It is always nice to read someone other than myself chiming in on this subject. I’ve been on at least 9 of the drugs listed here and absolutely relate to the side effects. They are evil and they steal our lives. It is exactly as she says…necessary but not necessarily nice.
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
Dreams, Moving Sidewalks and TV before Bed
The dream came back to me again last night, the details always a bit varied, but the theme seems familiar.
I was in line waiting in a bathroom, likely place for me since I always have a bottle of water in hand. I was strangely dressed in some dance costume. Blaming that on the Dance Moms episode I watched before I went to sleep. We were on a train and the train was not on tracks, but on water, thus the train itself was going nowhere.
In the bathroom I was on a moving sidewalk that moved against me making it nearly impossible to get to the bathrooms. I was the only person that was on the moving sidewalk. Everyone else was on solid ground, moving along like normal. As I fought against the moving sidewalk my costume kept getting caught in everything around me and I was constantly yanking the costume out as it slowly began to tear and shred. People in front kept calling my name and begging me to run faster on the sidewalk but I was getting nowhere! It was a circus! I can see it still now. On the sidewalk every few feet as I moved as fast as I could with a full bladder while grabbing this crazy costume at my sides, beneath my feet were the words ‘My Epilepsy’.
I kept trying to stomp on those words as they would pass and then the moving sidewalk would flood with water and push me against the wall of the bathroom and I would have to start my trek for the bathroom all over again. Over and over again this went. The longer this went the madder I got. I watched people walk past while I fought this moving sidewalk stomping on the word epilepsy each time. I would eventually make progress. Then it would flood and fling me against the wall. There I would gather myself in this hideous shredded costume and begin to battle the moving sidewalk. I never got there. My 5:30 alarm went off first.
I think about this dream and wonder the reality of it all….except the costume…that was really bad.
Copyright © Gatewood Campbell, September 2014
Breaking Down Barriers
We try to push our children to try to new things and so in order to walk our talk, I try to push myself to try new things as well.
Several months ago, a contact of mine with the NC Epilepsy Foundation asked if I would participate with a new small group she was forming. This would be an experimental Art Therapy Group for people with epilepsy. Well…I am not an artist. She was prepared for that immediately and told me that wasn’t required. I don’t know many people locally with epilepsy and that has been one of the struggles for me. I figured why not, and I also figured I could bail on it by the time it all came to fruition anyway.
Several months later I got the official invitation to the program. Flashback, oh yeah, I did say I would do this. Seizure free for 7 months, I can drive now, though I had not driven on the interstate, and I certainly had not driven in Charlotte, so these were adventures I had yet to experience. Let me preface all of this by saying that in the time I received this email our oldest son was on his first international trip, without either parent. He was on a mission trip in Costa Rica with our church ministering to adults and children whom he had never met in an area that he knew nothing about. He was not afraid to try something new, to break down a barrier, so how could I be afraid of trying an art therapy class and driving down the interstate. Lame Mama…lame. No excuses here.
I needed to leave at 1:00pm so I started getting ready at 9:00am. How I ended up late leaving my house is beyond explanation. I stopped to get gas and pulled out my iphone to find the email with the address of the class. Yep, should have guessed this. I still can not find that darn email. After wasting 5 minutes searching for the email, I remembered the name of the building and asked Siri for directions and hit GO. Perfect, interstate was backed up. Worked for me, I had ZERO desire to go 65mph, my only issue was merging!
Don’t ask me where I was. I just followed Siri. Several times the roads were so close I was sure I was making the wrong turns and I waited for her to bark “recalculating” but she never did. There was a sweet gentleman behind me and he blinked his lights at me several times. I think it was his way of waving at me. Wasn’t that nice of him!?! For the life of me why does Charlotte have so many roads that change names? And how did we get anywhere before navigation? Anyway, I made it. Pulled in and knew I was at the right place when I saw all the purple ribbon magnets on cars. Similar to my running get-togethers where every car has 13.1 and 26.2 magnets, this gathering had a huddle of purple magnets on cars. Right place. Deep breaths.
I left my preconceived notions about this experience and my abilities, at the car and walked in the building. I have been working on meeting people, and being able to have conversations, since Target. My awesome therapist, Heather, who is probably reading this right now, started with that the day we met. It is a struggle almost everyday and it is the reason I force myself to do this type of thing…because I must break down barriers and push myself.
The class itself was good. It was the first of six, so it was only the beginning. To be honest, as hard as I tried I was still a bit shaken by the drive and I think I may have missed some of the intro. What scared me a little was that there was no instruction. We were just told to use pastels and draw what came from within. Say what? After a bit of sitting at blank white paper, by golly things starting flowing on the page. Even I didn’t think it was pretty. But one rule was no judging and no comments whatsoever on the drawing from anyone, so I was in the clear. The point was just to draw what came from within. It was really interesting! For a solid hour everything in my head was focused on that paper and nothing else. Enlightening! Really very enlightening! Afterward we took some time to write about our drawing. It was an interesting process and I am looking forward to seeing where it leads over the next five weeks.
I stepped outside into a bit of rain and it was 4:15. Splendid. Rush hour traffic coming, slick roads, I still didn’t know where I was and I had to get home. I hopped in the car and told Siri to take me home. As I was driving through Charlotte I noticed stop lights and I wondered if there had been stop lights on the way there. I didn’t remember them before. Still don’t. Wonder if I ran them all? At one of the stop lights I didn’t recognize the road at all, then I realized it was a one way street. Ah, well that was why I didn’t recognize that one. I’m so out of place in this city. I tried to be nice and let traffic in but I think it just made the people behind me mad. More honking and lights blinking…blah blah.
I finally hit a road I recognized, I-277. This is really not a relief at 4:40 on a Friday afternoon. I looked at my white knuckles on the steering wheel as I realized I was audibly saying “I will not fear, I will not fear, I will not fear” and then I broke into “damn-it I’m trying” as I saw cars annoyed with me trying to merge to get to I-77. I just wanted to get to I-77. I could have cared less if traffic was at a standstill. I was going to find a lane and stay there. Cars could blink, wave, honk, whatever, I decided I had made it to Charlotte, without an email for where I was supposed to be. I had been to an art class full of strangers. I had tried something completely new and different, and one way or another as long as it took, I was going to get home and I was not going to be afraid.
It was a long afternoon, emotionally. The hours were short, but I accomplished so much in those four hours. I proved to myself that I can break down the barriers when I put my mind to it. We all can. Our son did the same thing when he put his mind to breaking down barriers and going into a foreign land. I only went to Charlotte, it feels so lame when I say it, but for me it was a huge barrier, and on Friday I broke it down. I believe this Friday it will be a little bit easier.
Copyright © Gatewood Campbell, August 2014
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
Embracing Change 