March 26th – Purple Day! A Day to Help those with Epilepsy and Seizure Disorders Feel Less Alone.
When I was in high school, I won a CD from a call in radio quiz. The question was something like, “According to a recent poll, what do males say their least favorite color is?” The answer: purple. Why did I pick purple? I happened to have a purple shirt ready to go that day. Did I second guess wearing it after I found out it was a guy’s least favorite color? You bet I did. I was a silly teenage girl enamored with the opposite sex. I’m happy to say I overcame my silliness and wore the shirt anyway. I’d like to say I wore the shirt because I was secure enough with myself not to care, but in reality I was probably running late. I’m always running late. But this is a time where I’m thankful for my lateness, because I’m sure the poll respondents’ lack of preference for the royal hue had more to do with their own insecurities than with what they found attractive on a lady.
Or maybe purple reminded them of Barney. I think we all wanted to strangle Barney around that time. Or perhaps those who answered the poll were subconsciously afraid of being alone.* (Aren’t most guys?). Lavender is the international color of epilepsy and the lavender flower is associated with solitude. Purple Day was founded in 2008 by then nine-year-old Cassidy Megan of Nova Scotia, Canada. Cassidy’s goal was to let everyone with epilepsy and seizure disorders know that they are not alone.
Seizures and Loneliness:
Seizures can be very isolating. The idea of a difficulty in the brain is frightening and those facing a diagnosis of epilepsy or a seizure disorder often feel scared and alone. The numerous misconceptions about seizures and the lack of education in the general public enhances this. Many people are afraid to be around a known epileptic because they fear they won’t know what to do if the person has a seizure. The inaccurate information in the general media (on shows like Grey’s Anatomy, ER, House, and Private Practice) about how to respond to a seizure also makes those who experience seizures afraid to tell others. Seizures and their treatments may also cause or increase feelings of anxiety, irritability, or depression. In addition, those who experience them may not be able to drive, work, or attend school regularly, further narrowing their contact with the outside world.
Another reason Epileptics might not want to share about their condition is that there is a stereotype that all people who have seizures are of lower intelligence. The “look” of some seizures contributes to this as the person having the seizure may stare off or appear dazed and confused. The seizure might be quick and others might think the other person has simply “drifted off,” unaware that they have had a seizure. The truth is, seizures occur in all ranges of the IQ spectrum. In fact, at least one in every ten people will have a seizure in their lifetime (Purple Day Quick Fact Sheet). Having a seizure does not make you Epileptic. Epilepsy is a condition that is defined by multiple seizures. I have worked with highly educated coworkers who, not knowing my history of epilepsy, have said to me, “Everyone who has seizures has limited intelligence.” There have been times when I have been speaking with doctors, genuine MDs with years of medical training, and have been treated as if I had limited intelligence because I struggled to verbalize my thoughts.
Yes, seizures can affect memory and thought processes, but so can seizure medication! The seizures and medications also affect mood and personality. This can make you feel like you are trapped inside a haze struggling to let people know that you are there, but all people see is the haze and they think that is you. Trying to address these issues with the neurologist can be just as frustrating. Every time I bring up my discontent with these side-effects and my concern about them increasing, I have been brushed off. It feels as if the doctors are saying to me, “You silly girl. You don’t need to think. It does not matter if you maintain your personality or a sense of who you are. It’s not like you are important like me. I stop seizures. I’ll do the thinking. You go back to being a silly girl.” The truth is, if I could be assured the seizures would not damage my brain, there is no way I would take the medication. It is no mystery to me why seizure patients have such a low compliance rate with their medication and it is not because they are of lower intelligence.
Having a seizure in public can be very embarrassing. When people hear the term, “seizure,” they usually picture the types that are classified by falling down or large jerking movements. It is easy to see how this experience could be embarrassing for the person with the condition; people’s shocked and awkward responses often increase these feelings. I am “lucky” in that my seizures involve some smaller repetitive motions like rubbing my fingers and blinking my eyes, but do not include these broader movements that are beyond my control. In fact, most people do not even know when I have a seizure. They do, however, perceive me as a bit odd. I stare. I scrunch up my face and look like I am in terrible pain. And I rub my fingers together like a baby rubbing a silky tag. After it’s over, I generally overcompensate for my look of intense pain, and what I assume is perceived as a lack of attention and interest in the conversation, by flashing an oversized-Cheshire Cat grin. Nope, not weird at all. Luckily, within a few seconds of meeting me, people know I’m strange and not because I’ve had a seizure. I think they classify these odd “moments” as “Classic Tosha.” I’m not winning Miss Personality anytime soon, but it’s working for me.
What can be done?
So, here’s the BIG question, what can you do to help those with seizures and epilepsy not feel so alone? The answer is ingeniously simple. Wear purple. Sometimes it takes a nine-year-old to come up with something so effective. On March 26th, wear purple and get anyone else you can to wear purple. When those with seizure conditions see your purple garb, they will know that you are not embarrassed by them, that you think they are ok, that you support them, that you care, and that they are not alone. As many people with seizure disorders, like myself, have most of their exposure to the world via internet, paint your internet purple too! Change your Facebook and twitter pictures (and any other social mediums you’re a part of) to something purple. It can be you wearing purple, or of a purple flower, ribbon, or anything else you find. Or use your current picture and just tint it purple. Add a link to PurpleDay.org or write a one-line message for the description such as “I love purple day!,” “I’m purple today for Epilepsy,” or “I love my friend with Epilepsy!” Get creative and spread some love and support!
