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Just a Little Bit Longer

“How much longer?”

Everyone is asking. Seems like it has flown by to everyone else, and in many ways it has. It seems like forever to me, and to others it has felt like that as well. How much longer until I can get behind the wheel? I have 2 more months. I am so tired, and embarrassed of having to ask people to do something for me. This is so difficult for me. Boy am I really being refined there!

Truth is, the closer it gets the more anxious I am. Each day I am more fearful that I am going to have another grand mal seizure and lose consciousness, thus starting the entire process over again. I am afraid that the black hole that this new medicine has created in my brain will make me too much of a lunatic to drive with any sense. Will I remember how to drive? Or will I more likely resemble an inexperienced 15 year old with a permit? Gasp, been there, doing that….deep breath in through the nose….out slowly through the mouth…and repeat until you reach your destination. 

I’m surrounded by people, loving family and friends, yet epilepsy and the medication we have to take, force us into an obscure place that others cannot understand. So often it isn’t epilepsy that causes the problem, it is the medicine that is the evil. It takes away the person that we once knew when we looked in the mirror. I know that I do not make coffee in the laundry room, yet I found myself walking into the laundry room with coffee and filter in hand looking for the coffee maker. On more than one occasion I have looked at my 10 year old washer and dryer not knowing what to do with the knobs to make them start. I was at the gym and I forgot how to do a sit up. I can’t even explain that one. I just knew from how my body felt that I was doing it incorrectly. I couldn’t form a correct sit up. Simple facts that I have always known and been able to recall are just gone. I hope I can run again without being dizzy. Conversation is so hard. My black box brain is so empty. The words come so slowly, each word is so delicate and so cautious. I’m confused by the smallest challenges. My fourth grader has long surpassed what I can help him with in his school work. I have a college degree and I can’t help him with his homework. It is degrading. Parts of who I was… vanished. So who am I going to become? What am I going to do? Change is hard. No one likes change. This medicine is good; it is keeping me from having seizures. I have to remember that.

This has been a hard winter on many levels. It was so unexpected. I’m not used to dealing with the new side effects of this person that has been created and working so hard to dig up the layers beneath to find me. I want to be the mom that I used to be for my children and the wife that I used to be. I want to be the friend that I used to be. I want to run like I used to. I want to be able to work out like I used to.  I want to juggle those things and more. I want to give as much as I receive. This spot, this place, it is so uncomfortable for me.

On Sunday these words from Always by Kristian Stanfill spoke to my heart. “Oh my God, He will not delay, My refuge and strength always. I will not fear, His promise is true. My God will come through always. Always.”

A few weeks ago I was cleaning out some things and I stumbled on 3  greeting cards that I had tucked away for safe keeping some years ago. They were mixed in with some other things so obviously they were something of meaning so I pulled them out to read. One of them was from my Grandmother. All it said on the inside was

“Peace!

         Emmer”

There was no date. The card had a little bird on the front so it didn’t indicate a holiday, but she wouldn’t have wasted money on a holiday card anyway. She likely just sent me a card during some difficult time. I could see her gentle teary eyes and feel her soft arms wrapped around me. I needed that little hug.

I know God will not delay. I know He is my strength. I know His promises are true and I know He is all I need. I know He hears me when I am anxious, He knows my fears before I know them and I know His ways are better than my own. I know that, I know that, I know that. My God will come through always.

This journey has been a doozie. How much longer is really anyone’s guess, but I am ready for this roller coaster to come to a safe and complete stop. Oh yeah, I can’t ride roller coasters. I forgot.

© Copyright Gatewood Campbell, May 2014

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I Really Am Counting

If I am being totally honest, I have been mentally waiting for today, the halfway mark, so I can begin the downward ride on this rollercoaster. I have 3 months left until I gain my wings again. Every 3 or 4 nights I have this recurring dream that I take off in the car because I have forgotten that I’m not supposed to drive. Then every once in a while I have a dream that I get in the car to drive and I have forgotten how to drive. I also dream that I have forgotten how to get anywhere because I don’t pay attention to where I am going because I’m not driving.

