Category Archives: Brain Injury

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Looks the same, Doesn’t work the same

Frustration. It comes and goes. It comes less frequently now, but when it arrives, its head is ugly and upsetting. My definition of a brain injury is that everything looks the same, but it doesn’t work the same.

I challenged myself this week to step outside my comfort zone and try something different. There are so many things I want to do but I know I’m not cut out for the task so I step aside. Other times I feel like I need to try, to push my limits and see where the line is drawn. I’m usually ok in a group to do just about anything. With a group, when I get confused there is always someone to help me, someone to cover for me, or someone that knows I might just need a little extra time or instruction. When I’m on my own, it’s all me.

This week I took a bold step to volunteer at church to help at VBS. Justin is working games, Hunter is helping lead worship, and the mom in me finds it hard to drop the boys off, with 300+ kids, and not try to help. Sometimes I feel guilt telling me I don’t help enough, sometimes I hear a voice just begging me to try. So this week I tried. Monday went ok. I couldn’t be there Tuesday so yesterday I was back in my assigned place. All was going fine until I was asked to change gears and help fill in a spot where more help was needed. The age group was bulging at the seams and they asked me to help with their snacks and crafts. Ah…..

Ok, to start with I simply don’t do crafts. It’s not in my genes. When I was in the Elementary church choir my mom had to make my own costume. I will never forget her telling me to lie down very still on the fabric while she traced my body on the fabric. She doubled it over and cut the fabric along the lines and sewed the two pieces together. My belt was a shoe string. I thought my costume was fantastic…until I showed up to dress rehearsal and saw everyone else’s costumes. Clearly my mother and I yielded ALL creative ability to my Uncle and his children, as they are artistically gifted in monumental portions and we are not.

Back to VBS…when I was asked to help elsewhere, everything in my servant heart wanted to, but the immediate swelling in my throat and rushed heart beat was screaming NO! How do I look at someone and say “I can’t”? They won’t understand me, I look able bodied but I knew as my brain began spinning inside my head this could not end well. I explained that I would try, and a gentle but confused face met my comment. My brain kept spinning and wondering what to do. I saw Justin and asked him for help. How desperate must I be? I’m 39 years old asking my 14 year old what to do in the face of a simple request to change direction? I felt like the 3 year olds who needed more help. Justin was sincere but stern “Mom, you can’t do that. You have to tell someone you can’t.” Oh, how I hate these moments when I can sense the physical symptoms emerging from the darkness of a brain injury and I know I have met my limit. I know I look the same, but things don’t work the same anymore.

I was alone. I wasn’t with a group that could explain, I wasn’t with a group that could cover for me and I wasn’t with a group that could pick up my slack. The people around me don’t know my brain has been hurt and I hate having to say it. I had to look at someone who hardly knows me and just say “I’m sorry but I really can’t do this.” Our world doesn’t understand adults who can’t pull their load, especially when the world can’t see it. No one is at fault, no one means harm, it’s just that no one expects a capable looking adult to say “I’m sorry but no.” With all my strength I spoke up for myself and felt completely useless as I walked away knowing there was a need that I couldn’t fulfill. My heart ached that I couldn’t help but I knew the increasing stress was going to lead to the public embarrassment of a seizure. I looked around and the noise of the kids echoed, the busy adults overwhelmed me. I felt like I was in a fog at the center of a carnival ride. I felt invisible, useless and helpless in the midst of need. I couldn’t help where help was needed and feeling demoralized by admitting my inadequacies, I slipped out the side door to the safety of my car and I drove away.

I stepped outside my comfort zone this week. Some of it was successful and in other places I know where the line is drawn. I have to be proud that at least I tried. I will try again, something different, somewhere different, and hope that I will find a place were I can say “yes, I can help with that”.

Copyright © Gatewood Campbell, June 2013

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One to Wear, Three to Share

It is November 1st! I have waited 11 long months for Epilepsy Awareness Month to arrive again! Last year was a new adventure for us and I was just getting my feet. It was only the beginning of letting people into my world. My family supported my efforts for 30 days by wearing purple, wearing and sharing purple ribbons, holding purple days their schools and encouraging me to be proud to be me; epilepsy, brain injury and all.

