My So Called Epileptic Life

I can’t remember the first time I had a seizure. 

I know that I started waking up with blood in my mouth in elementary school.

I would grind my teeth at night and bite my lips and tongue. 

When I was eleven years old, my mom took me to the emergency room because I had a  terrifying episode where I woke up in the middle of the night, sat straight up in bed and banged on the wall gasping for air. I was biting my lip as hard as I could and bleeding. She’d tried everything in her power to get me to wake up and snap out of it. Nothing was working. She got a neighbor who helped her pick me up and get me in the car. I was wriggling around so much that they accidentally dropped me on the ground which still didn’t wake me up. The attending physician asked if I had a family history of epilepsy. My dad’s uncle had been diagnosed in his youth so he stated it was a possibility for me. They put me through a series of tests that all implied that I had a seizure disorder. 

The neurologist who diagnosed me with Epilepsy had attended Johns Hopkins University. Everyone around me kept saying what a wonderful education he had. They all believed him without question when he said I had Epilepsy & happily administered the medication he prescribed to me. Everyone (except for me) thought this was the right thing for me. Something about it didn’t feel right to me but I didn’t understand why. What I remember most about my visits with him is how I always kicked BEFORE he tapped my knee with the reflex hammer. My whole body would tense up. Everyone in the room always laughed but I could never get those moments out of my mind. The story I kept telling myself was that I was just a chicken who couldn’t even handle something as simple as an examination. It was determined that I was having a combination of grand mal, complex partial & absence seizures. 

The first drug that they prescribed to me was phenobarbital. It’s a sedative hypnotic and anticonvulsant. I hated the way it made me feel groggy like a zombie & would spit it out unbeknownst to my mom. My episodes continued and worsened in severity. I started having grand mal seizures. They switched my medicine to Dilantin which made me hostile, restless and exceedingly agitated. Then came Tegretol. It seemed to control my complex partial seizures the best but did nothing to absence seizures. 

From the time I was eleven years old to 27 I took those medicines. As soon as I moved out on my own at 18, I started taking those medications as infrequently as I possibly could against the advice of everyone who loved me. “Take your medicine” was said to me twice a day without fail by those closest to me with all the love in the world. “No way” I’d snap back which would always cause them to gently remind me that maybe it was time for me to go back to the doctor who could remind me how important it was for me to stick to the plan. 

When I met Eric in 2007 at the age of 25, he became my most dedicated caretaker. Making sure I took my medicine took precedence over everything else in my life. I started taking it regularly because I wanted to be healthy for him even though I didn’t like how it made me feel. Neither of us cared much about taking care of ourselves but taking care of one another was of the utmost importance to us. 

In 2009 we found ourselves living below the poverty level without insurance. I remember having a two month supply of phenabarbital left and wondering what to do next. I didn’t have money for a doctor and wanted to just stop taking it all together. He was so afraid something bad was going to happen to me. I swore to him that no amount of seizures would ever make me feel as bad as that medicine made me feel.

Eric was anything but helpless and decided to take matters into his own hands. I remember him staying awake for days researching things online that he thought might help me. A few days later, he sat me down with the most serious look on his face. I remember it like it was yesterday. 

Eric looked at me solemnly and said “Okay baby. You don’t have to take that medicine anymore. If you don’t do that though we need to do something else, okay?” 

I nodded in agreement.

He went on “David Lynch says meditation helps. So we’re going to start meditating together, okay?” 

I scoffed at the idea arguing that it’s “too fucking hard” and that “my brain is too wiggly” to ever meditate. 

He pleaded “I need you to try. For me”

 I reluctantly told him I’d try even though I thought it was bogus.

He took my hand. “Baby, I read that a ketogenic diet can help with seizures. So we’re going to try that too, okay?” 

I asked him to explain it to me. 

He’d printed out a list of foods I’d be able to eat and pledged his solidarity. 

I said I’d try. 

For months after that day, he’d try to get me to meditate twenty minutes in morning & twenty minutes at night. I would last about five minutes before breaking down hysterically. There was too much going on in my mind. 

He bought me a Wii so I could meditate as a game. 

He tried relentlessly to teach me yoga to calm me down enough to meditate on my own. 

