Hi, beautiful friends! I'm so glad you're here and we have this opportunity to worship together!
I think a lot of the world knows that Epilepsy exists and that people have it, but I think that people very rarely understand what epilepsy is or what all it entails, so I'd like to share my story in hopes that it will bring further understanding, answer any questions you may have and mostly, to glorify God.
DISCLAIMER: there are going to be holes in this story. Because of the emotional and physical trauma I don't remember everything, in fact I remember very little most days. Also, there will be some somewhat graphic content. Please bear with me and hopefully this will make sense and bring blessings.
(It all starts in 2011:)) According to my mom I had been feeling very bad surrounding my first seizure. I think there were lots of headaches and body aches, but don't hold me to that. ;) My first seizure (WARNING: graphic content): I was at a sleepover with the youth girls from our church. As you can probably imagine there were lots of snacks and we stayed up way too late (this will be important later:)). I went to bed and then was woken up the next morning and hurried to get changed and packed up. I remember rushing around and it all being so foggy and almost movie like, I wasn't very steady and my vision was blurry. I went to the bathroom to change, I locked the door and a few seconds later I had no control over the right side of my body, my right arm...I was like a dog chasing it's tail, I was trying to grab my right arm with my left to make it stop all the while losing consciousness (this all happened in about 7 seconds). I then started falling backwards and proceeded to completely lose consciousness. While this was going on some of the precious girls at the sleepover heard moaning and banging and were asking me if I was okay and when I didn't respond, they tried to get to me, but I had locked the door beforehand so they ran to our music ministers house (we were all on church grounds:)), got a key, and at some point called an ambulance (they are so incredible and amazing and I love each of them so much!!:)) When I was coming to, I felt someone holding me and noticed that they smelled nice. :) I remember wiping my hair out of my face and whatnot, then I realized there were EMT's standing in front of me asking questions and the girls were talking and it all felt terrible. My mom came shortly after I came to and I felt so embarrassed and mad. I think the madness happened because my mom said she was taking me to the hospital to get checked out. (I remember my wonderful and amazing teacher coming out to the van and she was so sweet-- I love you, Mrs. V! My heart is so full of gratitude for you and all the precious people that were involved in this whole messy, broken, heart-wrenching, and beautiful gift of God's grace:))
We then went to the hospital where tests were run and my heart was utterly shattered. (I need to give a small disclaimer here: I do not hate or have anger in my heart, but this is truly what happened, how I felt, and my experience) I remember feeling like I had no option and my voice wasn't being heard, like I had no voice at all. A lot of anger built up and soon that's all I felt. I felt angry at my parents, I had convinced myself I was right and they were wrong, they were handling it all wrong, and they were just bad. All of which is so beyond untrue!! I believed the lies satan poured over me and I walked anger out in big ways. I was angry at anyone who sided with them and tried to put me in my place, everyone who had a different opinion was wrong and horrible and I was mad at them and didn't understand how they could possibly say/think that way. But they were right and *I* was wrong. Oh, how I wish that I hadn't hurt people. I wish I would have been grateful and used that time to glorify God instead of being angry at Him (I had convinced myself I wasn't, but I was). I wish I could change it all, but I don't because what satan meant for bad, God used for good!! Though so many people were hurt and that was one of the most broken seasons of our lives, God used it, He *is* using it! Praise the LORD!! He truly is so faithful and He truly is good, all the time, in the valley and on the mountain tops! This was a rough valley, but He was good and faithful, just as He is today. Just because our circumstances change doesn't mean God does, He is the same wonderful Father to His children in ALL circumstances!
