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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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Reaching Beyond Comfort

There have been two hot topics in our town recently. One is just annoying, and the other raises moral and ethical issues and also gives all of us the opportunity to push ourselves beyond our comfort zone.

One is the new quadrant left traffic pattern which someone in Raleigh claims will alleviate congestion. That remains to be seen, amid a sea of solid red brake lights. I can’t speak directly to this as I have managed to completely avoid this area of town for 9 solid days and will continue my boycott as long as possible (on the advice of all those who have attempted to navigate said quadrant).

The other hot topic is the Town Board’s decision to deny a rezoning request that would have allowed a mental health facility offering both inpatient and outpatient care. The Town Planning Board recommended the rezoning 8-1 yet the Town Board voted down the request 4-2. I didn’t attend the meetings, but I did keep up with the information that was published and I was bothered by what I read.

The rezoning became a debate because the 17 acres in question is adjacent to a neighborhood. Here it comes, Not In My Back Yard.  Oh yes, loud and clear, that’s what the neighbors said over and over and over again. Some said they weren’t against the need for the facility, again, just not right in their backyard. I cringed as I read comments from opponents who said they were afraid of patients who might do something stupid. Stupid? Oooo, I didn’t like hearing this word used when discussing this issue. I get it. The problem is fear. We fear what we don’t understand. We steer clear of what we don’t understand. It makes us uncomfortable, so we dodge it.

Here is what I do understand. People with mental illness are still people, living breathing people. They have families who love them and are searching for qualified professionals to help them get better. They need proper facilities to help them, whether we are comfortable or not. The whole thing really struck a chord with me. Why is it ok to turn our heads or close our eyes and not look at the need, whatever it may be? 

I was disappointed that I didn’t hear anyone offering solutions or compromises that would have swayed the Town Board’s decision, or perhaps educated both sides of the issue. I was frustrated that 60 much-needed inpatient beds as well as outpatient facilities in Mecklenburg County will not be ready in 2013 which puts even more people out of help. I was frustrated that our town had a chance to employ over 150 people and missed out on it, not to mention the construction that it would have brought (as well as broken equipment, cha-ching CAT). My Grandfather spent many summers volunteering his time at Broughton Hospital to relieve the overworked Chaplain. My Grandmother and I talked about it last week. She cried as she recalled the desperation she saw in families who needed professional care for their loved ones. She shook her head and said it was a shame Huntersville had missed out on the chance to really make a difference for a lot of people in need. When you have seen it first hand it always brings a different perspective. She has seen the other side and it made her weep.

As I thought about this over the last week, I had to take a long hard look at myself. OK, Miss Priss, just what are you doing to make a difference for someone else?  Was I guilty of turning my own head too?

BOOYAH! OUCH!

Guess who else has a comfort zone? Uh huh! I can give you a list a mile long of reasons why I have a comfort zone and they all make sense, medically, emotionally and Gatewoodally. But seriously, I had to look at myself and wonder if I was going to ask others to step out, then I had to be willing to do the same myself.

Do I have any extra time to do anything else? Well, what exactly do I do with my time? I go to the gym 3 times a week and aside from the really old lady keeper and the obvious endless chores and tasks of a car-pooling and sometimes seizing stay at home mom of 2 boys who sits at home and eats ice cream all day, I guess nothing much. Oh yea, and I run. OH YEA, I RUN! That’s what I need to do! It hit me like a sign blown over by the wind! There is a 5K/10K at our local high school this Saturday to benefit the Exceptional Children’s programs in our local schools. I’m running a half marathon the following weekend so the 10K would even be the right mileage for my schedule. Perfect, except that I didn’t know anyone else running the 10K. That threw a mild kink in my plan, but Johnny and the boys planned to go with me so I wouldn’t be there by myself. Great, I can use my running to help a wonderful cause! Fantastic! So I signed up for the Run TOO Overcome, this Saturday, March 17th at 8 am.

Together Overcoming Obstacles!

The mission of the Run TOO Overcome is to provide awareness and support for the children, families, and teachers whom meet the daily challenges, and celebrate the joys, of supporting our special needs community. The Run Too Overcome unites our community each year to raise funds to provide our special needs teachers with the equipment and supplies needed to provide differentiated instruction to enrich and engage students of all ability levels.

I finished my registration and picked up Justin from baseball practice and he told me when his next practice would be – yep, Saturday morning, 9am. AH, HELLO? Guess what that means? No Johnny and no kids with me at the race on Saturday. God really does have a sense of humor folks because I’m going WAY outside of my comfort zone for this one. It’s all solo on this one. OK, so I had to get over myself and move on. The Run TOO Overcome isn’t about my comfort zone anyway, it’s about celebrating the awareness and support of the special needs community and raising funds for our local schools. If reaching beyond my comfort zone celebrates others who have overcome adversity, Amen to that!

(Don’t worry Mom, I’ll carry my phone with me during the race just in case, though seriously, I’m with Michael Scott, In Case of Emergency, just call 911).

Copyright © Gatewood Campbell, March 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

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Fear. What is it good for?

A curious thing…fear. It keeps us from walking into a busy street because we know the danger of being hit. This is a no brainer. Fear the busy road. Plenty of times fear saves us from danger and harm. For example, it’s generally in my best interest NOT to shop at Target.  Driving on Sam Furr Rd in Huntersville is hazardous to your heart, health and vehicle.  I fear Target and Sam Furr Rd, so I stay away from both, thus it keeps me from danger. You get the idea.

Fear could have kept me from walking into Weight Watchers in 2004. It didn’t. Fear could have kept me from running my first half marathon in 2004. It didn’t. Fear could have kept me from walking away from my job in 2007. It didn’t. Next to marriage and having children, those three decisions have changed the course of my personal life more drastically than any other decision I have ever made. 

The familiar walls of my home keep me comfortable. The recognizable faces of my family and friends keep me in my safe place. Texts and emails make communication much easier for me. Then sometimes I think, it’s been so long now…my inner routine…, what do I fear about the outside world?

What fear is holding me, or you, back from reaching a greater potential than we might have already realized? Am I afraid of something that isn’t even worthy of fear? How many times have you finished something you feared and thought to yourself that it wasn’t nearly as bad as you thought it would be? Oh, just in case you were wondering, marathons are as bad as you feared they would be, but they are worth every step, just so you know.

I’ve conquered some fears in the past, and I’ve got my fair share to conquer in the future and beyond. What lies beneath the surface? I wonder, would it bring me good or harm and why do I fear it so much? I certainly don’t have all the answers. Just thinking about fear. What is it good for?

Copyright © Gatewood Campbell, January 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