Nothing was helping. I would fly off in fits of rage anytime I was asked to focus inwards. 

He was unendingly patient with me no matter how hysterical I got. 

He was developing a daily meditation practice that made him exceedingly calm.

I took his patience as a sign of apathy and started to doubt that he cared about me at all. 

He started writing song after song about how everything he did was for me. 

Eventually I started believing him. 

The keto diet we were able to maintain. 

Something about that plan seemed more doable to me. 

I’d emotionally eat meat and cheese telling myself I was avoiding a seizure.

Eric just wanted me to be okay so he did everything in his power to make sure I had what he thought I needed. 

My seizures seemed to occur less frequently but always appeared in times of stress. 

I started thinking how strange that was and wondering if it might be something else. 

Still I wanted to have a normal life free of seizures so I stuck to the plan. 

We both thought I was doing so well that way for years. 

As life got busier, my dedication to keto lessened. 

I started doing a lot more stress eating and noticed my seizures increasing. 

In 2017 I got a promotion that offered insurance. I happily went back to the doctor and asked to be put back on medicine for epilepsy.  No one gave me any tests. They prescribed me what I’d always taken and sent me on my way. I still hated the way it made me feel but didn’t want to take any chances with my health after accepting the new position. 

Six months later, I lost Eric to suicide. Everyone around me was worried I was going to have a major seizure. I remember sitting on the sofa that morning after asking to be alone. I had no idea how I’d survive that day but everything in my body told me that everything would need to change. So I demanded to see a therapist.

It was the only thing I knew to be true in that moment.

I don’t know how I knew I needed that but I’m glad I did. 

Less than 24 hours after I woke up and he was gone, I was in my new therapist’s office.

I remember telling her “I’m going to die if I don’t talk to you. I know it. So I’m going to give you everything I have. Because I can’t do this anymore. Clearly the old way is not working.”

And I did. 

I told her every little thing that was on my heart from my entire life.

Each week I’d keep a notebook filled with everything I wanted to tell her. 

In between appointments, I would sit at home, cry all day long and watch videos of the most compassionate people in the world on Youtube. 

I developed a fondness for Thich Nhat Hanh who I’d heard about from an article years before on Facebook.

This was the quote that drew me in to his work….

“If you take a handful of salt and pour it into a small bowl of water, the water in the bowl will be too salty to drink. But if you pour the same amount of salt into a large river, people will still be able to drink the river's water.

If your heart is small, one unjust word or act will make you suffer. But if your heart is large, if you have understanding and compassion, that word or deed will not have the power to make you suffer.”

So I gave 100 percent of my time and attention to expanding my heart. I knew I needed to eliminate all the barriers to love if I was to ever survive the storm. 

I decided that I would love everyone and forgive everyone for everything no matter what. 

I knew I’d never have all the answers and would drive myself crazy if I focused on things outside my control.  

So I poured the contents of my heart out every single week for my therapist. 

We picked up the pieces and examined them. 

We let go of what no longer fit. 

We made space for the pieces that did. 

As we worked on connecting the dots in my story, I noticed something unexpected happening. 

I was finding peace. I was finally calm enough to meditate so I developed a daily practice. 

I started ordering every Thich Nhat Hanh (aka Thay) book I could find and learning about interbeing. 

Thay has a phrase “no mud no lotus” that became my mantra. 

I loved that because I knew I’d had a lot of mud which meant there could be a lot of lotuses.

After a solid six months of grief work, I asked if we could start on my past.

I remember telling her “I’m at peace with Eric. He’s okay. We’re okay. I need to be okay now.”

I really felt that in my soul which was wild to me. 

The peace I felt around that situation I wanted to feel in all areas of my life. 

So we delved into my past & uncovered something monumental to me. 

I had an ACES score of a 10. 

I’d always known that but didn’t recognize that it might have an effect on me anymore. 

There were a host of played out false narratives that we pulled from my mind.

“You’re not enough” was on heavy rotation and had worn out its welcome. 

Fear was the most vocal part of my mind after a life of trauma.

Doing all of that heavy lifting was extremely draining so I got really into hygge to soothe myself in a healthy way. I bought every fluffy pillow, soft blanket, scented candle, self help book, plant & bunch of flower I could like it was my job. 