We continued tests and I continued to be angry. At one point we went to a doctor and he dismissed it all and boiled it down to too much sugar and very little sleep. Thankfully, my parents didn't feel like that was it, so more tests and more anger and more seizures. Then the Lord led them to a neurologist (she's amazing!:)), we got answers and broken hearts. Turns out I have Juvenile Myoclonic Epilepsy and its a forever gig, its chronic, so its not going anywhere. Unless the Lord preforms a miracle, which He can absolutely do, I have no doubt! I love this disorder, though. I love what God has done in me and what He's done through this valley, I'm so grateful!! (If the Lord has planned to heal my body then, praise the Lord! Whatever His will, let it be done! I'm just super happy, broken, but happy with epilepsy). I am now on a wonderful medication that God miraculously provided. It's great and God is so gracious and merciful!! I was diagnosed at 12, my 13th birthday was quickly approaching and I was still angry and then God used something to bring me to Himself and humble me and change me and my heart. Oh, how I'm grateful!
By the grace of God I started seeing the beauty from ashes, the gifts, the miracles, it all became more clear. I re-became best friends with my bro. Our little tribe became more than family, we became friends, too. I learned a lot about parenting, life, myself, satan and sin, and mostly, mostly I learned more about God and wow!! Awestruck!
Funny side note: I remember coping by planning my future wedding. :)
There are of course some things that aren't going to make it into this blog post because of lack of memory in the moment, respect of others, and/or because if I tried to write every detail, I'd be here forever. ;) Also, there have been other seizures, this is just the first of many to follow (a lot less than a lot of people for which we are so grateful and praying for those that are going through the rough valleys).
...........................................................................
Dear #HarrisHams,
Thank you. I'm not really sure what to say, how to express adequately how thankful I truly am for you and the way you love me. You loved me so big and so strong even in the midst of my anger and rage and brokenness. You love me everyday as we fight this together and you continue to bless me and give grace. Thank you for loving me broken. I love you sooo much!! *muah*
.
.
Dear precious friends,
The way you walked this out with me and didn't let go, mind blown and again in awe of our God! You all gave grace and loved me and you didn't run when I got hard. You stayed and you kept trying and loving and giving grace and I'm so grateful!! Thank you!
.
.
Dear Acteens and teachers,
God has used you all in big ways! I am so thankful for you all and the way you took care of me. Praise God!! You're amazing and I'm very grateful that you all were there. *hugs*
..........................................................................
Where I am today, a health update:
Today was a good day, praise the Lord!! Not every day is a good day, in fact I'd dare say most days are bad days, epilepsy wise. God is faithful through every good, smiley, happy, and nearly perfect day AND every single broken, sad, and heartbreaking day, He is good ALL the time!!
Living with Epilepsy is a lot different than you'd probably expect. It is often me fighting off seizures, avoiding events because of triggers, working around the inability to do certain things, hanging with people who know the drill, and often fighting to not crumble and give up. God gives grace and loves His children so loud and I am oh, so grateful!! He sees us through every moment as we fight this!! Praise God from whom all blessings flow!
DISCLAIMER: this is not a blanket, across the board thing, not every Epileptic has the same triggers, etc. and therefore our days don't look the same. :)
I think a lot of the world knows that Epilepsy exists and that people have it, but I think that people very rarely understand what epilepsy is or what all it entails, so I'd like to share my story in hopes that it will bring further understanding, answer any questions you may have and mostly, to glorify God.
DISCLAIMER: there are going to be holes in this story. Because of the emotional and physical trauma I don't remember everything, in fact I remember very little most days. Also, there will be some somewhat graphic content. Please bear with me and hopefully this will make sense and bring blessings.
