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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Almost There, But I Wouldn’t Change What I Learned

I’m wrapping up two weeks of vacation in my favorite place on earth. My family has had laughter, rest, time to catch up with family and best friends and a lot of good food while we celebrate the 4th of July and then some.

As these last few weeks have passed I have thought about the first few days since December 2nd when Mom started her cancer treatment and I pushed the button to wait to cross the street on Morehead and woke up later in the ER. I could not have dreamed the scenario that would unfold. Goodness, it seems like years ago. Months later, Mom is so healthy now. She is strong, full of life, and full of strong blood cells!! I too am much stronger, shaken, but stronger, deep down, in ways people can not see, in ways you can not touch, but in ways that I know I can reach when in need.

I have learned that God is there, always listening, my partner in everything, ready, always on call, in ways I did not fully recognize previously. In my loneliness He can comfort, in my weakness He is my strength, when I am dizzy, He straightens my path, when my words are lacking, He finds them, when my days are too long, He gives me rest, when confusion is too much, He gives me my husband, my sons, my Mom or my best friend to explain on my behalf, when danger may linger, He sends a stranger to call for help, when in need, He has surrounded us with a crowd of sacrificial friends willing to help with rides, food and anything else we have needed. God IS our provider, in every sense of the word.

I have missed my Grandmother and thought of her every single day since she died. Many of those days have felt like my life was spinning out of control and yet I was glad she wasn’t here because I knew it would be too painful for her to be here and see the pain our family was going through. It made me thankful again that God took her when He did to relieve her of that burden. God is so good. Just another reminder of how He has comforted me even through death.

I still have 5 days before I can hold the keys to the car in my hands again and I am cautious as I wait for that day. I know anything can happen between now and then. The difference is, if it’s bad, it will suck, we will survive, as a family, with the help of our extended family, because our God will carry us through anything we ask Him to help us through. I’m still processing the reality that I will deal with epilepsy and the possibility of seizures for the rest of my life, but I will continue to use my filter-less mouth to bring as much awareness to this disorder as I can. There has to be purpose in this brain trauma somewhere, right???

So if you had not been able to drive yourself anywhere for 7 months where might be the first place you would go? Good question right? I have several doctor appointments next week…boring. My oldest needs supplies for his upcoming mission trip…big stores and I don’t have a good record, plus he has to do that with me. We need groceries…boring. Well, just so happens I have an amazing brother and sister in law who keep me stocked in massage gift cards! SCORE! I have already booked a Wednesday morning massage! What better place to drive for my first day out, right? A little pampering for me! Yay for my awesome bro and sis in law who know how to spoil me! Can’t wait!

I wish I could thank everyone that has helped us but I know I would forget someone and I have a terrible fear of leaving people out. So please know that if you have helped us in any way, you have been prayed for because of the gift you gave our family. You made what could have been a horrible 7 months much easier for all of us. Thank you, thank you, thank you.

© Gatewood Campbell, July 2014

Just a Little Bit Longer

“How much longer?”

Everyone is asking. Seems like it has flown by to everyone else, and in many ways it has. It seems like forever to me, and to others it has felt like that as well. How much longer until I can get behind the wheel? I have 2 more months. I am so tired, and embarrassed of having to ask people to do something for me. This is so difficult for me. Boy am I really being refined there!

Truth is, the closer it gets the more anxious I am. Each day I am more fearful that I am going to have another grand mal seizure and lose consciousness, thus starting the entire process over again. I am afraid that the black hole that this new medicine has created in my brain will make me too much of a lunatic to drive with any sense. Will I remember how to drive? Or will I more likely resemble an inexperienced 15 year old with a permit? Gasp, been there, doing that….deep breath in through the nose….out slowly through the mouth…and repeat until you reach your destination. 

I’m surrounded by people, loving family and friends, yet epilepsy and the medication we have to take, force us into an obscure place that others cannot understand. So often it isn’t epilepsy that causes the problem, it is the medicine that is the evil. It takes away the person that we once knew when we looked in the mirror. I know that I do not make coffee in the laundry room, yet I found myself walking into the laundry room with coffee and filter in hand looking for the coffee maker. On more than one occasion I have looked at my 10 year old washer and dryer not knowing what to do with the knobs to make them start. I was at the gym and I forgot how to do a sit up. I can’t even explain that one. I just knew from how my body felt that I was doing it incorrectly. I couldn’t form a correct sit up. Simple facts that I have always known and been able to recall are just gone. I hope I can run again without being dizzy. Conversation is so hard. My black box brain is so empty. The words come so slowly, each word is so delicate and so cautious. I’m confused by the smallest challenges. My fourth grader has long surpassed what I can help him with in his school work. I have a college degree and I can’t help him with his homework. It is degrading. Parts of who I was… vanished. So who am I going to become? What am I going to do? Change is hard. No one likes change. This medicine is good; it is keeping me from having seizures. I have to remember that.

This has been a hard winter on many levels. It was so unexpected. I’m not used to dealing with the new side effects of this person that has been created and working so hard to dig up the layers beneath to find me. I want to be the mom that I used to be for my children and the wife that I used to be. I want to be the friend that I used to be. I want to run like I used to. I want to be able to work out like I used to.  I want to juggle those things and more. I want to give as much as I receive. This spot, this place, it is so uncomfortable for me.

On Sunday these words from Always by Kristian Stanfill spoke to my heart. “Oh my God, He will not delay, My refuge and strength always. I will not fear, His promise is true. My God will come through always. Always.”

A few weeks ago I was cleaning out some things and I stumbled on 3  greeting cards that I had tucked away for safe keeping some years ago. They were mixed in with some other things so obviously they were something of meaning so I pulled them out to read. One of them was from my Grandmother. All it said on the inside was

“Peace!

