January 6, 2009

Life, Death and the Long Haul with E.

To the right is a painting by Evelyn de Morgan from 1916. It is her commentary of Death on the battlefield. Double-click the image to see it enlarged...

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.

1 comment:

Adrienne said...

Paula, I lost my brother to SUDEP (Sudden Unexpected, Unexplained Death due to Epilepsy) about a week before the Travoltas' son passed away. I try to advocate and bring awareness to Epilepsy and think it is important that others do the same. I agree with you that Epilepsy needs a face to become more publicly recognized. I do not think that people with Epilepsy bring any sort of burden on society but that society burdens those living with Epilepsy by not knowing and being more understanding to those who live with Epilepsy. I find it so unfortunate that people are discriminated against and not treated fairly for something they were so often born into. My brother was kicked off buses, kicked out of college and fired from jobs because of peoples' lack of compassion for something that was completely out of his control. I don't know what we can do to bring awareness and compassion to those living with Epilepsy, but if you find a way, I will support you 100%. The best way I know to reach American society is through the media. So, after the Travoltas' tragedy I wrote to Oprah with my story and about the importance of seizing the moment to shed light and bring awareness; but to no avail. Thank you for all you do to bring awareness and compassion! I blogged for a couple weeks after my brother's death and found it helped me. (blogspot.inmemoryofjayveynaiii.com) I hope to find the strength to continue to blog about him and his experiences through my eyes. Right now it's just too difficult. Again, thank you and keep up the wonderful work!
Adrienne Veyna