Lainie Chait was diagnosed with epilepsy in 1991 at the age of 19. At the time of diagnosis, there were three roads to go down - avoidance, acceptance or rebellion. Avoidance was her first choice. Falling in the shower, brain jerks and muscle twitches when she was 14 was the beginning of something 'not quite right' about her early teenage years. She hid these symptoms from family and friends for three years in the hope that they were just ‘growing pains’.
As she started reaching the age of independence (18 in Australia) and started to drink, stay up late and go out partying, these ‘growing pains’ turned into a seizure condition that could no longer be ignored. 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 and 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 carried with it an enormous amount of embarrassment and shame. She constantly felt like a failure after each of the 250+ Grand Mal seizures she endured over 25 years.
But 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 and research it, live it, feel it and document it for herself.
She did this much to the horror of her doctors, friends and family. 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. She felt that the medical industry wasn’t able to look at her on a holistic level. By this she meant physically, emotionally, mentally and physiologically and so she embarked on her own research to get a complete diagnosis that she was satisfied with.
Lainie Chait has been seizure free for the past 2.5 years. It took 25 years of life experience to get to the point where she was able to share her story, both painful and pleasant. She simply 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.
