Lainie Chait was diagnosed with epilepsy in 1991 at age 19. At the time of diagnosis, there were three roads to go down – avoidance, acceptance or rebellion. Avoidance was the first choice. Falling in the shower, brain jerks and muscle twitches at age 14 was the beginning of something a bit NQR about her early teenage years. She hid these symptoms from family and friends for three years in the hope that it was just a form of ‘growing pains’. As she started reaching the age of independence (18 in Australia) 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. Eventually doctors, diagnoses and medicines were brought into the equation.
She tried acceptance but at the time it wasn’t the right fit as the very thought of taming down her young, fun life in order to replace it with medicine, early nights and mature personal decisions was just too hard to fathom.
Rebellion then became her main focus and she achieved this by partying, staying up late and ignoring the triggers. This mindset meant that she was carrying an enormous amount of embarrassment and shame and constantly feeling like a failure after each and every of the 250+ Grand Mal seizures she endured in 25 years.
She wasn’t just rebelling against a diagnosis, she 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. She needed to know why she had epilepsy and the only way she was going to find this out was to take herself off all the meds to the horror of her doctor and family and research it, live it, feel it and document it for herself. In order to do this, she went on a journey to get to know her brain and what makes it tick and glitch. The journey was about finding out just how much control she did and didn’t have over her seizures.
The path of prescription medication and the side effects were just as bad as having the actual seizures, sometimes worse and the medical industry wasn’t able to look at her on a holistic level. By this she means physically, emotionally, mentally and physiologically and so she embarked on a journey to do her own research in place of where the medical industry lacked the avenues to get a complete diagnoses that she was satisfied with.
She is now 2.5 years seizure free and it has taken 25 years of life experience to get to this point where she is able to share her story both painful and pleasant. She embarked on a journey to do her own research in place of where the medical industry lacked the avenues to get a complete diagnoses that she was satisfied with. She researched the intangible symptoms behind why she was having seizures as she wasn’t going to accept that the physical symptoms being displayed was a fate to live with for the rest of her life.
The reality is that she could have come to these conclusions 20 years ago and taken a much more mature approach to herself, her condition and the part she had played in the world and the outcome might have had a lot less suffering in it, but she wouldn’t have learnt what a powerful, resilient, focused woman she was when something as important as your own life and future is nearly taken from you due to misdiagnosis and wrong medications.