Experience with E. tells us that we should consider the recent death of Jett Travolta a tragedy… However, that same experience suggests that we have lost something more than a fellow sufferer.
There is little in the way of a “public face” for epilepsy. John and Kelly Travolta could do much for our community by simply admitting to epilepsy, rather than hiding from it. I confess, I am not a doctor, and I am not an epileptologist to be sure, but I do have decades of experience with this disorder.
We all know that several of our AEDs are used for multiple reasons beyond seizure control. We also know that seizures can come from other conditions, including heart problems. So, it would be unjust to simply act as if we know better about the Travolta death.
Still, the information is provocative and suggestive of an epilepsy disorder. So, the only conclusion any of us should reach is that we are hearing the absolute truth from the news reports or that there is a greater reason for the family to resist saying the word out loud.
Bigotry still exists in a pronounced fashion when it comes to E. Discrimination and stigma are elements each of us live with, and these things produce in all of us a “selective” kind of revelation of our disorder to the outside world.
I am of the hope that at some time the Travolta’s will acquiesce and offer whatever support they can give to our community. Preferably, a public acknowledgement of E. in their family, because it would help all of us.
It would encourage donations, it would encourage research, it would encourage others to speak out about epilepsy. I could help end the stigma, the discrimination, and the bigotry we live with.
Still, the family has to make their own decisions, come to their own resolve, and they should be afforded their own time to grieve without supposition or criticism.
Epilepsy kills. It can be a dangerous, deadly condition. Take your meds, see your doctors, and live the best way you can. Like you, I am in this struggle for the long haul.