The Kid In The Shopping Cart

Posted on by gehugueley

Hopefully, you have somebody in your life that is just a little bit “off.” Maybe it’s the writer, or the artist, the actor, the poet, the musician, hell, maybe they’re just crazy.  Whatever it is, everybody has a right a little lunacy.  I get mine from my dad.  He was always Off the Grid, and taught me to be that way whether he meant to or not.  I’m a musician, and if there’s anything I’ve learned about musicians, it’s that we’re all crazy (except maybe my piano teacher, he keeps it together pretty well). So many of the people that I’ve met that are actually doing with their music are such an inspiration to me.  I’ve met 6’10” scalawags that lead mosh pits in the middle of the night, pianists that played concertos to accompany works of Shakespeare, and I’ve met commercial composers who travel the world playing stomp shows with a fiddle rock and roll group.

            While I haven’t made my dent on the industry yet, I consider myself one of the many jewels that are out there.  Being Off the Grid is not something I try to do (anymore), it’s just what I am. 

Best Examples of My Weirdness:

I suffer from Selective Perfectionism, I concentrate on improvement and push myself so hard that everyone in the room can hear Eye of the Tiger playing in my head. Other things, some may argue more important things, but whatever, I just forget about.  I like to push myself about things that I care about.  I care about how I sound on the piano, I don’t care if I wear yoga pants and no makeup to school. 

I love throwing fruit at brick walls.  Since my freshman year in high school when my friend showed me that apples explode when I chuck them hard enough, this has been my favorite method of stress relief.  You should try it.  Throwing a bucket of tomatoes at a wall is on my bucket list.

Oh, and I’ve ridden a unicorn.  That may not be weird, but it’s pretty darn awesome. 

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Told ya

Lessons That Music Has Taught Me:

1. Trust Yourself

            One of my main problems with piano is that I know the pieces too well.  If I could turn off my brain and let my hands do what they know how to do, then I’m sure that I would play a lot better each time.  But, when I feel pressured to do well, I start second-guessing myself.  “What comes next? Is that where this goes? How is that supposed to sound? Where am I on the sheet music?” That distracts me, and then I start to think that I’m not doing it right, so I change the way I’m doing it.  My hands hesitate before they hit the keys, and I hit a bunch of wrong ones.  If I could have been able to keep my inner mouth shut then I would’ve done fine.  My hands know what they’re doing. 

            And that’s life.  It’s not just life with epilepsy, but it’s life in general.  Don’t second-guess yourself.  Trust that you know what you’re doing.  You need to know that your feet know where they’re stepping, and that they’ll only go where you want them to.  It’s called muscle memory.  That’s why you can totally blank out, but end up at the other end of the hallway in front of your science class.  Or finish that daydream about chocolate cheesecake and Friends reruns but still finish writing your sentence.  Trust that you know what you’re doing. 

2. Crazy Is Not A Bad Thing

            I briefly mentioned being different in my last blog, and I want to elaborate on it here.  In first grade, my mom had to teach me the word “fickle.”  She had to teach me that the Queen Bee of the class was a fickle friend because of the way she treated me.  Queen Bee would literally tell me that I was “allowed” to be her friend that day, and the next day she would pay me no heed.  I would come home crying wondering what was wrong with me, and why I was such a bad friend.  My mother had to teach me that fickle friends were two-sided people who treated everybody like that, not just me.  I was six years old, so I didn’t have some earth shattering epiphany that told me that I would never be like this Queen Bee person.  I didn’t look up from my mother’s arms with a tear stained face, and a camera didn’t zoom in at the perfect angle as I realized that I could be the different one.  But I think that I did start making changes.  I mean, I was never the frilly, preppy, pretty in pink girl to begin with.  However, from the second grade forward I can see where I went out of my way to act “weird.”

            I would act different for the sake of being different; I would do some weird dance on the playground, and then walk up to someone who was watching and ask them if they thought I was freaky.  Whenever we were asked to go around the room, introduce ourselves, and describe ourselves, I always chose different, weird, or even crazy as my one word.  Of course, over the years that led to some bullying, which I came through; and over the years I realized how stupid that really did sound when I said stuff like that.  Many of my friends in elementary and middle school were fickle, and I’m glad I caught on sooner than later.  I have a great group of friends now in high school, and I wouldn’t trade my best friend for the world. 

