Thursday, August 24, 2017

“The world breaks everyone and afterward many are strong at the broken places.”

In this case, the world broke my brain.
And in turn, broke me... And now I'm trying to be strong again. I'm not there yet, but damn, I love me some Hemingway.
I think it's fair to say anyone who knows me would describe me as an optimist. I have often been described as "sunshine", or "bubbly", or my favorite "rainbows and butterflies"....  I am a happy person. I am annoyingly happy. I am one of those people that draw in other people because I have that sort of energy. I'm not saying this to brag or to ... whatever... I'm saying this because other people have said it about me.
When I was going through my divorce, and I didn't understand why my ex-husband wouldn't let me help him through his depression... and why I seemed to draw in people with depression- my best friend has it, most of my closest friends have it actually, and now my ex, and just so many people close to me have it, and I watched SO many people in high school go through this battle... and I felt like I would meet these people and they would come to me and it was almost the first thing out of their mouth.
"Hi, I'm Katie, nice to meet you."
"Hi, I have depression. Can you fix it?"
And I know that's not how it actually happened but sometimes it felt that way.
And my friend, she looked at me, and she said, "Of course they did that. Look at you. They saw you and your happiness and your light and they wanted to suck the happiness from your rainbow. They wanted a hit of whatever you had going on."
And I never thought of it that way... but it TOTALLY made sense once she said it that way.

So let's jump into my timeline after I've stopped driving and things are rocky in the seizure world...  I'm trying to figure out life. I can't drive. I've two kids in school, one who gets out at 11:20, one who gets out at 2:15 (except on Wednesday when he's out at 1), both play sports, both are busy... And I can't drive. I can't do anything. So it's up to their soon to be stepdad, their dad, and the grandparents. And they are all AMAZING. They're shifting lunch breaks and meetings and days off and everything around and doing so many things to help and I'm just... here. Feeling useless. And helpless.
Not only can I not drive but it's dangerous for me to take a shower without supervision because if I have a seizure when I'm in there, I can get seriously injured, or drown- so I have to have someone in the bathroom with me. Or I have to have the door open. I use to LOVE to take a long bubble bath at the end of the day.... Not anymore. Can't do that. No more reading in the bath... So I hardly read anymore. It's weird how that's just kind of gone- I can't find a good place to read now- that was where I got privacy and was left alone. And I don't get that now. I am not left to relax anymore.
So my parents and my fiancé are dealing with shuttling my kids around and dealing with me slipping into and out of these weird seizures that we were told were absence seizures but now were are told may be something else and I'm given a new medicine. And I'm getting depressed. And my "light" is fading....
It's been far too long of dealing with this. My mom finds a doctor at Stanford who specializes in epilepsy. Not just that, but in WOMEN with epilepsy... and women who have thyroid disorders.. and we send her my information. And she agrees to see me. And it's amazing. And we are so excited. And she will see me after my wedding. Perfect.
Jump to April.
I'm getting married on April 29.
The Tuesday before the wedding, my dad and I head down to LAX to pick up my cousin and my uncle who flew in from Indiana for the wedding. We brought them back up to Santa Maria and we were having a great time visiting and talking and catching up.
I went into the living room to talk to my son. He was in a rocking chair and had a blanket on... I was telling him it was time to do homework, so I took his blanket off. He grabbed it, but I still had one end. We had a little tug-of-war going on, and he was rocking in the chair, and we went back and forth, just teasing each other. And as we discussed homework and how he didn't want to do it and how he'd much rather have a happy meal, and could I please take him to McDonald's, I laughed and said "Mommy can't take you anywhere, you know I can't drive."
He smiled and said "Oh yeah, why aren't you driving again?"
I said "My brain is still broken."
And right on cue, I felt an aura. I looked at him and started to say "Go get your pappa."
But instead, I woke up in an ambulance.
Remember the back and forth with the blanket? Right as he pulled me towards him, I fell flat on my face on the hardwood floor. He thought I was joking at first. Both of my kids did. My daughter was in the room too. My poor sweet babies were the only ones in the room and saw the most violent seizure to date.
When I came to in the ambulance, I had blood all over my hands and couldn't figure out why. I could hear Randy's voice. He had refused to NOT get in the ambulance. He told them he wasn't going to drive separately and they had to let him ride along.
I had fallen down on my face, and then convulsed and repeatedly hit my face against the floor. The kids, as I said, thought I was joking at first. I had shown them a PBSkids video about seizures so Brody quickly realized this wasn't the case and he yelled out for the grown ups. My parents said when they came into the room, they just saw blood everywhere and couldn't figure out what was going on. My sweet cousin just whisked the kids away into the backyard as quickly as she could to go play.
I bruised my face up pretty bad and almost killed my front tooth off but somehow it healed itself (after it turned gray, it decided to heal). Thank goodness my sister in law is amazing with makeup and you can't really tell I have bruises in my wedding pictures!
This is still a really hard thing for me to talk about. I hate the thought of my kids seeing me like that. I hate thinking about how terrifying that must have been for them. They're both still very shaken by the whole thing, as we all are. But they will bring it up from time to time- Quinn more than Brody. The other day, I opened my eyes wide as I listened to her story and she said "Mom! Don't do that. When you open your eyes big like that, I think you are going to faint again because your eyes did that before you fainted and had your seizure." And she will just say things like that from time to time. 
And Brody has witnessed a number of complex partial seizures. And the poor sweet boy is terrified whenever he sees me looking anything less than 100%. 

