Join us! The Savvy is hosting a rockin' fundraiser for epilepsy on June 25 at 7 pm, at Eagle Heights Church in Somerset, KY. Hear a few words from the filmmakers and get your faces rocked off!! :) Proceeds benefit The Sacred Disease Project. www.sacreddisease.com
There is a moment when dreams collide with reality... Just as the moment right before sleep, when images and thoughts flicker amongst perception... And we connect the dichotomous occurrence, briefly, briefly... embracing that only madness(!) drives the linear processes of logic! Similarly, the ideal visualizations of human desire clash with the physical elements that define our progress, and we are madness in motion.
‘‘The history of epilepsy can be summarized as 4000 years of ignorance, superstition and stigma, followed by 100 years of knowledge, superstition and stigma” (Kale). In most underdeveloped countries, having epilepsy means that you possess evil spirits. There are ideas on how to get rid of these spirits, though. Chinese folklore remedies suggest that one drink a young girl’s urine (Press). The international press has reported women with Epilepsy being ritually beaten in other underdeveloped countries over the last decade, also (Press). Even in Michigan, just in 2006 – while having a seizure, a man was shocked with a taser gun; beaten; and detained for “disorderly conduct” (Epilepsy USA). He stayed at the detention facility for three weeks before the state forced him to plead not guilty by reason of insanity to be released (Epilepsy USA). Another girl – only fourteen years of age – was buried alive in Kenya, by her parents (O'Donnell). They thought she was possessed by evil spirits and could not deal with having her around while having seizures. These counts of abuse and neglect reflect the need for immediate attention and change. The lack of Epilepsy education creates a vulnerable situation for people that need direct care when a seizure occurs. Coming from someone with Epilepsy, it does not make anyone feel safe while these events above continue to happen. There is a need for awareness, education, and appropriate treatment.
In the past, you may recall other mistreatments that were commonly known as witch hunts. People with Epilepsy were often thought to be demonic, and were killed because of these evil spirits during the Salem Witch Trials (UMKC School of Law). These thoughts and accusations were common in the 1400’s on through Salem’s events, and the perceptions of seizures have not changed much (Wissler). Without counteracting this problem, more major human rights violations will continue.
Education is the major factor to the abusive treatments that people with Epilepsy have endured. According to an article on Science Direct, there are two ways to counteract the stigma surrounding Epilepsy: education and resources (Hanneke M. de Boer). Education can teach others to realize it is a medical condition – opposed to a social condition, or of a supernatural nature. By educating others with scientific evidence, the reality of the condition will be revealed simply as a neurological issue.
Resources will provide treatment, but will also serve as reputable foundations that provide validation to Epilepsy as a medical issue. Legislation is a resource for one’s rights, because the law tends to the law. People with Epilepsy were not allowed to be married in America until 1956, and the last state to repeal the law forbidding marriage into Epilepsy did so in 1980 (Hanneke M. de Boer). It is imperative that the government and other community service workers get on board the train of change, for equal rights.
Considering that Epilepsy is just as common and fatal as breast cancer, it is strange that it goes overlooked and its research underfunded. Comparatively speaking, Epilepsy is not being treated fairly with its similar statistics and troubling conditions. Jon Meacham of Newsweek stated in an article last year, “…public and private funding for research lag far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer's and $280 for multiple sclerosis)” (Meacham).
Funding is definitely another factor to the lack of Epilepsy education, as noted. Without the ability to research the condition, there will still be unrealistic beliefs about the nature of Epilepsy and abuse will ensue.
From a biblical perspective, there are scriptures that refer to a seizure as a demonic possession. Many people use this as reason to overlook Epilepsy as a medical condition. Jesus healed a boy that “…fell down and foamed at the mouth….” by casting the demon or spirit out of him. Certainly, this had an impact on the fear of “possessed witches” as it originated in Europe. With the Bible being used as the primary source for guidance on everything, people misinterpreted the scripture over the years and refuse to let their ideals go. They have understood it as Jesus rebuking the occurrence of the seizure, and they did likewise.
Having seizures can have an emotional effect on a person, especially considering the fact that a person with Epilepsy is dependent on others when unconscious. Most seizures result in loss of consciousness, which does not allow the person to advise others during the crisis. When the person wakes up from the seizure, he or she may have many disorienting questions or emotions that need to be addressed. This makes people with Epilepsy dependent on others to take care of them in such a situation, making it even more important to secure legislation and awareness. Law should require that community care givers and service workers are informed on how to care for one having a seizure since they directly encounter the public on a daily basis. It is our fellow duty as family, friends, or neighbors to do so.