            I’m glad I established my reputation as “the weirdo” early on in life.  I shudder to think how I might have turned out if little ignorant baby-me hadn’t been like that.  I might actually have been sucked into the cult of Hollister and Abercrombie, the Wai-Tu-Much-Makup denomination, the sisterhood of Rigid Ribs, Peeking Panties, and Fickle Friends.  I hope that anyone who fulfills this description is happy just the way they are, but just the same, I am glad that I am not one of them. 

3.  Sometimes Repetition is Comfort, Sometimes it’s Not

            Practice makes perfect.  It’s true. When I was younger, the quota was 30 minutes of practice a day.  I would set the timer on the oven, and sit down to play.  About 5 or 6 years ago, my dad suggested moving up to 45 minutes or even an hour a day.  It didn’t hurt my playing, I just thought I had better things to do for an hour every day.  When learning a new piece though, my method is to take a tiny section and play it over and over and over and over and over….and over again for practically the whole hour.  It’s an interesting process, because I’ll begin to play a new section: I’ll be kinda bad, because it’s new. I’ll gradually get better and better, then I’ll peak, and I’ll do really well. But then I’ll slowly start to do worse again.  This happens every time I play something repeatedly on the piano.  I have to switch it up.  I can’t just sit there plunking the same thing for 60 minutes, my fingers need change. 

            Change.  If you sit at the piano of your life, hitting the same keys, over and over again, things will seem okay.  You’ll start to get to know the pattern of your life.  Things will get better, and you’ll be just fine with that, but then your fingers will slip, and that will totally mess with the memory pattern you’ve just been developing.  You’ll have to start over.  That one wrong note will seem tiny without a little change to help you along. 

4. I Am The Kid In The Shopping Cart

            Two things I love about music are that one, so much can be done with it, and two, that it can be so personal.  Take a good old-fashioned church song like Amazing Grace.  I can play it slow with nice big chords on the bottom for people to sing along to. I can play some quirky jazz chords to play it at a dinner party. I can play a bunch of empty chords if a contemporary group wanted to perform it. I could even play a nice honky-tonk hoe-down arrangement.

            Jazz theory is interesting, but it’s truly a skill.  Not everyone can do it, one of those people being me.  I’m learning jazz, but it’s very complex and I sometimes I just don’t think I’ve got it.  That’s why I like hymns: they’ve got all the chords written out right there and you have more leeway to mess around with them. I can make them into anything, a ballad, an actual hymn, an arrangement, but my favorite is the bouncing ragtime ritual. It’s fun, and if you can make something fun, why don’t you?

            That’s why I am the kid in the shopping cart.  I don’t mean the little baby sitting in the seat up front with its chubby little legs swinging away. I mean the grown kid that’s standing at the end of the basket making their parent push them even though they’re perfectly capable of walking.  Kids jump on the shopping cart in order to entertain themselves and distract themselves from the fact that this is just another boring trip to the grocery store.  I jump on my metaphorical shopping cart whenever things get too boring or too intense.  My shopping cart has a bright pair of faces at the other end pushing me on, and it’s full of fun, colorful coping mechanisms. 

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See? Fun!

            I’ve had a lot of change in my life in the past three years, some good, some great, some not so good.  But, if nothing bad had ever happened to me for the past three years, then all of this would’ve hit us at once, and we would’ve been a lot worse off.  Instead, a few bad things would happen, then a few good things, then maybe a bad thing, then a good thing, etc. That’s a lot like playing the piano.  I’ll play a song perfect and sigh with satisfaction, then I’ll go to do it again, and kerplunk! bad note straight at the beginning.  But I have to take the good with the bad.  If I don’t take the good with the bad, then I won’t get any good to go with it.

 

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The Silent Telethon

Posted on by gehugueley

 In the past year or so, a lot of things have happened. My mom has gotten sick, we’ve made some real strides towards fixing my seizures, my dad finished his book, I started this blog. I’ve changed a lot as a person as well. Sometimes I just look around and I can’t even fathom how different everything was a year ago. I didn’t even have a Facebook a year ago, whoa. But, with all that’s happened to me I like who I’ve become, because in a lot of ways I’m really different. Like freshman year I thought I was all grown up, but now, going into my senior year, I know that it’s all just getting started. However, at the same time, I’m still the same little girl that I used to be.

