Wednesday, November 30, 2016

The Beauty in Writing a Memoir


        Honestly, like I said in my last post, people have been trying to get me to write a book for years, and I just thought why? You never think “Oh I’m being brave” when it’s about you. You just think, “My only choice is to go along with what they’re saying, because supposedly it’s going to make me feel better.” You learn to trust doctors, and then you sadly learn, how fast, that trust can turn to dust. Like a fire burning logs in your living room. The trust is there, but as the fire starts burning it destroys the logs, and slowly the logs turn to dust. That was what it was like to have a doctor who I thought was a God when I first met him, and the fire was burning inside me to have him be right; to fix me; and then the first and second time he was right, and then the fire slowly began to burn the insides of me, and it kept burning.
        But the point I was getting at what is the beauty in writing a memoir? In my opinion the beauty in writing a memoir about something as personal as I did was the things I learned about myself in the process. I thought I had explored everything that came with the past 13 years. All the feelings, all the sadness, all the anger, all the happiness, I thought I had felt it all. And I did. To a point. But it wasn’t until I started my memoir that I realized I still had so much more left to explore. I didn’t realize that there was so much that I still didn’t know. And I didn’t know some of the feelings that I would feel going back and reliving all of this again. Was I taking a risk? Maybe, but it’s like jumping into a pool of sharks to save your life. You have to do it to save your life, but you don’t know what you’re in for after you jump. Well I did what Robin told me to do, I jumped. I wasn’t scared, I just said, “Whatever I find out, I probably was going to find out at some point.” 
        I never knew I was capable of doing something this great. That’s why this took me so long to do. People have been telling me for years to write a memoir, and I always said, “Oh yeah that would be cool,” but never in a serious way, I just sort of childishly thought, Oh yeah if the words just flow out of me one day, I’ll just write them down and it will all be perfect.” I never knew writing a book would be this hard. I had naively thought, “Oh since I know what I’m writing about this should be easy.” Boy was I wrong. This has turned into the hardest thing I’ve probably ever done. But it has definitely been the most healing. I never knew how many wounds I still had from this entire experience. I just said, before I started this, I thought I had felt everything I was going to feel, cried about everything I was going to cry about, and was mad about everything I was going to be mad about. But I wasn’t.
        I never realized how much writing this book was going to cause me to grow up. I never realized how much writing this book was going to force me to forgive people. They say, you can forgive but you can never forget. And I think that’s true. IT’s sort of final in a way, like you’re saying “you did this and I’m forgiving you.” But at the same time, you’re saying, “yes I forgive you, but I will never forget what you did to me.” It’s like falling down and scraping your knee. The scar that it leaves, you can never forget. You may be upset, that heals, and you get over it. The wound may heal but the scar that it leaves, never lets you forget.
        So to close out this post, let me just say, I never thought of myself as a fantastic writer. I liked to write on my own time, just to be creative I guess, but I never thought, that I would write a book or so anything this extravagant. But now that I’m “done” with my part of the book I can’t wait to send it off to my friend who is going to edit it for me, so I can see what another person thinks! And a look to the future, I hope to see all of you in line to get a copy of Kimi’s book! <3



Sunday, November 6, 2016

Embarking on New Territory: But as My Book Says, It's Beautiful

As many of you know, I've finally taken my friends' advice and done something productive with it. I am attempting to write a book. I thought about this long and hard before I started. Am I emotionally ready? Is this going to make me feel awful reliving all of this again. And on and on and on with question after question after question. And you know what? I answered a total of zero of them.  I'm doing what I first learned from my dear dear friend Robin 10 years ago, and that was to just jump in.  Sometimes you never know until you do and it could end up being the best thing you've ever done.

