My story leading to the conversion disorder PNES

Written by torathewriter

I’m a middle child of four sisters. We all have names that start with V’s and my mom dressed us all alike when we were young. We even had the same hairstyles; long black hair with bangs.

I think the trouble with me started way back then.

I didn’t have my own identity. I was just a kid with no say of my own existence and I was very mindful of this. Not to mention, of all four of my mother’s daughters, I was the one she hated.

I don’t know why and I will never know why.

What I do know is that I was the one that she was always calling ugly, an idiot, or a loser. I was the one whose birthday she would forget about. I was the one she smacked across the face with a stack of unopened printer paper for asking a single question.

I was the one she despised.

Starting at 16, I jumped from relative to relative. I first went to live with my uncle Louie who took me in. His wife favored me and didn’t mind me living under their roof. I enjoyed being with them and their two young kids. We’d have meals together and talk about our days. I felt like I was a part of a home there.

But my time with them was short-lived for reasons I don’t remember to this day.

I moved in with my eldest sister, Vivian, next. She was living with her boyfriend and they just had a baby. She allowed me to sleep on her couch as a live-in nanny. I got into Independent Studies where I was able to complete school online and receive my diploma. When Vivian and her boyfriend had their second child they decided there was no more room for me in their two-bedroom apartment. They suggested I try to be more independent; they wanted me to move out.

I was 18 when my aunt Kim from Ohio rang me on the phone. She offered that I move to Ohio, attend a community college there to pursue my interest in writing, and live with her and her husband without having to pay rent.

 

Jumping On The Opportunity

I immediately came to find out that one of the rules of living under her roof rent-free was to work in her nail salon 6 days a week. And just like that, I was trapped. Not only did she want me to commit my time studying to be a nail technician but she and her husband had all kinds of rules for me, such as not wearing shorts, or having friends.

There it was again… Not being able to have a say in my own existence.

It was lonely living with my aunt Kim and her husband. Everything they talked about and believed in was the opposite of my own opinions and beliefs. Everything was about money and to them, Asians were better than everyone else in the world. They wanted and needed me to have the same mindset as they did but I wouldn’t give in to them. There were many times when aunt Kim would tell me that she wanted to “brainwash” me.

Hearing that come straight from her mouth scared the living hell out of me.

But still, there I was, just a kid who felt like they had nowhere else to go.

I didn’t have my driver’s license yet so everywhere they went, I was in tow. I was with them all the time. They taught me adult responsibilities like balancing a checkbook, cleaning the entire house correctly, driving a car, and more. For those things, I will forever be grateful to them but as time went on they became more and more repulsive to be around.

 

Things Took A Turn For The Worse

They announced that they’d be going on a vacation and that they were going to leave the house to me and the nail salon to my aunt’s brother-in-law’s care.

My aunt’s brother-in-law, Andy, always gave me the creeps. Once, he and his wife came over to have dinner with us, and I found him in my bedroom with his hand on the doorknob to my closet. I asked him what he was doing and he just grinned at me; this sick, big grin on his face.

“Nothing,” he was still grinning when he left the room.

I remember telling aunt Kim about it and she said, “maybe he just wanted to see how much clothes you had.”

But on that evening that I was home alone, he knew.

With a key to the garage door, he got into the house while I was in my bedroom. He pinned me down so quickly to the floor that I had no time to even react.

I screamed when he forced himself into me.

Then… He just got up, pulled up his pants, and left.

For some reason, the first person I called was my mom. I pleaded with her to help me get back to California. She asked me what happened and when I told her, she instructed that I wait for her to call me back.

The dial tone was deafening when she hung up.

It felt like ages for her to get back to me. When she did, she simply told me to get on my hands and knees and beg my aunt and uncle for forgiveness as if it were my fault. She told me to stay there and not to tell anyone else that this happened, then the line went dead again.

I felt my entire being sink.

I called the next person I could think of. My dad. Here’s the thing about him. If you asked my sisters about our father, they would tell you he wasn’t much of one. But to me, I loved him with all my heart. My mom and dad divorced when my little sister, Vonnie, was just in preschool. But he’d make the effort to spend time with us. I could only remember snippets of good times with him like when he would bring me kettle corn and lay with me in the living room for a movie night together.

He was in a car accident when I was in the third grade that put him in a coma. When he woke, he lost the ability to walk and had to learn how to do it all over again. From there, his health declined with seizures, alcoholism, memory loss and depression.

When I made that phone call. He asked who I was.

I told him I was his daughter and went on to say what happened to me. He was livid. I could hear him screaming to someone nearby in Vietnamese. “Tora was raped!” curse words followed. Then he said he was going to call my mom and he hung up.

 

What Happened Next?

I cried for hours.

