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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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

Nothing Ventured, Nothing Gained

One thing is guaranteed. I will never stop trying.

I found a couple of ways I thought I could help at church. It has taken me a long time to want to serve in church again, under the roof where I once worked. There is so much emotional trauma attached but I have found inner peace with the journey God took me on and the realization that His ways are always better. I finally came to a place where I was comfortable again. I’m also working hard to rebuild my confidence in a lot of the areas where I struggle. Rebuilding only comes when I try, and that usually means some trial and error. It’s risky, because an error could mean too much stress and lead to a seizure. In my mind, I have to always push my limits or I’m stuck in the same four walls that slowly creep in on me. It is worth the risk to try, because sometimes I win.

Today I ventured off to get some supplies for the youth ministry. Ok, first of all, NO, nothing about this involved a trip to Target so I felt completely safe. All I needed to do was go to B.J.’s and get some supplies off a list I had been given. Seemed pretty simple and straight forward to me and it seemed like the perfect kind of task to take off someone’s already overflowing plate. After all, today is Tuesday, and I still like to stay busy on Tuesdays. Yeah, I got this.

I only took two wrong turns getting there, and I still say the signage is awful, but I got there. I talk to myself when I drive. I told myself it was funny that all the old people can get in this parking lot but I couldn’t figure it out. I laughed, probably out loud. I pulled into a parking spot and saw the enormous buggies and the platform dollies. I started looking around at the people coming out and the bulging buggies and it hit me like a ton of bricks. What in the world was I doing? What planet was I on thinking I could manage getting around a store this size, dragging a dolly that would carry my family, my brother’s family and my mom, AND have a successful trip? Self chatter again, “you are here now so just go”.

I will admit that I couldn’t figure out where the stupid door was to get into the building. Again, signage people! I waited for someone to walk in so I could find my own way by following them. I surely didn’t want to run head on into the out door dragging 6′ long dolly do nothing behind me. Once I got in, I made small talk about the weather with the nice man checking for my membership card and I ventured into the concrete abyss.

I spotted the aisle that would likely have most of the things I needed and I headed that way. Suddenly I stopped and just started looking around. These aisles were long, really really long. The ceiling was high, unnecessarily high and yet it was stacked within inches of the ceiling with merchandise. I wondered who needed all this stuff. Christmas gifts, candy and ornaments were already out but thankfully there were no inflatable singing dancing moving things, because in that brief moment of overstimulation it is possible I would have had to puncture some cute Santa to eliminate some noise. As I stood there I was whisked back in time. I used to love this kind of shopping, a warehouse store, yummy goodies in bulk at discount prices! Who wouldn’t love that?! And I realized, today was the first day since early 2005 that I have walked through the doors of a store like this.

Fight or flight? I had two choices. One, leave dolly do nothing in the way of every customer and walk out (assuming I could FIND the exit), or two, fight to regain my confidence in an uncomfortable situation and stick it out. I reached in my pocket and pulled out my list. I looked around the store and I think I actually said out loud “I can do this”.

The first aisle was like hitting the jackpot. I checked off the majority of my list in one aisle. It took several runs up and down the same aisles and back and forth across the store (dragging the now heavier dolly do nothing) to mark off the rest of the list. I kept looking for someone to ask where I might find things, but I guess lower prices does mean fewer employees. I only ran into a few displays and I didn’t knock anything over so I totally see that as a success with a loaded dolly. My list was checked off, my merchandise was stacked neatly and I headed for the checkout. I had stopped several times, confused by the placement of items, confused by where to find prices and confused with the choices between items. I caught myself questioning the sensibility of this trip. Each time I shook it off, determined to prove I could overcome. Nothing ventured, nothing gained. I had already ventured and I was determined to gain.

The lines were super short, cue the Hallelujah chorus, and I pulled up and began putting the smaller items on the conveyer belt. No problem checking out, until I pulled out the money to pay and the cashier realized I was paying for the entire order with just a couple of $5 bills and the rest $1 bills. I realized a line was beginning to form behind me and people were pushing me along. I had to stand in front of a teenager and count out the money. Ugg, counting always throws me off because I forget where I am and I had to count very high. Part of me wanted to tell the guy I wasn’t a stripper using all my tip money to pay and that really this was for my church, but as the conversation played out in my head it seemed useless, though it did provide me some humor. Since I was using $1 bills I didn’t want to embarrass myself by giving him way too much so I had stacks of $20s and then some $1s. I tried to figure out how to give him enough for the bill within a dollar. Then I realized he was in training so his supervisor said she had to count it out too! Oh mercy me. I glanced behind me and saw the 4 items the customer behind me wanted to buy and I could feel her frustration on my neck as I again tried counting, now with the cashier counting each stack that I gave him, and his supervisor counting it again too. The line kept getting longer and I kept repeating and counting “$20, $40, $60, $80, now what’s the total again?” Finally I, or we, got it right and he handed me my change, just a few coins. I had counted correctly, within a dollar of the total!