Since 1-2% of the population has Epilepsy, some people may still think there is no need to know about the condition if you do not know someone who has it. This is incorrect, and you will understand why as you read on.
There is a popular saying that explains the most important reason to create change and awareness in the field of Epilepsy. Martin Niemöller once said, “…they came for the communists and I did not speak out, because I was not a communist; then they came for the socialists and I did not speak out, because I was not a socialist; then they came for the trade unionists and I did not speak out, because I was not a trade unionist; then they came for the Jews and I did not speak out, because I was not a Jew; then they came for me — and there was no one left to speak out for me” (Marcuse). Who will help you in your time of need? Just like Niemöller points out, if you do not participate in community affairs and the well-being of your fellow humankind, then society will not participate in your personal well-being either. Each and every person can create social reform and change as needed. It is each and every person’s duty to do so, as a member of society. The entire reason for civilization is to compromise and socialize to gain mutually beneficial opportunities and circumstances. By simply sharing information with one more person about Epilepsy, one contributes to the solution.
Most importantly, our government bodies must remain involved to stop future mistreatments and rights restrictions. Just in 2008, an amending law (S. 3406) was passed, allowing Epilepsy to be reconsidered under the American Disabilities Act (ADA) and securing protection in the workplace. (The Epilepsy Foundation) While the ADA was passed in 1990, the Supreme Court declared only a few years later that Epilepsy was not a hindrance to people’s rights or working conditions (The Epilepsy Foundation). Why did the court make this judgment? The answer to this question always comes back to the lack of education, and not seeing an ‘Epileptic’ as a person. With legislators and policy makers in favor of appropriate medical procedures, they will also understand where one’s rights may be affected with this condition. The dependency between one with Epilepsy and their care giver can allow for perilous situations.
Constructive change will naturally occur with Epilepsy outreach programs. The significance of education will surface, and others will find more reasons to act on this predicament. People will not feel helpless or scared when a seizure occurs, and people with Epilepsy will not feel helpless or scared when they wake up from a seizure. With more awareness, people with Epilepsy will feel safer knowing that they will be treated appropriately during a seizure. As others learn more about the condition, they will feel accomplished knowing they can handle a seizure at anytime. They will want to become involved more in outreach, as well as in their own afflictions. Contributing to society is rewarding and encouraging. As they become educated, they will hopefully become interested in researching for a cure! There are few that study Epilepsy specifically. Since only 2/3 of the Epilepsy population encounter results when taking medication, there is another one third left that needs a more viable solution. (The Epilepsy Foundation)
Unfortunately, there are a few obstacles to overcome before we can get through to others efficiently. As mentioned before, 1-2% of the population has Epilepsy. We are limited on advocates, and this poses a problem when trying to create global awareness. Some people do not find much benefit in learning about a condition that may never affect them, and they perceive Epilepsy with little probability of occurrence. Routine dominates many people’s lives, and some prefer not to be interrupted.
By staying determined, we can utilize all forms of media to connect globally and teach others about misunderstanding Epilepsy. People with Epilepsy will one day speak openly without worrying about being rejected or ridiculed. They must speak to friends, family, and neighbors openly about the condition to expose the reality of Epilepsy. Internet and face to face encounters offer the best support for influencing others, and remain accessible with each passing moment. The time for change is now. The time to let go of fear is now.
Works Cited
Epilepsy USA. "Epilepsy Foundation - Michigan Man Arrested During Seizure." 29 September 2006. Epilepsy Foundation. 27 July 2010 .
Hanneke M. de Boer, Marco Mula, Josemir W. Sander. "Epilepsy and Behavior." 4 February 2008. Elsevier. 6 August 2010 .
Marcuse, Harold. Niemoller Quotation Page. 20 May 2010. 7 August 2010 .
Meacham, Jon. Newsweek. 11 April 2009. 27 July 2010 .
O'Donnell, Frank. Blind Hope - Scotsman.com News. 8 October 2004. 7 August 2010 .
Press, Anna. "Epilepsy Ontario: Epilepsy in Third World Countries." 30 June 2006. Epilepsy Ontario. 27 July 2010 .
Kale, R. "Bringing epilepsy out of the shadows. ." Br Med J (1997): 315:2-3.