As I sit here now in my purple shirt, purple shoes, purple earrings, purple bracelets and purple ribbon, there is still a part of me that wants to gulp when people ask why I’m wearing a purple ribbon. Will it ever be easy to say “I have epilepsy”? Will I ever stop fearing the response or the stares? Will I ever stop that twinge of madness I feel when the alarm on my phone rings and I know it’s time to swallow more pills that will upset my stomach, confuse my mind, slow my speech and make my hair fall out? Will I ever stop fearing that SUDEP will take me during the night? If I’m completely honest, probably not. But living in fear is not living. So I’ll choose to live in awareness and share what I know and what I have learned, because I can’t let fear win.

Six months ago I decided to celebrate Epilepsy Awareness Month by joining the Epilepsy Therapy Project and running the Philadelphia Half Marathon on November 18, 2012. I knew I could run 13.1 miles. I assumed I could convince my Mom to go with me and make a complete nuisance of herself by decking out head to toe in purple and yelling my name all over Philly and pretending to be Rocky on the steps of the famed Art Museum. I even thought I could convince a friend or two to go and run with me. I truly had NO idea my friends would jump on board like they have! Seven other runners teamed up with me and have helped raise a lot of money for the Epilepsy Therapy Project. A lot of generous people and businesses have supported our cause and dug deep in their pockets. The outpouring of financial and emotional support has warmed my heart and given me great hope for the future of treatment for epilepsy.

This morning everyone in our house pinned on purple ribbons. When Justin left for school at 5:55 am, he had on his ribbon. When Johnny left for work I pinned a ribbon on his shirt. When Hunter got ready for school, one ribbon just wouldn’t do. “I’ll take three to share please.” Most people would put them in their pockets. Not my Hunter! He proudly pinned them all over his shirt, ready to tell the world “my Mom has epilepsy and that’s just fine. Here’s your purple ribbon!”

It’s November, and it’s Epilepsy Awareness Month! I am excited about a month of fun adventures, including seeing Charlotte uptown light up purple on November 15 when Wells Fargo’s Duke Energy building turns purple for team Shaken, Not Stirred! We are all wearing our purple ribbons and we have more to share!

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Copyright © Gatewood Campbell, November 2012

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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

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Shaken, Not Stirred

When I was pregnant I read “What to Expect When You’re Expecting”.  People offered advice, whether I wanted it or not. Guess what?  There isn’t a book called “What to Expect When You Have Epilepsy”.  That might have been helpful for me, or maybe not. It might have scared me, or maybe I would have been better prepared.

I was cruising along just fine when epilepsy hit me right on target (pun intended) and distracted me from my very organized, multitasked and planned out life. For 7 years I’ve been adjusting to the changes epilepsy brought to my life. The first couple of years certainly weren’t easy breezy, but it’s all kind of a big blur to me now. I remember lots of doctors, pills, post it notes and catching rides with people. After I realized I couldn’t juggle work and epilepsy, and left the 9 to never-ending grind, I had very few problems for about 4 years. I had regular checkups with my neurologist and just routine blood work to make sure my medication levels were where they needed to be. I felt good. I couldn’t multitask but I could plan and organize enough again. Life was good.

Last Spring things slowly began to change and it caught me off guard.  I was not prepared for things to change.  My medicine quit working and I was having breakthrough seizures. The last year has been a learning experience. Those 4 good years gave me a false security that I had this thing licked. Don’t get me wrong, I believe I can have this thing licked, but I’m not there yet. Over the last year I have spent every month weaning on or off multiple anti-seizure meds in search of the lesser of the evils. It’s the great hunt for seizure control versus manageable side effects. Ask my family, it’s a pleasure to experience. One did a great job controlling the seizures but made me want to crawl out of my skin and I couldn’t sleep at all. Another controlled seizures really well, but it caused me to pretty much wake up without any patience or filter for appropriate speech (and pretty much tell off anyone I saw). That was a really bad bad medicine. Another one made me slur my speech, delay my word retrieval, limit concentration and pretty much screw up all of my processing skills. I’m still suffering the effects of that one. Another one gave me the shakes. My current drug of choice upsets my stomach and I have to time my meals exactly to limit the nausea. Some days I can’t fight the nausea, even with food, and I just have to stay in bed. The medicine makes me sleepy and I need a nap to get through each day. I get dizzy moving from a seated position to a standing position. My gums bleed and stay swollen and are sometimes so painful it’s hard to eat.  I have lost some taste and appetite. My hair thins a little more each day. The blotchy deep purple in my hands and feet is another nice free bonus I guess. And this is the medicine I chose, because the others were worse.

