with an unknown case of epilepsy. With no answers and no gained knowledge of my condition, I was right back where I started. A month later, I had finally received a prescription for my epilepsy. I was so happy and blessed to finally benefit from the medical attention I’ve been deprived from.
Hmong elders characterized those who suffered from epilepsy or mental illness as people with “bad spirits.” There are no words or concept for mental illness or neurological terms. The media makes fun of people suffering from Epilepsy. My friends made fun of it. My family made fun of it. Those two things alone made it even more horrifying to admit my health condition. I just didn’t feel like I could talk to anyone about it; I was just so ashamed of it.
My parents weren’t very supportive of me while I dealt with it either. They said I got epilepsy, because I was a bad child. I was just taught to be so embarrassed of it. Eventually I began being treated like I wasn’t a normal person anymore by my family. I had no one to turn to.
My parents were ashamed of me. They were ashamed of my condition. They used everything they could to make me ashamed of my health, using hurtful remarks and they made me an outcast to the rest of my family, even threatening to halt my medication and doctor appointments if I disobeyed them once.
My siblings were no help either. In fact, they were a lot worse. One day, my sister found out about my condition. She treated me terribly and still does today. She didn’t want me near her, or to touch anything, because she was afraid I would spread the “disease” to her. She was afraid that I’d make her sick. When I would wake up screaming from the terror of my nightmares, she would bang on my walls and tell me to shut up and be quiet.
I didn’t feel safe with them anymore; I didn’t feel safe at home. But where could I go when my parents provided me the medical attention I needed? I had no choice but to rely on them and to depend on them for my sickness.
We looked up to three religions, hoping for a cure. Three different shamans to seek for guidance in the Spirit World and to come find a conclusion as to why I had developed epilepsy. Drinking traditional medicine three times a day, tying strings to my wrist, ankle, and waist to keep my soul from leaving, and even changing my name to keep evil spirits from finding me.
We also looked to Christianity, where I tried to pray to God and Jesus. That didn’t help either. Then finally, Buddhism. No master monks could help with my case either.
I was alone. Neither my family, doctors, nor religion would support or guide me on my journey to find a cure.
Even with my parents paying for my expensive treatment, they did everything they can to save money. I understood it wasn’t their fault. We were struggling to make ends meet like everyone else. I just felt like I was a financial burden to my parents.
At the darkest hours of my life, I just wanted to die; I wanted to end all the physical, mental, and emotional pain I suffered from. No one was there for me; I had no one to talk to, and no one to share or listen to my pain and experiences.
I thought, “My parents pay so much money for my medicine, for all my medical expenses, and for all the insurance, yet, here I am sick in bed, unable to work, unable to drive, and unable to be a productive, contributing citizen.”
I had big dreams, but I couldn’t follow them anymore; all of my school money was all spent on keeping me alive. The costly expenses of my doctor check-ups, medication, and even going to the emergency room constantly, was my daily life support. It cost so much to take care of me… I just wanted to end my life.
“Why keep me alive if I’m making my parents and family even more poor? Why keep me alive when I suffer from fear and pain every single day?” I thought. I’d rather just end it all early, have a cheap funeral, and my parents will be better off without me; I’d finally be able to rest my wandering, painful soul.
What kept me alive and motivated me, I suppose, were my ideas of love and adventures. I wanted to be alive, to experience love, and go on adventures.
My home fostered depression, and I knew I had to leave.
The monsters weren’t the Death Gods in my nightmares that strangled me in my sleep; the monsters were my own family. They were the true horrors who locked me up, because they were embarrassed of me, and I became ashamed of my abnormal health. I packed my bags and left the seven years I had suffered with them.
Several months later after moving on my own to another state, I wrote this story after my last visit to the emergency room. It was a way for me to confront my own demons; a way to share my own personal story to anyone who has suffered, or is currently suffering, a similar experience to mine. I wanted others to know how I survived from the pain of my perpetual nightmares of epilepsy, to be manifested into this creature by my own family that was thought to be “taboo” to touch and to be quickly put away, shunned, and continuously shamed for my health condition.
With only my broken heart, mind, and soul, to mend itself and be strong on my own.
After many months, moving on my own and rebuilding my life again, I learned that my fears lessened and so did the physical and neurological pains with it.
Speaking honestly about my epilepsy to my doctors and close friends made me feel more normal again; it was like my voice and experiences were validated. I had people who were supportive in my journey of recovery, my journey of healing, and my journey from freedom of fear.
I don’t blame my parents, my family or the Hmong society for not understanding. It was a conflict of culture and Hmong folk traditions. How would my parents be able to describe it to others that I had epilipsy? The words Hmong could only come out as “The spirit catches you, and you fall”, that my soul was failing on me. How would you describe mental health? We couldn’t tell people in the Hmong language that I was “unhealthy in the head”. That would only translate to as “crazy”.
There are no words to describe my suffering from depression, from suicidal thoughts from my epilispy. There were barriers between language and traditional culture against modern terms in the medical field.
My hope in the future is to be free from my epilepsy, and to live my life again normally, like I did as a child. That even despite the lack of support and knowledge from my family, I hope to continue and pursue my dreams and goals without the burden and limitations of my ability; I hope to one day be an advocate for seizures and epilepsy in children and adults.
I am hopeful for the future of my neurological health and mental health; I am keeping a positive mind for the future of my health and a cure for epilepsy.