What Does Purple Day Mean to You?

This was a question posted by SUDEPaware, http://www.sudepaware.org/.  I didn't respond to them because for the week leading up to 3/26 I didn't know.  Now I do.

Purple Day, for epilpesy awareness, makes me feel left out.  Jeff didn't have epilpesy (maybe).  Who knows?  He only had two seizures.  Maybe if he'd survived the second one he would have received this diagnosis, maybe not.  However, Jeff died from an epilpesy-related cause so I have some affiliation with epilepsy.  I just don't feel included.

I don't have years of epilepsy stories, experiences with doctors, tests, etc.  I don't feel linked enough to do the Epilepsy walk in April.  Yet, I have a close kinship to those who have lost a loved one to SUDEP as I have.  Jeff may not have had epilepsy but he still died from a seizure so I am latching onto, tentatively, Purple Day.

My children and I wore our purple "Team Jeff" shirt from the Joshua Newman 5k (http://thenewmans.blogspot.com/2012/11/after-months-of-planning-by-so-many.html).  I changed my facebook profile picture and posted two pictures about seizures and purple day.  Even though it was also "Marraige Equality" day, a cause I wholeheartedly support, I had to choose one and it was epilepsy.

This is the first year I am aware that 3/26 is purple day.  I'm not surprised that it escaped me last year, it's exactly one month after Jeff's death.  I don't know that I was functioning with any part of my brain at that point.  Now, 13 months later, I can recognize that there is a bigger picture. 

This isn't just about Jeff, this is about everyone who has lost a loved one due to seizures either through SUDEP or other means.  We are all hurting in our own ways.

I knew that epilepsy was a medical condition, I did not know that there was a "stigma" attached to it.  Nor did I know that it could be fatal.  What I can't condone is that a doctor made a choice about what I should or should not know about this condition and that choice directly lead to Jeff's death.

Purple day is here to remind us that epilepsy is a medical condition that can often, but not always, be maintained through medication.  It can also be fatal.  Never underestimate the power of any medical condition to rob you of your life.  Educate yourself if you or a loved one has seizures.  Learn about SUDEP, learn the risk factors, learn about sleep monitors, try to protect yourself from a loss like mine. 

If you don't, you will never forgive yourself.

Sincerely,

Jeff's Wife