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Ironically, my dad checks his phone for Facebook updates more often than I do.

So my last post was about how cynical I used to be. I was sure that if I turned my back on anyone, that they would bite it. I was, and sometimes still am, rolling my eyes when the only thing people say to me about my situation is “Praying for ya!” or “Sending prayers your way!” I got sick of the same response. I didn’t doubt that people were really praying for me, but in a very abstract way, when all people did was tell me that they were praying for me, it brought up bad feelings:

Growing up in a Southern Baptist church works for some people. The routine, the fundamentalism, the rules, some people find comfort in all that, and that’s okay. But I was a misfit in all that. I liked reaching out to different people, probably because I was one of the different people. I was always the weird kid, but by choice. For some odd reason, when I was a little kid, I wanted to act as different as I could and freak out a bunch of other kids. I pride myself on that decision today. I think it’s because something inside me knew that I didn’t want to be like the rest of the people around me. But I digress. In the children’s department every week at church, we would have some person to pray for. Maybe some poor child in Africa, or some sick elderly person who was in the hospital. Inadvertently, the idea was put into my head as a child, that God would only fix the problem if enough people prayed about it. I would run around the church after Sunday School every week reminding people “Remember to pray for what’s their name!” “Hi! Don’t forget to pray for whoever!” Some people may have thought it was cute, but I imagine a lot of people found it a tiny bit annoying.

By no fault of their own, this memory comes up every time someone tells me that they’re going to pray for me. I mean, when all they do is tell me that they’re praying for me, I feel like the church is trying to meet their prayer quota, and once x-amount of people have committed to praying for me, nobody needs any personal attachment anymore. I mean, I’ve said before, Le Bonheur is great, but the days are so long when I’m staying there. My head is attached to a pole by all these wires, and sleep deprivation is a method used to help induce a seizure, so once I wake up in the morning, I pretty much just lay there all day. The only things I have to do is read, watch a movie, or watch daytime television. Daytime television is never much of an option anyways, and even reading a great book can get old after three days straight.

What I’m getting at is that I appreciate the sentiment. Really, I do. And I understand that everybody has lives outside of mine, and I in no way expect them to drop what they’re doing anytime something comes up with me. I just remember the very first day I was at the Epilepsy Monitoring Unit back in January. I had just had all the wires glued to my head and boredom was beginning to set in, when my brother walked in the door. I could feel my face light up the room. Just the fact that he was thoughtful enough to come and see me made my heart swell. Seeing someone I know walk into my room while I’m in the hospital (with or without food, I’m not picky) feels so much better than knowing that someone is in a silent telethon with the Almighty.

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My dog visiting me in the hospital, “She looks fine to me…”

On July 29th I will have part of my skull removed to make way for a piece of my brain to be cut off on August 5th. If you’re reading this, and anyone in your life is going through something big, take it from me: add a personal touch. Don’t just tell them that they’re in your thoughts. Don’t stop at picking up the phone and giving them a call. Let them see your face. Pay them a visit. Offer to meet them for lunch or coffee and talk it over. When you say that you’re there for somebody, be there for them. Actually, physically, be there for them.    

 

Teenage Wasteland

Posted on by gehugueley

 High school comes at a bad time in life. There’s high school: hallways full of people who aren’t watching where they’re going, and don’t care where you’re going. And then you’re a teenager: the weirdest most confusing time in your whole life. It can have weird effects on a person. Some people turn into raging study machines. Some people turn to drugs, alcohol, or sex to cope with their daily stress levels. Some people turn away from society. I didn’t really choose any of those. I get good grades, but I’m no Sheldon Cooper. I’ve never done drugs, tried alcohol, and I’m proud to say that I’m still a virgin. And if you’ve ever met me, you know that I’m a social butterfly, whether I try or not. However, I did stop trusting a lot of people. I was suspicious whenever people reached out to me, even though I was surrounded by loving people. I expected people to go behind my back or double cross me.

I try my best in school, but I’m not this good.

Since the news got out that I was going to have my head sawed open in three weeks, a lot of people that used to be in my life have decided to step back in there, and tell me how much they’ll be praying for me. When this first started happening, I was quite cynical. I kept thinking that people were only checking up on me to make themselves look good. When people on the phone would assure me that the whole church would be keeping me in their prayers, I simply rolled my eyes, and said “Aw, thank you,” trying not to sound too transparent. Four out of five of the people who called, emailed, or texted me hadn’t spoken to me since I had left the church or even before then. So you can imagine my cynicism.

