Tag Archives: Epilepsy

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What a Difference a Year Makes

Last Christmas I was busy making sure my house was properly festive. I was buying two of everything I was supposed to cook because I usually do a test batch of anything I make that is really important. No worries, I have growing boys so they don’t complain. I was sneaking around trying to get gifts from Emmer for the children and for Mom. I was making wine store runs because Emmer always insisted she furnish champagne on Christmas Eve when we celebrate Mom’s birthday. I had ventured away from the usual birthday cake and convinced Emmer to get hand made red velvet cake pops. They were a HUGE hit and Emmer thought it was the greatest invention since the wheel.

We were also determined to have Emmer with us on Christmas. Johnny was busy building a wheelchair ramp to make Mom’s house accessible. I worked diligently for days to convince Emmer that she could make it to Mom’s for our traditional Christmas Eve shrimp creole. She told me it was too much work for everyone. I remembering sitting beside her chair, holding her hand and explaining that it wouldn’t be Christmas knowing she was in her room alone. She came for Christmas Eve dinner. She dined on shrimp creole. She scooped up her Charlotte Rousse, made by yours truly as a bribe to get her to come to dinner. She drank, um maybe even guzzled her champagne (until the day she died she wanted a refrigerator in her room so she could have her own cold drinks). She sang Happy Birthday to my Mom when we brought out the cake pops. She delighted in the excitement on the boys’ faces when they opened the WiiU she gave them. She tried to understand what exactly she had given them and finally she just said “well cheers”! She was weak, but more than that she was determined. Determination always conquered her weakness.

As we sat around the table that night with friends we have shared Christmas Eve with for decades, I think we all knew it would be her last. I think she knew. Lord knows she had been ready years before for it to be her last, but her body just kept on ticking. She was frail, but she looked beautiful. She had on the outfit and jewelry she and I had chosen earlier that day. She wasn’t pleased with her hair because her weekly beauty parlor appointment had been 5 days before and by then it sorta showed. It had been her bath night the night before so she felt clean and smelled sweet. She was determined and I am so thankful we had that Christmas together as a family.

This year the shopping has been different. I can’t store hop for everyone so if you were lucky enough to have your gift purchased before Dec 2, you are lucky. If not, well then you are lucky to get something. I haven’t had the energy to decorate so we hung stockings and put up a 4′ artificial pre-lit tree. I put my Grandmother Payne’s angel topper on it, hung some balls on the tree and called it quits. I feel guilty letting weakness beat out determination. That is not the way I was taught. But this year I am worn down and I ache.

The shock of the last few weeks has been overwhelming. The reality of my future with epilepsy is beginning to sink in. I am just beginning to understand that I really am going to be taking medicine for the rest of my life. There is no cure. I went 8 years without a grand mal. I had learned to cope with small seizures here and there, but this caught me off guard. It took the breath out of me, in more ways than the obvious. I realize that I will always be planning for the what if. On the bright side of things I did get some new jewelry, granted it is a medical ID bracelet, but it is purple and it is jewelry so I will take it. I hope the day will come when my husband, my Mom and my brother don’t feel like they need to call me every few hours to be sure I’m ok. I want my children not to worry about their mom. I know there are a multitude of people waiting to help me at a moment’s notice. I need to know that I can figure out how to cope with the inability to drive on my own, so that I won’t live in fear of another bad seizure. I need to know that at 40 years old, I can have some form of independence. I have been shaken and I’m still stirred right now.

This has not been the most stellar of years for us, but I wouldn’t go back in time, because I really do NOT want to relive it again. I remember with bittersweet tears our last Christmas with our matriarch and I know my Mother is equipped to hold that torch now. I take tremendous joy in the 6 years I had with Emmer and her first mate. Her humor, her honesty, her debates, her tears and her bountiful love for her family are simply unmatched. Nothing can take away those memories. It was her bountiful love that gave her the strength to have one last Christmas with all of us. It is her gift that keeps on giving.

So I look back on 2013 with joy and sorrow swirled together. I also find it appropriate to quote the great philosopher Flo, and say, “2013 you can kiss my grits.” I’m pretty sure Emmer just rolled over in her grave as she quietly explains away my candidness from a brain injury. I’m stirred, I’m afraid, but I am determined this will pass. From this point of view I must believe it only gets better because in my darkest hours over the last 8 years I can look back and see the sun was always streaming through the clouds.

© Copyright Gatewood Campbell, December 2013

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We Are All in This Together

I have been overwhelmed by the love and support we have received since my seizure. I cannot begin to describe how my heart has swelled by your outpouring of words, deeds and more importantly honest love for our family. Thank you.

