Category Archives: Epilepsy

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Well Dang

Some things seem too familiar, or maybe not. It has been over a year since my last seizure and perhaps I wasn’t quick enough to recognize the aura.

Several weeks ago I headed into the store for a quick pickup of ingredients to make chili. As I got to the back of the store something felt wrong. In my circus head I thought I would crush my phone in my back pocket if I went down. I placed my phone in my pocketbook and moved on. The sensation continued and I realized I had my glasses on so I placed those in the hard case and put them in my pocketbook too. I got to the sour cream and it was shaking everywhere. Determined, I tried yoga breathing. The shaking subsided and I grabbed the fat free sour cream. Feeling like I had this, I pushed my cart to the cheese section. Problem was that I could not walk steadily. So in my constant attempts to “do it my own self” (something I told my grandparents when I was about 5 years old) I bent over the buggy and threw my head into the basket. Self said to me “this is highly embarrassing so get up and walk.” I stood up and grabbed the handles again. Nope, not steady. I sat down on top of the cheese. Yes, on top of the cheese. I realized I needed to take an emergency seizure pill. As I sat ON the cheese I could see bottled water and thought I could dash over and grab a bottle, open it and pay for it when I left. I stood up. Then I doubled over inside the basket again. Well dang. Walking was out. I sat back down on the cheese. I threw the pill as far back in my throat as I could and gobbled it down. AHHH DANG! This is not good. I looked around for someone to call to. All I heard was spanish.

“You are ok. We are taking care of you. You had a seizure and you are going to be ok.”

I looked past the man speaking to me and into the bright round lights shining down on me. I realized I was strapped to a gurney and prepped to be moved to the ambulance. Well dang, really?? I just wanted to make chili. My mind wandered to my buggy with ground turkey, tomatoes, sour cream and oh yea, no cheese. I never picked that up. Ouch, my head hurt no matter which way I moved and my legs were barking!

“Hey I know that truck.” I was in the ambulance and I recognized my husband’s truck pulling into the lot. I told the medics my husband was here. I was overwhelmed with beeping and voices. What I wanted was to go home! Johnny came running to the back of the ambulance and told them I had epilepsy and he would take care of me.

Fortunately, I did not bust my head open and the medics released me into the loving care of my husband and our youngest son. Apparently he was in the backseat of the truck. I don’t remember. Some wonderful friends happened to be nearby and went back to pick up my van and get some more Tylenol. The smallest things mean the most.

It is what it is. Maybe I felt safe. I am safe, when I am careful and when I don’t overload myself. Epilepsy is a silent disorder. It is invisible. It strikes when we think it may and also when we least expect it, or when it is least convenient. I can not believe the stoic manner in which my husband is always able to cope with this. My children do not fear seizures but they are all too aware. Our youngest was in a class when he saw his dad come around the corner before class was over. Later he told me he figured something had happened to his mom. He wasn’t worried. He is always confident that someone will be there.

Turns out care was at my side within seconds. A friend witnessed the event but because I was already on the ground she didn’t realize it was me. I am thankful that she asked shoppers to move along and comforted to know that she saw the employees had called 911 before she had the chance.

You know what? This too shall pass. I have spent the last 11 years fighting this and I have no reason to think that it will ever beat me. Yes, I am dealing with reality that I wish I were not, but it certainly could be worse. Can you help? YES! Learn how to aid someone having a seizure.

The most important thing I need after a seizure is to know someone is in control and cares.  If you can be that person who looks into the eyes of someone coming out of a seizure and communicate love and care, you are a hero.

I am fortunate. I am a survivor. There is still no cure for epilepsy but millions of us fight it with the help of loving care around us. November is Epilepsy Awareness Month. Please take a few minutes to read, re-read and share first aid for seizures information. Knowledge is power and power saves lives.

Copyright © Gatewood Campbell, November 2016

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Where Did the Year Go?

Sitting here in my quiet house watching with my sweet yorkie by my side, watching my son’s new puppy chew on a bone and my mind wanders. For two years I was in this house alone, kids at school, somewhat limited by my inability to drive and a quiet house was common. This last year has been crazy busy. Now though, it is not so common to be in a quiet space and it feels uncomfortable. It is a change I didn’t anticipate.

