January 28, 2009

Valentine's Day is Coming!!!

Greetings... I am in such a mood because Valentine's Day is coming! The color, the candy, the flirtatiousness... dizzyingly delightful. But is that all?

Nope. An interesting story is that St Valentine was the patron Saint of Epilepsy because he was supposedly a sufferer and took a keen interest in those who suffered from this affliction and  later, those who suffered this disease were said to be suffering from Valentine's sickness.

To the right are some of my favorite expressions of the day, if not my favorite candies. I am like many women, someone who really prefers chocolate... good quality chocolate!!! Still, these take me back to a much simpler time, days of elementary school angst.

My mama always wanted me to fit in well, so she was great at making certain I had plenty of these little boxed candies to include with my class Valentine cards. Giving them out was fun. Getting Valentines from other kids was such an act of inclusion to me. I felt like I fit in, like kids liked me, like someone cared. It always felt like such a grand day to me.

And then there were the cupcakes! Ah.... Seemed like someone's mother took time out to make cupcakes. Over the years, some of them were really good---the kind where the frosting stayed put and the cake was moist. Then, there were the others---cake too dry to eat, really, or scorched on the bottoms. Still, with the cupcakes came fruit punch and time away from the books to enjoy each other's company. A good day, as I recall.

Well, this is my Valentine's Wish for all of you: 
give a little, get a lot and enjoy it all! 
Be happy and love one another.

January 23, 2009

Epilepsy and A View of the Self...

I know that when I think of myself, I usually try to leave out epilepsy. I know it is a part of me, but I prefer to think of myself in more expansive ways that leave out the invisible marring epilepsy has left behind in me. 

To the right is a painting by Evelyn de Morgan. I love her work and like to include it because of the themes she enjoyed painting. This painting, "Luna" comes close to what I think of myself. Ethereal, healthy, protected, redheaded. No trace of E. visible!

Still, one has to account for the damage E. has done to one's psyche and so another painting below and to the left is a kind of grim example of how I feel having E., at least at times. Not always, just sometimes.

Often, I feel as though I have burdened my family, my friends and I am fearful I will burden strangers with my condition, as well. It makes me feel estranged from humanity, even freakish, and so the second, contrasting illustration is a kind of visual description of those feelings.

Still, if I feel like this, how do others feel about me when they know I have E. It is a question that should be asked, not for self-pitying reasons, but in order to get a better handle on the ways people percieve epilepsy and those of us who are disordered by it.

I know that many folks have a sense that E. somehow makes those of us with it degraded in some way. As if we are less because of it. As if we have been polluted by some evil.

There are others who  use the presence of E. as a means of acting violently against the individual with it. Parents who beat their children to cure them of E. are not uncommon. 

And many of us know how it feels to be refused housing or employment once our condition has been revealed. 

Some of this is fear... Some of this is cruelty, to be sure. Some of this kind of behavior is learned cultural response. E. has been around as long as there have been humans, so there has been plenty of time for people to develop a cultural reaction to its presence. 

But no matter what one's experiences have been, one must learn to cultivate a different self image. I like the self image of "Luna" and I cultivate it, and as I grow stronger, I am more and more able to affect others toward 
creating a better self image to go along with a stronger interior life. Then, the face I present to the world becomes stronger and better able to live in our world, even though I know there are still many who feel negatively toward my condition. 

I will not allow them to express that toward me. It has to stop somewhere.

January 15, 2009

Another comment

In light of the heartbreaking death of Jett Travolta due to a seizure, PARADE magazine president and CURE Board member Randy Siegel voices his sympathy for the Travolta family in his Chicago Tribune editorial, “Our Seizure Nightmare.” Randy also takes issue with the media’s recent coverage of the tragedy and of epilepsy—a misunderstood disease that affects more than three million Americans, including his daughter.

Please read Randy’s editorial below, and feel free to forward it to friends, family, and coworkers.


Our Seizure Nightmare

By Randolph Siegel

Published in the January 13, 2009 Chicago Tribune

As a media executive and father of a child whose life has been derailed by uncontrolled seizures, I watched the Jett Travolta tragedy unfold with particular sadness. The Travolta family deserved much better from the media, especially those invasive and sensationalistic TV shows, Web sites and magazines whose feeding frenzy was nothing short of despicable. Yes, even movie stars deserve a zone of privacy when they are in mourning.

The media also wasted an opportunity to educate our country about the relationship between seizures and epilepsy, a devastating neurological disease characterized by abnormal brain activity and recurring seizures, which affects 1 out of every 100 people.  That's 3 million Americans and 50 million men, women and children worldwide—more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined. While some people with epilepsy can lead normal lives and are able to achieve seizure control thanks to effective drugs or brain surgery, most patients do not and suffer debilitating side effects from all the seizures and medications.

Uncontrolled seizures wreak havoc on the brain, causing depression, developmental delays and even death. An estimated 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy, and other seizure-related causes such as drowning. That's more funerals from epilepsy than those caused by other terrible diseases such as breast cancer, nearly 140 per day.

In this era of medical breakthroughs, doctors and researchers still struggle to understand what causes seizures. In two-thirds of patients with epilepsy, the cause is never known. Many children with autism also suffer from epilepsy. Thousands of U.S. soldiers are developing epilepsy after suffering traumatic brain injuries on the battlefields of Iraq and Afghanistan. Despite these numbers and all the lives at stake, epilepsy research is woefully underfunded and the search for a cure has been stymied.

Living with seizures is cruel and unusual punishment for patients and their families, no matter how old they are or how famous they might be. One never knows when the next seizure will strike and whether it will be damaging or even fatal. And for a parent, it is especially heartbreaking.

Our 12-year-old daughter has epilepsy and averages about 1,000 seizures a year. Every night, when we tuck Becca into bed, we hope and pray she will awake the following morning and that one day our nightmare will be over and a cure will have been discovered—for her sake and others, and in honor of those who were not so fortunate.

CURE epilepsy

Randolph Siegel is president and publisher of Parade Publications and a member of the board of CURE, Citizens United for Research in Epilepsy.

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.