Get a Purple Day twibbon to go on your Facebook and Twitter profile pictures to help spread the word between now and March 26th! A twibbon is a support ribbon. It will go over your current profile picture. You decide where and how big to make it.
Some other ideas for the day?
- Paint your fingernails purple.
- Put a purple streak in your hair. (Might I suggest washable scented markers. Your fun purple streak will smell great and will wash right out).
- Tie a purple ribbon in your hair or pin one to your shirt.
- Hold your breath until you turn purple. (This one is not actually recommended. Just seeing if you’re paying attention.)
- Top off your dapper purple outfit with a purple hat.
- Decorate your office, school, etc. in purple.
- Have a purple party at your work or school with a purple cake or purple cupcakes!
- What other ideas do you have? Post them in the comments section and inspire others!
How can I take this a step further?
I am so glad you asked! You are warming the cockles of my heart.
- Educate yourselves and others.
Sites to explore: The Official Purple Day Site. Particularly their Quick Facts page and their About Epilepsy section are very good. The different types of seizures are explained concisely in an easy-to-read format.
My favorite overall site for seizure and epilepsy information and support is The Epilepsy Therapy Project. They provide up-to-date information on treatments, tools to help you track and manage seizure symptoms and medication, have a good community and support forums, and are a non-profit organization dedicated to accelerating safer and more effective treatments.
- Read this quick guide sheet and post it in your work and school (may I suggest on a purple background) so people know what to do if someone around them has a seizure.
Shouldn’t I be donating to something?
Not really. This day is all about the patient and making them feel connected and cared for! I think that’s great. So many times the patient gets lost in the fundraising efforts. Yes, the money goes to fund research for their disorder, but they themselves, as an individual, don’t feel supported. This is your day to say, “I care about you, as a person. You are not alone.” Isn’t that cool?
Speaking of cool, did you know that purple is the only color that can be considered both warm and cool depending on the ratio of red to blue? Let’s use Purple Day to help all those with epilepsy and seizure disorders move from feeling cold and isolated to warm and supported!
Don’t let the support end on March 26, 2012. Send me your purple pictures and I will make a gallery of Purple Support so that anyone affected by epilepsy who sees it will be reminded that they are not alone. Send emails to BottledTimeBlog@Gmail.com with the subject line “Add me to the Purple Gallery.” Include any message or information that you would like posted with the photo. Photos can be sent at anytime before or after Purple Day. It’s always a good time to show support!
But Tosha, I’m going to show my support, I’m purple crazy, but I really really want to help by making a donation too. Don’t you have any suggestions? Of course. If you really want to donate, there are definite areas that could use your support and I’m not going to stop you as long as you promise to be purple crazy and remember the individuals! Here are a few suggestions:
Let me purple-ize you!
Email me a photo (BottledTimeBlog@Gmail.com) that you want tinted purple with the subject line “Purple-ize me.” I will tint it and email it back a.s.a.p. so that you can get your support on! Use it as a profile picture, tweet it, share it on your wall, blow it up to the size of a truck and plaster it to your house, whatever your supportive mind wants! Then send me a donation which I will give directly to The Epilepsy Therapy Project. This is on good faith as I feel it’s more important that you show your support on this royal day. Suggested donation – $1. You can also go directly to the Epilepsy Therapy Project and make a donation. In your email just let me know that you already donated. Again, this is on good faith. Of course, even if you already have a purple picture and don’t need/want one tinted, The Epilepsy Therapy Project can use your donation. Donations go toward the development of more effective and safer treatments for epilepsy.
- Hop on over to the Purple Day Zazzle Shop and get yourself some goodies. All proceeds go to the Global Purple Day Planning Committee’s continued efforts to raise epilepsy awareness!
*I come from a very small-rural town. In reality, the poll was probably 3 respondents in the back of a truck filled with hay. They most likely chose purple as their least favorite color because that was the color of the bruises their ex-favorite donkey left when it kicked them yesterday. But the poll was announced over those magical radio wavelengths so of course to my teenage mind it meant the entire male race disliked purple.
Related Articles From This Site:
Neurologists dithered on my diagnosis for about fifteen years. It was finally an Ambulatory EEG that got me classified. Read My Hair-owing Halloween to learn about my experience with this device.
Thanks to the work of the Ambulatory EEG, I was officially able to begin the wonders of finding a suitable seizure medication. Check out Keppra – Grape Flavored Brain Drain and Mood Swings in a Bottle to read about my first experience with that medication. But beware! It’s scarier than the Halloween post!
Remember me saying I’m always late? What? You forgot already?! Oh, you were thinking about purple. That’s okay then, I’ll repeat it for you. I’m always late! Find out why in Chronically Rediscovered Chapter Two: I’m Late! I’m Late! For a Very Important Fort-War! (Chapters can be read independently).
The Purple Support Gallery is up and running. Check it out to feel supported and submit your pictures to help others!