The Epilepsy Foundation. Epilepsy Foundation. 7 August 2010 .
UMKC School of Law. Salem Witch Trials. 2003. 7 8 2010 .
Wissler, Bernice. Epilepsy.com. 15 September 2003. 27 July 2010 .
As I walked to the stage from the bleachers, the crowd applauded me with whoops and hollers. It almost brought me to tears, that every person in this group supported people like me, with Epilepsy. I reached the front of the stage to receive my award for being one of the top fundraisers for the Epilepsy 5k Walk, thankfully without tripping! I was proud to be a member of the human race, and proud of myself for being a part of a group of progressive minds. A flash from the past flickered in my mind, as I reflected on how far I had come.
“What are you looking at? Hello?” The young girl waved her hand in front of my face as I awoke from my dazed ‘blanking out’ spell. That’s what my family called it. I would stop everything, mid-sentence or walking across the room – just to stare off into space. It felt as if I were sleeping, without dreaming. It could last from 2-10 seconds, but it happened at least thirty times a day. I wasn’t sure what to say at school when it happened, so my parents told me to tell everyone I was daydreaming when it happened.
“Oh, I was just daydreaming,” said my innocent voice, sounding foreign to me. I didn’t like to lie, but as an outcast at the age of 11, with wild hair, old wrinkled hand-me-downs, and oversized bosoms – it had become pure instinct. It had become survival, in fact. If I was to ever fit in, I knew I would have to be agreeable for anyone to accept the “daydreamer”.
The flashback was not just one unfortunate occurrence – it happened daily for five years – with a dash of insults and bushels of frustration. Not only was it embarrassing at school, my brothers also joined in the fun. I was miserable.
My journal was my best friend and confidant; it never judged me when I cried about not being able to ride my favorite rides at the fair, or about not having enough freedom to cross the street all by myself. I could expose bursts of violent emotion without shaking any ground, as I furiously wrote, fighting to tread the waters of reality. I passed a few hurdles, crossing the street alone after becoming diagnosed with Epilepsy at the age of 12, and hiding my insecurities well enough to be liked by a few. The journal only sufficed until my senior year in high school, though.
As I sat back down next to my husband and friend, they hugged me. It was still emotional for me to confront my past experiences, since I am a fresh face in the field of Epilepsy advocacy. I watched others received awards and say a few words, and let my mind drift into the past again.
I had my second tonic clonic seizure at the age of 18. My best friend drove us to school as usual, even though I had several “blanking out spells” (also called absence seizures) that morning. In the past, I had went to school while having them, and they cleared up enough to function after a few hours. Why would they be any different today?
As I stepped out of Nicole’s red Honda Civic, I managed to exhaust a few words out before everything went black.
“Nicole, I don’t feel so good…”
My eyes opened uncertainly as I slowly recognized a crowd of people staring at me. My eyes frantically darted around seeking the familiarity that refused me. Audibility slowly collected its blurry elements to form distinguishable sounds. Words came together.
“What happened?” My mouth felt dry and my voice was hoarse. Most faces looked at me with fear, antagonizing my own, as one compassionate face stood out from the rest. Who were these people? What the hell is going on?
“You had a seizure, can you tell me what your name is?” The southern accent carried a hint of familiarity, but it didn’t concern me. The fact that I couldn’t remember my name did concern me, however. I looked around as my surroundings slowly created a picture of the present for me. Nicole was crying, standing back as if she was afraid to touch me. She held notebooks that I knew were mine, since they were drenched in fresh blood. I reached up to touch the bandage on my chin with weak arms, as the paramedic repeated the question. The puzzle pieces of reality came together at last. After another moment’s hesitance, I answered confidently, with tears.
“It’ll be okay, Tiffany – you’re okay,” my principal reassured me. I believed him, as he rode with me in the ambulance to the hospital.
Snapping back to reality, the top fundraiser of the walk grabbed my attention, raising $13,000! With a standing ovation, he was asked to give a speech, although he preferred not to. Personally, I would have smothered the mic and had it taken away for talking too long.
“I d-did it for my d-daughter,” he stammered out, fighting tears. “That’s what this is all about. Thank you all so much.” He refused to say more, as he teared up. I understood, as my eyes filled up as well. I had many emotional times in my life because of Epilepsy, too…
At the hospital, all of my shame, frustration, embarrassment, and loneliness came to the surface at once. I was ashamed, because everything about my life was so different from everyone else’s reality. While my classmates worried about fashion and popularity, I was struggling to breathe. I felt shame for not understanding how to control my seizures, and because the crowd looked scared of me. I was embarrassed, because of the small town rumors that would ensue to increase my frustration. All these feelings lingered for a few days, but one of my classmates put an end to my pity party.
