Wrestling with Ignorance…or Understanding the Choices Others Make?

It’s amazing, isn’t it? November is two-thirds over. That means another National Epilepsy Awareness Month will be history!

I’ve been fascinated by and so proud of all of the advocacy and awareness efforts. It seems that Facebook and Twitter have been dripping with purple this month, along with all of the blogs and websites! You all…or WE…should be very proud of our efforts to promote Epilepsy awareness. And, I know it’s not over yet. As someone who is always watching the process, I have to wonder: how successful have we been in moving the needle?

Last Friday night, I was having a conversation with someone at the Epilepsy Foundation of Michigan‘s regional conference. We were discussing a variety of things, but soon our talk turned to the topic of how we engage those we know and love to understand and appreciate life with Epilepsy. She told me that she feels as if she is sailing these waters alone…or flying solo in her battle to raise awareness. Forget about the fact that her seizures are under control and she takes amazing care of herself…she is a consummate advocate and she gets so discouraged and frankly, furious when others don’t realize her plight. It’s as simple as sending out a mass email to more than 200 of her contacts, which she did with the link to the Epilepsy Foundation’s ‘Get Seizure Smart’ campaign, and not one person responded to her.

“Do you think I seem too healthy? Do I not appear to be sick enough…therefore they don’t want to advocate with me or support this cause?” she asked.

It’s a legitimate question, really. And, one I’ve wrestled with often.

I’m sure everyone who reads this blog can agree…it can be downright offensive and hurtful when someone you know well doesn’t support your mission. I’ve been there, numerous times, but I think I’ve come to understand how to deal with the feeling. Whether it’s a tiny donation for a fundraiser or something as simple as a response to an email to raise awareness, I don’t believe that they don’t care about me or the cause.

We can’t look at it as disregard or heartlessness. People have their own causes and their own concerns, and many times they make conscious decisions about how to spread themselves and their support. I had someone I know tell me last March, when I was raising money for the Epilepsy Foundation of America, as we were getting ready to head to Washington DC for the National Walk, that she and her husband, ‘just don’t get into those things, therefore they don’t donate.’ I was horrified. She knew me so well and knew of my plight with Epilepsy. But really, it was her choice not to give, just like it’s my choice to throw my efforts into supporting the Foundation.

Rather than feeling abandoned and discouraged, I like to turn my hurt into effort. There are so many ways to point out Epilepsy to people. So, here goes:

-Mark someone’s birthday by making a donation (it can be as small as $10) to your Epilepsy Foundation affiliate or CURE…or any organization you are associated with. They will receive a note letting them know a donation has been made in their honor

-Holidays…rather than a materials gift, make a donation in honor of the recipient

-When someone passes away, no matter what the cause of death, you can mark their passing with a donation to the organization of your choice

-If you are emailing or sending an appeal, be really specific…tell a story or point out what the organization provides to people like you. Be personal! Don’t just ask.

-Be gracious. Really. Do you follow-up with a thank you note? Do you send photos from the event?

I’m not one to dole out advice, but take it from me…you’ll feel a lot better if you don’t take ignorance personally. You become a better person and a better advocate if you stay positive.

My family...at the 2008 Epilepsy Foundation of Michigan Summer Stroll

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Jeff Nelson November 21, 2010 at 1:09 pm

Out of all the blogs I’ve read, and people I’ve talked with who have ‘E’, you certainly seem to be the most advocate person out there doing pretty much all that can be done. Not sure there really could be anything else you could do? I admit, despite my ‘E’, I’m not very advocate, though, I do bring it up, and try to explain things about my ‘E’ when it comes into the line of conversation, or I happen to have a complex partial, and someone notices, though it never really seems to have much of an effect other than raising a slight amount of curiosity to the educated and sometimes the slight amount of ‘eyebrow raise’ to the less educated. So as is, it’s not too strange to me to think others unassociated with ‘E’ don’t feel the need to help out. Again, not looking sick may explain the other reason behind that.
As I don’t look sick, it can be tough explaining why I don’t have a job to other people. Usually, the first thing someone says to me upon meeting them is, “So…what do you do?” I always try to find interesting answers to that one despite being an oil painter on my good days, though, even that one is never looked upon friendly as most know artists don’t typically make much cash. Funny how we are often judged by how much money we make. It gives people an easy way to place ones nitch in society. However, we know where we are placed. And that’s where our hearts are! So keep going with what your doing, and I’m sure eventually you will receive what you are looking for…..donations, help, and public awareness for ‘E’!

S November 23, 2010 at 11:51 am

Just found your blog. Purple is referenced in your blog as the ribbon color for epilepsy awareness, but purple has apparently been “kidnapped” by the no-more-school-bullies folks. One school even banned the mass wearing of the color purple, because it would cause “disruptions”. There were “wear purple” events that were NOT epilepsy related. Sigh.

There was a very good article published on line in the NYT (November 14). We found your blog through what appears to be a Canadian site.

Our teen is the one with epilepsy, she has had epilepsy since she was 11, she is now in her senior year of high school. We are talking with colleges now, as they will stop talking with us parents as soon as she turns 18. We couldn’t even be looking at colleges if it hadn’t been for the folks at Henry Ford’s EMU in West Bloomfield. New meds have made all the difference; we have been here before, and we know that these meds also might stop working, but we are grabbing the moments and running with them (literally–kid just finished her fourth and final cross-country season, and met her goal of finishing every race that she started).

We did the Summer Stroll for Epilepsy at the Detroit Zoo this year, would consider doing that again.

claire April 6, 2012 at 5:53 pm

hi my name is claire i have had epilepsy sense i was 6 years old i have tried to understand it but its hard i would love to meet people who have epilepsy ages would be nece 21 and above 17 18 19 are good to lol its hared to explain to my friends i hope to here form you soon !!!!!!!!!!!!! (:

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