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

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

Here We Go Again, with a Little Less Energy but a Little More Hope

No one told me there is no quick fix. Why don’t they tell you that? I have never been much of a patient person. Don’t ask when I can drive again. I quit counting. I really don’t know. There is still no cure for this cursed thing called epilepsy. This morning I read about a child in Charlotte who is literally dying from her seizures, having tried 19 medicines a day and nothing is helping. When is enough enough for someone to realize this is serious stuff? People are suffering! Epilepsy is serious business and it changes people’s lives every single day.

I’ve been on a new path for several months now. I’m seeing a new specialist at Duke, thanks to the handiwork of my Mom. I had some tests done that showed I was normal…or something like that. Who says that to someone with epilepsy? So in lieu of further lengthy and highly unappealing testing I opted to change meds again. Frankly, I’m a wimp and the medicine seemed easier. I figured after a dirty dozen what’s with another one, right? The doctor said if things are going ok and this is the person we know then we can keep things the same. With resounding force I’m fairly certain Johnny, my Mother and I nearly knocked him over when we said “No, this medicine is not OK.” I will admit, I knew it was bad but when I saw Mom and Johnny look at the doctor and tell him this is not the person we know, it made me so mad that this disorder continues to rob me of so much. And it robs me of things that I don’t even realize! Johnny will say that I’m repeating myself, but I’m certain I’m not, so I have to continue my point because I haven’t made it yet, so I continue repeating myself, and he continues telling me I’m repeating myself…thus the rinse and repeat cycle goes on endlessly. For those that know me well, you can picture me rolling my eyes here right?

So, here we are, one week into a five week cycle of changing meds. The promising thing is that I am moving to a BRAND name med. No more generic crap. We are going for gold here. We read through all my records and in the past, this medicine worked. Granted it was pre-40, so it could be different, but it is promising. It only seemed to stop working when we moved to generic. Lesson #123 at the pharmacy, always double check your prescription because they don’t always fill what the doctor writes. “Thanks, actually the doctor wrote that for the brand name NOT the generic, I’ll wait while you fill it as written.” Lesson #124 if you have a weird name they always remember you at the pharmacy and sometimes that isn’t good. Lesson #125 looking for a new pharmacy.

I’m glad to be going off the medicine that is widely known to turn you into a dope head. I simply forgot that I was going onto a medicine that keeps you in a fog for the 12 hours that you are able to stay awake during the day. I’m thankful for the internet world of epilepsy families that are always available to give advice to fight the side effects that come along with this. They have been through everything before and know what is around every corner and are so helpful with every question no matter how crazy! No one prepares you for this. If I can find a beekeeper with caffeine infused honey I think I kill two birds with one stone!

I dreamed the other night that I snuck out and took the car out and went shopping. I don’t think I even bought anything. I just went where ever I wanted. People are so gracious to offer. It isn’t about needing to go somewhere, it is about the ability to go somewhere, gripping the steering wheel in my hand. Grabbing the gear shift and throwing it into drive and knowing where I’m going without telling someone, planning it out days in advance, working out the timing and having it take four times as long as it normally would. For us, it is about maintaining some level of control in our lives. That is why driving is such a huge issue…because everything else feels so out of our control.

My patience was left somewhere, maybe on a sidewalk, a bus, or an emergency room. I think I have lost my sense of humor… perhaps this week when the boys dropped me off at Target to grab four, only four things and we ended up with a dead battery in the car. Really, I should know better. We all just shook our heads at that because we did know better. We should have gone to Walmart. I’m trying to keep my family fed, keep our house clean and keep them in clean clothes. I’m trying to make sure they get where they need to be and with the constant help of some dedicated friends that is happening. The kids are not missing out and that is the most important thing to me. I’m so SO thankful for that!

The bonds of my friendships have become priceless. There are people that I depend on when I am at my limit and need to vent because I can’t take one more minute of the unexpected. They will listen to me cry, they will carpool me around town or if Justin is at work, Johnny is sick and Hunter has to be at ball practice, these friends will drop what they are doing and come to my rescue. When Mom was in chemo and I couldn’t get to Mom, they helped make sure Mom was ok. They have been in this journey for years now. They didn’t quit on us. Recently we lost a very special friend. He was dedicated to our entire family, four generations! That presence will never be filled. His laughter will never be replaced by another soul. What he leaves is a legacy with which we learn; spread ourselves and share ourselves. Give what we can of ourselves. Be open to listening. Be open to seeing what is around you and be open to helping those around you. He invested in four generations of my family and his impact is deep rooted. This is the kind of friendship that makes me smile, and makes me shed a tear or two. Did he tell me there was no quick fix and I missed that?

