Hold On!

“Hold My hand.”

Those are the first words to my devotion today from Jesus Calling. I stared at those words in awe; in awe of a generous, loving and wise God who gives us what we need right on time. And then it got even better. “I know every step of the journey ahead of you, all the way to heaven.” 

I know I sound like a broken record, but here I am again. The seizures haven’t stopped even with my brand name meds, which we had hoped would work. Most of the seizures have been small, short and manageable. I’m not sure at what point in my life I decided seizures were “manageable” when they are still happening, but that is where I am. It is not where I want to be. This past weekend I was in the grocery store. Hunter was with me while Justin kept the car and A/C running and I only needed a few necessities. In a matter of seconds I realized that something was off. I wanted to get to the car, and fast because this off was no good. Hunter pushed the buggy in front of me towards the door. I called for him to wait. He thought I forgot the bread. I wish I had just forgotten the bread. I stopped, grabbed the counter and held on. The world around me began shaking violently and I tried with all my might to focus on a sign. When I couldn’t, I knew this was going down now and this was going to be bad. I screamed “I need help!” An angel who was checking out near me turned and asked what was wrong. As I felt my knees begin to buckle beneath me I said “I’m going to have a seizure.” I asked her to help me get down on the ground and she gently guided me to the floor, slipping my shoes off and repeating “you are ok.” All I knew was I wanted down on the ground before the seizure took me down. As I have told people before it is all about saving the head!

The next few minutes were chaos. I could feel someone behind me keeping me upright, people were asking who knew me, store employees were yelling to call the ambulance and my angel customer was trying to find her reading glasses to make out the phone number on my medic bracelet. I was frozen, well not really, I was convulsing, but I was frozen, watching my 11 year old holding onto the buggy for dear life and trying to explain that his mom has epilepsy, his brother was in the car and calling out Johnny’s phone number all at the same time. As I watched my body, completely out of control and my son, now forced to be in control my heart broke. This was so NOT ok! Hunter rushed to get Justin. Like a man he calmly appeared, grabbing me and looking me right in the eyes repeating that it would be ok. He told the store manager I didn’t need an ambulance and he could handle it. My angel customer remained by our sides. Finally the seizing stopped and my tears and confusion started. Oh this scene… way too familiar and now far too often. My same angel took Hunter and loaded the groceries into the car and left Justin with me. As I sat on the floor, shoes off, between the customer service desk and the checkout line I wondered what people must think and how in the world did all of this happen? How in the world did the last nine years happen?

This sucks. I have no other words for it. Not being able to be the person I want to be, not being able to do what I want to do; it all sucks. That sums it up.

When we got back in the car I was able to talk to Johnny on the phone. With his voice of reason and strength, he told me we had tried every resource we had and it was time to call the doctor and push forward. So this is where I am, on this path with really no options. So we push forward. On September 8th, I will be admitted to the Epilepsy Unit at Duke. They will take me off all my meds and hook me up to machines and monitors and we will wait for me to have enough seizures that the doctors can identify the part of my brain that is causing the problem. Someone will have to stay with me all day and night and I won’t be able to leave the room. This is our last resort. That means this is our last option, not a Resort where we look forward to staying.

I did not want to do this. I have fought this option for months. Who actually asks to have seizures? No meds? Are you kidding me? I know I will be safe and it could lead to answers but the emotional and physical strain seems unbearable to me.

Then I opened my devotional and it said “Hold My hand.” Huh, sort of profound. “I will guide you carefully along today’s journey. Don’t worry about what is around the next bend. Just concentrate on enjoying My Presence and staying in step with Me.” Well now, straight up, I do NOT want to be out of step with God. Though when I get to heaven I want to know why He didn’t make my steps a little more sturdy, but I want to be in step! This weekend, just hours before my seizure our Youth Pastor said something so simple yet so huge it took my breath away. He reminded us of the saying we repeat that God will only give you what you can handle. He told us that was as false as it gets. He told us that God gives us what we need so that we continually look to Him and put all of our faith and our trust in Him. Holy guacamole Batman! I never ever thought about that. Yes, God will constantly guide us to put more faith and more trust in Him. This isn’t a test, He is just reminding me that He is God. He is in control, and I must relinquish control to Him. He has got this and He has had it all along AND He knows what is around the bend. Take His hand and follow.