A little over eight years ago I had my first grand mal seizure. We were all surprised, desperate to learn, desperate to recover and convinced that we should keep my diagnosis to ourselves. That was wrong, but the reasons were all legitimate. People are afraid of epilepsy. Not too long ago people suffering from seizures were institutionalized, called unproductive citizens or presumed to be demon possessed. Can you imagine? I could be living and working alongside all of you and then after a seizure be forced to leave my family and spend the rest of my life over medicated and away from my family! Much like cancer, epilepsy does not discriminate. I could bore you with statistics proving the prevalence of epilepsy, but that is not my point.

I am almost embarrassed by your comments of support and love. I am not working to overcome anything more difficult than the things all of you overcome every single day. As a matter of fact, almost everyday I tell God I am thankful He gave me epilepsy and not some of the heart-wrenching difficulties that people I know face each day. YOU are overcomers! YOU are an inspiration! YOU are amazing! YOU teach me to see the sun through the shade. YOU teach me to persevere and get out of bed on days when I would rather pull up the covers until the kids get home. YOU teach me that it is right to be different, because we are all different. Life would be terribly boring if we were all the same. We must never be ashamed to be exactly the person God created. He formed us in His image. God is perfect. So, as far as I am concerned God created us all in the perfect image He desired.

Your love keeps me pressing on. Your love continues to restore my faith that humankind is good. Your love shows me we will get through the next 23 1/2 weeks and that we will be stronger. Your love proves that when we can’t walk, we are carried; by prayers, by actions and by unending support in ways we did not know we needed. Thank you for inspiring me by fighting your own battles. Thank you for teaching me that strength lies in being honest about who we are and by being unashamed of whatever “faults” we may think exist.

You are amazing, inspirational, determined and down right fantastic. Thank YOU for teaching me how to face fear and stomp on it with optimism. You are my heroes and I am eternally thankful for the stories you tell through the lives you live.

© Copyright Gatewood Campbell, December 2013

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Thankful in all Circumstances

One thing I have learned is to expect the unexpected and just go with it. There is no point in wasting good energy on asking why. That question is not likely to be answered. My responsibility is to recognize the multitude of blessings we have and remain thankful, regardless of circumstances.

One week ago I was shopping in Midtown Charlotte. I had eaten a healthy lunch and wandered around the fun shops. Like all responsible citizens I used the pedestrian walkway to cross the street. I had safely crossed the right turn only lane and was waiting for the “walk” signal as I stood on the pedestrian median to cross four lanes of traffic. I don’t know if the “walk” light ever turned. I don’t know if I stepped into traffic. I DO know that God was with me.  I woke up some time later in the ER and I did NOT like having to wait on a gurney at the nurse’s station in the ER. Those that know me up close and personal might imagine that I had expressed my opinion. A busy nurse heard my plea to be moved and told me I had to stay there because I had a seizure and was being observed. My head throbbed, but something inside me giggled. Really, seriously? Right before Christmas? This is so inconvenient. I remember staring at the ceiling as if looking into God’s eyes and saying “Got it, slow down.”

As I lay there, watching people far sicker than me, be wheeled up and down the hallway for various tests while their family members sobbed, I knew I was blessed. I knew the ramifications of the seizure would be 6 months without being able to drive a car (and apparently tractors according to my doctor). I also knew that I was alive. No driving for 6 months was a very small price to pay and I felt blessed that I would walk out of the ER on my own two legs. Hours before, I was at the intersection of 5 roads, I was alone, I had blacked out during a grand mal seizure and I was still alive. Tell me God doesn’t perform miracles and I will show you an example that proves He does. Johnny arrived quickly and in the calm way he has come to deal with difficult news about his wife, he assured me I would be fine. I wanted him to call my best friend. He did and she came right away. I wanted to talk to my brother but Johnny insisted I wait to call him. Another thing I have learned is that if family is long distance you call after the storm has passed, not in the midst of the storm. I remember being overwhelmed with how fortunate I was among so much sorrow.  I also remember telling Johnny not to touch anything or we would end up catching the flu. Delirium is a funny thing. As I slowly recall different things about that day I laugh, I cry and I thank God that He was with me.

The lingering soreness of a seizure of that magnitude is pretty much gone now. I would love for someone to explain how I stretched my shoes though! No worries, someone will take me to the store to get inserts to fix that. I have 2 staples in my head to patch up some of the cuts on my head. Guess what? I am thankful for that. Recently I spent some time at the cancer center where people much younger than me, covered their hairless heads in scarves. I walked away with a new perspective in its’ rawest form. I am thankful my hair covers the scars. Thankful in all circumstances; that is indeed where I am.