I went back and read all of my mom's copious notes on when I was the sickest, and I will admit I stopped many times. I said, "Maybe you're not ready to do this." But then I heard Robin's voice in my ear; her crackly, high, ever so sweet voice. Telling me to go for it, that even though she wasn't with me physically she was with me in my heart, and she would help me through it. And I started writing and I wrote and I wrote and I wrote. And suddenly two months later I was on page 160. I read it all over again, and thought to myself, how do I remember all of this in such detail? I remember what my doctor's nurse said to me word for word after my first shunt tap, I remember who my very first nurse was at U of C, I know who came to my graduation party at U of C. I remembered everything. And when I felt like I had the shell of the book done, I just sat there literally in awe, of what I had just done. What I had remembered, when I had tried for the past ten years to block it out in any way I possibly could.

As I was writing this, when I got about 20 pages into it, I stopped and thought to myself, how can this be a book? All I'm writing is tragedy after tragedy after tragedy. This doesn't even read like a book. How can I do this? But something told me to just keep going, to not worry about it right now, just to keep writing. I was finally happy that my work got rid of my Youtube privileges (You know all for "Professional reasons") lol. Because I was working on this all day rather than watching pointless videos. I thought to myself a lot while writing this book. Are people going to be able to relate to what I've been through? Are people ever going to "get it". And then suddenly I realized it doesn't matter; that they might not understand it, but that's OK. If they have empathy in their hearts they can just read it and say Wow that was a great book. Or not lol.

Being sick has taught me so much more than I could have ever learned on my own. It has allowed me to see things with a different set of eyes. A more compassionate, empathetic set of eyes. And even though I'm in pain every second of every day, I can say now, that this really has turned into something beautiful. I've made friends I never thought I would have made, done things I never would have done. And I have being "sick" to thank for every single thing I've done. Every feeling I've felt for the past 12 years. I don't know how my life would have gone if I hadn't gotten sick. But I can definitely say with no doubt say it's been the scariest, darkest most beautiful walk I've ever been on.

Thursday, September 1, 2016

THIS is Why I Do Peer Wise

I just thought tonight was going to be like every other Wednesday night; Hump Day, the seemingly longest day of the week. Little did I know it would be the best night, in my entire life so far. Tonight I got to witness the TRUE reason I do PeerWise; that lightbulb moment. Peer Wise is a program run by Lurie Children's Hospital. It's where patients and their parents, are "mentor volunteers" for kids with either the same illness as they have, or an illness that's similar. And I knew it was going to be rewarding, but I wasn't sure how. I had honestly spent the past 2 months mostly walking the halls, because I was too shy to just burst into someone's room and tell them I was a PeerWise volunteer. Even kids with the same diagnosis. It was just very intimidating. I thought of the way I was when I was a patient, and I thought to myself, "honestly, whenever a volunteer came to your room, you basically said thanks but no thanks. But I wanted to make a difference for these kids. The kind of difference that I didn't have. So today, I got to Lurie at about 5:30. My coordinator Amy(all names changed for privacy reasons) told me to call her after I got there just to check in, make sure I got my census, and everything. And I called her and she asked me if I could come to room 18-107. She was doing a PeerWise Training session, and wanted me to answer any questions they had.