A series of arguments, screaming and crying followed. As I have blacked out a lot of what happened after aunt Kim and uncle Nick came back from their trip, and how they reacted upon their return, I will be quick to conclude their chapter in my life the moment they kicked me out of their house.

Months later, after living in a Motel 6 long enough for the bed bugs to bite and scar me, I got a job as a server and eventually befriended a quirky girl named Rachel, who was looking for a roommate to live with her in Columbus. With nothing tying me down, I decided to take the leap and go along with Rachel on her move. We built an amazing friendship together.

I was in and out of relationships for the next year until I met a guy named Matt at work. I was smitten with him.

We decided to move in with each other only two months into our relationship and once my lease with Rachel, one of my best friends, ended. On two hands, I can count all the times that Matt and I spent happily together. On two of his, he could count all the times we weren’t. I didn’t have the slightest clue of how unhappy he was being with me.

About a year into our relationship, we found out we were pregnant. That’s when he realized that he didn’t want to be stuck with me. He told me he didn’t want to have anything to do with me or the baby.

 

In One Fell Swoop

I went from being in a really good place in my life… Independent, happy, and supposedly thriving in my relationship, to everything falling apart.

My second older sister, Valerie, was the one who talked my mom into helping me. Together, the three of my siblings combined their money and bought me a plane ticket back to California in the third trimester of my pregnancy. I moved in with my mom who wasn’t pleased to see me. The first thing she said when she saw me was, “you’re so ugly.”

It was difficult to live with my mom for the reason that she was constantly putting me down, telling me that I was pathetic, useless, or going nowhere in life. She was my mom but she was malicious. She was helping me but she would hurt me. I tried to stay out of her way.

I struggled with being pregnant and then with the anxieties of being a single mom. It was overwhelming. My mom helped me watch my daughter on the weekends as I went back to work in a restaurant.

By the time my daughter was nine months old, I met Miguel. If I wasn’t home with my daughter, I was at work. Naturally, that’s how I wound up meeting most people.

Miguel was charming, kind, and funny. We clicked right away. As the story goes, our friendship turned into more, and then we were dating. Miguel treated my daughter as his own and we were happy together. We moved in and had a baby boy later down the road. I felt content with my life. I had everything: a beautiful little family of my own, a boyfriend who loved me, and I had just returned to work after taking time off on maternity leave.

 

And Then The Seizures Began

We didn’t know what to think of it at first. We presumed something was seriously wrong with me as emergency room visits got us nowhere. I was having seizures every day for weeks, some lasting hours on end.

Two weeks after my first attack, I was brought to a hospital in San Francisco where they ran an EEG on me along with video monitoring. There, they figured out that I had a conversion disorder called Psychogenic Non-Epileptic Seizures (PNES).

I spent months after my diagnosis being told that I was suffering from these seizures because of my unresolved issues or underlying stress. Psychiatrists and therapists told me that I had PTSD, anxiety, depression, a history of abuse, and past trauma. The motherload of a list of things you didn’t want to hear especially when you had put the trauma behind you.

I thought I did anyway.

I thought that I was in a good place in my life before all of this, that there was no room for me to be sad about things that happened in my past.

 

The Light At The End Of The Tunnel

As I went on to have more attacks that became more violent, I discovered that the psychological distress that was bottled up had erupted at the point in my life when I felt most happy because it was time for me to lay it all out and acknowledge it all.

The emotional and mental abuse my mom put me through while growing up, my instability in a home, the toxic people in my life, my trauma from being sexually assaulted, my failed relationships, or the feeling of never being good enough… I had never allowed myself the proper time to heal and only wandered through life not daring to look back.

I needed to really look at everything I’ve been through. And then use all my strength to forgive it all. You need to forgive but don’t forget.

It’s been a year since I’ve been diagnosed with PNES. There have been many people who still don’t understand and blame my illness on being “just in my head” or believing that this is something I can just “think away”. However, there are many people who have been supportive no matter what. Take, for instance, my fiance Miguel. This has been incredibly difficult for him standing by me, being a witness to how I lose control of my body, but he stayed by me, only offering strength. I went from having seizures every day for months to every once in a while when life gets too overwhelming. The quality of my life has changed drastically since my first psychogenic seizure. My kids get scared when an episode hits and I find that it’s difficult for me to parent them at times with my condition. But I am not alone in this and I am doing my best to heal.

Take it day by day, we are all still recovering.

 

Image credit: Free-Photos from Pixabay

 

My name is Victoria but I’ve grown up being called Tora. I am a freelance writer, blogger, and mental health advocate who is only allowed to drink decaf coffee. I live my days as a person with Psychogenic Non-Epileptic Seizures (PNES) while raising two energetic toddlers that call me Mama.

You will find Tora at torathewriter.com.


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