Learning to Loosen My Grip

We all do it. Don’t kid yourself. We want to control our lives. We want to be independent. We want to choose our ways, our days, our plans, our whatevers. While taking care of my Grandmother I listened to her talk about how frustrated she was about having to give up the way she liked things to be. I spent her last years helping her as best I could, among other things, make those things she could no longer do for herself as much like she would have done them herself. Some seemed so silly (who really irons cotton t-shirts?) but they were things that made her life feel normal and she too worked hard to continue normal life even when she was weak and frail.

She did not choose to be 98 and still living. In fact, and she would have been the first to tell you she would go to bed during many thunder storms and pray lightning would strike her, only to awaken disappointed in the morning. She would frown when the doctor would tell her nothing was wrong with her. What she did teach me was to learn to loosen my grip on independence and make the best of where you are. She woke up everyday, not always happy to wake up, many days wanting to stay in bed and cover her head with her covers, but she chose differently. She got up and she got dressed. Getting dressed included shoes and lipstick, always. Sometimes she wasn’t dressed until 2pm but she got dressed. And her bed was always made. Always. Except for one day, the week before she moved to healthcare and that was the week I knew for sure she had taken a turn and would be moving soon. After that she had round the clock help and bed was made every day, to her specifications, even if that meant it had to be made several times.

I am not here by my choice but I am following what my Grandmother taught me the best I can. Everyday I get up, make up the bed and I get dressed. I can’t say I always wear lipstick. Chapstick…maybe. I am trying my best not to be overcome by the fears that taunt me. I am trying my best not to be overcome by the embarrassment of having to ask for help or even worse the embarrassment of being turned down when I ask for help. I am trying my best not to be overcome by the embarrassment of having strangers stare. I am trying my best not to be overcome by confusion. I am trying my best not to be hard on myself. I am trying my best to learn to gently loosen my grip on my own independence and understand that it really never was mine to own anyway.

I am grateful for all of you that are being so patient with me while I try, because having been on the other side, I understand that it takes great effort from you as well. So, I thank you.

© Copyright Gatewood Campbell, March 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

Sorting it out; a year later

A year ago I sat in front of this computer in complete anger and frustration. That’s when the seizures returned and I started the mad science lesson with medicine that really isn’t quite over just yet. A year ago I was mad at epilepsy and I was mad at brain injury and I was mad that they were messing with me again. Yes, I’m a control freak. I’ll admit it. Guess what? I can’t shake my finger at my own brain and tell it to shape up. Well, I can, but it doesn’t do any good.  I needed some time to release the anger and move on to acceptance before I could start working towards healing again. In so many ways that seems like yesterday and it seems like an entire lifetime ago. In all honestly, I’m not completely over my anger, I’ve just refocused that anger into something more worthwhile than self-destruction.

I have to give props to my family who put up with the likes of attitudes out of me of the last year that I probably would not believe I actually displayed. People who have never had to take drugs for your brain may never understand what it feels like to look in the mirror and not recognize the face, to answer a question and yet not understand your own the response, or to find yourself lost in the city you have called home for 35 years. I’m dealing with it all. I pound it all out in the pavement every week.

There’s one thing that I had hoped would come back over the last year, and it hasn’t. In fact, it has progressively gotten worse. I’m not so much mad, it just makes me sad. I lost a great deal of my ability to really express myself after my brain injury. I know…many of you may disagree, but Johnny, or my Mom or Sharon, (and they know it doesn’t hurt my feelings to be honest about it either) will agree with me on this point. They know. I lost the ability to verbally express myself, yet I found I could express myself through writing.  My blog was such a source of comfort and release for me.  But my new medicine has….well…I can’t find the words for it…now even my written words are a lot slower, or just not there at all. So now everything I feel, and experience stays pretty much bottled up inside me but is swelling in every direction. But I can’t comprehend the swells or begin to let the swells overflow onto paper, so the foam continues to bubble up. I’m not really mad about it anymore, maybe frustrated, maybe annoyed. The trade-off is that this medicine is keeping the seizures away. Seems like a small price to pay for life, right. I’m a mom, seizure free is my goal, I have to accept swelling foamy bubbles not matter how much they confuse me.

So, I’ll keep refocusing my ______ into something more worthwhile. Please don’t stop reading my blog just because I’m not posting as often, it’s just because I can’t figure out how to say what’s on my mind. I’m still busy though, If you haven’t already heard about my worthwhile venture…click the link below. I gotta do something to find a better drug than this one…this is the best way I know to do that!  http://epilepsytherapyproject.myetap.org/fundraiser/2012PHLMarathon/individual.do?participationRef=3917.0.251389979

Good thing there is a lot of pavement left in Huntersville and a lot of miles left on my shoes. I tend to have a lot of energy to burn, for good reason. Maybe one day I can explain.