 After visiting a little buddy I’ve made on the neurosurgery floor, I went into a baby’s room. She was very young. Maybe 8 weeks old? And so obviously I was going to talk to her parents. I walked into the room and typically as you are an unknown person walking into a child’s room, (it doesn’t really matter that you have the vest on, people don’t really notice it I’ve found haha) I told her parents, “My name is Kimi, and I’m a volunteer at Lurie, I actually do a special kind of volunteering called PeerWise. And I’m here because I have your daughter’s same diagnosis.” Both of their eyes got really wide at the same time. It actually sort of freaked me out at first. The mom gasped, she told me how her daughter was diagnosed; that she had gotten meningitis, I said so did I. She said that she had gotten her first shunt now when she was 2 months old, I said so did I. And then the mom’s eyes got really watery, and I felt really bad, I started thinking, “OMG is this too much for them? Are they overloaded with like 20000 things right now? Maybe I should come back later?” Then all my thoughts flew out the window when she said, “Um I’m sorry if this sounds weird, but can I give you a hug? We’ve been waiting for a person like you to come in here. We were so scared, we had never heard of hydrocephalus before, and we felt like we were all alone; you can talk to the dr’s and nurses about it but they just tell you all of the physical stuff about it, never the emotional baggage. And then they asked me like 1000 questions. One of which is how are you doing now? I said I’m doing great, but the first thing you need to realize with hydrocephalus kids, is hydrocephalus is very much a snowflake illness, meaning every child with it is different. I could tell you everything I’ve been through in my entire life which I”ll spare you because it’s a lot, but your daughter may not go through any of it. And then they told me, “The doctors said her shunt only has an average lifespan of 2 years. How long did yours last?” I told them I had gotten a lot of revisions in the past 12 years, but my first shunt that I received when I got to America lasted me 14 years. Then they started crying again. Another question that the dad had was were you in main stream school? And I told him I went to Catholic grade school, was in the National Junior Honors Society, went to College Prep High School, got 2nd, 1st and Loyola Scholar honors all the way through, and then went to a university and received a Bachelor’s degree.  Another question that they really wanted to know the answer to was how was my childhood? I told them my childhood was absolutely wonderful! I never thought about the fact that I was sick, I never really noticed that I was different from anyone else, I almost never noticed the fact that I had a bump on my head. I was just a typical kid, which I was unbelievably thankful for.

At the end of our conversation the dad said, “So you’re everything our daughter can be? And I said, “Yes sir I am. Nothing will stand in her way  but herself. And never let her think differently. My parents never let me thing I was any different than any of my peers. She may have to go about things differently, but there are a thousand ways to get there, it doesn’t really matter in the end does it?” At the end of our conversation, the mom asked me a question; she said, “I don’t want to sound weird, but can I touch your shunt?” And I’ll be honest, at first I thought, “Oh geez, I’ve never been asked that before, but then, I was thinking, well I can’t feel it anyway, so whatever if it makes her happy just let her touch it lol. And so I did, and then of course she started crying, she put her hand over her mouth and said, “OMG this is what our daughter has in her head?!” 


I can’t believe after that happened to me last night that I was thinking of not going. Now I know what my purpose is. This is just as rewarding as nursing, and maybe even more, because you don’t need to talk about all the percentages, and odds, all you need to do is be there. And it doesn’t matter what you went through, or how bad it was. The fact that you know on a personal level what they went through means the world to them. And I’m so glad I didn’t cancel last night! I made friends that I will keep for a lifetime! 

Tuesday, July 19, 2016

When Chronic Pain Left Me With Nothing.........Or Did It?

Chronic pain is sneaky. Chronic pain is relentless. Chronic pain is unforgiving. Chronic pain is isolating. I could go on and on with an entire list of adjectives that let's face it aren't the greatest. But just like a coin, just like a fight between two friends. There are two sides to every story. Even one's chronic pain story. Yes chronic pain sometimes never goes away. Yes a lot of the time chronic pain feels absolutely awful, but in my experience and maybe the experience of others, these are the times, your eyes are opened to the life you had before. The life where you worried about nothing. And however depressing that may be, it lets you feel an appreciation for that life that you've never had before. Sometimes you beat it for that day, sometimes you're ok for the rest of the week, but sometimes you're not. Sometimes you just have to throw in the towel, and say, I can't do this anymore. Not today. And it's the most vulnerable, courageous thing you could have ever done.  Honestly, when I was told to start a blog about my health, after every single article I wrote, I felt like saying, well that was fun, I don't have anything else to write about. But chronic pain is a journey. I will always have something to write about.

Living a life with chronic pain is a roller coaster; a complete and utter unpredictable, broken, dysfunctional, crazy roller coaster. Sometimes it feels like you're a ringmaster in a circus, trying to keep all of your plates spinning before they fall on the floor breaking into thousands of pieces. Sometimes your pain stays at a 4 all day, sometimes it stays at a 4 for 2 hours, maybe 3 if you're lucky, sometimes it jumps around all day, making it impossible to plan anything for that day, other than lie there. To some people, Oh the ideal day, doing nothing but lying there, but when lying there takes effort, just to be able to get into a position that you're not writhing in pain in? Yeah that takes skill. Sometimes all you can do while you're lying there is think of all the things you've lost. All the things you could once do that now you cannot.

