Tag Archives: Epilepsy

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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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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