I am not complaining, I am explaining. I count myself among the fortunate patients with epilepsy. Mine is controlled with medication. Although, clearly it’s not the perfect medication. Epilepsy is a disorder in my brain but in order for it to be controlled, I basically have to surrender the rest of my body to medication. Well, that’s just not good enough for me, not long-term anyway. I need more options, we all need more options and I need to find a way to make that happen. I’ve spent the last year researching and networking with others in the epilepsy community and I learned about The Epilepsy Therapy Project. I am thrilled to combine my love of running with the opportunity to raise money for a deeply personal cause.

I have formed Team SHAKEN, NOT STIRRED to run the Philadelphia Half Marathon on Sunday, November 18th and raise $3,000 for The Epilepsy Therapy Project!  I already have one recruit! Sharon McGowan has signed on to Shaken, Not Stirred, which seems appropriate since she is one of the few people who knew me well before all this and has been by my side through it all!

Click this link to visit our own TEAM SHAKEN, NOT STIRRED page to donate, to join our team and to learn more about The Epilepsy Therapy Project. https://epilepsytherapyproject.myetap.org/fundraiser/2012PHLMarathon/team.do?participationRef=3917.0.251389978

I hope to use my involvement with this project to spread awareness and education about epilepsy while I prepare for the race. I’m just beginning this project and my brain is still fried, though over-easy, from the variety of  drugs I have been on, and I’m still weaning off another medicine now. There will be lots more information and updates to come. This is a very exciting opportunity for our family to get involved with the epilepsy community. My hope is that something I do will help someone else be better prepared or perhaps need not be prepared at all.

Copyright © Gatewood Campbell, May 2012

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Pressing On Through Frustration

I try really hard not to complain about my epilepsy, my brain injury and the complicated side effects of the five medications that I take everyday, but it is frustrating. It’s frustrating when I could depend on myself in the past and I can’t anymore. There is just so much that is different.

Last week I completely freaked out in my weight class when the instructor asked me to count how many people were there. I have trouble counting groups of anything because I can’t figure out how to group things in an order so that I will know what has been counted and what has not been counted. Short of asking everyone to stand up and then sit down after I point to them I was literally at a loss for what to do. I just tried to count the mats on the floor and then I added a few for good measure. I walked out of class wondering how I had turned into someone who is afraid to silently count people who aren’t even looking or talking to me. Bizarre.

I miss the human connection that I used to have. Sometimes it can be so hard. Conversations can be so strained and down right exhausting. My mind is slow and my speech is even slower. When I try to speak, the words don’t sound right coming out of my mouth so I repeat them. They still don’t sound right. So I slow my speech to pay attention to everything I’m saying, but they still sound wrong, so I repeat them again, and then I sound ridiculous.  Then I’m embarrassed and I quit trying. Sometimes I don’t understand what people are talking about so I can’t even enter the conversation. Years ago I could have.  Now I just stand silent.

It feels like forever since I’ve felt like myself. I’m not sure I know who that is anymore. When I make mistakes is it because I’m just getting a little older and trying to multi task too much or is it because of my brain injury and the side effects of the epilepsy medicine? Can I drop just one medicine that causes the worst side effects or is the risk of seizure too great? A seizure could be fatal. The risk is too great. I have to press on through the frustration.

I’m still learning. I’m still growing. I’m still trying to embrace my new me, my new world and my new normal. I’m trying really hard to like it. Some days are easier than others. Today was not an easy day.

Copyright © Gatewood Campbell, December 2011