I used to lie awake every night, so upset, thinking, "Chronic pain is this all you're going to do? Eat away at my life until I'm left with nothing?" You've already taken my career, my social life, what else is there for a young adult? I literally thought my life was crumbling before my eyes. And then suddenly one night, while I was lying there crying, it was like my eyes were opened. "You don't have to stop living Kimi, you just have to live differently", my mind told me. You don't have to equate living differently with living less, or living not to the caliber you used to. And that was all it took. I created new standards for myself. I made new goals. It appeared that it all happened as easily as blinking, and deciding, but little did people know. This took a long time, because although I realized I had to create a new skill set for myself, I was very set in my ways. I didn't want to create something new. But I realized I had to if I ever wanted to be able to accomplish things successfully again. Don't get me wrong though, I would do anything to end the pain I go through on a daily basis, all the pills I need to take because of it. But what I will NOT give up is the woman I have become because of chronic pain. Perfection doesn't come from being perfect. Perfection is your own definition.

When I realized I don't need to "get better" to be ok, it was like my world opened up. The floodgates were now open and the entire world was at my feet. This felt almost as good as beating the chronic pain; something I never thought I would be able to do. Little did I know, every day that I got up and went about my day, was beating it right there. So thank you chronic pain. Thank you for showing me that my life isn't perfect, but that's what makes it mine. Thank you for showing me that beautiful things can grow from the brokenness of someone's soul. And what I want to thank you for the MOST, is thank you for showing ME, that I could do it! <3 br="">

Thursday, April 7, 2016

A Letter to Myself Exactly 10 Years Ago April 7, 2006

Dear 17 year old Kimi,
            Where are you? Certainly not where you remember being 24 hours ago. You’ve switched rooms and yes you are correct, time has definitely passed. I know you have tons of questions. So I will try and go over the gist of it all. You are now in the Pediatric Cardiac ICU. And the first thing I want you to embrace is the fact that you’re alive, because unfortunately, you’re not going to like the rest of this explanation. I know last time you checked you were on Comer 5, in terrible pain screaming. Why did you move, you ask? Because when your shunt malfunctioned yesterday, that’s A. why you were screaming, talk about painful your ICP was probably approaching 35(Normal is around 15 but you unfortunately can only handle a maximum of 10 so 35 is waaaaay too high; and for those of you reading just imagine overfilling a water balloon), and B. that Dr. that you admired, had to make a split second decision, one that you, one day, months down the road, will say ruined your life, but I will lead you to the light again, don’t worry, but that decision he made didn’t come without consequences.
The reason you can’t speak and can barely walk, is because you suffered a stroke during the surgery. I know, I just saw our eyes get wide, too. But you will be ok! You’re going to have some rough days ahead as I’m sure you guessed. The worst of them coming in 5 days. No one could have ever guessed, but your shunt that was just placed in your lower spinal column, (I know you’re thinking an LP shunt what!? They couldn’t put one in  your head right now, it would have been waaay too dangerous) will malfunction, you will get chemical meningitis from the hemorrhage, and your mental status will go down, down, down in literally a matter of 30 seconds, and it will take your mom practically grabbing the PCICU Dr.’s arm to come in and see you. But just keep your eyes on that corner of your room where your TV is, that’s where I’ll be. When Dr. Morgan(name changed for confidentiality in case she ever finds my blog and wants revenge) finally does come in, she will turn white as a ghost, grab your bed, and get you down to CT, faster than you could have ever imagined considering its 4 floors away. I know this sounds bad, and trust me, you will have the doctors on the edge of their seats for a long time, but you remember what I told you? Nothing comes with no reward; it will take a while to see it’s there, but once you realize it is, you will never let it go.
            When you finally come home, some three and a half weeks from now, you will be tired. No that’s an understatement, you basically will turn into a bear in the wintertime. You will sleep literally probably 14-16 hours a day. That’s because your brain is searching for a way to escape the pain of recovery, not to mention trying to heal itself and the rest of your body that was paralyzed. You will become depressed. You won’t know it, but you will become so obsessed with getting “back to normal” you forget who you are in the process. You will become like a robot. Just waking up, going to therapy, coming home, sleeping, eating dinner, and going back to bed. You will have some nights where you cry yourself to sleep.
            You will spend the next year, in and out of the hospital; literally every month. The words “Weren’t you just here” mean nothing to you because you’ve heard them too much. You will give your IV poles names, race them down the halls with other kids, and make best friends with “the girls” (nurses) on Comer 5 and 6, friendships you keep even today. You will become a mystery to some of the brightest minds in the country. You will know what the voice in the elevator is going to say before she says it, you will know that when you get to the 5th floor you will see Eleanor the elephant with the pink polka dotted bathing suit and the ice cream sundae umbrella. I know when you go to the 6th floor you will see the Rube Goldberg machine.  And you will always always always remember to say goodbye to remoc in the  lobby! You will know every inch of that hospital. You will even get the nurses to turn off your “Hugs Tag” for 3 hours so your mom to take you on a tour of U of C campuses. So it won’t be all bad.