I am alive. I am thankful for breath. I am thankful for no broken bones. I am not asking why. I am accepting God put me here. In a strangely awkward way I am thankful my Grandmother did not have to live through this.  It would just be so hard for her.  I am left with the life lessons she gave me. She prepared me for times such as these. She taught me to accept whatever comes my way and find a way to make the best of it. I’m a marathoner and I don’t think it is just a coincidence that 6 months is also 26 weeks and a marathon is 26 miles.  I am thankful for the opportunity to face 26 weeks and see how God shows Himself as the mighty conqueror over the next 26 weeks. I am prepared to bust through “the wall” with a force of family and friends that will break down all barriers.

I am blessed in ways I can not explain. I am thankful in ways I can not begin to explain. I am not asking God “why now” or “why me”? Instead I just want God to show me how to use this time to point others to Him. My cup overflows with thanks, in all circumstances.

© Copyright Gatewood Campbell, December 2013

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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

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Erasing Expectations, Embracing Grace

September was a notable month for me this year. It marked my 40th birthday, which was celebrated in grand style with some wonderful friends. I felt so loved…so unbelievably surrounded by love. Late September is also the anniversary of my first grand mal seizure which eventually, and quite frankly, thankfully, led to my epilepsy diagnosis. It’s a date fixated in my memory with visions of looking across a store and looking at my 2-year-old. Everything inside me was screaming for help, for my son and for myself. I had no clue what was about to occur, I just knew something was terribly wrong and I needed someone to help us. I awoke to a sore arm where I landed on a clothes rack, another huge bump on my head and a bleeding tongue. I had the pleasure of one more escorted ride to the ER.

Eight years. It seems like an eternity and yet it seems like yesterday. I have had a hard time with this 40 thing. I’m so far from where I thought I would be at 40. Ten years ago I was pregnant, well actually about to blow a major-gasket-size pregnant, with our second child. We knew he would be our last, because hell hath no fury like a woman who has thrown up everyday for 9 consecutive months. This one was it! In my mind I was ready to settle down with our two children, adjust to a change in jobs at CAT for Johnny and find my niche in my own career at the church which was experiencing growth in monumental proportion. My plan went smoothly for a couple of years.

And then God reminded us all that He, and only He is in control of our lives. In the blessings, in the joy and in the abundance, we forget to run to Him. We forget to ask Him to guide us, to ask Him to forgive us and to ask Him everyday to be the light in our lives and let us reflect His life saving light. I had forgotten that God gave me breath, that He chose Johnny and me to raise Justin and Hunter. I had forgotten to thank Him each day for my husband, my children, my home, provisions for all of us and most importantly for sending His son Jesus for me. He knocked me off my feet so I would draw near to Him as my comfortable world around me crumbled. I guess the first time didn’t work, so He tried a second time to get my full attention.

Last week as I was running I passed a church, well actually I passed 6 churches on a one mile stretch of one road. You know you live in the heart of the south AND the Bible belt when there are 6 churches on one road within one mile. Seriously, if everyone joined forces can you imagine the power? Oh well, that is another topic for another day. Anyway, one of the churches had a marquee about the coming week’s sermon. It said “Erasing Expectations, Embracing Grace”. I ran past that marquee several times last week and each time it really struck a chord with me. My 40th birthday had me thinking about the expectations I had once had for myself. It had me thinking about my failures. My, my, my. Not once had I thought that perhaps I had accomplished the expectations God had for me. I was too fixated on what limitations I now have from my brain injury and from the epilepsy and where I might have been. I forgot that God brought me to this point in my life because He loves me. God gave me His grace to get me to this point and I had forgotten that my life is about fulfilling His plan, not my own. I have sinned in forgetting His grace surrounds me daily.

In 2 Corinthians 12, Paul writes about his thorn in the flesh and pleading with God to remove it. Some think Paul may have even been referencing epilepsy. I too have pleaded with God to remove my own thorn in the flesh. Just as God chose my husband for me, chose me as the Mother for Justin and Hunter, He chose me to have epilepsy. I never questioned the blessings of my husband or my children, yet I questioned epilepsy. Perhaps, God blessed me with epilepsy too? When Paul pleaded with God, God spoke to him and said in verse 9, “My grace is sufficient for you, for My strength is made perfect in weakness”. Well what a fool I have been! Paul reminds us that only in our weakness, our infirmities and our distresses is the almighty power of God displayed. God makes us weak so that we will trust Him, lean on Him, thank Him for our daily bread and our daily breath.

What if I wake up tomorrow with no expectations and just embraced the grace that God gave me to allow me another day? What if I face each day erasing my expectations and asking God for encounters with Him? It’s about perspective. Is the glass half empty, or is it half full? Is God part of my life, or is He my life…the source of my life?

“Trust in the Lord with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths.” Proverbs 3:5-6

© Copyright Gatewood Campbell, October 2013