Exactly one year ago, I was admitted to Duke Hospital in the seizure monitoring unit. My meds were stopped and I was hooked up to video EEG and a heart monitor. We were there to wait for a seizure. I can still smell the chemicals they used to glue the 30 some odd leads to my head. YUCK! I carried around a battery pack for the heart monitor and the leads from my head were gathered into a gauze wrapped ponytail permanently attached to an electrical panel in the wall. When I say permanent, I mean permanent. I could not leave the room for the entire stay. I could go to the bathroom in privacy but someone had to be with me at all times waiting for and documenting any seizure like activity. I played games with the video camera and moved around the room to see if it followed me. Usually it did. At night they were a little slower. I think they were napping. I was a pretty low key patient. The nurses only did vitals every four hours because we were just there to wait for a seizure. And wait we did. After nine days in the world’s smallest hospital room I learned some things. Generic ginger ale is pretty good if served over ice, hospital food needs lots of salt and pepper, always place your meal order early, hospital wifi is spotty, you can fry an iPad if you put it on a heart monitor battery pack, EEG readings are messed up if you hold a charging iPad or iPhone, Netflix is the bomb, Big Brother and Below Deck are fantastic time passers, showers are NOT overrated, glue in your hair is nasty, my marriage is solid because survived 9 days in one room, nurses are too loud at night and keep patients awake, I can actually stay awake for 24 straight hours and then only take a brief nap all in the name of bringing on a seizure, bed side manner is everything when it comes to loving a nurse, never ever pass up friends who offer to bring you food from the outside world and I don’t ever want to go through any of that again. I also have an amazing mother who came and lived with my sons while my husband stayed with me. Friends provided daily meals for two straight weeks while I was gone and after we came home. Though the tests were somewhat inconclusive, we learned what the right meds are and they have served me well for the last year.

At the beginning of February, I got my wheels back! After two years off the road, I jumped back in with both feet. My father in law had undergone surgery for a total knee replacement in early January. Unfortunately the surgery had to be stopped because his heart stopped. Doctors worked quickly and God jump started his heart but it began a long journey with new and unexpected trials. He was away from home, in and out of hospitals and rehab centers for 2 months after having to undergo a second surgery to finish the knee replacement. That man is a fighter and his wife is the toughest gal on the block. His healing continues each day and we have all been adapting to a new normal. He has mostly good days now. Never take good health for granted. We never know what may be next. And I would add, I can be a serious force to be reckoned with when it comes to healthcare for my father in law.

Life changes so quickly and it can happen in so many ways. This spring my mom decided it was time to complete her retirement plan and move to the mountains permanently. This meant selling her home. It wasn’t just her home though, it was the home her parents built  in 1957. It was the family home. Sorting, trashing, keeping, selling, packing, hauling, shipping…yep we did it all. Some days I was on task and some days I tearfully sorted and tried to fight off my tendency to hold onto things for sentimental reasons. I reminded myself that my treasure box of memories is in my head and that never leaves me. We had a yard sale and I laughed each time someone picked something up and my mom told them the story behind it. Mom traveled all over the world for about 25 years. She has millions of things from her trips, not really but sometimes it felt like it. When she tried explaining the Spirit House that she bought and carried all over Taipei, or the walking  stick handle she got in Afghanistan, people looked at her like she had just jumped off the moon. I don’t think one person believed any of the crazy origins she spilled. The funniest part is that everything was true. When Johnny and I loaded the last box to take to donate he spotted something and asked if I was sure I wanted to let it go. I said “I have touched every single one of these things at least five times so if it got here I’m not changing my mind.” I guess that is how moves should go. My mind needed to come to the realization that it was time to let go of a structure and the things that were in it. Those walls surrounded love and now it will be the foundation for a new family to build memories and perhaps hang some artifacts from their own travels. Let’s be honest, at the end of the day, the thing we will all miss the most is the prime parking spot!

College. Say it ain’t so! The time came much faster than I ever knew it could. My son packed up totes, snacks, mattress egg crate and off he went. Boys are so easy! It only took us two loads and he was in his 10’x15′ corner room. I think I over prepared because I didn’t cry until about a week after he left, and that was one ugly cry. Maybe I was in shock. It is SO quiet in the afternoons at home because there is no drumming! The laundry loads are much smaller and I have not quite figured out how much food to make when I am not feeding an 18 year old man. It took me about a week of glancing into his room to not feel overwhelmed with his absence. Partially because I can text him anytime I want, but maybe because much like letting go of my mom’s house, his walls surrounded love and talent that can be passed on. Watching him venture off to a new place with new experiences is like sharing a house with another family and letting them have the gift of a solid foundation. We hope Justin has the foundation to successfully bloom into whatever he is passionate about. He was home this weekend and we were walking through a store and I spotted a toy he had when he was little. He immediately remembered it and continued talking about all the different things he made with it. My heart was so full because I felt final peace that we are all right where we are supposed to be. He holds the same memories and they bring him joy. He is living out each moment, as we all are, to the best that we know, by faith, trusting that the decisions we make are guided by what God knows will be best for us.

