Tag Archives: seizures

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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

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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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Finally Running For Me

Shaken, Not Stirred!

 2012 TEAM Epilepsy Therapy Project 

Philadelphia Half Marathon 11.18.12

I used to run because my life felt like it was spinning out of control and I needed an escape. Now I’m running because I will not allow my life to spin anymore. I was shaken, and now I will not be stirred!

I was diagnosed with Epilepsy in 2005 caused by a Mild Traumatic Brain Injury earlier that year. I was only 32 years old, married ten years, with two sons, ages 7 and 2, and I was working full time. Our world was rocked in ways we could not have predicted. Seven years later, my fingertips can still recall the sharpness of the eleven life changing stitches hidden by my hair. I sat in a staff meeting unable to comprehend anything that was being said and worried that my life would never be the same. I was partially correct. I was definitely shaken!

I am still a wife and I am still a mom. I am no longer employed but instead focus my time and attention with those that I love. My days are filled with my family, including my 96 year old grandmother, with whom I spend several days each week helping age gracefully, and ensuring she has her afternoon cocktail when she chooses (a Martini, of course). I have been seen by more doctors than I can count on my extremities, been connected to enough wires to rewire our home three times over and weaned on and off drugs more times than the Octomom weaned children off bottles.  After my initial diagnosis, months of cognitive rehabilitation and some difficult trial and error with medicine, we eventually found the right concoction. With the exception of a few minor adjustments I was fortunate to have about four years with very few problems. For a while, I was not shaken and not stirred.

My world started spinning again last spring when I began having breakthrough seizures. It took me several weeks, and several seizures, to realize what was happening. I had become so accustomed to having controlled epilepsy, it never occurred to me that the day would come that medicine would fail to stop my seizures. I have tried four new drugs, all of which have serious side effects. We settled on the one with the least offensive side effects that still effectively controls seizures. I’m learning to grow comfortable with the fact that treating epilepsy will affect many parts of my daily life and it’s important that I remain vigilant. I have been shaken, and I have realized some valuable lessons.

Epilepsy is scary and confusing. Nearly 3 million Americans suffer from seizures, yet most people don’t even know the simple first aid steps to help a person having a seizure. I am blessed to be among those with epilepsy that can be controlled with drugs. I can help those that are not able to speak up; for the exhausted parents tending to their young child stricken with epilepsy and the variety of complications it brings, for the single adult trying to manage epilepsy and a job but unable to drive a car, for the teenager afraid the next seizure will happen in the school cafeteria or in English class, or for the young mom who just wants family life to be normal again. I am an advocate for epilepsy.

Combining my epilepsy advocacy and my passion for the pavement, I have formed Team Shaken, Not Stirred! We are running the Philadelphia Half Marathon on November 18th to benefit the Epilepsy Therapy Project! Seven of my running buddies have joined Shaken, Not Stirred and together we are setting big goals to raise big money and big awareness for the Epilepsy Therapy Project!

Please join me in this very personal labor of love by making a donation to sponsor me or to sponsor Team Shaken, Not Stirred. I am still in the process of changing drugs now, but that is not going to change my focus. While I am training for this race I will be in our community sharing epilepsy education and awareness. Change will happen when people are aware and I am certainly willing to speak up.

To donate (just like my children already have)  just click this link or copy it to your browser and click the “Sponsor Me” icon. https://epilepsytherapyproject.myetap.org/fundraiser/2012PHLMarathon/individual.do?participationRef=3917.0.251389979 .

I’m deeply grateful to my family and countless friends who have given me support in so many ways and especially this last year. Thank you for loving me when it has been hard to love me, for holding my hand when it would have been easier to let go and for listening when I didn’t make sense.  Thank you for letting me know it’s ok to be me even when I’m still not sure who I am. Most of all, thank you for giving me hope for an easier tomorrow.  A bold new journey is beginning and I’m thankful to be Shaken, Not Stirred!

Cheers!

Gatewood

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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

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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