Category Archives: Life

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Channeling Fear

Fear. We all have it. The question is how do you and I overcome fear? Some fear heights, some fear swimming, some fear tests, some fear death and some fear the unknown. There are things all around us that can, and if I’m totally honest, we should fear.

I don’t believe fear is a bad thing. As with so much in life, how we respond to it determines whether it is a bad thing or a good thing. Fear can keep us from trying new things. It can also keep us from making the same mistakes repeatedly, because we already know we should be afraid of the outcome. It is not a secret that I am afraid. I am afraid I will never be completely healthy again. I’m afraid of trying new meds because I have learned that nothing comes without a side effect I despise. I see the fear in my sons’ eyes when my husband says “watch Mom for me for a minute”. I have read of the fear my son experiences when he chose epilepsy as his graduation topic and began writing from his personal point of view about how epilepsy changes lives. I believe it is reasonable to fear there will never be a cure for this. I’m working very hard to overcome the fear that I may never drive again. That kind of independence may risk my life and others. I’m learning that fear takes us to a deeper level of understanding, trust and faith.

Last week was a hard week. I don’t know why, it just was. I was afraid and I was lonely. I called a friend and as we sobbed together about both our life situations I realized that fear led me to call her. Fear took me to a safe person, and guess what? She needed a safe person too. We talked, cried and laughed for over an hour, encouraging each other in ways that only she and I understand. I tend to channel my fears within, thinking everyone is too busy, they don’t get me, and everyone has their own issues. News flash! Everyone does have their own issues and I wonder what would happen if we were honest with the world and said it out loud. I keep looking at the advertisement of the women with the signs of how much they weigh and wonder what might happen if we each help up a sign and said THIS IS MY ISSUE.

Each of us have so much in common, but we are unwilling to share because of past hurts and hangups. Look, I am right there in the middle of it with you. I don’t share because I was betrayed, but because one or two betrayed me does not mean everyone will. Above all else He is with us. This morning I was listening to the radio and the song “He Is With Us” came on. I began to absorb the words, really ABSORB the words, into my marrow, as Beth Moore teaches us. The song reminds us “We can trust our God, He knows what He’s doing….Our faith is sealed, Our hope is real, Come what may, We’re not afraid”. Oh boy, so much easier said than done, but every opportunity of fear IS an opportunity for faith.  Faith IS real and hope IS real. My Bible says so, does yours? Does my life say it? Does yours?

I have incredible friends. They are not incredible because they have done things for me or with me. I have incredible friends because I can WATCH them practice faith everyday. They teach by example. They lead their lives by faith, trusting that, above all else, God is with them, holding on, never leaving….always with us. When I fear, I remember…my fear is nothing compared to the fear Mary felt when her son, Jesus was brought to Calvary. When I think of this I am embarrassed to have fear. Jesus died that I might not fear ANYTHING! HE did not fear! In that we can all trust! Mary did not know Jesus would come again, but she trusted. Her own fear and desperation also displayed her faith.

He Is With Us reminds us “when your hope is lost and faith is shaken, when you wonder if you’re gonna make it, There’s a hand stretched out through your deepest doubt. We can’t pretend to see the ending or what’s coming up ahead….But we can stay close to the ONE who knows”. Psalm 56:3 says “When I am afraid, I will trust you.” That is my responsibility…to trust. Every moment of fear is an opportunity to trust. Fear = Trust.

Fear will come to us, probably each day, in one way or another. Sometimes we may not recognize it as fear, but we may call it something else. Recognize this, whatever we fear, trust CAN overcome. Now I am by no means an expert in trust. I am a student, and fortunate enough to have examples from which I learn. We have to learn to trust Him everyday, every hour, every minute. We don’t know what the future holds, but He does. I am responsible for channeling fear into trust.

He Is With Us says “We believe there is purpose in everything, We surrender to His leading. He wants nothing more than to have us close”. Jesus wants us to remain close to the One who knows. He knows our fears, He knows how many hairs are on our head and He… above all else, wants us to trust Him. “It might hurt now, But He’s holding on to you and me and He’s never gonna leave”.

Copyright ©  Gatewood Campbell, June 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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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

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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

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Dreams, Moving Sidewalks and TV before Bed

The dream came back to me again last night, the details always a bit varied, but the theme seems familiar.

I was in line waiting in a bathroom, likely place for me since I always have a bottle of water in hand. I was strangely dressed in some dance costume. Blaming that on the Dance Moms episode I watched before I went to sleep. We were on a train and the train was not on tracks, but on water, thus the train itself was going nowhere.

In the bathroom I was on a moving sidewalk that moved against me making it nearly impossible to get to the bathrooms. I was the only person that was on the moving sidewalk. Everyone else was on solid ground, moving along like normal. As I fought against the moving sidewalk my costume kept getting caught in everything around me and I was constantly yanking the costume out as it slowly began to tear and shred. People in front kept calling my name and begging me to run faster on the sidewalk but I was getting nowhere! It was a circus! I can see it still now. On the sidewalk every few feet as I moved as fast as I could with a full bladder while grabbing this crazy costume at my sides, beneath my feet were the words ‘My Epilepsy’.

I kept trying to stomp on those words as they would pass and then the moving sidewalk would flood with water and push me against the wall of the bathroom and I would have to start my trek for the bathroom all over again. Over and over again this went. The longer this went the madder I got. I watched people walk past while I fought this moving sidewalk stomping on the word epilepsy each time. I would eventually make progress. Then it would flood and fling me against the wall. There I would gather myself in this hideous shredded costume and begin to battle the moving sidewalk. I never got there. My 5:30 alarm went off first.

I think about this dream and wonder the reality of it all….except the costume…that was really bad.

Copyright © Gatewood Campbell, September 2014