Oh the dreams I have on these new meds. That is a whole Lifetime Series! They are crazy dreams, and they are so real that I confuse my dreams from reality. I wouldn’t even call it a circus. It’s more like being on steroids while riding on a raft flowing upstream with the Village People through an international bazaar in Arizona. Nothing really fits, if you get my point. Every morning it takes me about 30 minutes to come back to earth. But, the meds seem to be working. I haven’t had any major seizures. The physical side effects are minimal and I think I am coping okay with the mental side effects (Johnny is the real judge of that). I still have several more weeks until I am completely off the old and on the new and then it takes a few weeks of the new magic juice to really know if we have the winner, but all signs are good.

I’ve been home for 4 months now. It feels like a year has passed. I feel like I should have accomplished more than just laundry. My husband tells me it’s ok. I’m going with his vote. I’ve learned to navigate the bus system. I love the freedom that gives me. I don’t have to try to figure out multiple schedules or make a bunch of phone calls. The biggest change on this med is that I really have to break things down into very VERY simple terms. It gets difficult when things take more than 3 or so steps. Trying to arrange getting the kids somewhere for a specific time can be the most confusing activity for me. Getting myself a ride somewhere and figuring out where they are going too can do me in. If I can just hop on the bus and skip calling around and organizing rides, it is a breeze. I love that!

We are so fortunate to live in town, close to many things, close to friends and close to our family. People have been so gracious. We have several friends who give rides to the boys every single week to various things, and we are so thankful. The cars just show up and the kids just head out the door and it has become routine. These are gifts for which we will never be able to repay. Kudos to my Mom who takes me literally everywhere!

I’m doing okay. I love my God who gives me each day. I love my husband and my family and my dog. I love my friends and I’m thankful for the help we have had. We are truly blessed. I think God chose the strongest rib from Adam when He created Eve, because on whole, women are pretty strong and determined to get through whatever comes our way. Can I get an Amen?

Thank you for all of the love and support you have been to our family. It takes a village (not the Village People) to make this family operate and without your help it would be a circus! So, for now, looking forward to another successful 3 months! I will resume quietly counting.

© Copyright Gatewood Campbell, April 2014

 

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Learning to Loosen My Grip

We all do it. Don’t kid yourself. We want to control our lives. We want to be independent. We want to choose our ways, our days, our plans, our whatevers. While taking care of my Grandmother I listened to her talk about how frustrated she was about having to give up the way she liked things to be. I spent her last years helping her as best I could, among other things, make those things she could no longer do for herself as much like she would have done them herself. Some seemed so silly (who really irons cotton t-shirts?) but they were things that made her life feel normal and she too worked hard to continue normal life even when she was weak and frail.

She did not choose to be 98 and still living. In fact, and she would have been the first to tell you she would go to bed during many thunder storms and pray lightning would strike her, only to awaken disappointed in the morning. She would frown when the doctor would tell her nothing was wrong with her. What she did teach me was to learn to loosen my grip on independence and make the best of where you are. She woke up everyday, not always happy to wake up, many days wanting to stay in bed and cover her head with her covers, but she chose differently. She got up and she got dressed. Getting dressed included shoes and lipstick, always. Sometimes she wasn’t dressed until 2pm but she got dressed. And her bed was always made. Always. Except for one day, the week before she moved to healthcare and that was the week I knew for sure she had taken a turn and would be moving soon. After that she had round the clock help and bed was made every day, to her specifications, even if that meant it had to be made several times.

I am not here by my choice but I am following what my Grandmother taught me the best I can. Everyday I get up, make up the bed and I get dressed. I can’t say I always wear lipstick. Chapstick…maybe. I am trying my best not to be overcome by the fears that taunt me. I am trying my best not to be overcome by the embarrassment of having to ask for help or even worse the embarrassment of being turned down when I ask for help. I am trying my best not to be overcome by the embarrassment of having strangers stare. I am trying my best not to be overcome by confusion. I am trying my best not to be hard on myself. I am trying my best to learn to gently loosen my grip on my own independence and understand that it really never was mine to own anyway.

I am grateful for all of you that are being so patient with me while I try, because having been on the other side, I understand that it takes great effort from you as well. So, I thank you.

© Copyright Gatewood Campbell, March 2014

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The Four Letter F Word

F E A R. It can absolutely paralyze you. It has paralyzed me.