When I returned to school, one of my classmates had me appalled at her accusation. It wasn’t an inquiry, as Sheree disguised it. It was disguised with malice and ridicule, especially considering the fact that we never considered each other as friends.
“Don’t drugs cause seizures?” She gave a sly, smirk-y smile as she waited for my response.
“Yes, but that’s not why I had one.” Daydreamer survival mode kicked into high gear, as I tried to sweep everything under the rug and provide a quick explanation to steer attention away from me. I pretended to do my class work so the questions would stop. Thirty minutes of interrogation was enough. I scribbled disturbing pictures of bleeding hearts wrapped in thorns, but the journal effect had succumbed to inescapable despair. My dramatic senior year carried many complications. Although I considered Sheree’s accusations of drug use as rude and inappropriate, I had experimented with a few drugs and a lot of alcohol, about six months before the seizure. It was a brief time of guilt and anger, possibly an indirect factor to the reoccurrence of seizures. Many drugs alter the brain’s normal electrical activity – some excite the neurotransmitters, increasing the risk of seizures. Stress acts in the same manner, so it wasn’t quite so easy to discern the cause.
The varied responses from classmates, friends, and my principal confused me. I realized that I did nothing wrong to bring all the negative attention on myself, even if my summer experimentation had gone awry. Some whispered, Principal Payne and friends were supportive… Eventually, the mixed feelings began to piece themselves together like the familiarity of reality came after a seizure. Why am I insecure?
The walk was over, and my stomach was growling.
“Texas Roadhouse!” I held up one of the gift cards that I received during the awards ceremony, and Matt and Melissa echoed the notion. A serious tone had settled over our conversations, instead of the light air about us just thirty minutes earlier. We were inspired, and I assumed Melissa was also reflecting on her experience with Epilepsy, also.
“It’s such a great feeling to have that many people around you, all working hard together to contribute to your well-being,” Matt said. I nodded tearfully. Things weren’t always this way for me, as reflections of the past arose uncontrollably.
After graduating high school, the next few years were speculative, as I finally realized that there was more ‘Mr. Payne’s’ in the world than there were ‘Sheree’s’. By discovering that some people want to help, I learned that I wanted to as well. Until the age of 25, actually, the only life I knew was of internal battles and storms of emotion. Self-esteem slowly seeped in, as I became a spiritual body, determined to seek truth.
Although the path took awhile, God blessed this broken path of preparation. I slowly cast each worry and burden on Him, my new journal of faith. I found more strength each day, becoming firm and happy.
Then, a disciple named Matthew, from this world and time, loved me with the Lord’s love. He taught me how to truly love unconditionally, and how to forgive. Meeting him made me feel innocent and foreign to myself once again, and I accepted my encounters with God and His Spirit as reality. The walls came down, as I gave up trying to make sense of this world. No longer of this reality, I made sense of His. Once I learned how it could help me, my path changed once again – how could I help others? The moment this question joined my journey, I married him for helping me to discover God’s plan for me.
I looked at him with adoration, and reached over to squeeze his hand. There was nothing I could do to make him realize how deeply he impacted my life, so I settled for the next best thing. I became passionate about loving others, and revealing God and His strength to others. I decided that Matt would understand how God was working through us, if I could help others as God called me to do. Therefore, my heart fought all worries that had accompanied me, and went out to others that had felt helpless as I did growing up.
On Easter of this year, to reaffirm these commitments to the Lord, I joined the most important love of my life by baptism. In this rebirth, I have been dedicated to using my struggles to relate to others in need. I am now an advocate for human rights. I advocate for people with intellectual and physical disabilities, particularly creating awareness and education for others affected by Epilepsy. I do what I can to help others know that they are not alone, and I am open about why I am no longer helpless.
Perhaps I am the ‘daydreamer’. I dream of a world that is filled with peace, love, compassion and understanding. I have dreams as big as the sky, and I thank God for blessing me with them. I’ve been asked to explain myself many times in my life, and I’ve never been sure how to do so. I’ve just always been the daydreamer.
Ask me now. When you do, you’ll find out that my journey to educate and create awareness is not of my doings. God is my reason for everything, and I have nothing to do with it.
