Tag Archives: Epilepsy Awareness Month

by

He Loves Me This Much

The days seem to be getting longer and the walls around me are a bit smaller. This year has been long. It’s not over yet.

Every morning I kiss my three man boys good bye and I turn and look at my dogs. We sort have this stand off and I have this looming lump in my throat hoping the hours while the kids are at school will pass quickly. The house will be too quiet and I will be alone again. This has been my routine for nearly a year now. Laundry, cleaning, dishes…pretty boring. I almost put up the Christmas tree last week. I thought that was pushing it. A year… I have learned so much about myself and my God in this last year.

As God as become my constant listener and best friend, I have heard Him too. He loves me this much that He allowed epilepsy to rest on me. There is no answer to why. There is no answer to what will happen next. There is no real reason to fear, because God is always in control, and God always loves me. He will never, ever leave me. Don’t get me wrong, this disorder hurts, the isolation, fear of the next seizure, or straying too far from home all scare me, but with God’s help I try to overcome these things as much as possible. God is sovereign.

Our whole family must rest in His sovereignty or we wouldn’t survive. How would my husband get through a workday without trusting God to care for me? How do either of us get through any day at all with our son on the road now without trusting God to watch over him? I venture out alone because I have to feel some independence. Is there some danger? Sure. Is God in control? Absolutely. Ultimately, in my deepest being I believe God is a kind and loving God and He wants me to depend on Him with all that I am. I think epilepsy is the only way I can do this…grrrr… So he loves me this much. He chose this for me. So my choice is to love Him back, trust Him, and depend on Him for whatever comes next.

November is National Epilepsy Awareness Month. Honestly this last year has beat me down that I’m too exhausted to creatively and energetically spread the word. That frustrates me too. Johnny tells me I’m too hard on myself, but 1 in 26 have this and 60,000 in the US will die from Sudden Unexpected Death in Epilepsy, so this still needs a voice. Locally, Mayor Swain signed a Proclamation declaring November as Epilepsy Awareness Month in the Town of Huntersville. My son is having the annual Purple Day at Huntersville Elementary on Nov 14 and Mayor Swain is even stopping by to visit the classrooms and help spread awareness that day. Would you wear purple on Nov 14 to support Hunter’s Purple Day too? Our family is in purple everyday this month, but for one day, that would be pretty cool. Johnny and I were in Charlotte Sunday night to see the Duke Energy building shining purple over Charlotte. More people are talking, less people are whispering, more research is being done, and maybe one day we will have a cure.

Until then, I rest in the peaceful knowledge that God loves me this much, He didn’t give me this and then forget me.

Copyright © Gatewood Campbell, November 2014

IMG_0669.JPG

Advertisement
by

It Matters

We are just a couple of days away from the start of National Epilepsy Awareness Month. Our family and I have been working together to come up with original ways to incorporate Epilepsy Awareness into each day of November. We will be headed to Charlotte on Friday November 1st to see the Wells Fargo Duke Energy Building in all her purple splendor. The Epilepsy Foundation of North Carolina is thrilled that this building will again light up purple to show support in Charlotte. The following day our family will be attending the Epilepsy Foundation of NC Annual Fall Stroll at UNCC. Hunter and his friends are making purple Rainbow Loom bracelets to sell with all money going directly back into the foundation. The Town of Huntersville has jumped on board and Mayor Swain signed a proclamation making November Epilepsy Awareness month right here in town.

Amidst all the excitement, today I opened Facebook to read about a life lost too soon. A beautiful 27 year old woman from Maryland, taken by SUDEP (Sudden Unexplained Death in Epilepsy).

http://www.clarkstonnews.com/Articles-News-i-2013-10-30-253051.113121-sub-Parents-warn-of-epilepsy-sudden-death.html

I paused, for a long time and looked at her picture, thought of her future that is now lost and I thought of her parents. It reminded me to keep talking, keep sharing and keep pressing on with my purple ambition to let people know why it is so important that people simply know the facts about epilepsy.

I have seen so much change and conversation in the few years that I have become involved with Epilepsy Advocacy. It matters because people matter. Please start off November right by wearing purple and TELL people why! Email me if you want a ribbon to wear and we will mail you one homemade by the Campbell family.

© Copyright Gatewood Campbell, October 2013

by

One to Wear, Three to Share

It is November 1st! I have waited 11 long months for Epilepsy Awareness Month to arrive again! Last year was a new adventure for us and I was just getting my feet. It was only the beginning of letting people into my world. My family supported my efforts for 30 days by wearing purple, wearing and sharing purple ribbons, holding purple days their schools and encouraging me to be proud to be me; epilepsy, brain injury and all.

As I sit here now in my purple shirt, purple shoes, purple earrings, purple bracelets and purple ribbon, there is still a part of me that wants to gulp when people ask why I’m wearing a purple ribbon. Will it ever be easy to say “I have epilepsy”? Will I ever stop fearing the response or the stares? Will I ever stop that twinge of madness I feel when the alarm on my phone rings and I know it’s time to swallow more pills that will upset my stomach, confuse my mind, slow my speech and make my hair fall out? Will I ever stop fearing that SUDEP will take me during the night? If I’m completely honest, probably not. But living in fear is not living. So I’ll choose to live in awareness and share what I know and what I have learned, because I can’t let fear win.

Six months ago I decided to celebrate Epilepsy Awareness Month by joining the Epilepsy Therapy Project and running the Philadelphia Half Marathon on November 18, 2012. I knew I could run 13.1 miles. I assumed I could convince my Mom to go with me and make a complete nuisance of herself by decking out head to toe in purple and yelling my name all over Philly and pretending to be Rocky on the steps of the famed Art Museum. I even thought I could convince a friend or two to go and run with me. I truly had NO idea my friends would jump on board like they have! Seven other runners teamed up with me and have helped raise a lot of money for the Epilepsy Therapy Project. A lot of generous people and businesses have supported our cause and dug deep in their pockets. The outpouring of financial and emotional support has warmed my heart and given me great hope for the future of treatment for epilepsy.

This morning everyone in our house pinned on purple ribbons. When Justin left for school at 5:55 am, he had on his ribbon. When Johnny left for work I pinned a ribbon on his shirt. When Hunter got ready for school, one ribbon just wouldn’t do. “I’ll take three to share please.” Most people would put them in their pockets. Not my Hunter! He proudly pinned them all over his shirt, ready to tell the world “my Mom has epilepsy and that’s just fine. Here’s your purple ribbon!”

It’s November, and it’s Epilepsy Awareness Month! I am excited about a month of fun adventures, including seeing Charlotte uptown light up purple on November 15 when Wells Fargo’s Duke Energy building turns purple for team Shaken, Not Stirred! We are all wearing our purple ribbons and we have more to share!

20121101-110126.jpg

Copyright © Gatewood Campbell, November 2012