I know we should not fear. I know Jesus teaches us to live by faith. Everyone tells me not to be afraid. But it is so easy to tell someone not to be afraid. I’m afraid that a brief moment of confusion is an oncoming seizure. I’m afraid that the loud echo of a stereo is actually an oncoming seizure. I’m afraid that the persistent beeping of registers in a store is actually a sound being created in my head indicating a seizure. I’m afraid that if something catches my eye, there might not be anything there and my world is about to shake violently. I’m afraid that when things suddenly slow down they are about to speed up very quickly. I’m afraid of another concussion. I’m afraid that people will be afraid to be around me because they will fear I will have a seizure in front of them. I’m afraid of having a seizure in public. I’m afraid parents won’t want their kids to come play with my children because they fear I can’t adequately supervise them.  I’m afraid that maybe I can’t adequately supervise them. I’m afraid the seizures will never stop. I’m afraid of going to sleep one night and being taken by epilepsy.

I am trying so hard. I know I am fortunate. I know it could be so much worse. I know there are so many other people dealing with far worse situations. I know I should be focusing on the things that are good and not the things to fear. I know what Jesus has taught us to have faith and not to fear. I hear what each of you are telling me. I’m trying, I really am. But this F E A R, right now it is just paralyzing.

© Copyright Gatewood Campbell, February 2014

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How Did I Get Here?

I blinked. My world shook. I looked into the eyes of a stranger and asked “How did I get here?”

Epilepsy. It came into my life from a fall nearly 9 years ago. One might think I would be used to it by now. Not so. I’m thankful for the quieter years when my seizures were, for the most part, controlled by medication. I lived in a world shaded from the truth that epilepsy changes your life forever. I’m glad I had those years in the shade, but I have walked out into the sun now and I do not like it.

In the last two months I have had two grand mal seizures. Both times I was alone on a sidewalk. The first time I was caught off guard and had no time to react and have the scars to prove it. The second time I had about 10 seconds to know I was in bad trouble. All I could think was SAVE THE HEAD and I moved to the grass and dropped to my hands and knees. I never want a staple gun smashed into my head ever again. I successfully saved my head. But I found myself looking into the eyes of a stranger once again and asking “How did I get here?” Again, another gentle voice told me I had a seizure. Best I recall I thought something like, oh @&^%$#. I don’t remember much after that. It is weird that each time I have a brief memory with an EMT and then I lose an hour or so and pick back up when things are calmer and I’m settled in the ER. Settled in the ER, now that is an oxymoron if ever there was one!

It is all overwhelming. I just didn’t realize how my life would change. I didn’t realize how the lives of my family would have to change so much. I don’t know how to adjust so quickly. I want to go back into the happy shade of controlled seizures. I don’t like the sunny side of seizures at all. After the first seizure I was counting down until I could drive again. I just thought it was a fluke and I didn’t expect another one. After the second seizure, I realized it was more than a fluke. Now we are dealing with more than just small breakthrough seizures where I maintain consciousness. The driving clock reset yet again. I quit counting down. It feels so far in the distance.  I don’t worry about driving. I just want to be seizure free. You see, there is no cure for epilepsy. There is coping, by means of medication or surgery, but there is no cure. People with seizures, people with epilepsy; we face the dreaded “pre-existing condition” and the grind of brain changing chemicals everyday. This is my life, and 9 years later, I just NOW realize it.

I am thankful, don’t misunderstand. I am blessed in ways that can not be measured, but I live under some element of fear everyday. I have to think through where I am going and “what if?” I am just like everyone else and wish we knew that everything would be ok. That isn’t reality though. So I have to plan ahead. My husband needs to work nearby just in case that number he doesn’t know shows up on his cell phone and the caller says “Mr. Campbell?” He knows without the caller saying anything else this is not Publisher’s Clearing House calling. I don’t like that he gets those calls. I don’t like that when my son comes home and I’m not here, he instinctively texts us asking where we are. I don’t like that fear can transcend generations. I have watched the fear of my seizures pass through four generations of my family now. The fear makes me mad. Then I circle back around to being mad at epilepsy all over again. I see how people who don’t know much about epilepsy talk about it and it upsets me. I want to be understood. I want to educate them, but sometimes I get tired of trying to teach people to be accepting. Sometimes it is just easier to be quiet and hide.

I don’t know how I got here. I don’t know why I’m here. I don’t know when it will be better. I know I am not supposed to be afraid, but I am. I know I am not supposed to worry, but I do. I know I am not supposed to ask why, but I do. Normal is such an abstract idea, I am not looking for normal. Furthermore I have had too many concussions to remember what our normal was. I just want to feel safe. I want to blink and for my world to never shake again. I want that for me and I want that for our family. Is that so wrong?

© Copyright Gatewood Campbell, January 2014