Copyright © Gatewood Campbell, July 2012

God Never Wastes a Hurt

God never wastes a hurt, God wants to use you. In the back of my Bible I have random quotes and thoughts that I have heard over the years. I’m not sure where I was when I heard this, but I’m certain that God prompted me to write it down. I’m clinging to this now and trusting that there has to be something big in my future.

I’m not mad anymore. I’m tired and frustrated. I’m frustrated with the reality that Epilepsy has no cure and no perfect medicine. I remember when I was little and we would go to the Davidson Clinic to see Dr. Williams. I used to ask my parents why doctors “practiced medicine”. That indicated to me that it was not yet perfected and I didn’t understand letting someone who is still practicing something stick me with needles and prescribe drugs to me. Now I understand why doctors still “practice” medicine. I was right all along; medicine is not yet perfected. I understand it, but truly I would prefer that someone other than me serve as the guinea pig.

Apparently I make a good study in medicine. Lord help me, I surely hope THAT is not the big purpose that God has for me! You know when you read the labels on medicine and it says “a small number of patients may experience rare and unusual side effects such as…”, yes, well I tend to fall into that category. I guess everyone falls into some statistic and at least I fall into the rare and unusual category. I’ve always thought I was a kind of stand out person anyway. I majored in Psychology in college, it was not my intention to become a study in psychology. Nevertheless, here I am.

The good news is that the seizures have stopped. The not so good news is that as I slowly increase the new medicine I rapidly turn into someone I do not even recognize. It’s really quite possible that Webster’s 2012 newest addition will read: Mood Swing – definition Gatewood Campbell. I asked Johnny if I could hang a sign around my neck that reads “Heavily medicated. Not responsible for anything that is said or done.”  This new medicine turned me into someone I don’t know nor can I control. After several days of uncontrollable sobbing and screaming at strangers in parking lots for their inability to drive responsibly (or whatever else was annoying me at the time) I decided it was best that I remove myself from the outside for a bit. It seemed that was in my best interest as well as the best interest of the state of North Carolina.

Epilepsy is all about misfires in the brain. In order to treat it, you have to corral the misfires. Let’s just say that I’ve got some wanderers that clearly do not want to cooperate. My doctor says that the side effects I am experiencing are rare and unusual. I really should have expected that by now. Although I am more than ready to throw in the towel, quitting is not an option. I’m still trying to convince myself that a seizure would be worse than how I feel on this medicine. The jury is still out on that one for now.

So, here we go again. In order to isolate the symptoms I’m having, we backed off the new meds for a week and in a few days I will try them again. My dosing schedule is about as complex and confusing as the back to school forms for the boys. I hope I’m more successful at my dosing than I was at communicating how Hunter was supposed to get home from school on the first day. Oh well, he eventually made it home safely regardless of the detours. I certainly pray that the outcome of my detour will end favorably as well.

I’m forever thankful for the generous help and support of our friends and family who continue to rally around us. I have no words to express the depth of gratitude I have for what you have given our family. From the bottom of my heart, THANK YOU!

God never wastes a hurt, God wants to use me. I’m sure it is for more than a footnote to some pharmaceutical company’s research, so until then I’m trying to put aside my frustration and hang on to see the bigger picture.

Copyright © Gatewood Campbell, August 2011

I Need a Moment to be Mad

Can I just have permission to be mad for a little bit? I understand this is just part of my new normal, but that doesn’t mean I have to like it. Usually I can accept it. I really don’t have a choice. I have to live with it, but sometimes it just makes me mad. It makes me mad that I had to go look at trashcans in Target. Trashcans, of all things! I relive those moments over and over again. Realizing that my plan had gone awry and I needed to go to Target, getting in the van, pulling into the parking lot, walking in the store…. waking up in an ambulance, completely annoyed by the EMT who was cutting off my sleeves to hook up an IV. Sometimes it’s all just too much and it’s more than I can bear.

I have learned to live with frequent bouts of mild dizziness. I have learned to live with mild confusion. I have learned to live by my 7 AM, Noon and 7 PM alarms that remind me that it’s time to take my medicine. I have learned to compensate and adjust. I can tolerate a lot, but sometimes it becomes too much and I’m forced to admit that something isn’t right.