I met with the Stanford doctor after the wedding. And I had to relive that moment. And it's so hard. Typing it is difficult but actually saying the words to someone who knows the questions to ask, who wants the details.. it was awful. I cried. My mom cried. The doctor looked like she might cry. Anytime one of the kids brings up what it was like for them to relive that moment, it breaks my heart. I can't imagine what it was like for them in that moment. 

And now I struggle with work, with not driving, with knowing my kids are terrified of pretty much anything I do... and I feel so ridiculous. Here I am, in my 30's, and I can't shower on my own. I can't take my kids anywhere. I can't really be left alone. I pretty much can't use the stove if there isn't an adult around. I NEED a grownup at all times even though I am a grownup. 
My medicine makes me bitchy, or grumpy, or forgetful, or tired, or my personal favorite- a drunk sloth. And I can't function like this. The one med that works the best, but still not well enough, makes my hair fall out- I cry almost every time I wash my hair. It's horrible. Handfuls of hair just fall out. And the companion medication to that one is making me gain weight... When I met my husband, or not met because I've known him forever, but re-connected with him, I looked great! I loved the way I looked, I was confident and full of energy and felt really great about myself. I'm now 40 pounds heavier and losing my hair... Not feeling so great. 
On top of that, I feel like an idiot. I am forgetting easy things- how to reply to emails, what capris are called, how old I am, what month it is.. next I will probably forget my own name. 
All of this, it's depressing as hell. I am depressed. And I've never really felt this before. Sure, I've been sad. I went through a divorce, that was sad. It was a hard thing to go through. But I powered through, I got over it. This though... this is tearing me down. It's breaking me. 
I'm a pretty stubborn person who has and continues to put up with a lot. But this is too much. I am losing track of my days. I am losing track of my life. And it's too much. 
I never thought that anything could "suck the happiness from my rainbow" but well played, Epilepsy, you happiness sucking vampire bitch. 

And the count goes back to zero.

2 comments:

  1. I am sorry that you have had to go through this. Your candid discussions, though they make me cry are well written and moving. Thank you for helping me to see the epilepsy through your eyes. My son had a seizure in August while doing dishes and hit the granite counter multiple times and perhaps fell into or over the dishwasher and hurt his spine. We feel powerless as parents and want to overprotect him as well. His pediatric neurologist of 20+ years shared that is no way to live life. He says he should just be a kid because life is uncertain and if we lived in fear of all of the statistical propabilities that something bad coukd happen we would be paralized by fear. His advice, let him live...take precautions but let him mountain bike, let him head the ball in soccer, let him swim with adult supervision...epilepsy does not define him, and with Keppra being the best medicine to control activity if given in the right doses just expect the seizures to be controlled after the first six months. I however see a change in our son. A grumpiness, a fear, anger, headaches, anxiety that was not there before...and I want to take away this reality for him. If he can get hurt this badly doing dishes, or taking a shower...driving seems so risky, which is detrimental to a teen...but must be crippling when others are depending on you. I am sorry, my heart breaks with you and I now see a glimpse of perhaps my own sons thoughts and it helps me understand him a bit better! Thank you for sharing your heart, hurts, journey, and hopefully one day soon success story to living with the luckiest of the unlucky diseases! Proud of your strength and glad you have a loving and supportive network.

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    Replies
    1. Kristi-
      I'm not sure why it took my so long to see your comment. Thank you for kind words. I am sorry your son is struggling through this as well. I am glad I can give you some understanding on this side of things though as a mother, I can certainly understand things on your side as well.
      I hope Keppra continues to work for him.
      Live life and have fun. :)

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