But then, today happened. I was lazing around on the couch (cuz, c’mon, what else is summer for?) when the phone rang. I recognized the name on the caller ID as someone from church who used to playfully throw balled up napkins at my brother. We called him Napkin Boy. I sighed to myself, “Aw, geez,” I said. *beep* “Hello?” The voice on the other end sounded a lot older and beaten down than I remembered. He asked to speak to me. I smiled when the first thing he asked was if I had just had surgery. “Not for another few weeks,” I answered. We had a pleasant conversation, which I found surprising. For the first time since people started calling me about my surgery, I could actually feel the sentiment coming through the phone. We talked about more than just my surgery. He asked about my mom’s health, he asked about my brother, he asked about my upcoming senior year in high school, and which colleges I was considering. He even asked if I imagined myself getting married while I was in college. That last one made me laugh.

I never thought it, but that fifteen minute phone call with an old decrepit Baptist changed my mind about a few things. It taught me that cynicism and suspicion are okay tactics for a few things in life. (Like guys. Second guessing guys at this age is never a bad tactic, but I’m not gonna preach on that right now.) But they’re not the right tactics for dealing with epilepsy. If you use a pessimistic mindset to deal with something as heavy as this, it will weigh you down really fast. Another thing he changed my mind about was that thing I said earlier about four out of five people who contacted me were faking it. Four out of five. That’s not everybody, and I know that sounds cheesy, but when that sweet old man who had shamed my father and I long before we walked out of the church talked to me with unmistakable concern and affection in his voice, it meant something. It changed my opinion of him. It taught me that people can change. And I mean, duh, people can change. If he can change from loving us one moment, to ignoring us the next, why couldn’t he change back? My anger blinded me from seeing that as an option.

Anger. Pessimism. Cynicism. Suspicion. I didn’t have as much of these feelings instilled in me before high school. I think it comes not only with high school, but with being a teenager. Things get bigger when you’re a teenager, and things get harder. These emotions swirled around in me for a long time, and I got pretty stupid. I lashed out at people around me, especially the ones who were in control and could help, and that’s one of the biggest mistakes I could make. For about a year, I was like Bender from the Breakfast Club; I thought I was some hotshot rebel and I thought that I could lash out, but still hold everything together. I thought that somehow I could manage to push against my parents and my teachers, but not get grounded and end up counting dots on the ceiling every afternoon. I don’t know what I thought. Maybe I was too angry to be thinking much of anything, but it didn’t get me anywhere.

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Being the bad kid is never like it is in the movies. Don’t try it. It’s not worth it.

Anger, cynicism and suspicion are all normal emotions, but they don’t need to be mindsets. By letting anger become my go-to feeling in any situation, I screwed up a lot of things. I messed up my GPA, I messed up my trust with my parents, I messed up my reputation; it took me two years to see that acting out that way just isn’t worth it. I was grounded straight for my freshman and sophomore year. At one point I even had all the furniture taken out of my room. Yup. That’s how stupid I was being. Anyways, my whole point is, whether it’s something “big” like epilepsy, or something not so “big” like that one class that you just can’t seem to get a passing grade in, attitude really is important. I’ve learned that lesson, and it makes a big difference. It can make all the difference between laughing at nothing because you’re just in a good mood, and alphabetizing crayons in your room because there really is nothing else to do.   

I’m Okay (I Promise)

Posted on by gehugueley

If any of you were born sometime around my generation, you’ll be able to recognize the show Hey! Arnold. Once, I don’t even know when, my friend and I were watching one of those famous moments when Eugene crashes into something. My friend noted, “Eugene is such an optimist. He’s so clumsy and is always crashing into stuff, and he always calls out that he’s still okay, even though we know he’s not okay.” She made somewhat of a puppy face at the television screen. “Poor thing, he’s got such a hopeful spirit.” 