As I pulled 6′ long dolly do nothing towards the exit and the friendly weather talking man who was prepared to review my purchases, I glanced back into the store. I saw the long line that had formed behind me and I saw the insanely large store. I looked at my purchases and smiled. I had done it. The man looked at my pile and said “Wow, you sure did pack things neatly into these boxes.” I grinned and winked at the old man, grabbed dolly do nothing and said “Yes, yes sir. I found everything I needed here today.”

Nothing ventured, nothing gained. Today I ventured. Today I gained.

© Copyright Gatewood Campbell, November 2013

Sometimes the Glass Really is Half Empty

I try, I really try to see every glass as half full, not half empty. A glass is round and when it is hit by something it bounces off in a completely different direction. It can’t be hit by the exact same thing in the exact same spot. So when I look at life as a glass half full, it is headed towards overflowing and by design it can not be penetrated. This keeps me moving forward, pressing on, determined not to be depleted or shattered.

But sometimes the water is full of air, full of bubbles that make it too cloudy to see through. Or the glass isn’t transparent so who would know if it really is half full or half empty? The glass can seem square shaped, making every pot shot bounce off and hit in the same spot repeatedly until it is broken. With a square glass holding cloudy water what do you do? If the glass isn’t transparent, you can’t press on enough to see through the glass, the battle is lost before it has begun.

Your normal is not my normal, or anyone else’s normal. Everyone has something unique that makes the definition of normal itself, unique. We each have something to conquer each day, something that has the ability and weight to sink us to depths that would drag a bobber to the bottom of the lake.

I have learned, well I am still learning, to live with epilepsy and a brain injury each day. I often wonder if it were just a brain injury, how would life be different? If it were just epilepsy, how would that be different? If my already injured brain weren’t dependent on medicine to limit seizures, what would be different? If I never had to go to Target that winter day in 2005, how would my life be different? Now, I know and I can list off in excess, the ways that my life has been enriched because of my circumstances. I will never ever deny the tremendous value of the experiences I have had or that my family has had due to my injuries. That walk in Target shaped my family into who we are today. There is much for which I am grateful and that enables me to see the glass half full.

Sometimes though, I just need to allow myself time to acknowledge there are consequences of my fall that just plain suck. I have yet to find a medicine, and I have certainly tried my fair share, that doesn’t have some side effect that over time becomes intolerable, either for me or for my family. I hate that I hate when the phone rings, because every nerve in my body flinches with fear because I’m about to be forced into a conversation that I did not initiate. I will be forced to try to decode my misfiring brain into words that may or may not communicate correctly. I will be asked questions that I need time to understand and to answer, yet the caller will expect quick responses, because that’s how a normal person responds. I hate that I cannot initiate a conversation of much merit because my brain is just a blank canvas without even a paintbrush. I enjoy watching my family laugh and scream on roller coasters, but I get tired of just walking from ride to ride and sitting at the end of the off ramp because I can’t ride with them. My family loves to watch a brilliant fireworks show, but I get bored holding my chin to my chest with my eyes closed. It’s frustrating to look in my closet and not understand how to put together a snazzy outfit that matches. (I’m so glad I have boys that aren’t dependent on female advice about fashion…I can not fathom the disastrous outfits that I would have put together for a girl.) It’s embarrassing to look at a teenage cashier and have to walk away leaving all my groceries on the conveyer belt because I’m confused by the sale price or the coupon or just the small talk they are genuinely trying to make with me. I feel horrible guilt when the boys’ teachers ask for volunteers and I don’t respond. I imagine them thinking “she doesn’t work, so she should have her hiney helping somewhere”. It’s embarrassing when I can’t understand the directions a 3rd grade teacher is giving for a game. It only gets worse when the kids try to explain and I still don’t understand. And my confidence hits rock bottom when the teacher tells the group of kids their leader has misguided them. When my son looks at his classmate and explains “she just doesn’t understand”, the fishing bobber has joined me at rock bottom. It’s humiliating to have to say no. I can not begin to put words to the demeaning feelings that overwhelm me when I have to say no to volunteering at my church. I, of all people know the need for volunteers and I should be first in line with a hand raised, but I can’t, I simply can’t. I know the need, but my role is as a seat filler now.