(It all starts in 2011:)) According to my mom I had been feeling very bad surrounding my first seizure. I think there were lots of headaches and body aches, but don't hold me to that. ;) My first seizure (WARNING: graphic content): I was at a sleepover with the youth girls from our church. As you can probably imagine there were lots of snacks and we stayed up way too late (this will be important later:)). I went to bed and then was woken up the next morning and hurried to get changed and packed up. I remember rushing around and it all being so foggy and almost movie like, I wasn't very steady and my vision was blurry. I went to the bathroom to change, I locked the door and a few seconds later I had no control over the right side of my body, my right arm...I was like a dog chasing it's tail, I was trying to grab my right arm with my left to make it stop all the while losing consciousness (this all happened in about 7 seconds). I then started falling backwards and proceeded to completely lose consciousness. While this was going on some of the precious girls at the sleepover heard moaning and banging and were asking me if I was okay and when I didn't respond, they tried to get to me, but I had locked the door beforehand so they ran to our music ministers house (we were all on church grounds:)), got a key, and at some point called an ambulance (they are so incredible and amazing and I love each of them so much!!:)) When I was coming to, I felt someone holding me and noticed that they smelled nice. :) I remember wiping my hair out of my face and whatnot, then I realized there were EMT's standing in front of me asking questions and the girls were talking and it all felt terrible. My mom came shortly after I came to and I felt so embarrassed and mad. I think the madness happened because my mom said she was taking me to the hospital to get checked out. (I remember my wonderful and amazing teacher coming out to the van and she was so sweet-- I love you, Mrs. V! My heart is so full of gratitude for you and all the precious people that were involved in this whole messy, broken, heart-wrenching, and beautiful gift of God's grace:))
We then went to the hospital where tests were run and my heart was utterly shattered. (I need to give a small disclaimer here: I do not hate or have anger in my heart, but this is truly what happened, how I felt, and my experience) I remember feeling like I had no option and my voice wasn't being heard, like I had no voice at all. A lot of anger built up and soon that's all I felt. I felt angry at my parents, I had convinced myself I was right and they were wrong, they were handling it all wrong, and they were just bad. All of which is so beyond untrue!! I believed the lies satan poured over me and I walked anger out in big ways. I was angry at anyone who sided with them and tried to put me in my place, everyone who had a different opinion was wrong and horrible and I was mad at them and didn't understand how they could possibly say/think that way. But they were right and *I* was wrong. Oh, how I wish that I hadn't hurt people. I wish I would have been grateful and used that time to glorify God instead of being angry at Him (I had convinced myself I wasn't, but I was). I wish I could change it all, but I don't because what satan meant for bad, God used for good!! Though so many people were hurt and that was one of the most broken seasons of our lives, God used it, He *is* using it! Praise the LORD!! He truly is so faithful and He truly is good, all the time, in the valley and on the mountain tops! This was a rough valley, but He was good and faithful, just as He is today. Just because our circumstances change doesn't mean God does, He is the same wonderful Father to His children in ALL circumstances!
We continued tests and I continued to be angry. At one point we went to a doctor and he dismissed it all and boiled it down to too much sugar and very little sleep. Thankfully, my parents didn't feel like that was it, so more tests and more anger and more seizures. Then the Lord led them to a neurologist (she's amazing!:)), we got answers and broken hearts. Turns out I have Juvenile Myoclonic Epilepsy and its a forever gig, its chronic, so its not going anywhere. Unless the Lord preforms a miracle, which He can absolutely do, I have no doubt! I love this disorder, though. I love what God has done in me and what He's done through this valley, I'm so grateful!! (If the Lord has planned to heal my body then, praise the Lord! Whatever His will, let it be done! I'm just super happy, broken, but happy with epilepsy). I am now on a wonderful medication that God miraculously provided. It's great and God is so gracious and merciful!! I was diagnosed at 12, my 13th birthday was quickly approaching and I was still angry and then God used something to bring me to Himself and humble me and change me and my heart. Oh, how I'm grateful!
By the grace of God I started seeing the beauty from ashes, the gifts, the miracles, it all became more clear. I re-became best friends with my bro. Our little tribe became more than family, we became friends, too. I learned a lot about parenting, life, myself, satan and sin, and mostly, mostly I learned more about God and wow!! Awestruck!
Funny side note: I remember coping by planning my future wedding. :)
There are of course some things that aren't going to make it into this blog post because of lack of memory in the moment, respect of others, and/or because if I tried to write every detail, I'd be here forever. ;) Also, there have been other seizures, this is just the first of many to follow (a lot less than a lot of people for which we are so grateful and praying for those that are going through the rough valleys).