         Emmer”

There was no date. The card had a little bird on the front so it didn’t indicate a holiday, but she wouldn’t have wasted money on a holiday card anyway. She likely just sent me a card during some difficult time. I could see her gentle teary eyes and feel her soft arms wrapped around me. I needed that little hug.

I know God will not delay. I know He is my strength. I know His promises are true and I know He is all I need. I know He hears me when I am anxious, He knows my fears before I know them and I know His ways are better than my own. I know that, I know that, I know that. My God will come through always.

This journey has been a doozie. How much longer is really anyone’s guess, but I am ready for this roller coaster to come to a safe and complete stop. Oh yeah, I can’t ride roller coasters. I forgot.

© Copyright Gatewood Campbell, May 2014

The Four Letter F Word

F E A R. It can absolutely paralyze you. It has paralyzed me.

I know we should not fear. I know Jesus teaches us to live by faith. Everyone tells me not to be afraid. But it is so easy to tell someone not to be afraid. I’m afraid that a brief moment of confusion is an oncoming seizure. I’m afraid that the loud echo of a stereo is actually an oncoming seizure. I’m afraid that the persistent beeping of registers in a store is actually a sound being created in my head indicating a seizure. I’m afraid that if something catches my eye, there might not be anything there and my world is about to shake violently. I’m afraid that when things suddenly slow down they are about to speed up very quickly. I’m afraid of another concussion. I’m afraid that people will be afraid to be around me because they will fear I will have a seizure in front of them. I’m afraid of having a seizure in public. I’m afraid parents won’t want their kids to come play with my children because they fear I can’t adequately supervise them.  I’m afraid that maybe I can’t adequately supervise them. I’m afraid the seizures will never stop. I’m afraid of going to sleep one night and being taken by epilepsy.

I am trying so hard. I know I am fortunate. I know it could be so much worse. I know there are so many other people dealing with far worse situations. I know I should be focusing on the things that are good and not the things to fear. I know what Jesus has taught us to have faith and not to fear. I hear what each of you are telling me. I’m trying, I really am. But this F E A R, right now it is just paralyzing.

© Copyright Gatewood Campbell, February 2014

How Did I Get Here?

I blinked. My world shook. I looked into the eyes of a stranger and asked “How did I get here?”

Epilepsy. It came into my life from a fall nearly 9 years ago. One might think I would be used to it by now. Not so. I’m thankful for the quieter years when my seizures were, for the most part, controlled by medication. I lived in a world shaded from the truth that epilepsy changes your life forever. I’m glad I had those years in the shade, but I have walked out into the sun now and I do not like it.

In the last two months I have had two grand mal seizures. Both times I was alone on a sidewalk. The first time I was caught off guard and had no time to react and have the scars to prove it. The second time I had about 10 seconds to know I was in bad trouble. All I could think was SAVE THE HEAD and I moved to the grass and dropped to my hands and knees. I never want a staple gun smashed into my head ever again. I successfully saved my head. But I found myself looking into the eyes of a stranger once again and asking “How did I get here?” Again, another gentle voice told me I had a seizure. Best I recall I thought something like, oh @&^%$#. I don’t remember much after that. It is weird that each time I have a brief memory with an EMT and then I lose an hour or so and pick back up when things are calmer and I’m settled in the ER. Settled in the ER, now that is an oxymoron if ever there was one!

It is all overwhelming. I just didn’t realize how my life would change. I didn’t realize how the lives of my family would have to change so much. I don’t know how to adjust so quickly. I want to go back into the happy shade of controlled seizures. I don’t like the sunny side of seizures at all. After the first seizure I was counting down until I could drive again. I just thought it was a fluke and I didn’t expect another one. After the second seizure, I realized it was more than a fluke. Now we are dealing with more than just small breakthrough seizures where I maintain consciousness. The driving clock reset yet again. I quit counting down. It feels so far in the distance.  I don’t worry about driving. I just want to be seizure free. You see, there is no cure for epilepsy. There is coping, by means of medication or surgery, but there is no cure. People with seizures, people with epilepsy; we face the dreaded “pre-existing condition” and the grind of brain changing chemicals everyday. This is my life, and 9 years later, I just NOW realize it.

I am thankful, don’t misunderstand. I am blessed in ways that can not be measured, but I live under some element of fear everyday. I have to think through where I am going and “what if?” I am just like everyone else and wish we knew that everything would be ok. That isn’t reality though. So I have to plan ahead. My husband needs to work nearby just in case that number he doesn’t know shows up on his cell phone and the caller says “Mr. Campbell?” He knows without the caller saying anything else this is not Publisher’s Clearing House calling. I don’t like that he gets those calls. I don’t like that when my son comes home and I’m not here, he instinctively texts us asking where we are. I don’t like that fear can transcend generations. I have watched the fear of my seizures pass through four generations of my family now. The fear makes me mad. Then I circle back around to being mad at epilepsy all over again. I see how people who don’t know much about epilepsy talk about it and it upsets me. I want to be understood. I want to educate them, but sometimes I get tired of trying to teach people to be accepting. Sometimes it is just easier to be quiet and hide.

I don’t know how I got here. I don’t know why I’m here. I don’t know when it will be better. I know I am not supposed to be afraid, but I am. I know I am not supposed to worry, but I do. I know I am not supposed to ask why, but I do. Normal is such an abstract idea, I am not looking for normal. Furthermore I have had too many concussions to remember what our normal was. I just want to feel safe. I want to blink and for my world to never shake again. I want that for me and I want that for our family. Is that so wrong?

© Copyright Gatewood Campbell, January 2014