Jenn Koren

Who Says I Can't?

Why I Freaked Out at My First Epilepsy Walk May 8, 2011

Filed under: Uncategorized — jennkoren @ 6:05 pm

When I saw the purple shirt that I was supposed to wear for my first epilepsy walk my first thought was, “You’ve GOT to be kidding me.” I looked at the other white shirts that my parents, kids and Vinny were supposed to wear and I suddenly felt like the ‘Big Grape Ape’ standing out amongst a sea regular people.  It was less then 24 hours before my first official Walk for Epilepsy and I started to seriously question whether my kids were going to experience their Mother having a complete crazy person melt down that they would pass on to their grandkids in the years to come.  Only one word came to my mind….’oy’.  Okay maybe that’s not an actual word but it’s definitely the nicer version of the words the were running through my head at the moment.

I’ve had epilepsy for over 15 years now and rarely talk about.  I simply don’t like talking about.  People don’t understand it and it annoys me when they try to understand it.  I’m incredibly uncomfortable when people learn that I have it and see that initial pity on their face.  I want to get all jacked up and be like ‘what?  what?’  Yeah, real mature I know.  The fact that I’m participating in this walk sporting a nice purple shirt that says, ‘Look at me, I have Epilepsy’ with thousands of people aware of it makes the saliva rise to the top of my throat and literally makes it impossible for me to swallow.  When my Mom first found out that I was going to do the walk she called me all ‘cheerleader like’ and was so proud of me saying she couldn’t wait to do the walk with us.  I think I had about five anxiety attacks during our 5 minute phone conversation.  I couldn’t wait to stop talking about it and get off the phone.

So here I was with my husband who has lived during the main seizure free period of my life, children who had no idea I had epilepsy until the current year and my parents who lived through the whole thing with me.  I seriously thought about switching the purple shirt with my husband so I could hide out during the walk and blend in with the others.  What?  Don’t tell me you wouldn’t have thought of that too!

The walk was in DC and we arrived the day before so we had plenty of time for the whole experience to soak in my already stressed out brain.  We took in some sites with my parents and had a great time with them.  The morning of the walk came pretty quick and my Mom was at my door bright and early sporting her proud white T-shirt.  You have to love her positive attitude about everything in life but this time she was completely freaking me out.  My husband knowing how to deal with my stress better kept his distance and glanced at me every so often to make sure I wasn’t in danger of completely making an ass out of myself in front of the kids.  I returned his glances with death stares as if to say, ‘I can’t believe you didn’t talk me out of this’.

The walk was a short subway ride away and we all boarded the MARC train approximately 30 minutes before the walk was supposed to start.  As soon as we got on the train we started to see the other shirts which my Mom greeted with ‘Hey, look at that!  They are walking too!’  Ugh…I was totally not going to make it out of this without my breakfast ending up all over one of these white shirts.

We had a few stops to go before getting to our destination and at each stop we saw more white and purple shirts get on board.  Purple shirts were worn by all types of people that if they were wearing normal clothes you would never know they had epilepsy.  I wondered if they felt as uncomfortable as I did?  I was waiting for someone to rip off their purple shirt and start chanting ‘Purple Shirts Suck! Purple Shirts Suck!’  But apparently no one shared the same boycotting attitude that I had at that moment.

My Mom sat all cheery with my daughter and my son sat with my Dad.  Vinny was avoiding me, which was good because the years of pent up tears were just dying to find an excuse to use that very moment to show the entire subway that I was not as badass as I made myself out to me.

As we got off the train and made our way up to the main level I glanced behind me to see all the purple and white tshirts following.  A group of about 10 white shirts all clustered together and still on the train caught my eye.  I wondered what they were all doing huddled together and why they were still on the train.  As the white huddle broke apart I saw them slowing making way for 2 other white shirts who were carrying a person wearing a purple shirt and that purple shirt was worn by a young girl.  And that was it.  The tears came and I quickly walked ahead of the rest of my family to hide the emotions that would no longer contain themselves.  My Mom saw, but she kept her distance which was good.  My Mother and I don’t handle emotions well together.  We’re like the domino effect.  When one of us goes down the rest of us follow.  Fortunately I pulled it together and started up the stairs to the Capitol where the walk would begin.  It was pretty cold and kind of muddy but fortunately we came weather prepared so I figured we had about 30 minutes before the first kid started to complain of not being able to feel a part of their body.

Before the walk began we listened to some music and visited some of the vendor tents.  My Mom and Emma emerged from one of the vendor tents with an armful of epilepsy gear and a very pleased look on her face as if to say she got a really great deal on all the free stuff.  When the walk began we did just that…walked.  Not much talking went on but it forced me to open my eyes and look around at all the purple shirts.  They didn’t seem to be hiding out like I wanted to and so far no emotional breakdowns from any other walkers.   There were toddlers, teens, infants, Moms, Dads, Grandparents and even dogs!  I looked at the teens and understood what they must have felt and admired them for doing something that I would have never done at their age.  I looked at the children and felt ashamed for wanting to hide out when they stood so proud in their purple shirts and had a team of family and friends sporting personalized supportive team shirts in honor of them.  I saw parents walking with  their children and realized that they too looked like proud cheerleaders just like my Mom.   I glanced at my Mom and saw her looking away.  I realized that this too was emotional for her and that I was not as alone as I thought I was.

Throughout the walk the feeling of wanting to vomit, breakdown and cry like a baby never went away.   There were several times I wanted to run over to my Mom, fall to the grown as we weeped together like we were characters in some Lifetime TV Movie.  Thankfully I controlled myself and I’m sure she and the rest of the participants were grateful for that….oy.

The walked seemed to last forever but we made our way back to the train soon enough.  We didn’t stay for after walk festivities as I felt like that would definitely tip me over the edge into insanity and result in my daughter to possibly be traumatized for the rest of her life.   Instead we left early and did what we do best.  We headed to Starbucks and I got a grande, nonfat, 2 splenda latte.

After looking back at the whole situation I’m glad I did it.  I am still trying to answer the question on why I was so freaked out about the whole situation.  One possible solution is that my inability to let go of being in control could be hindering my ability to get in touch with my more sensitive emotional side, but I don’t really like that answer.  Instead of dwelling on the reason, I choose to do what I do best and plan to organize and run one of the events in the future so I can help other kids that might have felt the same way I did.

It was a good first step for me and now my daughter sports the purple shirt at home every now and then.  I asked her if she realized that was the purple shirt that people with epilepsy wore at the walk and her answer was, “yeah, so?”  Nice Emma…Purple Power!

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One Response to “Why I Freaked Out at My First Epilepsy Walk”

  1. Rosemarie Says:

    Thank you for sharing this. (Having epilepsy as you know I do), or not having it, everyone will really appreciate this. I just told you I was looking forward to seeing you blog. You had not in awhile, so I must say I am happy your finding time from your busy schedule to put a smile to my face, and I am sure many others.

    Purple Power 😉


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