"You know, her husband died?"

I stopped to talk to someone briefly and as I walked away I heard her say to a person next to her "you know, her husband died?"  My feet faltered a bit, but I didn't look back and I didn't stop moving.  Not that what she said was wrong, it's true.  It's just I don't think of people talking about me.

And that isn't to say that you can't talk about me.  In some ways I want you to.  If you talk about me, talk about Jeff, talk about how he died.  Tell people about SUDEP, tell people that seizures can be fatal.

In the month from Jeff's first seizure to the one that took his life we talked non-stop about Jeff's seizure to everyone.  We got a fair amount of feedback too:

"my mother has epilepsy"

"my college roommate has epilepsy"

Not one person had a story where someone died.  Not one person told us that seizures could be fatal (other than driving accidents). 

There were over 600 people at Jeff's funeral.  How is it that out of 600 people NO ONE knew he could die from a seizure?  How is it, I didn't know?  Even the two people closest to us, our mothers -- both nurses -- had never heard of this condition.  Why is this a secret?

Unfortunately, in so many things in life, you have to be your own advocate.  Knowledge is power.  Knowledge is life saving.  If you talk about me, talk about Jeff.  Tell people how he died.  Tell people about SUDEP so that they can arm themselves with knowledge.  So that they are not blindsided by death the way my family was.

Sincerely,

Jeff's Widow