Guest Post: Life Elektrik
Hi, persisters! Look no further for some serious inspiration to get you through this day. Christalle is the founder of Life Elektrik, a community of support, education and advocacy for adults living with epilepsy. She's a beautiful human inside and out with a powerful story. Enjoy!
“Don't judge each day by the harvest you reap but by the seeds that you plant.” - Robert Louis Stevenson
At age 25, I was a few weeks away from graduating college and becoming an aspiring fashion industry professional. I had so much to do in preparation for graduation: a senior collection to complete, job interviews to conquer, classmates to tutor, and shifts to work at my part-time job. Looking back, I definitely felt overwhelmed, stressed, and unbalanced.
One night after dinner, I got up from the table to put my plate in the sink, but I never made it there. Instead, I fell flat on my face, hitting my forehead on the hardwood floor. According to my boyfriend, my eyes rolled to the back of my head, and I was convulsing. I remember coming to and feeling like I’d been hit by a train. My head was throbbing, my body hurt, and all I wanted to do was sleep.
The next morning, my boyfriend told me what happened “wasn’t normal.” He said I needed to see a doctor. So the next day, we made an appointment with a neurologist. I explained to my boyfriend that I’d experienced episodes of low blood sugar & blackouts in the past, but I was never diagnosed with anything other than hypoglycemia. After many tests, I was encouraged to keep a piece of candy in my pocket in case I experienced another hypoglycemic episode. Afterwards, I was sent home. I was nervous about seeing a neurologist, but I knew I needed answers.
At my first appointment, the neurologist told me that I had a concussion from hitting my head during the fall, and he wanted to do a sleep-deprived electroencephalogram (EEG.) For this procedure, I would go without sleep, show up to my next appointment exhausted, have wires glued to my head, and sleep while my brain activity was be monitored. This sounded pretty easy in comparison to previous tests. When EEG time came around, I ended up sleeping like a baby during the procedure. I left the neurologist feeling confident that answers were coming, but uneasy about what the future might hold.
About a week after my test, the doctor called me to come in and discuss the EEG results. I was so anxious prior to the appointment but eager to gain clarity. The neurologist said my EEG demonstrated abnormal brain activity. He diagnosed me with Juvenile Myoclonic Epilepsy and told me I was having generalized seizures. I was prescribed anti-epileptic medication, then sent me home. When I reflect on it now, I think I was initially in shock and didn’t understand the seriousness of the diagnosis. How could I? I had never heard the word “epilepsy” before, with no understanding of what it was or what I should expect. I began taking my medication as instructed by the neurologist and hoped for the best.
A few weeks after receiving a diagnosis of epilepsy, I was offered a job across the country. I was scared, confused, and unsure of what to do next. Do I take the job in California using my newly obtained degree? Should I stay close to home in case my health deteriorates? What did this diagnosis mean in regards to my career goals? I lived 25 years of my life without knowing I had epilepsy, twelve of those years I lived with a misdiagnosis. I decided I wasn’t going to let the diagnosis control my life, and I would take the job in California. My boyfriend and I packed our things and relocated to the San Diego area.
I continued taking medication for 2.5 years, but soon the number of seizures while taking medication outnumbered the number of seizures without medication. I had to make a change! I began weaning off medication and started making major diet and lifestyle changes. I experienced positive results from the changes I made and began to see a decrease in my seizure activity. I researched anything and everything I could find related to epilepsy and attempted to connect with others living with the disorder through virtual and physical support groups.
Have you ever been to a support group or joined an online group? In my experience, they can be extremely depressing and attendees spend more time complaining rather than finding solutions to the challenges epilepsy can present. That type of environment proved to be unhealthy for me and only caused me to spiral further into the depression. I found myself constantly fighting despair. I felt isolated… there was nobody for me to talk to that truly understood how I felt or the challenges I was facing. I struggled for years to find people that I could relate to about my neurological disorder.
Nine years after receiving a diagnosis, I decided the epilepsy community needed a place where people could feel supported in a positive manner, with a focus on empowerment. I wanted a community of my own, so I knew others must have feel the same way. In March of 2017, I founded Life Elektrik - a nonprofit community of support, education, and advocacy for adults living with epilepsy.
I never gave up on my dreams of a career in the fashion industry… The skills and knowledge I’ve gained over the years, working in product development and design, have given me the confidence and tools needed to found Life Elektrik. Now, I encourage others to live their best lives despite having epilepsy. A diagnosis should not keep you from achieving your dreams. It may present unexpected challenges, but with the proper support from a positive community, you can achieve anything!