Category Archives: Perseverance

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Just Like That… It is 2016

As if in denial, today I finally flipped the calendar over to January 2016. For those expecting me to be somewhere over the last 4 days and I wasn’t there, now you know why. I never looked at the calendar. Time keeps passing, as my Grandmother used to tell me it goes faster and faster and then one day it is as slow as a turtle.

Last year was a fun year for our family. Our oldest, a senior now, has been working a part time job for over a year now. He is drumming with several bands and lives in a room busting with drums, cymbals and a small corner which some may call a bed. And yes, he is a happy 17 year old in his element. We are anxiously waiting for college letters but his first choice is already IN so the pressure is off. I’m proud of that kid. He is an adult in so many ways and takes care of far more than many other kids his own age. He manages to take care of his brother and me anytime his dad isn’t with us. He steps in and as if by nature he fills whatever role is necessary. I’m finally getting used to looking UP to him in stature and he is showing us each day other reasons to look up to him. He is an incredible example for his brother and he is all that I wished for in a son. It seems like yesterday when I heard that sweet little nurse down the hall whisper “she’s pregnant” and now he is ready to fly away from our nest.

Our youngest is in his first year of middle school. He has adjusted well, although there were minor problems when the kid with whom he shares a locker kept accidentally butterflying their locker. That means locking it with the lock facing the wrong direction. With some detailed instructions from Hunter (and I will tell you with Hunter when he wants to tell you something he doesn’t just tell you in detail, he acts it out in detail) the locker situation has been fixed and he seems to be adjusting just fine. He is still playing baseball and loves every second on the field, in the backyard or in the batting cages. Johnny finally gave in to getting grass to grow in the front yard bare spots for the pitchers mound and the bases. It was a fight we would never win anyway. It is so fun to watch kids at this age as they begin to find what they enjoy. He loves his time with his friends and he loves his down time in his room with a good book. In so many ways he is the opposite of his brother and yes also, everything I wished for in a son. I am a lucky mom with the best of all the world.

Last year, as I looked into 2015, my hope was for a cure for epilepsy and seizures. We went to great lengths to find that. According to doctors we did not get the answers for which we went searching. Here is what I do know, my entire family and fellowship of friends will surround me with every anticipated need I have when the occasion arises. My mother will put aside her life for 9 days and take on mother/father to a tween and full fledged teenager at the drop of a hat. The house will stay clean, the kids will wear clean clothes, the dogs will stay fed and walked (bribing a 12 year old is legal in NC when you promise a car ride to school) and my family will eat much better than they ever have in their lifetime when we need it. My marriage can survive being locked in a 10×12 room, eating bland hospital food, with nothing but a lame cable network to pass the time for 9 days. Oh and not one time did he tell me I smelled bad which I KNOW I did after all that time hooked up to machines 24/7. My husband willingly became an expert on “Say Yes to the Dress” and I binge watched every episode of “Big Brother” in 2 days, yay Netflix. Thanks to some very special friends we had some hand selected meals brought to us along with good visits and some special treats delivered from family and friends from the UPS dude. He became a frequent visitor to our room and brightened each day.

I was determined that 2015 would be the year of my cure. The egomaniac doc on call insinuated the 9 day stay had been a waste of time because he didn’t find anything helpful. He was wrong. My cure is life.

What I found is that I can survive anything as long as I have my friends and family surrounding me with prayers and love in action. 2016 is my year for living fully with epilepsy. In just a few weeks I can drive again. Although with all these new roads I’m likely to get lost a lot, but I will crank up my music and enjoy the scenery as I attempt to find my way. I’m looking for a job. I want to love on people the way I loved on my Grandmother and the way others have loved on me. I have learned what fills my joy tank. I’m working on gaining confidence after being out of the working world for 8 years. I’m diligently finding time to spend with my son who is ready to leave our nest. I pray he is ready, confident and will be successful. He is ready to let his wings soar and I hope the world is ready for him!

My husband, my dedicated, committed, overall-wearing, yes we did just wrap plastic around our screen porch like our grandparents did…we celebrated 20 years of marriage this year. We had a week in Florida by ourselves for the first time since we got married! We made memories to last another 20 years…so you know who, can you mark us down for another week at your house in 20 years? He has held me when I cried, he has listened to me scream, he has encouraged me when I was in the depths and he has assured me that no matter how this or anything else changes me, he will never leave me. He cured every insecurity I may have. 2015 was a year of curing.

I emotionally look to this year with my son leaving but it does not escape me that I am blessed that our son will move on to college and we are here to see it. We lost some special friends and family this year, some of whom had a huge impact on our lives. They taught us to live in the moment, live without regret and take every opportunity that comes our way. They also taught us to give of ourselves what we can and indeed that is what I intend to do. Today is January 4, I think, and though it is way too quiet in my house, and I’m sitting at the window waiting for my son’s truck to come down the driveway, my life is so full of things I could never have imagined would be so over the top fantastic. Regardless of what the doc said, I found that for which I was looking. #livelifefullyn2016

Copyright © Gatewood Campbell, January 2016

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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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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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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

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Three Little Words

Sticks and stones may break my bones but words will never hurt me. Not so. Yesterday a lady said three little words to me and I was floored. It wasn’t until the middle of the night that I realized why I was so overcome with emotion that three words had put me on a roller coaster that had no brakes.

After my diagnosis, once we realized what we were dealing with, brain injury, epilepsy etc, I started speech therapy with my AMAZING therapist Heather. I worked hard on vocalizing what I needed. Communication was hard so we did a lot of role playing and I practiced; 1. Understanding what I needed to be successful in daily life and 2. Vocalizing that to those around me. When I re-entered the real and working world after my diagnosis and therapy I felt stronger and I started using these strategies. For the most part I was successful. If people couldn’t understand me they worked with me to try and understand and were gracious about it. We managed to make things work and I was fairly comfortable with people knowing the status of my health, until I found out that epilepsy wasn’t so acceptable and it shut me down.

Yesterday, I needed something from someone and explained it was because I had epilepsy and she said “I don’t care.” Now there is a whole background to the story, and she has her reasoning, which is fine. (She is still wrong, but whatever, this is my blog, so my point of view). Here is my point. What those three words swelled up inside me was like a tornado of pain that I did not even know was inside me. You see, way back, when I was open and honest and told people what I needed, a couple people said those same exact three words to me. Somehow I internalized that epilepsy wasn’t ok with the rest of the world.

Those three words silenced me for years about my epilepsy. I held it a closely guarded secret, thinking people would think I was crazy or delusional. I bought into all the ridiculous stigmas that still exist today about epilepsy and I told no one about that “thing” as my grandmother called it. You see, in her generation people with epilepsy were put in institutions. It wasn’t until a friend encouraged me to start writing about it that people even close to me knew. The words of a few ill-informed people had completely rocked my identity. Yesterday when I heard “I don’t care” I was disgusted. In the middle of the night I realized it was because I felt like I was sent directly back to those moments when I expressed my needs and those people said the same words to me and I stared back in confusion. The pain, frustration, misunderstanding, helplessness, anger, sadness, loneliness, it all came flooding back in an overwhelming sea of horrible memories that took over me.

I don’t care what anyone else says, the needs of others DOES matter. PEOPLE MATTER. I am so so thankful that my village of support that is around me now knows the value of understanding, love and kindness. I am so thankful I don’t have to explain myself to those around me and that you love me for who I am, even when I am not sure who that is, or who that will be, depending on the next medicine change, Lord help us all.

Copyright © Gatewood Campbell, October 2014