I’m scared, don’t misunderstand. I do not want to do this, but this is the path God has set me on and He will not leave me. I never know what this blog is really accomplishing. Am I shedding light on this unseen, sorely underfunded and misunderstood disorder or is it a source for me to compile my thoughts in an organized way so that I can see God’s hand at work? I hope it accomplishes both. It is a way for me to reach beyond my walls that continue to close in on me and speak to a world about what millions of us experience everyday. I’m scared and I know everyone reading this has experienced fear and survived it. You give me strength to face tomorrow.

I covet your prayers, I covet your generosity and I covet your love…for all of us. Know that my faith in this process begins with my faith in My HUGE God. I’m putting that in print, so please remind me, when I question, when I cry and when I fail to look to Him to see me through, please remind me that He is holding my hand. I AM holding onto Him and this will be ok.

As a side note, we will be welcoming help with some logistics… transportation and meals, while I am at Duke. More on that to come. I thank you in advance for your help!

Copyright © Gatewood Campbell, August 2015

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18 thoughts on “Hold On!

  1. largelifesmallfootprint says:

    “Brave in all things…..” applies to you, too. I’ll remind you, and love you, and literally hold your hand when I can.

  2. Leland Park says:

    God bless (He will!)  I know And you are still on this oldguy’s prayer list. Love and hugs , Leland 

    Sent from my Verizon Wireless 4G LTE smartphone

  3. Marisol Fisher says:

    Love this post – so sincere and so full of trust and hope. Let me know how to help. 🙂 Best wishes and prayers to you and your family. Love ya!

    Mari

    Sent from my iPhone

    >

  4. Kathy says:

    Gatewood, you are so very brave, and I so wish you didn’t need to be. And you are so very faithful, which is inspiring. You have raised your sons to know God’s love, and they will be fine. Happy to help when you are at Duke, which is a last resort but it may also be a beginning to a more predictable and peaceful life.
    KBray

  5. Meg says:

    I love you so much and feel for you! If there is anything I can do from so far away I’m happy to help!

  6. astridswords says:

    The only thing that will help you to endure having those meds taken away and having more seizures is knowing that you wish to have those answers. I have also had to face that obstacle. Focus on the more peaceful life is a great help. Best wishes for you on your next journey.

  7. Diane Broyles says:

    Oh Gatewood my heart is breaking. Will be happy to come sit with you at Duke. Praying for you and sending love and hugs. Hold On!

    Sent from my iPhone

    >

  8. Laura Riley says:

    Dear Gatewood,
    I have always been so impressed and inspired by your words. Thank you for sharing so much of yourself with us. Some of the little children with whom I work have seizures, and it has helped tremendously to be able to see a piece of their world through your eyes. So… if you are wondering, as you said, what your blog is accomplishing… please know that you are reaching not only the people who read your blog, but many others.
    Love, Laura

    • Lucile Jackson says:

      Dearest Gatewood,
      Thank you for sharing your reality of which I’ve been completely ignorant. Reading your clear, passionate encounter at the grocery store with your boys will always be the moment that I began to understand the heartbreak of your battle with Epilepsy and the courage inside of you.
      I am truly sorry that your beautiful, intelligent self has had to deal with this illness at all, but as a mother, wife, daughter, friend, and fine human being even more.
      Your going for the new treatment with its challenges is in step with who you are.
      It is easy for me to say “Hang on”, but you are not alone, and your faith and friends who love you are hanging with you.
      Much love to you,
      Lucile Jackson

  9. Edith kuhnle says:

    All love. Your writing is powerful, and has given much awareness.
    We will be thinking of you at Duke, and anxious to hear about your journey…
    With love,
    Edith Kuhnle

  10. Lynne Goney says:

    Gatewood, I just read this and it brought tears to my eyes. I had no idea that this had happened. You have such strong and faithful sons. It makes my heart smile when I hear/read how amazing, caring and loving they are with you, they are truly a blessing! I pray for you and your next step on beating this! You know I will do anything I can to help with the boys and Johnny. I’ll be looking for the link on your Facebook page to sign up! I love you girl! Hang in there, Gods got you!

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