Caroline was 26, living with her friend Lindsay in a house within walking distance from downtown Oakville.  She had a new job, great friends and money to travel.  She was incredibly happy and really enjoying all life had to offer. Out of the blue Valerie phoned me at work to tell me that Caroline had collapsed in the train station and was at Mount Sinai Hospital, I was concerned, worried even, and wondering what could have happened.  We didn’t find out then, one reason being that the person who called 911 did not stay around to give a statement to the paramedics and there was no indication of what could have happened.  It was surmised that she was over-tired, hadn’t eaten breakfast and must have fainted.  In any case I don’t think any of us considered a serious ailment.  We had never had anything go terribly wrong with our health; we didn’t have a family history of any disease and so did not think along those lines.

The next time was different.  Valerie was there to observe.  It was Christmas Eve and Caroline had a seizure in the foyer of her father’s apartment building.  Subsequently, Valerie accompanied her to the neurologist and they were told that Caroline had epilepsy.   How could that be?   She was given medication that was supposed to prevent seizures.  Still, none of us realized the severity of this diagnosis.   I had heard of epilepsy and knew that there was medication to control seizures so I assumed that was all it would take for her to continue with her life as normal.  I had a lot of questions but whenever I wanted to discuss epilepsy with Caroline she would get angry and refuse.   So I chose the path of least resistance and just enjoyed her when I saw her.   I made a point of visiting her weekly, going to yoga classes, and making sure that I provided her with at least one healthy meal per visit.  While as a mother I was definitely concerned, I truly had no idea what the implications of epilepsy were, none of us did.

Caroline’s seizures were not controlled by medication.  She continued to have seizures — maybe 3 or 4 a year — but again, I did not think that was so terrible as I had heard of people having seizures every day.  Her Doctor continued to try new medications with no change to the frequency of her seizures, just in the hideous side effects.  I did worry about her when she traveled and expressed my concern, especially when she traveled to Africa for an extended holiday, but she always told me that she was with people who knew her situation, and would be very careful.   Again, this helped assuage my concerns because after all, worst-case scenario, she would have a seizure and seek the necessary medical attention.

I never heard of SUDEP until long after her death. Then I started looking for information and found very little.  What I did find was very conflicting information.  I guess I want the families of people with epilepsy to be more informed than I was.  That is why this foundation is so important to me, I can’t turn the back the clock, but I can help change the present and the future for those living with epilepsy and their families.

Caroline had a magnet on her fridge – I remember asking about it after she died – I asked if I could have it – to remember to try to live my life the way Caroline lived hers.

live with intention
walk to the edge
listen hard
practice wellness
play with abandon
laugh
choose with no regret
continue to learn
appreciate your friends
do what you love
live as if this is all there is

(Mary Anne Radmacher)