Copyright © Gatewood Campbell, April 2015

Ten. This is Not a Celebration.

Ten years later…This is not a celebration. I still can’t help but wonder how things might have been different. This month, ten years ago I made that forgettable and yes still forgotten trip into you know where. Oh but if I could only remember what happened. The roller coaster began and I never even had to go to Carowinds for the wild ride. There is no anniversary celebration for this, nor a party, nor presents. I just know this date. There is a lot a can’t remember…but this…this I remember. Those blasted trash cans!

My husband is celebrating 20 years at Carolina CAT this month! Remarkable! WE ARE SO PROUD! He came home this week with his employee recognition award for his desk and a catalog selection of gifts from which to choose. I will admit, I was jealous, yes I was jealous. I started working at my job that same year. I thought I would work there forever. My heart was, and remains dedicated to the work that is being done at our church. Somehow it still seems surreal that I had to walk away.

Ten years, now what?

The good. I have been amused by the ramblings on Facebook this week during the ice storm as people have rushed to the store to prepare to be at home. I didn’t have to make the mad dash. Justin took me to the store last Friday and I have learned  how to grocery shop in bulk so that when I get a ride to the store I can get enough to stock up for more than a week. We didn’t have to fight any crowds for bread or milk! We were already prepared! I was also amused by everyone with cabin fever after one or two days of not being about to get out of the house. OK people, two days of not being able to leave your house independently is not the worst thing in the world. Oh my goodness, this was the funniest of all things to me. What made me the happiest was that not one single time did my children ask to go anywhere. They were fine being at home and finding things to do because they have become accustomed to it. They don’t need to go places and be entertained.

The bad. There is no cure for epilepsy so we are always the patient, never the survivor. Always being treated, always popping pills, reading up on the latest treatments, searching for something new. Just this week I read that the medicine I was being treated with for years, after going generic has been found to cause seizures. INTERESTING! Yep, that was the generic medicine I was taking when I started having seizures again a year and a half ago. Well if my insurance would have covered the brand name drug maybe I would not have been house bound for the last 16 months and would not have turned into a dope head on this new drug. This cycle is like that old ride at Carowinds, the one that spun you round and round until you were stuck to the walls and then the ground dropped out from beneath your feet. It leaves you not knowing how to stand again. Everything as you know it is confusing. The simplest of things on one day can leave you lost and confused, and the next day you can breeze through it without thought.

I don’t know why this path was chosen for our family. We try to educate along the way. I try to pick up the pieces when I can. Some days I can’t. This is a hard field to plow. Much of it I cannot control. The medicine I take screws with my brain in ways I do not understand and I don’t even realize. Frankly it drives my family crazy, and probably everyone who is in a checkout line behind me as well. After all these years it hasn’t gotten any easier to tell people that I have epilepsy. It hasn’t gotten any easier to explain. I worry for my children; that they will be the ones at home with me when I seize, and see me, then having to call their dad and tell them what has happened. I worry that they will come home from school and find me collapsed at the bottom of the steps. I worry that I will seize while walking the dogs and the dogs will get hit by cars. I worry that I will seize on a city bus surrounded by strangers. I worry that I will seize on a sidewalk again and wonder who might find me. I choose my walks carefully just in case. Johnny constantly reminds me that worry is a sin. I remind myself that I shouldn’t be stupid either. I have epilepsy and I have to be cautious. I’m also a mom and I want to be able to care for my kids the way I used to and giving that up has been one of the hardest things to surrender. Normal is overrated right? Please say yes.

Can I just ask you this? The next time you are somewhere and perhaps annoyed because someone seems confused and they are causing you to be slowed down, just take a few deep breaths. Grab a magazine and read some smut article to pass the time, reread your grocery list to be sure you got everything, smile and tell the person to take their time or relax and enjoy the extra few moments in your day. Trust me, you just gifted someone a priceless gift.

Ten years later. What now? I guess eleven….

Copyright © Gatewood Campbell, February 2015

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