**Hold that thought….my phone alarm has just alerted me that it is time for a dose of medicine. If I hit snooze I may not remember to take my medicine later. I would like to continue with my train of thought, yet I am forced to stop….with a body dependent on a consistent dosing of medication that allows me to live my kind of normal. I can only hope to remember where I was in thought.**

Ok, I hope can resume regular programming now…

I share these things not because I am seeking sympathy. I don’t need sympathy because I know without a doubt that I have blessings that continually overflow. I share these things because sometimes I need to allow myself to vent and admit that there are some things that just suck. I have adapted. My entire family has adapted. That doesn’t mean that I have to like it all the time. My square glass has been leaking slowly for some time now. Maybe it finally shattered from relentless pot shots and the cloudy water has soaked my fingers and toes.

This season will pass and I will more fully accept and adapt to whatever circumstances come my way. The good news is that when a glass breaks, it is thrown away and replaced with a new one. We refill it with crystal clear water and the glass remains half full.

© Gatewood Campbell, August 2013

About Me

It has taken me a long time to find the strength to update my bio without including my role as a granddaughter. I grasp the concept that my Grandmother no longer answers the phone when I call, but her voice, her wit, her style and her legacy are with me each day. My days with her changed my life forever and she would want me to use that for good, for myself and for others. So, here it is….the updated bio about me…

Call me a wife, call me a mom, call me a daughter and call me a friend. I’m closing in on 40 and have reached that point in life where we look back at where we thought life would take us, compare that to where we are and focus our sights on what is next. My future holds the fast paced life with a high schooler and a high energy elementary student. Our boys keep us expecting the unexpected with their love of life and desire to divert from the crowd and be themselves. I am one proud mama!

I’m self-sufficient, independent and I don’t like change. I prefer the organized to the unorganized and I like to have a plan. Ten years ago, with 2 beautiful boys, our family was complete. I was ready to take on the next chapter in my life. I made my health a priority and rid my body of an unnecessary 75 lbs. I had a goal, I had a plan and I lost the weight…and I have kept it off for 9 years. After that, I decided to run a half marathon. I had a goal, I had a plan, and I ran 13.1 miles. Ready for more of a challenge, I decided to run a full marathon. Goal, plan, 26.2 miles; done. Clearly there was a consistency in my approach to life. I moved on in my career too. I was finally developing and running my own programs. I felt like I was on the verge of really blossoming in every area of my life. And then…I had to run an errand for a project at work. I walked into Target, and was later taken out on a gurney. I slipped and fell in the store. My head suffered the impact of my fall. I woke up in the hospital. That was the first of several ambulance rides that year. That fall was over 8 years ago. The results of my errand to Target will stay with me for the rest of my life. I was diagnosed with a Mild Traumatic Brain Injury and eventually developed Post Traumatic Epilepsy, both due to a simple fall in the trashcan aisle.

Since then I have learned to live without a plan. I have learned to live with the unexpected. I have learned there is power in asking for help and there is power in accepting help. There is a greater power in taking the difficult experiences, turning them right side up and paying it forward in a positive way. I’ve learned that adjustment is a necessity. Since that day in Target, I walked away from my career and embraced a life that is full of all that matters most. I flow freely between wife, mom and daughter. I have completed 9 half marathons and 4 full marathons. Through many of those races I raised thousands of dollars to benefit the Leukemia and Lymphoma Society and the Epilepsy Therapy Project. I’m evolving into an advocate for epilepsy awareness by sharing my own experiences and learning from those who have been where I am.

I have a brain injury and I have epilepsy but they will never define me and they will not limit me from setting big goals. I have learned to adjust and I have learned to change. Change can be eternalIy powerful if we use it correctly. I have learned the positive value of embracing change and remind myself to be thankful everyday for the gift of seeing the sun in the sky and walking (even running) on my own two feet.

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© Gatewood Campbell, July 2013

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

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