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Ten and Then…

Ten years ago my doctor uttered the word epilepsy to me. We were glad to know what we were dealing with, but dealing has not always been easy. I look back on those six or so years I was seizure free and I long for those days again. I remain hopeful it will happen. I haven’t given up hope that a cure will one day be found for the millions of people suffering from the invisible disease.

Epilepsy and then what? Well, I discovered I wasn’t cut out for a career anymore but I was still cut out to be a wife and a mom. We set aside other goals and ambitions and small things like waking up each day with time to cook breakfast for Johnny and the boys before work and school became a joy. I love being able to hug their necks when they leave and being home and see their eyeballs when they come home in the afternoon. I will always remember the excitement Justin had when he was in the 3rd grade and we told him he didn’t have to go to after school care anymore! He was over the moon! He is a senior now and this time next year he will have left our nest. It makes my heart sing to have these years with the children. Epilepsy gifted us this time. It has given me far more than it can ever take.

Ten years later and then what? Well, I will survive the humps in the road. I can look back and see that now. This current hurdle will pass. My children are smarter from learning about this disease and being more aware of the people around them, their struggles and their victories. We survive because love always wins. When love is the heartbeat of a family, family wins.

Ten years past, and in ten more years you can ask me again. Then what? I will tell you again, I’m still winning.

Copyright © Gatewood Campbell, September 2015

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Yep, This is the Freak-Out Zone!

Welcome to the crazy train! Sometime yesterday I officially hit the freak zone.

In my reckless attempts to clean house, make schedules for the kids, wash clothes, write thank you notes, make lists of things I need for Duke…and breathe…I hit the freak zone. Reality struck. I just tried to breathe.

This morning I woke up thinking wash sheets, wash towels, mop floors, clean baseball uniforms, remember to check on this and that so it can be added to the schedule. My brain was mush. I double checked to be sure I had taken my brain meds…check..so I should be able to think more clearly than I was. I was running in circles and getting nothing much accomplished. I felt like the list was just growing….out of eggs, out of bread, out of turkey, need stamps, need TO BE ABLE TO DRIVE! I need to have some control! And that is where I stopped. So here is the truth, I talk out loud to myself. I stopped spinning and said “in my weakness, He is strong”. Then I pictured the Incredible Hulk in all his green glory busting out of his clothes and roaring to my rescue. Yes…I did just make an analogy of the Incredible Hulk to God, but forgive me, I am a visual learner. I needed to SEE God rescuing me.

I realized I needed to sit down and stop and find His presence. I opened my devotional and…YES…I did laugh out loud! No joking! First words…“Living in dependence on Me is a glorious adventure” and then it continued “You accept weakness as a gift from Me, knowing that My Power plugs in most readily to consecrated weakness. You keep your plans tentative, knowing that My plans are far superior.” I actually looked back at the date on the page and then went straight to the calendar to be sure this really was the devotion for this day because this puzzle just fit together too neatly. Yep, September 2nd. I sat back down and reread several times, scrutinizing each sentence, each phrase and the scriptures.  This was just all too freaky! At the same time this is my God. He meets me where I am and brings to me all that I need each day to get through.

Control has always been hard for me. Losing it has felt like a death of part of myself. I have lost the ability to make so many choices for myself. Sometimes it is little things like wanting to listen to my own music in the car, wanting to select the air temperature in the car or just wanting to open the car door from the driver’s side instead of the passenger side. Here is the deal, control was never mine to begin with. Control of my life is in God’s hands. Yes, I am weak. That is ok, and apparently I am supposed to be weak! God is stronger, He is stronger than the Incredible Hulk and He will continue coming to my rescue. He will calm me and bring me to dependence on Him instead of trying to depend on myself.

I reminded myself that this freak show crazy train that I’m riding right now as I prepare for Duke is because I have the opportunity to get better. I have to focus on the end, not the process. We have prayed for me to be better and this is the beginning of that process. I don’t know how long this part of the process will take, I don’t know how hard it will be both physically or emotionally, and I don’t know if it will give us the answers we need. What I have to focus on is that God is calling me to depend on Him, for all the little things and for all the big things.

Yesterday I had lunch with some good friends from my gym. They gave me a beautiful necklace with a purple stone, which they remembered is the color for Epilepsy Awareness and a charm with the word “strength” inscribed. They said when I feel weak, touch your hand to your neck and remember you are strong and remember the many people who are praying for me when I am weak. They told me I was strong and I am not alone and to focus on the strength that is given to me.

Nope, I indeed am not alone. I am surrounded by more people than I can count and they are pouring out their love and their prayers on behalf of your family. This fulfills my need for a visual picture of where I am right now. Most importantly I have to rest in God’s hands and know that I must start each day anxiously waiting to see what God will do and where He will move today.

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Copyright © Gatewood Campbell, September 2015

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Overwhelmed with Gratitude

Friends and family, you have overwhelmed me with your love and support that you continue to show in a variety of ways. I really just have no words to express how you have filled my heart and reminded me that this will be ok. I have tried to respond to each of you individually but some days I have failed to get back to you. Forgive me for that and please understand that part of what I am doing is trying to be a bit easier on myself and lessen the pressure I have always put on myself to be everywhere and do everything regardless of how it might adversely affect my health. I am trying to simplify things as much as possible, with a rising 6th grader and a rising 12th grader while on drugs that make me certifiably crazy! I am going to miss Hunter’s first baseball games this season so if anyone wants to head up a highly obnoxious cheering section for my little catcher, I would welcome that! For now I am trying to be available for my family, prepare them for school and make sure I am comfortable with the plans for the kids while I am gone, especially not knowing how long I will be gone. I am reading your messages, your cards, your emails and listening to your voicemails. You give me strength to move forward into this phase and I am SO thankful for all the prayers being lifted on my behalf. People have already begun bringing meals and it is tremendously helpful. Stores are not exactly a comfort zone for me given recent events so the meals are feeding my soul. Thank you for the reminders that people are good, that people love and that people want to be involved and help us over this hurdle. Everyone can help by praying for one thing…answers. The last thing I want to do is put my body and my mind through this and not have any answers. I feel as if I am surrounded by a circle of love that is lifting me up and carrying me through this uncertainty and helping me overcome the stress and anxiety. You can always reach me via email at gcembracingchange@gmail.com.

I love each of you and I remain overwhelmed with gratitude that you are in our lives.

Copyright © Gatewood Campbell, August 2015

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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