At 19 months old, I was put on a medication called phenobarbital, which was “older than Moses.”
My first cognizant memory of being on medication is when my friends asked me, “what does it taste like?” “Cherry.” And so, my fate was sealed. I’d always be the first one asleep at every sleepover.
The very hours I was supposed to be awake, I found myself sleepwalking through life.
“And the seasons they go round and round…”*
Fast forward to middle school, where Aaron Seglin became my voice, knew the questions I wanted to ask and did. He was my clairvoyant.
“”And the seasons they go round and round
And the painted ponies go up and down
We’re captive on the carousel of time”*
“The wonder years,” also known as adolescence, is when I learned some hard-won wisdom. I learned who my true friends were. If I met someone, and they could see beyond the superficial, I knew I had a real friend.
“We’re captive on the carousel of time
We can’t return we can only look
Behind from where we came”*
Graduation day, 1984.
There I was tripping across the stage because I was a natural born klutz. To me, it felt like a side effect of the epilepsy, not to mention I also have cerebral palsy.
By 1997, I was still a college student, being weaned off phenobarbital and onto another medication. I had eight grand mal seizures in as many months. I left college soon after that and started on the journey of finding the right “medication cocktail.” I’d felt like a senior citizen for so long and wanted to feel like a woman in my twenties.
April 3, 1999. WHAM! My world as I knew it was gone. We buried my father three days later. Any neurologist will tell you that possible triggers can be lack of sleep and stress. Check and double check. I had a seizure a few days later while we were sitting shiva. One more carousel of time that I never wanted to ride.
Years passed. I had started to compile some poetry that would eventually become my debut poetic autobiography. That routine helped me keep my emotional balance.
A few years later, I remember having to go to my cousin’s college graduation. All I remember is having to “be asleep” by 6 pm and waking up at 5 am so that I could get myself ready for the flight while maintaining my sleep schedule.
I was back east for a week and was very lucky that I didn’t have a seizure. Unfortunately, I had to keep looking over my shoulder for the next seizure. That became exhausting. Would it happen today, tomorrow, a week from now? That is the kind of exhaustion that I could never sleep off.
By 2003, I was a college student again. This time was different. I spoke to my doctor. They said: “Your seizures will happen twice a year, during midterms and finals.” And that’s essentially what happened.
By 2005, I had not only graduated with a BA in Literature and Communications, but also a degree in self-care.
Ten years pass, and I’m older. My seizures are starting to come more frequently. Unfortunately, my seizures are also getting more complicated because I’m in perimenopause.
My neurologist at USC has me keep a seizure journal on my calendar, but I couldn’t tell the effects of one medication from the other. The seizure counts go “up and down, like the painted ponies.”* Much like my energy, my inspiration is stolen from me by epilepsy.
Unfortunately, depression goes hand in hand with epilepsy. Not being able to write or journal did not make anything easier, especially when I’m at a point in my life where I don’t have a sense of peace.
A couple of times, I’ve asked my neurologist about brain surgery. Her response? “It doesn’t make any sense for you.”
By 2017, I was no longer at USC and was working with a wonderful neurologist at UCLA. One of the first things we talked about in those early meetings was: “I don’t want any more medication changes. If we’re going to do anything, it has to be more radical.” After looking at the medications that I’ve been on, my neurologist agrees.
In 2019, the debate of whether deep brain stimulation is better than brain surgery starts. For me, the debate is over. I want the brain surgery. My family agrees. More than anything, I want peace. I want off the seizure carousel.
August 25, 2020. I have brain surgery. The doctor was able to take out just the part of my brain which controls the seizures, then off to pathology, where that part of my brain will be studied by future neurologists.
September 6, 2020 was my last seizure. I’m off the carousel.
*Quote from The Circle Game by Joni Mitchell