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That conversation came into my head Monday when I was at the hospital again for something called a Wada test. I went into the bathroom to change into the hospital gown (I HATE those things, by the way, but that’s a different story) and I lost my balance, and fell over onto the sink. Out of habit, and consideration, I called out “I’m alright!” before I even got up. That has become a normal thing for me, because I’m a clumsy person: I trip going up the stairs; I lose my balance doing simple things like getting out of the shower or putting on shoes; I never drop the quiet things like socks or my toothbrush, but the loud heavy things like my math textbook or my hairbrush. I’m always perfectly fine, just frustrated at my own clumsiness. However, I always call out that I’m perfectly okay out of consideration for my parents, not because I’m being hopeful or for any other cutesy reason. 

I learned to do this from experience. The first couple times I dropped something heavy upstairs, I simply cursed to myself and went about my business. When my mother the nurse didn’t hear me confirm that I was still conscious, she went into rescue mode, and stormed up the stairs to make sure that I was okay. Ever since then, even at 2 in the morning when I fall on my face, anywhere in my house, I call out to make sure that my parents know I got up.

So, Monday, in the hospital. I don’t even know where to begin. Every experience that I have at LeBonheur Children’s Hospital is a good one. The staff is great, the facilities are wonderful, it’s comfortable in more aspects than one. It’s not just a children’s hospital, it’s a family hospital. It’s comfortable, and that’s why I don’t mind getting up at 5:00 in the morning to go back there every once in a while. 

The Wada test is a neurological test conducted to determine which hemisphere of the brain hosts the most language and memory functions. In normal people terms, they put one-half of my brain to sleep at a time, and then do a few short language and memory tests to see which side does better. I’m awake through the whole thing, and it’s actually quite interesting. The whole test is completely safe, any complications only occur less than one percent of the time. 

First they numb the part of my leg/groin where my thigh meets my body. Then a sheath that looked like a coffee stirrer was inserted into my leg, then a long catheter is threaded up through an artery in my leg, all the way up to my brain. Next, they inserted a dye into all the arteries so as to look at the ones in the left side of my brain. After they injected the medicine to numb up the left side of my brain, they told me to count to 20, and to keep talking even when I knew what I was saying was wrong. I got to about 16 before the sight in my left eye went dark, and all my speech turned into garble. Next thing I knew, a doctor was telling me to recite all of the ordinary items she had just shown me. I had no idea what she was talking about. It was odd because when she showed me random items and said “Did I show you this?” I could answer yes or no very accurately. 

When they switched to the right half of my brain I could tell the difference. I made it all the way to 20 without my speech faltering. I had to pause a couple of times and think of which number came next, but I never started speaking gibberish. When they showed me everyday objects, at first I could recognize them, but my mouth didn’t work. It felt a lot like waking up from a seizure, because after showing me about four things I was able to start forcing out answers. 

Once the medicine had all worn off of my brain, I woke up on the operating table in a total stupor. My neurologist was standing over me and said “Well hiya, Grace, howya doin? Ya know any good jokes?” I thought he was serious and I racked my drugged brain for a joke that didn’t require a long, complicated set up. With slurred, almost drunken speech, I said, “Two guys walk into a bar, and the third one ducks.” My doctor reared his head back laughing, as did about three other people in the room. The rest of the nurses just kind of looked back and forth at each other saying “What?” I was glad somebody got it. When my doctor quit laughing he said, “That’s good I like it, well, you’re awake enough, we’re gonna get going.” He meant they were going to start untangling me from all of these leads that I was hooked up to, take that thing out of my leg, pinch my leg like a crab grabbing at its dinner, and move me back to my hospital room where I would lay flat on my back for the next six hours. 

A bunch of nurses crowded around my leg holding so much pressure on the site of the injection, that their hands would cramp and they would have to rotate off. I laid on my back, trying not to giggle, because every time I did, the vein would break open and start bleeding again. I kept apologizing for being so happy, but the nurses assured me I was being a very good patient. I made conversation, told better jokes, and amusing postictal stories to the four nurses standing around me. Let me say this as a disclaimer, them pressing on my leg to make the blood clot HURT. The medicine had made me kinda sleepy, so at this point, I mostly just laid on the table silently. At one point, the nurse who was pressing on my leg at that time looked up at me and said, “Doesn’t this hurt?”

“Well of course it hurts.”

“Oh, I’m just surprised. You’re the first patient we’ve had who isn’t screaming or crying. Grown men are usually telling us to just let their leg bleed out because pressing on it hurts them too much.”

