Category Archives: Epilepsy

by

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

by

Shaken, Not Stirred

Shaken, Not Stirred

Philadelphia Half Marathon 11.18.12

Life is always more fun with a friend, so shouldn’t we all surround ourselves with a bunch of great friends?! I’m feeling like the luckiest girl in the world to be surrounded by a dedicated group of friends who are committed to Team Shaken, Not Stirred! We think big and Team Shaken, Not Stirred has set our sights on raising $10,000 for the Epilepsy Therapy Project! We need your help to make that happen! If you want to know why this is important, keep reading more of my blog. If you want to learn more about the Epilepsy Therapy Project visit www.Epilepsy.com.

Donating to ETP and supporting Shaken, Not Stirred is super simple, just click this link https://epilepsytherapyproject.myetap.org/fundraiser/2012PHLMarathon/team.do?participationRef=3917.0.251389978 and you can select to sponsor any runner or make a general donation to sponsor the team.

Thank you for taking the time to read about my journey and more importantly for supporting  Team Shaken, Not Stirred! 

Gatewood Campbell

 

by

Fear NOT the Change

Several months ago I wrote about fear and why we have it, why we need it, and what good it serves. Today I’m facing fear again and it leads me back to the same questions.

Once a week I sit down with a ziplock bag full of medicine, my green seven day pill box and a pill splitter. This morning I dumped out the bag of bottles and looked at the notes I scribbled months ago during a conversation with the doctor.  I knew the date was coming and it made me sick to my stomach to even think about it.  After four months of stepping down dosage of my main anti-seizure med and stepping up a new med, today starts the last phase of the weaning process. I will take a minimum dose of the medicine that sustained me for the last 6 years and the highest dose of the new delight (I nicknamed it that to convince myself that it’s fun). It raises so many questions when forced to depend on something new. Though I have been very slowly raising the strength of the new drug while even more slowly decreasing the old, fear of change remains. Will this work?

So when faced with fear I remind myself to turn more directly and look to my Creator, the One who molded and shaped me in His own image. I must trust Him to see me through this fear-filled time and carry me safely to my next great adventure.

Copyright © Gatewood Campbell, May 2012

by

He Will Renew My Strength

“But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint.”  Isaiah 40:31

 

I waited. I hoped. I prayed. I tried to be patient. I was afraid I was too weak. Sometimes I wondered if I would ever be able to do it again. It’s been 3 months since I have felt secure enough to run alone. I missed the calm of my solo runs. I longed to soar like an eagle on a windy day.

It’s been 3 months since I felt that weird feeling in my stomach that I recognized as trouble on the horizon. I looked at my image in the rearview mirror and saw the twitching in my face and neck. I felt it moving down my shoulder into my arm. I felt the numbness in my face and lips and I knew what was coming. I got off the road immediately and turned the car off, pulled the keys out of the ignition and put them in the seat beside me and let nature take its course for the next little while. I’ve learned to handle life’s emergencies and not freak out. Hey, I don’t mind sitting on the furniture display in a store and waiting for my husband to come and get me either. Move along people, there is nothing to see here, and by the way, don’t buy this furniture because it is not comfortable, in case you wondered.

After the seizure several months ago there were 3 more over the next month. We added an additional medication and after playing around with the dosing, I think things are better under control, but it comes with new side effects. This time I’m not the devil’s twin sister, at least I don’t think I am (no comments from the peanut gallery please), but it does make me very dizzy, very very dizzy. I’m not afraid of working out at the gym because I’m in a class setting and the instructor knows about my health condition. I run with a group and they all know about my health issues, so I am safe when I run with them. But, I haven’t been ready to run on my own. I have always carried a cell phone if I am alone, but these new meds are different and this dizziness is different and I have to be sensible.

This morning I felt good. I felt strong. The hills didn’t seem quite so steep and the mileage didn’t seem quite so long. When we got to the 8 mile mark it was time to turn left and head back in. My two runner chicks were ready to head in, but my legs weren’t, and my head wasn’t. I guess my face showed it. Sharon, who first introduced me to running in 2004, saw it in my eyes because she looked right at me and said “You are not done are you?” I looked to my right, and the only place to run is uphill, and I knew I would be running solo for the first time in 3 months if I decided to do it. Hmm…. “Yeah, you two head in and I’m turning right and running up this hill and adding on a mile.”

As I turned and began running alone I only heard my breath, my footsteps, the swishing of my arms and legs. This was so different. Even though we may separate some as we run, I can always hear others nearby, but when we go in opposite directions there is complete silence. I was alone. For the first time in 3 months I was on a solo run. I was over 8 miles into my run, solo for the first time and feeling stronger than ever, heading up the dreaded Knox Hill, because I wanted to, because I could, and loving every minute of it. WHAT?! Who said that? Did I say that?

OK. Wait for it. Wait for it. This is the moment when I remind myself that I’m supposed to buckle my seatbelt, put on a helmet and HOLDFAST for a wild ride.  “But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint.”  Isaiah 40:31

On this beautiful windy February morning, God reminded me that I have put my hope in Him and He has renewed my strength. He gave me wings to soar like an eagle and I ran, and I ran, and I ran, and I was not weary, and I was not dizzy, and I did not faint.

I am blessed, because He has blessed me. It is that simple. He has blessed me.

Copyright © Gatewood Campbell, February 2012

by

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