Chugging down the track, you overtook me, minding my own business, doing eight year old things, it was like you zapped me inside my tiny little body. I became extremely dizzy; the right side of my body went limp and impossible to use.
You pushed me backwards and the hard floor caught me. A scream came from deep inside me but it was trapped inside my brain unable to escape my lips. You caused me to be alone, you taught me what true loneliness is. You forced me down a dark tunnel where I could hear but I was silenced. There was nothing but blackness all around me I could hear you Epilepsy…..the sound of a train in the distance, it was you and you were coming fast. Lying in the darkness, I felt you run through me. The Train…yes you Epilepsy came to a painful stop, leaving me with a pounding sledge hammer in my head. Emerging from the tunnel, I heard my mom’s voice say, “Jade, it’s okay now”.
In the summer of 1987 I had my first seizure a month shy of my eighth birthday. I was admitted to UC Davis a huge teaching hospital in Sacramento California. I had an MRI and EEG. The MRI showed a spot on my left temporal occipital region and I was immediately scheduled for a cerebral angiogram it showed that there was no blood flow to the area, the doctors believed it was a glioblastoma. This led to brain biopsy, a piece of tissue was taken and it was determined to be necrotic tissue better known as a scar not cancer as they thought. I was official diagnosed with Temporal Lobe Epilepsy which caused complex and partial seizures and thus began my struggle with Epilepsy.
The diagnosis of Epilepsy was just the beginning. Over the next 28 years I would be on a total of 10 medications; Phenobarbital, Tegretol, Gabitril, Lamictal, Carbatrol, Keppra, Vimpat, Zonisamide, Ativan and Kolonipin. I was told by doctors I would always have to be on medication. The side effects of these medications affected me greatly. I required 10 hours of sleep, learning was a challenge, I had constant headaches, and emotionally I felt like a roller coaster. One gift was that since I was diagnosed so young and placed on medication early those side effects felt normal. When I got older my biggest worry about my medications was cost and I decided to go on a generic medication to help with cost. It didn’t go well and ultimately I was forced to make a decision…pay the exorbitant cost of brand name medication or face the risk of break-through seizures that generic medication led to for me. Each of those experiences and struggles would make me stronger and more determined to show the world that Epilepsy would not define me but drive me to change myself and the world.
In late 2015 I received a call from my younger sister saying “you need to look into the Ketogenic Diet”. I knew about the Ketogenic Diet but had not thought it viable as “it was for children”. But I was at rock bottom and willing to do anything. I went and saw my neurologist and told him I wanted to be on the Ketogenic Diet and requested to be taken off Zonisamide and stay on only Carbatrol and Vimpat. He sent me away with a titration schedule to take me off Zonisamide, a link to the Charlie foundation website and told me don’t eat more than 50 grams of carbohydrates and as much protein as you want. For the first time in a long time I felt hopeful and I was ready “to heal myself”. Little did I know it was going to take more than information he provided
I spent the next year figuring it out. Each morning I spent hours researching online. My husband found apps to help me, I ordered books, looked at websites, listened to podcasts, and shared on social media. The only constant was that I felt alone in my quest to use the Ketogenic Diet to control my seizures. “I just couldn’t seem to find adults using it the way I was”.
Eventually this solitary quest changed when I came across a woman using ketogenic way of eating to control her seizures. We started talking weekly on the phone and texting. Her support helped me get through the early days. She helped quell my fears of having high enough ketones to control seizure activity. When I hit my year mark on the diet I finally found a dietician who added additional guidance. Having my family and a community to support me made surviving this journey possible but it wouldn’t have happened if I wasn’t willing to put in the work and accept this as my life.
Committing to this lifestyle did more than just help control my seizures, it created a better version of me. It set me free from the fear of my seizures and guided me towards finding peace with my diagnosis. It also helped me to heal physically; I no longer live with daily brain fog, my moods are even and I have started the process of coming off medications. I smile more, and my world has truly opened up. My view of the world no matter what it throws at me is manageable now. These gifts in turn have provided me the opportunity and space to grow a business.
I thought the Ketogenic Diet was the end of my journey but it has become my new beginning. Epilepsy doesn’t hold me back anymore and making the decision to use the diet to heal myself has become the driving force behind my larger goal of changing the lives of those around me for the better. My dream of educating, sharing my story and empowering individuals to not let their diagnoses define them is a reality for me.
- Click HERE to go to one of Jade’s favorite keto recipes, Egg Muffins.
- You can read more about Jade and her keto journey on her website, www.jadenelson.net.