March 26 - Purple Day

One of my earliest memories is being about 4 or 5 years old and looking at the 'dolls of the world' display case at Alberta Children's Hospital in Calgary, AB.  I was amazed to see all the dolls dressed in the traditional dress of whatever country they came from - perhaps this is where my love of all things cultural and exotic comes from.  My mom would show me the dolls each time we went there, but I don't know how many times I had already been there, or ever went again.  I do know that Alberta Children's Hospital impacted me enough to actually go back there as an adult and volunteer.  That's a bit off topic, and for another day though.

I am at the children's hospital for an E.E.G. (Electroencephalography), which measures electrical brain activity. This is the standard test that diagnoses Epilepsy, and is also used to monitor Epileptic patients.  At that point in time, I am sure I have already had one or two, but I really have no idea.  I do not view myself as sick, or living with a neurological disorder.

My first seizure was apparently at about age 18 months.  I was sick with a cold or flu, and had a high fever.  All I know was that my mom came to my crib and I was seizing.  I was officially diagnosed with Epilepsy at age 3 years, which, back then (1982) was pretty young to have such a diagnosis.  I suppose I must have had more seizures in between the ages of 18 months and 3 years, but I have never asked my parents if that was the case.  


I do recall my neurologist at the Alberta Children's Hospital showing me the results of my EEG.  It made no sense to me, but I remember thinking he was quite happy to show me this drawing his machine made of squiggly lines.  Back then, EEGs were not done via the fancy computer systems they have now - they were done using these needles that squiggled all over a looooooooooooong sheet of computer paper.  Again, having no idea I was different than anyone else, I really had no idea why this doctor was so happy to explain it all to me. Looking back, it seems like he must have been a man who was passionate about his profession and good on him for trying to educate a little girl about a disorder she had no idea about.

I've lived with Epilepsy my entire life.  People close to me know, but many people do not.  I have Juvenile Myclonic Epilepsy, which means I have two types of seizures - the usual stereotypical grand mal/tonic clonic and some smaller myclonic seizures.  The myclonic seizures look like my arm or hand is jerking and most people are not even aware of it when it happens. I usually just drop what is in my hand.  


I have been seizure free for over 8 years and function very well.  I have adapted my life to accommodate my disorder, and am lucky that the type of epilepsy I have is very easy to control with medications etc.  I however, DO still have Epilepsy - the doctors made sure to give me another EEG a few years ago which indicated abnormal brain waves aka epilepsy.

I decided to dedicate this post to Epilepsy because on March 26 it was Purple Day.  Purple day is an initiative started by a little girl, back east, who is living with Epilepsy.  She felt there was too much stigma about Epilepsy and wanted more public awareness. March 26 came and went.  I'm still living in fear of having a seizure in public. Not because my epilepsy is uncontrolled, but it's the 'what if someone sees me'.  I HAVE seen people having seizures in public, and HAVE witnessed people walk around or even over the person, not stopping to help.  
I also have been raised in this society where movies and tv shows portray Epilepsy as either a evil disorder associated with demons, or some sort of ignorant joke.  As a result, I don't feel safe "going public" as a person living with Epilepsy.  I fear judgement.  I fear someone would assume I could not care for my daughters (I have heard this from close friends as well - 'how do you safely care for a baby if you have Epilepsy?"), and I fear having to answer all the stupid questions that come along with talking to people about seizures. I AM definitely open to talking about Epilepsy and life with it, however, I feel sometimes people just 'allow' themselves to be ignorant about this disorder.  People don't ask why someone with cerebral palsy walks differently, and are usually fairly sensitive about the topic, yet they will ask me about swallowing my tongue. By the way, no you can't swallow your tongue.....it's attached to your mouth. 


To try to support purple day, for this new generation growing up with Epilepsy, I did ask my boyfriend to do something for me.  He's a loving, very supportive guy, don't get me wrong, but he even failed me in this area that is very personal and sensitive to me.  He works for a local radio station and is the programming manager.  I asked him if he had any radio ads for Purple day, as his station regularly does public service announcements.  He said he wasn't sure, but likely he did.  Being the person I am, I googled for one, and found one he could just download and emailed it to him. He didn't pick up on it, and I am too sensitive about the topic to get into it, so I dropped it. I felt it was almost an insult he didn't quite get why I wanted him to do that. I was hurt. 

So, here's my 'out' to try to create more awareness about life with Epilepsy.  We need to stop the stigma, we need to stop allowing tv/movies to portray seizures in such a horrific way, and we need to start talking about Epilepsy more.  I am trying.  I am especially trying whenever I see a young child recently diagnosed, or perhaps, just learning to cope with Epilepsy as I once did.  I hope that one day the fear surrounding this disorder ends.