As I think back on this past year it makes sense that it went by so quickly. We were going through a lot of motions and a lot of emotions. I have been relearning how to be active and mobile again. I giggle when I read my blog title “Embracing Change” because it seems like I’m always being forced to do that. Truly, I’m so fortunate, so very very fortunate.

Copyright © Gatewood Campbell, September 2016

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A Minute Equals a Lifetime

It has been more than a quick minute since I sat down to this blank screen to share. Over the last couple of months I have pondered the meaning and usefulness of this blog. If it serves nothing more than an avenue for me to throw caution to the wind and speak…as if I don’t do that on a daily basis…it is worthwhile.

Six and a half weeks ago I regained my driving privileges. Twenty two months ago I lost that. Do you know the county in which I live? New roads! New highways! Closed roads! New roundabouts! Can I tell you that the gas pumps are far more complicated now than they were 2 years ago? I wish all of you could have seen me pumping gas for the first time! It was comical in ways I can not describe! This week I refilled my tank without any issues and I was so excited I wanted to dance a jig at the gas tank. I wanted to shout to everyone that I figured it out. Alas, I realized people may think I was crazier than I really am, so I celebrated quietly…but I celebrated!

A month ago I realized my life changing accident had been more than 10 years ago. I look at my 12 year old, almost tall enough to look me eye to eye, and I recall looking at him just 16 months old and wondering how to move on. My oldest, now 17, was only 7, and in the first grade. We wrestled with how he might adjust to our changes. The morning of my accident I went and read a book to his classroom. It is engrained in my memory. I can recall all those innocent eyes looking into mine and waiting for each word. For the record, that teacher was the most incredible teacher my oldest ever had. Another sign that God’s hand was on our family. To this day when I see her, she calls my oldest by name and asks how he is doing. God’s plans, not ours.

Today I am registering that young man for housing at the college of his choice. Life has moved forward regardless of the obstacles that showed up. My son is writing his senior exit project about epilepsy, the treatment, the stigma and how life goes on. We have all grown in ways I can not describe because of this illness. I continue to see how my own health has opened the eyes of my children in ways I could not have taught them. They have learned by experience to show love, compassion and acceptance. These are traits I am glad my children exhibit.

Life goes on. In wealth, in health, in sickness and in death. Life goes on. What matters is that our foundation is firm. My foundation is in Jesus Christ. He is the creator and author of my life. Each day I must wake up and submit to His will for me. I must make the choice to trust in Him and only Him. He knows that I have a long list of reasons why I can not trust doctors! So I have to trust Him. Many days I awake forgetting to rest in Him. Those days spin right, left, up and down. I am reminded…in whom do I trust?

After nearly two years of seclusion I was not really ready to be thrust back into the world. I have had a bit of a culture shock. Over the weeks I have realized this, and begun to take things as they come, and as stupid as they come. I am not offended by those that beep their horn at me or give me the finger. “Move along” is what I say.

Before I was back on the road we had some rather large bumps that our family continues to work through each day. It serves as a blessed reminder to me to slow down and enjoy the road that I am allowed to travel. Today as I read my devotional, the first words said “Trust Me one day at a time…..Exert your will to trust Me in all circumstances. Don’t let your need to understand distract you from My presence.” I felt like a kid in the Presbyterian church and felt the need to close my book and bow my head repeating “this is the word of our Lord. Amen.” The devotion continued and reminded us that God equips us for each day, one day at a time and we will live in victory. “Trust Me one day at a time.”

This I must remind myself daily…trust in MY Lord one day at a time. I need not worry  about tomorrow because it will worry for itself. I must tell myself every day to lean on Him, share my worries with Him and He will carry me to the next day.

Thank you to those of you following my blog, praying for my family and praying for all good things to come to us. I am thankful for each of you as you are my adopted family willing to listen to my heart’s cry.

Copyright © March, 2016 Gatewood Campbell

 

 

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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