I live with one of the most unpredictable conditions in the medical world – Epilepsy. I’ve encountered four stages over the last thirty years attempting to live it: Avoidance, Denial, Rebellion and finally, finally, actually not fully there yet but….Acceptance.
When I was fourteen, my parents got divorced. Back in the 80’s this wasn’t a very common thing in the bubble world in which I was living. I think I knew one other person who had been through this out of all the kids at school. It was unusual, there was no structure in place, no protocols, no real template of assistance to go with this in the outside world. So I pushed my feelings deep inside and didn’t deal with it. In return, I started to show symptoms of emotional suppression in the form of “head hiccups”. Head hiccups are what I used to call electrical brain malfunction. I would get up from bed in the morning, head to the shower and something as minor as the temperature changing in the water would cause my brain to spark. In that split second, I would drop whatever I was holding. Sometimes I would even drop to the floor until the brain circuits reconnected. It caused quite a big noise at times. I always managed to talk my way out of it to my enquiring family by saying that “I’m fine” or that I had “dropped the shampoo bottle” or various other things that were in the shower.
I was afraid. I felt isolated and alone. So I created a fantasy super hero, “Electro Girl” to help me accept my neurologically electrical flaws. Essentially this was the beginning of hiding a part of myself for four years. The reason? I never wanted to hear the words, “no, you can’t.”
I was a teenager. What teenager wants to hear “no”? So in my mind the best thing to do was hide my symptoms from family and friends for as long as I could. I actually hoped it would go away by itself. I didn’t want to believe there was anything wrong with me. If I told people I was experiencing these “head hiccups”, I thought they would treat me differently.
At age eighteen, my mum saw me drop to the floor in the kitchen and the jig was up. For the next seven years I was immersed in the medical world undergoing tests including EEG’s, MRI’s, Cat scans, blood tests. I became a testing ground for the doctors who were experimenting with which pharmaceuticals would be best to control the symptoms.
I was formally diagnosed at nineteen and told I’d have to live a “quiet life”. I was mortified. My family and friends didn’t know how to deal with me either as this was new for everyone. Some of the comments I heard from loved ones were:
“Big deal, it’s just a diagnosis. It doesn’t define you.”
“Maybe you shouldn’t be going to that music festival, just in case.”
“Ooo be careful, should you really be driving?”
“The world is your oyster. Do whatever you want to do.”
Do what I want to do…hmmmm…I like the sound of that! I want to be a pilot.
“Umm, sorry, but that’s not allowed if you have Epilepsy. You need to be perfect and you’re a tad flawed.”
Alright then, I want to go scuba diving on the Great Barrier Reef.
“Yeah about that; apologies, but you can’t so that either. Your brain is too delicate and unpredictable and you may implode under the water.”
Ok, I want to skydive. OMG, that is on my bucket list, I am totally doing it.
“Nope, that one is off the list. A seizure at 11,000 feet isn’t covered by our insurance. Why don’t you play the tambourine… that’s fun!”
As I got older, the seizures became worse. It culminated in Grand Mal seizures. I have experienced close to three hundred of these in the last twenty six years.
One of the biggest struggles I had around being diagnosed was hearing that I had to be on medication for the rest of my life. I kicked and screamed LOUDLY. Two thirds of the western population achieve seizure control on meds whilst one third are drug resistant. There are a two reasons for this:
1) There are over 30 different types of seizures;
2) Anti-Epileptic Drugs are not designed for Epilepsy. The medication’s sole purpose for use in Epilepsy patients is just to stop the symptoms. At the same time, a plethora of side effects result from the body’s reactions to the drugs.
Finally, at twenty eight, after being on meds for seven years, I reached rock bottom. I realised the terrible side effects were just as bad as having the actual seizures. I needed to know why I had Epilepsy? Why my brain was electrically misfiring? The only way I was going to find this out was to take myself off all the medication (against my doctor’s advice), research more about the brain and how it works and tackle the beast inside my head.
And so I became my own living scientific experiment instead of one controlled by the industry. First thing on my radar was to start a journal about what was occurring during the times outside of the seizures. For months I recorded what I ate, who I saw, if I drank alcohol, if I took drugs, how late I stayed out, whether I had enough sleep, was I getting my period, who I had sex with, what the outcome of those sexual experiences were, what supplements was I using, what medications was I taking.
When I had all the evidence in front of me, I realised there was a common pattern unfolding, a pattern which indicated my condition was more than an isolated “wiring” issue. I tried every self-help modality that was available because I was desperate for someone or something to heal me – a classic example of not taking personal responsibility btw.
I kept thinking the healing was going to come from other people. So I’d invest my time and money into someone else and always be disappointed the next time I had a seizure. My optimism was high though and I was determined, (some might say stupid), to persist with my experiment, get to the bottom of my dysfunctional brain and stop the seizures naturally.
It took me a long time to accept that I was associated with this condition. I hid, I planned exit strategies so I could have a seizure on my own instead of in public. I felt vulnerable and embarrassed about letting people know and letting them see me in this state as I had no control over it.
Through self-observation and really getting to know my triggers, I realised my electrical brain is linked to my emotional state.
This year, (2017) I wrote and published an autobiography called ‘Electro girl’. I want to empower people to manage their condition holistically and not to accept that there is only one road to health via the medical system. Any condition can be managed, maybe not healed completely in all cases, but managed, so that life isn’t battling against it but flowing with it instead. It’s an experiment so why not be in the driver’s seat of the experiment instead of being a passenger. We have one life, so go deep inside and learn more about your body and brain in order to make it count.
(If you are interested to know more and buy the book and read more blogs you can find me on my website www.electrogirl.com.au)