...........................................................................
Dear #HarrisHams,
Thank you. I'm not really sure what to say, how to express adequately how thankful I truly am for you and the way you love me. You loved me so big and so strong even in the midst of my anger and rage and brokenness. You love me everyday as we fight this together and you continue to bless me and give grace. Thank you for loving me broken. I love you sooo much!! *muah*
.
.
Dear precious friends,
The way you walked this out with me and didn't let go, mind blown and again in awe of our God! You all gave grace and loved me and you didn't run when I got hard. You stayed and you kept trying and loving and giving grace and I'm so grateful!! Thank you!
.
.
Dear Acteens and teachers,
God has used you all in big ways! I am so thankful for you all and the way you took care of me. Praise God!! You're amazing and I'm very grateful that you all were there. *hugs*
..........................................................................
Where I am today, a health update:
Today was a good day, praise the Lord!! Not every day is a good day, in fact I'd dare say most days are bad days, epilepsy wise. God is faithful through every good, smiley, happy, and nearly perfect day AND every single broken, sad, and heartbreaking day, He is good ALL the time!!
Living with Epilepsy is a lot different than you'd probably expect. It is often me fighting off seizures, avoiding events because of triggers, working around the inability to do certain things, hanging with people who know the drill, and often fighting to not crumble and give up. God gives grace and loves His children so loud and I am oh, so grateful!! He sees us through every moment as we fight this!! Praise God from whom all blessings flow!
A Day in The Life of an Epileptic:
DISCLAIMER: this is not a blanket, across the board thing, not every Epileptic has the same triggers, etc. and therefore our days don't look the same. :)
- I often go to sleep around 2 A.M. after trying for hours
- Wake up in the afternoon sometime (or earlier, it just depends on the day's activities and how my body and brain are doing:))
- Two (sometimes more, sometimes less:)) hours later after letting my body and brain totally wake up I open my eyes and get out of bed
- I do normal people things as a not normal person. ;) Everything about my day seems so normal for me, but I know it is so much different and that is so okay with me! This is such a blessing and a precious gift from God!! I am usually a bit more slow and my brain works a whole lot different then other peoples. I take a lot more time to process things, I can't remember a lot of stuff a lot of the time, words don't come out like they're supposed to, etc. Doing things with people is often hard and I often can't do what they're doing (again this is totally okay! It's often very hard, but totally okay:)).
- I avoid lots of things like flashing or flickering lights, long periods of time sitting still (I can feel my nerves and brain and it causes me to be anxious and my heart rate goes up and that can trigger a seizure. Sometimes I can sit for awhile and sometimes I can't), loud noises-- anything that could be over stimulating/make my heart rate go up, jumping, looking vastly up or down, dark rooms, elevators, anything that could make me dizzy, movie theaters, etc., etc.
- When I go to bed at night I wait until my brain and body just can't stay awake so that I actually fall asleep because I can't open my eyes until I am getting up for the day.
And in every moment there is something beautiful and lots to be thankful for. A wonderful family who is there every step of the way, helping me and fighting with me and sometimes God uses them to keep me fighting. A community of people loving me big and serving our family so sacrificially. And a God who is GREATER, STRONGER, BIGGER then all of the brokenness. He has such a marvelous plan and loves us so extravagantly!! He is working it all out for our good and His much deserved glory! Praise the Lord God Almighty!!
.........................................................