I raised my eyebrows. “Really?” I mean, again, yes, it hurt, bad. This thing is so bad, that right now, I have a bruise on my groin that is probably twice the size of my right hand. Just imagine that. In the least, it’s not comfortable, but I wasn’t about to start screaming and crying for my mommy. I thought of my grandfather lying on the operating table, screaming for the nurses to just let his leg bleed out. I laughed, and my leg started bleeding again. 

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I am proud to be Eugene Horowitz. And I am proud to get back up every time I fall.

For the past two years of my life, I’ve been Eugene Horowitz. I trip, fall, and crash into things often, and from the outsiders’ perspective it looks like a pretty crazy ride. But to me, it’s not all that bad. I always get up when I fall, and let everybody know that I’m alright. It’s not because I’m hurt and I’m pretending to be okay just to be an extreme optimist. It’s not because it hurts when I fall down, but I say that I’m okay so as not to let my epilepsy get the better of me. It’s because, when I lose my footing on carpet stairs in the dark, the fall really isn’t that hard. And it’s because a plastic hairbrush bouncing off of my big toe is nothing to brag about living through. And it’s because a Pre-Cal book hitting my, well, thankfully that one missed, but you get my point. I started to think that maybe the creators of Hey! Arnold were sending out a sort of subliminal message to kids, that maybe Eugene really was okay. Maybe the creators were saying to the kids of the world, “Hey, just because you fall off of your bike, doesn’t mean you have to get hurt. Just because someone hits a baseball at you, doesn’t mean you have to let it knock you down.”

Inception

Posted on by gehugueley

Fairly often, I’ve heard a question along the lines of “Would you rather never go to a party again, or go to the biggest party ever, but not remember it?” My response was always “I don’t need to remember it, I just need to pay attention in the moment while it’s happening.” Nope. Not true. I’ve been in situations like that, and that’s not how it works. Having epilepsy is having a bunch of little black dots on your memory. You never know what’s going to happen or what you’re going to do about it. At times it’s quite exciting.

Seizures are weird. There’s no other word for it. I’ve had conversations, met people, even walked around my house, without realizing it. Waking up from a seizure is very much like being in a frustrating dream. One of those dreams where you’re walking down a road with a fork at the end. You know that you want to turn left, you want to turn left so bad that you call aloud “left! Go left!” But your feet aren’t doing what you tell them to. That’s postictal. People ask me simple basic questions when I wake up from a seizure, and I can’t answer them. I remember once, after waking up, a doctor pointed at his wristwatch and asked me what it was. I confidently answered “Triangle.”

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This is the look I imagine I give people when I first wake up.

I usually wake up on the floor with my dad’s arms around me after a seizure. After a few minutes he asks me if I’m feeling well enough to move to the couch. Last time I meant for my answer to be “Yes, what happened?” What actually came out of my mouth was a lot of garble with the words door, arm, and dog thrown in there. You can see where the frustration comes from.

Seizures are freaky, too. It’s completely losing control of your brain. If that was a comfortable thought, there wouldn’t be a million-dollar psycho horror film industry out there. The biggest thing when somebody wakes up from a seizure is to remain calm. Freaking out freaks people out. Seizures aren’t always recognizable by the person who has them, so it’s a big deal to let them know what the heck is going on. When I had a seizure at school, all I knew was that one second I was bored in class, and the next, I was lying on my back with seven adults that I hardly knew standing over me. I tried to sit up, like I usually do when I wake up on my back, and every single adult in the room started panicking and screamed for me to lay back down. Confused, I did as I was told. Next, I realized that my shoes had come off. In my surreal state of mind, my only thought was, “I’m at school, I need to put my shoes back on!” So I continued to sit up, and continued to be held back, until the comforting face of my mother walked through the door. She knelt down next to me and told me over and over that I had a seizure, and that I was completely okay. She stroked my forehead and used her motherly awesomeness to calm me until my eyes lost their far-away look. 

All in all, I don’t wish that I won’t have anymore seizures. To me, that would be like wishing for a buried treasure chest in my backyard. I’ve accepted that they are part of my life now. I only do wish for people to be there for me when I wake up. I need a voice to tell me that I’m alright, that So-and-So is there for me, or is coming for me, and most importantly, that I’m not dead.

Humor is very important in dealing with seizures too, but I’ll get to that later…