This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30, 2016. Follow along! https://livingwellwithepilepsy.com/
I have wanted to write a book about my journey with epilepsy for over 15 years now and in my mind, it was always going to be written when I had cured myself of this dreadful brain dysfunction that was playing with my imperfectly perfect world. I kept trying new things and experimenting with a myriad of modalities external to myself like alternative therapies, pharmaceuticals, counselling and diet, all for the end result which was going to be my name in lights saying “Lainie Chait the amazing woman that beat all the odds and healed herself of Epilepsy without medical intervention”. To me, this end result encompassed me enough to put on my blinkers for 16 years and go on a journey to achieve this, no matter what the sacrifice, who I caused grief to and the price it had on my psychological health along the way not to mention that massive barrier I erected around my heart to protect myself!
A month ago, I reached the pinnacle point where my book was written, the character’s costume was finished and was a work of art, the picture for the front cover was minutes away from happening and my goals for the potential future of Electro Girl were written down on paper. The time had come for me to step up to the plate after all these years in order to make this puppy fly, but what happens…….I choke. I put on the costume I had made for the prime reason of bringing Electro Girl to life and as soon as I had it on, I stood in front of the photographer who was there to capture the money shot for the cover of my book and I lost all my strength. I didn’t know how to stand tall as Electro Girl, the much talked about super hero because deep down, I knew that I didn’t feel like one.
I have spent 16 years of my life making a stand to heal myself without medication whilst researching and experimenting with other options, taking responsibility for my mental and physical health and trying to maintain optimism whilst coming up again and again against brick walls in the form of continuing seizures. All this sounds great on paper, but in the meantime at this precise moment of writing, as proud as I feel for so many achievements along the way, I also feel like I have let myself down on so many levels. By the way, I don’t see this as bad to be disappointed in myself, it’s honest!
My vision was that Electro Girl would be my way of contributing back to the world with a strong message of how to empower yourself after a diagnosis like Epilepsy, but in retrospect, that wasn’t my strength at all. I lived for 25 years under the umbrella of empowerment but really I was in denial, unacceptance, embarrassment, self-hatred, avoidance, rebellion and illusion. Pretty powerful things to create when all this time I’ve kept maintaining that I’m not creative. My ego is slightly damaged right now because I invested so much time, effort and energy into my health story, almost like an OCD and I was adamant I was going to cure myself without medicinal intervention. It became a vision, a life goal so much so that I guess I am still struggling with a slight mental health issue around it because even though I’m now over 2 years seizure free because of – even writing the word made me hesitate – medicine, I have a niggling brain fart in the back of my head as I feel like I have nothing to offer the wider public in my message, as what I set out to do, I couldn’t do the way I wanted to, which was to be off all meds to attain a seizure free existence.
I sit here pondering what I would say now with a different vision, one that incorporates the fact I take medication to control my overly electrical brain, one that would be inspiring to people and to be honest, it is hard as I have to first come to terms with it, in order to find the message. What I keep coming back to is, how can I inspire other people to succeed on their health journey’s when I’ve had so much ego attached to mine, so much stubbornness, defiance, will to succeed and then it dawned on me, are these actually the traits you need in order to turn your life around and act to change things about yourself? (minus the ego, that has to be left behind sorry).
My passion to make a clear statement about not handing over all of your power to the doctors was strong and my determination to succeed, so I know these traits are within me and a good message to send out, however living for all these years without the core quality of self-acceptance, these exceptional traits were instead, used to assist me to lie, manipulate and use basic survival instincts. These are super hero qualities as well at times for people but they are not the ones I feel like I need anymore or that I want to encourage others to use in order to fight for their freedom. Freedom is within us all, as is the ability to love ourselves without compromise.
What I’m about to share next might sound really out there to some and to others, you may relate a little or a lot but I feel like I need to share this. I have a feeling that on some level, the reason it took so long to get to this point, is that I didn’t want to get better even though this is what I seemed to be actively seeking for 16 years. My belief systems were transparently ruling my life and my decisions. By living under the banner of having Epilepsy and showing the courage to continue seeking a solution whilst still having seizures, I was getting love and attention from people who were supporting my mission, wanting to help me out, gifting me kindness and warmth and food and a bed and opportunities and encouraging me to keep going. I made no room for people to talk me out of my mission to succeed with my cure. My friends and family were caught between a rock and a hard place. They were either too afraid to have a say for fear of alienating me, or they just decided that I would come around eventually, at some stage. What else could they do??
As I looked at the initial pictures of myself that the photographer sent through in my beautiful sparkly purple super hero outfit, I finally saw with my own eyes my vulnerability that I have been trying to hide from everyone for all these years. Admittedly, I didn’t like what I saw at first because I didn’t see strength, I saw weakness and so reacted by having a meltdown which included vodka, chocolate and contemplation, lots of it. Did I make this journey about desperately wanting to cure myself an identity of strength to cover up never wanting to feel vulnerable? Ah the irony! Epilepsy is a condition that is all about being vulnerable and it seems the only time I allowed people to see me this way was when I was convulsing at their feet on the floor. At least I was unconscious at the time so I could somehow write it off like it didn’t happen as I wasn’t “there”.
I believe the super hero is really me, as I am right now, the woman writing these words with the outfit removed, vulnerability on my sleeve and my identity in check after all these years. I must say, even after writing this end bit and being honest about all of this, I feel more like a super hero than ever before. I feel extremely blessed that I had a chance to have this reflection and share it with you before the book went to print. The story can now be put to rest!
Freeing the attention fixed on our secrets empowers us to direct change and reshape lives. Habits and addictions that held us powerless become manageable; illnesses and upsets are healed; trusting relationships can be established – just by becoming honest.