While I filled my physical home with hygge elements, we worked on creating a home inside my mind that was just as comfortable as the one I was building externally. 

I don’t ever remember feeling safe a day in my life before 2018. 

I remember waking up one day, looking around at the little haven I’d built for myself and smiling knowing I’d survived my worst nightmare and come out stronger.  

You know I don’t know exactly why but I never had a seizure after Eric died. 

I stopped taking my medicine shortly after he died and proclaimed I no longer needed it. 

Admittedly at first it was because my will to live was dismal but it soon turned into a belief that I was stronger now because I’d survived the worst. 

I read the Tibetan Book of Living & Dying and came to understand the life cycle in a whole new way. Believing he was with me 24/7 now gave me a sense of safety I had never experienced. 

I started forming a hypothesis about my seizures and wanted answers.

In the spring of 2019, I made an appointment with a neurologist. 

It was my first one in almost twenty years & the doctor was new to me. 

When Neil Patel walked into the room & complimented me on my Shins pin, I knew I’d come to the right place. He asked me about every pin on my denim jacket and the “No Mud No Lotus” patch I had prominently placed. 

I told him about my theory. 

“Listen. So I know this might sound crazy but I’ve been taking medicine for Epilepsy for 25 years but I don’t think I have it.”

He asked me why I thought that & listened carefully as I explained. 

I told him about how I’d lost my husband to suicide in 2017, started cognitive behavioral therapy, worked on internal family systems, found peace within my heart, started mindful living and hadn’t had a seizure in years. I admitted that I used to suffer from a long list of physical ailments alongside seizures, all of which had stopped completely when I started therapy. 

He asked me to explain in detail my healing journey. 

“Well, I go to my therapist. She’s an angel. And I tell her EVERYTHING. I do a brain dump of everything I think is bothering me and then we find out what’s really going on. It’s always only one or two things. I got super into Thich Nhat Hanh & the Dalai Llama. I LOVE them. And I do a lot of hygge. Like massive amounts of blankets. And aromatherapy, a sound machine, essential oils and crystals. And I try to do something every day that makes me happy. I watch A LOT of Youtube videos by healers and I read all of the time”

I told him about my upcoming spiritual pilgrimage to India & asked if he’d scan my brain to confirm my suspicions. 

He asked me if I’d ever heard of psychogenic seizures. I hadn’t. 

He informed me they can be caused by PTSD.

They weren’t really acknowledged until after my diagnosis. 

What was wild to hear is that over 10% of people diagnosed with Epilepsy are believed to have been misdiagnosed.

What they’ve been told are epileptic seizures are really psychogenic NES.

I asked “is that why I kicked before the reflex hammer?”

“Maybe” he smiled “we can’t be sure”.

He told me we couldn’t be sure if I had ever actually had Epilepsy. 

He added that he suspected that I didn’t have it now and questioned if I ever did. 

I asked him why.

He said “you only ever had those episodes when you were stressed out. Epilepsy doesn’t work that way. It can happen at any time.” 

Bam. Just as I’d suspected. 

I asked if we could order an EEG & MRI to be sure. 

Both scans came back normal. 

He told me if I wanted to I could come back in six months to do a deeper MRI to verify the results. 

I didn’t need that affirmation. Because I already knew beyond the shadow of a doubt.

I’d built a home within myself that could weather any storm. 

And Eric was right all along. Meditation did help. 

Apparently cognitive behavioral therapy and mindfulness based psychotherapy are two of the leading ways to treat Psychogenic Nonepileptic Seizures. 

Who knew?  

When my life fell apart the way I’d built it up, it came back together exactly as it was meant to.

How freaking beautiful is that? I could never have imagined my life would change that much.

I feel like I finally have the keys to my life and am in the drivers seat for the first time. 

For twenty five years, PTSD ruled my life. 

I was afraid to enjoy my life for fear of accidentally hurting anyone.

Not anymore. I will not live in fear. I will not let the past keep me from enjoying the present.

I will not waste one moment worrying about things beyond my control. 

I will show up to life as fully as I can and never ever hold back. 

Because I know how precious it all is.