Today is an important day

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Today is kind of big deal. It is purple day, a day of world recognition of epilepsy. As you know from my previous posts about epilepsy, I don’t feel like it is really my place to go into the facts about epilepsy. You can google that stuff. What I want you, dear readers, to understand from me about epilepsy is what it means to love someone who has epilepsy…to watch the dearest, most beloved person in your life experience a seizure…and, as a result, why it is so important to raise awareness and to insist on funding research into epilepsy.

But today is Purple Day…so today is different.

According to the Epilepsy Association of Utah, as far as funding for disease research goes, epilepsy research is woefully under funded. The NIH funds epilepsy at around $0.82 per patient. Compare this to AIDS funding $3419.00 per patient, STDs at $1805.00 per patient, Smoking illnesses at $150.00 per patient. Considering that one in ten people will experience a seizure in their lifetime and 1 in 26 will develop epilepsy, this research funding is laughable.

Many people do not understand that seizures can take all kinds of forms, including absence seizures (staring spells), atonic/drop seizures (where a person loses all tone and falls). Seizures can involve hallucinations, sounds, repetitive motions.

Do you know what to do if someone has a seizure in front of you? Please take a moment to review the guidelines here on the Purple Day website in order to know how to react if you see someone have a seizure.

I am decked out in purple today in honor of Ezzy…and all her friends who fight or have fought the battle with epilepsy. It is a tough battle…and we need people on our side!

As many of you know, today is also a big day in American Civil Rights, as our Supreme Court hears the case against Prop 8 (and tomorrow DOMA). As a result I am also wearing red in support of all Americans having the right to marry the person they love…

I know these two things may seem unrelated. But they aren’t. In my country, a country that I love VERY much, sadly it has been the status quo to treat some citizens as less than others. To me, the fate of our LGBT community and that of our disability community are intertwined as they are two communities that are still battling to be “granted” respect and rights that should be guaranteed to begin with. They are two communities that still battle for visibility, understanding, and respect.

While epilepsy is not strictly an issue of the disability community, nor something than affects all of the disability community, Esmé’s epilepsy is the defining feature of her disability…My daughter never ceases to amaze and inspire me. She is a testament to joy and determination, to the fact that every person is important, and to the notion that love is the most important thing of all–for all people.