Part II – I Need Pictures
If you missed Part 1, “If I Could Write A Letter to Brad Paisley,” you can click the link and read it. Mr. Paisley or someone who can control his Twitter feed contacted me which is not as important as the issues surrounding imagery and people with disabilities. I am going to continue the discussion here. Originally, it was going to be called Part II – Glendale Pronounced Glen Dale (Sweet Home of the Best Guitar Riff). I probably need titles that are less confusing.
When you wish upon a rising star,
Makes no difference who you are…
UNLESS YOU ARE DIFFERENT LIKE ME
Pt 2 – OK, I’ll bite
Why is imagery so important? Pictures, movies, and songs can show people what is possible. Disney owns ABC (and ESPN.). ABC televises the show Rising Star. On Rising Star, one of the expert judges joked that a performer probably gave some viewers a seizure… or something close. I suspect that both comedians and people who have seizures were offended.
Are there more real comedians in the world or more people with epilepsy?
Millions of Americans have epilepsy. More people die each year from epilepsy than some other well known health conditions. How many people and characters do you know who have epilepsy? How many experts do you know who have epilepsy? How many judges?
Because those of us with epilepsy do not see people with epilepsy, we often do not even consider that successful people have (or had) epilepsy. Did anyone ever consider that Walt Disney had epilepsy? Since Tom Hanks, one of America’s most thorough actors portrayed Walt, I assume that Walt Disney did not have epilepsy. Am I wrong? What about Hanks and every other Academy Award winning actor? Does anyone in Hollywood have epilepsy? Do any Disney characters?
Disney is a global brand. They own ABC, ABC News and ESPN too. Do any ESPN staff have epilepsy? America has only recently begun discussing that concussions are real. Epilepsy? Just a joke.
There are millions of us in America. We must be somewhere.
We are forced to hide in the shadows.
Fortunately, I was born at a time and place where I am not burned for opening my mouth, but some changes have been slow. People with epilepsy were denied the right to marriage as late as 1980. IN AMERICA. Employment Discrimination was allowed IN AMERICA after 1980. For many of us with epilepsy, working harder and being better was just not good enough. So we hid in the shadows and often became shadows of ourselves.
We were real Americans who could not be real.
In my last post I joked about William Shatner or some other actors pretending to be Brad Paisley, because his comments seemed out of character. If you do not know country music or electric guitar, you do not recognize his talent. I certainly did not intend to call him possessed or demonic, because I believe he is genuine. AND, because people with epilepsy have been called possessed for centuries and I want to be more careful with my words.
I also want to remind my allies of our history. Brad Paisley’s comment was progress.
“First they ignore you, then they laugh at you….” Gandhi
So he made a joke. Is this a sign that we quit? No. Instead we use the seizure as our own metaphor. We fall. We get back up and fight on. Some people might call us insane, because we keep doing the same thing expecting different results, but we do not have much choice. We know that some people wish we would stay in place after each fall, but we know that would be even more insane. So at the risk of becoming a country song, we move along down the broken road.
And we do not stop thinking about tomorrow.
I would love to just let this go, but I have two kids. My daughter is 10 and my son is 8. I want them to know that I will love them regardless of their medical condition. I also want my children to see more images of people with epilepsy. We exist.
So, in case you are still reading, for me to find images of people with epilepsy, I create convoluted blog post titles. I write letters not expecting people to read them, because I need to know that other people with epilepsy exists. It is like a Dream within a Dream. (at least two people in one seemingly unnecessary comment.)
So when I create the title Part II – Glendale Pronounced Glen Dale (Sweet Home of the Best Guitar Riff), I am remembering my father who moved to Glendale, California from Oklahoma and Texas. I am remembering the musician who created the famous guitar riff to the song Sweet Home Alabama. I am acknowledging Brad Paisley for all of his compassion by including his home town and his tribute to the band Alabama… and I am preparing to acknowledge what many of us with epilepsy already know.
Some of us need Neil Young just as we need Young Money. We also need a few more princes. This will not feed my kids, but it will help feed my soul.
So, Mr. Paisley, I have heard that players only love you when you’re playing. Well, would you remind me why I love words and music so much?
NOTE: I edited the paragraph under the picture of my kids with Mickey Mouse. I added a space before the link and clarified the comment about people with epilepsy needing to be visible. I also corrected a mistake in the first paragraph.
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[…] Stay tuned for Part 11 – Glendale Pronounced Glen Dale (Sweet Home of the Best Guitar Riff) […]
Bryan Farley, so true that for those who fall… “get back up and fight on.” Heroes in my eyes. Champions and warriors of epilepsy! Sadly, there are many nearly 50,000 each year who do not “get back up!” They leave behind loved ones who wish they had a tomorrow to think about. A tomorrow to give them a hug. A tomorrow to say I love you.
This year has been an incredible year for epilepsy with the many families who have made incredible changes to laws by standing up in the senate chambers of their states. Advocating for access to CBD medicine for their children. Before this year the lives of these precious children viced in the grip of the worst that epilepsy has to offer, where marginalized, invisible, misunderstood and forgotten by others. Given up on by trusted physicians, yet tirelessly fought for by parents who continue to hold out hope that their prayers would be answered.
There are warrior children like Charlotte Figi and Zaki Jackson who are the brave pioneers and faces of epilepsy bringing in a new age of medicine and hope with CBD oil. Sadly, the young innocent lives of 7 year old Lydia Schaffer in Wisconsin and 6 year old Charlee Nelson of Utah lost their battle to epilepsy before they could have a chance to see if CBD oil could’ve saved them.
Then there are the families who get blindsided by SUDEP, sudden unexpected death in epilepsy. Their children were active and relatively healthy despite being diagnosed with epilepsy and seizures mainly controlled. Well known to the epilepsy community are Danny Stanton (age 4) (The Danny Did Foundation,) Chelsea Hutchinson (age 16) The Chelsea Hutchinson Foundation and recently Alyssa Josephine O’Neill (age 18) (AJO-Forever in our Hearts-Pay it Forward campaign). Include to this list the children of my friends. Carley Eissman (age 19) (The Carley Eissman Foundation) and a little girl named Madelyn McGuire (age 12) (Madelyn Mcguire-Angel on Earth)
Everyday, there are mourning mother’s, father’s sisters, brothers, family and friends who understand more than anyone else the weight of words and the unanswered questions of…Why?
All deserve the compassion and respect like that given to sufferers of more well known medical conditions like cancer, AIDS and Leukemia just to name a few.
This Part II response is very compelling and touches on so many important points. You clarify a lot of topics in regards to the history of epilepsy that some people may not be aware of. Certain topics, that I myself became intrigued about and begun researching on. I was astonished to discover the stigmas throughout history and stigmas still in existence today. Epilepsy education and awareness is still so very much needed throughout our world. It fills my heart with so much compassion and devotion for this condition that we all live with and advocate for alongside friends near and far.
I’m very happy to hear that Brad Paisley has reached out and responded to you. He appears to me, to be a genuine guy from what I can sense. He’s been sincere in his responses in regards to the seizure/epilepsy topic. I look forward to seeing what his next steps may be in regards to lending his support in the future.
Thank you Roslyn and Tiffany.
Even though I distrust online communication (as do many people including Brad Paisley), I trust that people are basically good when given authentic information. Brad’s real wife is the actress who starred in the movies Father of the Bride with Steve Martin. Her real father has written important article for caregivers in a related field.
I know that we will continue our discussion. We are just continuing a discussion that others started before we took up the call.
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