Pressing On Through Frustration

I try really hard not to complain about my epilepsy, my brain injury and the complicated side effects of the five medications that I take everyday, but it is frustrating. It’s frustrating when I could depend on myself in the past and I can’t anymore. There is just so much that is different.

Last week I completely freaked out in my weight class when the instructor asked me to count how many people were there. I have trouble counting groups of anything because I can’t figure out how to group things in an order so that I will know what has been counted and what has not been counted. Short of asking everyone to stand up and then sit down after I point to them I was literally at a loss for what to do. I just tried to count the mats on the floor and then I added a few for good measure. I walked out of class wondering how I had turned into someone who is afraid to silently count people who aren’t even looking or talking to me. Bizarre.

I miss the human connection that I used to have. Sometimes it can be so hard. Conversations can be so strained and down right exhausting. My mind is slow and my speech is even slower. When I try to speak, the words don’t sound right coming out of my mouth so I repeat them. They still don’t sound right. So I slow my speech to pay attention to everything I’m saying, but they still sound wrong, so I repeat them again, and then I sound ridiculous.  Then I’m embarrassed and I quit trying. Sometimes I don’t understand what people are talking about so I can’t even enter the conversation. Years ago I could have.  Now I just stand silent.

It feels like forever since I’ve felt like myself. I’m not sure I know who that is anymore. When I make mistakes is it because I’m just getting a little older and trying to multi task too much or is it because of my brain injury and the side effects of the epilepsy medicine? Can I drop just one medicine that causes the worst side effects or is the risk of seizure too great? A seizure could be fatal. The risk is too great. I have to press on through the frustration.

I’m still learning. I’m still growing. I’m still trying to embrace my new me, my new world and my new normal. I’m trying really hard to like it. Some days are easier than others. Today was not an easy day.

Copyright © Gatewood Campbell, December 2011

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The Power of the Purple Ribbon

November is not just about the turkey. November is also National Epilepsy Awareness Month. It’s a little known fact and one that my family decided would become better known this year. This was a conscious decision that I made, and not one that I took lightly.

The most difficult part of sharing this blog is letting people connect the diagnosis to me. My blog lets people know I have the disorder. Sometimes that can be a tough pill to swallow, literally. When you pin on a purple ribbon the whole point is to raise awareness and hope that people will ask what it represents. It’s one thing to wear a purple ribbon and tell people you are wearing it because you know someone with epilepsy. It’s another can of hot tamales to tell a complete stranger that I’m wearing a purple ribbon because I have epilepsy. Get ready for some awkward moments, stares and comments. People have preconceived ideas about epilepsy and whether the information they have is true or false, and I had to be mentally prepared. I learned a long time ago (from our dear Kathleen) that awkward moments are more about the other person than me, and in the end, the cause is worth a few weird minutes of my day. After all, everyone has issues, I’m just bold enough to tell people what mine are.

Epilepsy Awareness at our house started with one spool of purple ribbon and one box of pins. Johnny came home and saw me with a glue gun (which is the absolute extent of my crafting skills) and asked what I was planning to do. I told him I planned to make a few lapel ribbons for us all to wear in November and maybe a few extras to give away. I made 10 ribbons that night.  I never could have dreamed what I would see unfold over the next 30 days!

One spool of purple ribbon and one box of pins is where Epilepsy Awareness in our house started. Here’s what it became…

my husband wearing a purple ribbon every single day, even if he never left the house.

my children wearing purple ribbons on their shirts, jackets and backpacks everyday and carrying extras everyday to share.

my 13 year old proclaiming Epilepsy Awareness Day at his middle school, speaking to his entire school, educating them and asking them all to wear purple to support the cause. All of his teachers, most of his classmates (some even in purple socks), many in his grade and dozens of others in the school supporting the cause by wearing purple and wearing the 200+ ribbons he shared.

my 8 year old following his brother’s lead, speaking to his entire elementary school about epilepsy and asking them to wear purple on the day he chose as Epilepsy Awareness Day. His classmates, decked out in purple (leggings and headbands included), students, faculty and staff wearing purple or one of the 100+ ribbons he shared, all because a little boy told them he was doing something for his mom.

posts on Facebook from friends saying that all the kids at the bus stop were wearing purple.

posts on Facebook from friends letting me know they were wearing purple.

my Mom wearing the same purple shirt day after day after day (I do so love my Mom).

my Mom’s co-workers sporting their purple duds.

my mother in law wearing her purple ribbon at Thanksgiving dinner.

my sister in law wearing purple on the day my son chose as Epilepsy Awareness Day at his school.

my friend wearing her ribbon at the school where she teaches and hearing how she is sharing about epilepsy with her students.

seeing one of my purple ribbons pinned neatly on a friend’s sweater when I met her for lunch.

a picture on Facebook of a friend wearing her purple ribbon and sharing the meaning behind it.

sitting down in church and seeing a friend wearing the ribbon we gave her the week before.

a relative who recognized symptoms I described in my blog, sought medical attention, and was finally correctly diagnosed with seizures.

a friend reaching out to me after experiencing break through seizures for the first time in years.

a phone call from an advocate in Tennessee who read my story and was looking for people willing to speak out.

an email from a lady in Nebraska who developed epilepsy from a brain injury and has never been able to explain how she feels to her family. They now read my blog and understand her emotions in a way she hasn’t been able to express.

one epilepsy fact or thought on my Facebook wall each day to educate and inform others.

our 4′ Christmas tree in the playroom decorated with the leftover purple ribbons.

A dozen spools of purple ribbon and 5 boxes of pins later, Epilepsy Awareness took on a life of its own in 30 days.

Where this goes from here and what my role in it will be, is anyone’s guess. The staggering truth is that Epilepsy affects nearly 3 million Americans and is still one of the least understood major chronic medical conditions. Unfortunately many patients have cases too severe to speak for themselves. They can’t speak up but they desperately need people willing to speak out. I’m among the fortunate, I’m able to speak up and I’m loud enough to speak out. Hang on folks, please remain seated with your seatbelt buckled and enjoy your ride. Something tells me this train is about to leave the station.

There’s power in that purple ribbon!

Copyright © Gatewood Campbell, December 2011