Q & A:
q: Why don't I sleep? a: Epilepsy wise, my medicine and honestly, fear. Fear of the unknown. I could be feeling really good one minute and awful the next. And that for an OCD planner who liked to plan every day and expected that plan to be the outcome, was rough and lets just say, I'm in recovery ;)
q: What do I do when I'm up during the night? a: I get this question a lot and I never know quite how to answer it because I do a bunch of random stuff. :) I usually watch movies, write lists to calm my brain, daydream, Pray, read the Bible, etc. I sometimes even get up and go clean my room because it calms me and makes me happy :)
q: What do I mean when I say "my brain doesn't work"? a: Sometimes I can't think, I can't get my thoughts together, I can't remember things, and it is all just a fog. Sometimes I try to force my way through it, sometimes it works and sometimes it doesn't. To be honest, it's just not always worth it and it's hard and sometimes it gives me a headache and spiritual warfare is real and it's rough so I don't always try to force my way through it, but I'd just like to say, GOD IS AWESOME! ALWAYS!
q: Why do I always have a sibling/parent with me? a: I can't be alone in case of an issue and issues can come at the most random times and my sweet fam (includes the C fam:)) know the drill and take care of me so well!
If you have any other questions, I would absolutely love to answer them for you! You can DM me on IG @thisjoyfulmess or email me-- bayzeykate@gmail.com or message me on FB :)
So far I've shared how this magical, beautiful, messy, broken, awe inducing, journey got started and some facts about life now, etc., but it doesn't end there. This is so, so hard! I've been working on this post for months and it has broken me in a big ways and hurt my heart-- telling this story isn't easy, but it isn't wasted. Our pain and our sharing is never wasted!
This is certainly not the end of the story and there is so much I've missed, but know this is an absolute rollercoaster and completely insane and it changes all the time, but through every broken and dark valley God is there and He graciously leads us through.
If you have epilepsy or another illness or anything broken, know that you're not alone. Cry out to God. Maybe it's a whisper or choking out words through the tears, maybe it's literally screaming until your throat hurts, but cry out to God and just rest in Him. It's hard and it's not in our nature, but God commands us to and it's really beautiful when we do.
Thanks for reading sweet friends!
xoxo,
bk
q: Why don't I sleep? a: Epilepsy wise, my medicine and honestly, fear. Fear of the unknown. I could be feeling really good one minute and awful the next. And that for an OCD planner who liked to plan every day and expected that plan to be the outcome, was rough and lets just say, I'm in recovery ;)
q: What do I do when I'm up during the night? a: I get this question a lot and I never know quite how to answer it because I do a bunch of random stuff. :) I usually watch movies, write lists to calm my brain, daydream, Pray, read the Bible, etc. I sometimes even get up and go clean my room because it calms me and makes me happy :)
q: What do I mean when I say "my brain doesn't work"? a: Sometimes I can't think, I can't get my thoughts together, I can't remember things, and it is all just a fog. Sometimes I try to force my way through it, sometimes it works and sometimes it doesn't. To be honest, it's just not always worth it and it's hard and sometimes it gives me a headache and spiritual warfare is real and it's rough so I don't always try to force my way through it, but I'd just like to say, GOD IS AWESOME! ALWAYS!
q: Why do I always have a sibling/parent with me? a: I can't be alone in case of an issue and issues can come at the most random times and my sweet fam (includes the C fam:)) know the drill and take care of me so well!
If you have any other questions, I would absolutely love to answer them for you! You can DM me on IG @thisjoyfulmess or email me-- bayzeykate@gmail.com or message me on FB :)
So far I've shared how this magical, beautiful, messy, broken, awe inducing, journey got started and some facts about life now, etc., but it doesn't end there. This is so, so hard! I've been working on this post for months and it has broken me in a big ways and hurt my heart-- telling this story isn't easy, but it isn't wasted. Our pain and our sharing is never wasted!
This is certainly not the end of the story and there is so much I've missed, but know this is an absolute rollercoaster and completely insane and it changes all the time, but through every broken and dark valley God is there and He graciously leads us through.
If you have epilepsy or another illness or anything broken, know that you're not alone. Cry out to God. Maybe it's a whisper or choking out words through the tears, maybe it's literally screaming until your throat hurts, but cry out to God and just rest in Him. It's hard and it's not in our nature, but God commands us to and it's really beautiful when we do.
Thanks for reading sweet friends!
xoxo,
bk
Thank you! This is so much help!
ReplyDeleteHi sweet friend! :) I'm so glad!! Praise be to God!!
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