Tag Archives: Brain injury

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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

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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

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What a Difference a Year Makes

Last Christmas I was busy making sure my house was properly festive. I was buying two of everything I was supposed to cook because I usually do a test batch of anything I make that is really important. No worries, I have growing boys so they don’t complain. I was sneaking around trying to get gifts from Emmer for the children and for Mom. I was making wine store runs because Emmer always insisted she furnish champagne on Christmas Eve when we celebrate Mom’s birthday. I had ventured away from the usual birthday cake and convinced Emmer to get hand made red velvet cake pops. They were a HUGE hit and Emmer thought it was the greatest invention since the wheel.

We were also determined to have Emmer with us on Christmas. Johnny was busy building a wheelchair ramp to make Mom’s house accessible. I worked diligently for days to convince Emmer that she could make it to Mom’s for our traditional Christmas Eve shrimp creole. She told me it was too much work for everyone. I remembering sitting beside her chair, holding her hand and explaining that it wouldn’t be Christmas knowing she was in her room alone. She came for Christmas Eve dinner. She dined on shrimp creole. She scooped up her Charlotte Rousse, made by yours truly as a bribe to get her to come to dinner. She drank, um maybe even guzzled her champagne (until the day she died she wanted a refrigerator in her room so she could have her own cold drinks). She sang Happy Birthday to my Mom when we brought out the cake pops. She delighted in the excitement on the boys’ faces when they opened the WiiU she gave them. She tried to understand what exactly she had given them and finally she just said “well cheers”! She was weak, but more than that she was determined. Determination always conquered her weakness.

As we sat around the table that night with friends we have shared Christmas Eve with for decades, I think we all knew it would be her last. I think she knew. Lord knows she had been ready years before for it to be her last, but her body just kept on ticking. She was frail, but she looked beautiful. She had on the outfit and jewelry she and I had chosen earlier that day. She wasn’t pleased with her hair because her weekly beauty parlor appointment had been 5 days before and by then it sorta showed. It had been her bath night the night before so she felt clean and smelled sweet. She was determined and I am so thankful we had that Christmas together as a family.

This year the shopping has been different. I can’t store hop for everyone so if you were lucky enough to have your gift purchased before Dec 2, you are lucky. If not, well then you are lucky to get something. I haven’t had the energy to decorate so we hung stockings and put up a 4′ artificial pre-lit tree. I put my Grandmother Payne’s angel topper on it, hung some balls on the tree and called it quits. I feel guilty letting weakness beat out determination. That is not the way I was taught. But this year I am worn down and I ache.

The shock of the last few weeks has been overwhelming. The reality of my future with epilepsy is beginning to sink in. I am just beginning to understand that I really am going to be taking medicine for the rest of my life. There is no cure. I went 8 years without a grand mal. I had learned to cope with small seizures here and there, but this caught me off guard. It took the breath out of me, in more ways than the obvious. I realize that I will always be planning for the what if. On the bright side of things I did get some new jewelry, granted it is a medical ID bracelet, but it is purple and it is jewelry so I will take it. I hope the day will come when my husband, my Mom and my brother don’t feel like they need to call me every few hours to be sure I’m ok. I want my children not to worry about their mom. I know there are a multitude of people waiting to help me at a moment’s notice. I need to know that I can figure out how to cope with the inability to drive on my own, so that I won’t live in fear of another bad seizure. I need to know that at 40 years old, I can have some form of independence. I have been shaken and I’m still stirred right now.

This has not been the most stellar of years for us, but I wouldn’t go back in time, because I really do NOT want to relive it again. I remember with bittersweet tears our last Christmas with our matriarch and I know my Mother is equipped to hold that torch now. I take tremendous joy in the 6 years I had with Emmer and her first mate. Her humor, her honesty, her debates, her tears and her bountiful love for her family are simply unmatched. Nothing can take away those memories. It was her bountiful love that gave her the strength to have one last Christmas with all of us. It is her gift that keeps on giving.

So I look back on 2013 with joy and sorrow swirled together. I also find it appropriate to quote the great philosopher Flo, and say, “2013 you can kiss my grits.” I’m pretty sure Emmer just rolled over in her grave as she quietly explains away my candidness from a brain injury. I’m stirred, I’m afraid, but I am determined this will pass. From this point of view I must believe it only gets better because in my darkest hours over the last 8 years I can look back and see the sun was always streaming through the clouds.

