In keeping with sharing life stories of those with epilepsy, this week I introduce Lainie Chait. She is yet another tower of strength who has powered through this condition! I feel extremely fortunate to be connected with her as not only does she have a similar outlook as I do when it comes to epilepsy, I have learned so much from her. Do go and visit her website to find out more, learn about the alternative aspects of life that have assisted her with epilepsy and find out about her forthcoming book that she has written which is due out soon.
Hi there, my name is Lainie, I am 44 years old and I was diagnosed with Epilepsy in 1991 at age 19. At the time of diagnoses, there were three roads to go down with this news. Avoidance, rebellion or acceptance. Avoidance was the first choice and I did this really well I might add. Falling in the shower, brain jerks and muscle twitches at age 14 was the beginning of something that was a bit NQR about my early teenage years. I hid these symptoms from family and friends for 3 years in the hope that it was just a form of ‘growing pains’. Complete silence, I didn’t tell a soul. As I started reaching the age of independence which in Australia is 18 and started to drink and enjoy staying up late and partying, these‘growing pains’ turned into symptoms of having a seizure condition that couldn’t be ignored anymore and eventually doctors, diagnoses and medicines were brought into the equation.
I endured the path of prescription medication for 8 years and was on one or 2 different types of drugs at the same time. Back in the 90’s there were very few AED’s that you could choose from and they were all pretty questionable. All experimental really and the side effects were just as bad as having the actual seizures, sometimes worse. At that time, the medical industry wasn’t and to this day still isn’t, able to look at me on a holistic level. By this I mean physically, emotionally, mentally and physiologically and so I embarked on a journey to do my own research in place of where the medical industry lacked the avenues to get complete diagnoses that I was satisfied with. I researched the intangible symptoms behind why I was having seizures as I wasn’t going to accept that the physical symptoms being displayed was my fate to live with for the rest of my life.
I tried acceptance but at the time it wasn’t the right fit as the very thought of taming down my young, fun life in order to replace it with medicine and early nights was just too hard to fathom. Rebellion then became the main focus. At different stages of my life I rebelled by partying and staying up late, hiding my affliction from people so they wouldn’t judge me and sticking my middle fingers up to the medical industry so I could go off and prove to myself that there are other ways of finding health without lots of pills to swallow. The most common form of rebelling though, was against myself and this played out by not accepting who I was which meant I was always trying to “heal” myself, instead of finding ways to live with having seizures and manage them. This mindset meant that I was carrying an enormous amount of embarrassment and shame and constantly feeling like a failure after every seizure as the evidence was in my face each time that I hadn’t “cured” myself.
It has taken 25 years of life experience to get to this point where I am able to share my story both painful and pleasant. The story is, I wasn’t just rebelling against a diagnosis, I was rebelling against a system that has the capacity to make you feel better but at a price that also keeps you in a place of perpetual illness and fear. I needed to know why I had Epilepsy and the only way I was going to find this out was to take myself of all the meds to the horror of my doctor and family and research it, live it, feel it and document it for myself. In order to do this, I went on a journey to get to know my brain and what makes it tick and glitch. I would have drowned in their “idiopathic tonic clonic” diagnoses all those years ago and handed my brain and my body over to the doctors completely if I didn’t have a niggling feeling in my gut and heart that I may actually have as much power over this situation as the doctors and the medicine. The journey was about finding out just how much control I did and didn’t have over my seizures. This is itself is a crazy concept as we think that the seizures have control over us but in my circumstance, I have come to know my triggers well and have changed my diet, mindset and have gone on a small amount of medicine again. To me this is the definition of holistic. Part meds, part inner knowledge of your triggers and part lifestyle choices
I have written a book about my journey with Epilepsy and I have called it Electro Girl. It will be coming out sometime this year and is a raw description of my life over the years from denial to acceptance in the hope that I can create more awareness and inspire others to start thinking for themselves and living outside the square in relation to their treatment and management.
Epilepsy is a scary, isolating and fear inducing condition but it doesn’t have to be and it’s time people knew more about the brain and how we have more control over it than we are allowed to believe.
The reality is that I could have come to these conclusions 20 years ago and taken a much more mature approach to myself, my condition and the part I have played in the world and the outcome might have had a lot less suffering in it, but I wouldn’t have learnt what a powerful, resilient, focused woman I am when something as important as your own life and future is nearly taken from you.
Thanks for reading and being you!!
My Facebook page is Electro Girl and my website which is under construction is http://www.electrogirl.com.au
I also have a great blog on a herbal site that covers some great herbs that help restore the brain pathways and are good for stress related to seizures
Be kind to yourselves and have faith in you!!
Enjoy the journey