It started Easter Sunday. In the middle of the message, I was looking at the stage and suddenly my vision blurred. Words began echoing inside my head like a ping-pong ball being bounced inside my skull. I told myself to focus and regain control. Refocus, refocus, refocus. It wasn’t working. My eyes fell down to my lap and I saw my hands drop like dead weight off my lap. I tried to pull my hands back but I couldn’t move them. I wanted to tell Johnny something was off. I tried to speak. I couldn’t. I leaned in close to him and he looked at me. Words weren’t needed. He saw it in my eyes; tears, confusion, fear, anxiety. He knew immediately, we both knew immediately. Something wasn’t right.

A couple of months ago I made a phone call for my grandmother. She wanted to know how much her pedicure would cost. I called, I asked, and I hung up. My grandmother asked how much it would cost. I couldn’t remember. The voice inside my head said “get it together, what did she tell you?” Try as I may, I could not recall what she had just told me.

Just a few weeks ago I was preparing the family for our trip to Montreat. The boys had packed their own bags and Johnny had already set aside his clothes for the suitcase, so I just needed to pack my own things. I stood in front of my closet. I just needed a couple outfits for running, several pairs of shorts and shirts and a couple of warmer things for the evenings. I kept telling myself that was what I needed, but I stood frozen at my closet, not knowing how to proceed. This was not your average “what do I want to wear” moment. This was my “I do not comprehend” moment.  I could not make the connection. I tried so hard, but all I did was move things from one pile to another and then back again. Progress was painstakingly slow. I tried all my techniques from rehab, breaking it down into small steps and talking aloud as if walking myself through the task in order to maintain focus. It didn’t help. I could not figure out how to pack my suitcase.

Last week I walked out of a store. I looked at the parking lot and realized I didn’t know where I parked my van. Logically I knew I could retrace my steps and find my van the same way we look for our keys when we lose them. I tried to picture pulling into the parking lot, but the picture was blank. I had no memory of driving into the parking lot. I had no memory of parking the van. Here I stood, bags in hand and I couldn’t remember the events that got me there. One problem at a time; first I had to find my car. I wandered the parking lot pushing the lock button on the remote so the horn would sound and I followed the sound until I found my van. Later I told Johnny what had happened. He asked me what store I had been in when this happened. I couldn’t tell him where I was. “That is a problem,” he told me. Something wasn’t right.

This is where I walk the balance beam known as Mild Traumatic Brain Injury. The damage is enough to make simple tasks difficult and sometimes impossible, yet my cognitive abilities are still strong enough to identify that I used to be able to complete the task but now I can’t. This is my boiling point. This is where I just get mad. I know I’m fortunate the injury is only mild, but it still makes me mad when I can’t pack a suitcase, or remember what the lady on the phone just told me, or find my van. I spent 32 years of my life one way and now I’m different and I’m not used to it, and sometimes I just want permission to be mad.

I’m a work in progress and adjustments are always going to be part of my life. Adjustments to my new normal will include adjustments to my medications. My neurologist can’t tell me what is happening right now. There are no blood tests are X-rays to identify the problem. We all agree something isn’t right, but we don’t know what. These episodes could be unfortunate side effects of my medication or they could be break through seizures. There is no way to know except to push my body to a new threshold and see what happens. It’s kind of like House has just told Thirteen and Cameron to double the meds. If the patient’s symptoms persist more rapidly then it’s a medication side effect. If the symptoms stop then it’s break through seizures. That’s all fine and good when I’m watching it on TV. It’s not so great when I’m the patient, not to mention that the high doses of medication make me want to crawl out of my skin with irritability and anxiety. (This pleasant side effect also makes me pure joy to be around…NOT.) My body’s response, over time, will reveal the answer. The hardest test for me and for those around me, is surviving the time it takes for my body to reveal the answers.

I’ve been down this road before. Previously I traveled it in privacy, hidden beneath silence and shame. I survived it, but I also have scars from that well-worn path. This time I’m going to try a new road. I’m taking the HOV lane and giving carpooling a try. This time I’m bringing you with me. Those who have read my story have touched me in ways that I cannot describe. You have opened your heart and your mind to me. You have voiced your love, your concern and your acceptance. You have allowed me, invited me and even empowered me, to accept who I have become over the last few years. You have brightened my life and my path. I hope you will allow me to bring you along as I cross this speed bump in my journey. Life is not a sprint. Life is a marathon. This is my marathon…and the finish line is around the corner…somewhere…it’s just not in sight quite yet.

© Gatewood Campbell, July 2011