© Copyright Gatewood Campbell, December 2013

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Erasing Expectations, Embracing Grace

September was a notable month for me this year. It marked my 40th birthday, which was celebrated in grand style with some wonderful friends. I felt so loved…so unbelievably surrounded by love. Late September is also the anniversary of my first grand mal seizure which eventually, and quite frankly, thankfully, led to my epilepsy diagnosis. It’s a date fixated in my memory with visions of looking across a store and looking at my 2-year-old. Everything inside me was screaming for help, for my son and for myself. I had no clue what was about to occur, I just knew something was terribly wrong and I needed someone to help us. I awoke to a sore arm where I landed on a clothes rack, another huge bump on my head and a bleeding tongue. I had the pleasure of one more escorted ride to the ER.

Eight years. It seems like an eternity and yet it seems like yesterday. I have had a hard time with this 40 thing. I’m so far from where I thought I would be at 40. Ten years ago I was pregnant, well actually about to blow a major-gasket-size pregnant, with our second child. We knew he would be our last, because hell hath no fury like a woman who has thrown up everyday for 9 consecutive months. This one was it! In my mind I was ready to settle down with our two children, adjust to a change in jobs at CAT for Johnny and find my niche in my own career at the church which was experiencing growth in monumental proportion. My plan went smoothly for a couple of years.

And then God reminded us all that He, and only He is in control of our lives. In the blessings, in the joy and in the abundance, we forget to run to Him. We forget to ask Him to guide us, to ask Him to forgive us and to ask Him everyday to be the light in our lives and let us reflect His life saving light. I had forgotten that God gave me breath, that He chose Johnny and me to raise Justin and Hunter. I had forgotten to thank Him each day for my husband, my children, my home, provisions for all of us and most importantly for sending His son Jesus for me. He knocked me off my feet so I would draw near to Him as my comfortable world around me crumbled. I guess the first time didn’t work, so He tried a second time to get my full attention.

Last week as I was running I passed a church, well actually I passed 6 churches on a one mile stretch of one road. You know you live in the heart of the south AND the Bible belt when there are 6 churches on one road within one mile. Seriously, if everyone joined forces can you imagine the power? Oh well, that is another topic for another day. Anyway, one of the churches had a marquee about the coming week’s sermon. It said “Erasing Expectations, Embracing Grace”. I ran past that marquee several times last week and each time it really struck a chord with me. My 40th birthday had me thinking about the expectations I had once had for myself. It had me thinking about my failures. My, my, my. Not once had I thought that perhaps I had accomplished the expectations God had for me. I was too fixated on what limitations I now have from my brain injury and from the epilepsy and where I might have been. I forgot that God brought me to this point in my life because He loves me. God gave me His grace to get me to this point and I had forgotten that my life is about fulfilling His plan, not my own. I have sinned in forgetting His grace surrounds me daily.

In 2 Corinthians 12, Paul writes about his thorn in the flesh and pleading with God to remove it. Some think Paul may have even been referencing epilepsy. I too have pleaded with God to remove my own thorn in the flesh. Just as God chose my husband for me, chose me as the Mother for Justin and Hunter, He chose me to have epilepsy. I never questioned the blessings of my husband or my children, yet I questioned epilepsy. Perhaps, God blessed me with epilepsy too? When Paul pleaded with God, God spoke to him and said in verse 9, “My grace is sufficient for you, for My strength is made perfect in weakness”. Well what a fool I have been! Paul reminds us that only in our weakness, our infirmities and our distresses is the almighty power of God displayed. God makes us weak so that we will trust Him, lean on Him, thank Him for our daily bread and our daily breath.

What if I wake up tomorrow with no expectations and just embraced the grace that God gave me to allow me another day? What if I face each day erasing my expectations and asking God for encounters with Him? It’s about perspective. Is the glass half empty, or is it half full? Is God part of my life, or is He my life…the source of my life?

“Trust in the Lord with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths.” Proverbs 3:5-6

© Copyright Gatewood Campbell, October 2013

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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