 h



       But the most important things you will gain through all of this, are gratitude and empathy. You will know truly what it means to say thank you because you have to say it to the man who has saved your life more than once, but also you will learn the power of forgiveness, because your faith in the man with whom you entrusted your life, will diminish before your very eyes as you learn more about that procedure he “just had to do” and how this “procedure” almost took your life, while at the same time saved it. You will question everything you stand for and believe in. I’m not lying this will bring you to your knees. But don’t worry, everyone, even the bravest of people asks why once in their life. And if they say they don’t they’re lying trust me.  I know it sounds like I’m giving you nothing but bad news, but remember, tough roads almost always lead to beautiful destinations. All you need is a little patience.

            When you go home, you will wonder, “What’s the point,” A LOT, while your parents try to do therapeutic things with you before therapy starts.  You will wonder where’s the old me, but you will eventually tolerate the new me, and eventually embrace it, I promise. You will feel like giving up. Until you meet your angel. Her name is Robin and she is the best therapy anyone could ever give you. She will be your saving grace. The angel you didn’t even know you were begging God for. She will be the one to show you how lucky you are, despite you devastating circumstances. She will be the one to make you look around at your life and see how fortunate you have been, through her own experiences. And she thought the exact same way about you. In fact she told you one day she thought you were the angel that God sent to her at just the time when she felt like her entire life was crumbling in around her.
            As the days go past, it becomes clear to you that none of this is going to change. You are forever going to have chronic pain, because of the surgeries that have passed, and the surgeries yet to come. And yes you will have more surprises. But the real beauty comes into the woman you will grow to be. You will grow to be even more forgiving than you know, and more knowledgeable than the residents working on you. What they say to you will have you rolling your eyes. Especially when one of them says, “Oh I don’t know what they’re doing on you today, I’m just watching, and maybe helping a little.” But you will enjoy helping theses residents through their residency, and you will enjoy seeing the lowly little residents, standing in back of the Big Bad Fellow in the morning, grow into that role themselves. And you know exactly who I am talking about. It’s the guy you continuously tell your mom you “don’t like.” It’s been an amazing privilege to be his crash dummy and you know I’m right.
            Kimi, I know like 10 years seems like forever, but in the same way feels like it happened yesterday. I know better than anyone how your dreams for your career were crushed. I know that you feel defeated each time you go “in” and hear you have to have yet another surgery. I know it all. Just keep going. You’re doing everything right. <3


<3 always,


Your guardian angel

Thursday, March 24, 2016

The One Part of Hydrocephalus the Doctors Could Never Prepare Me For

When you receive a diagnosis of any kind, it is automatically followed up with a ton of facts. One of which is DON'T LOOK THIS UP ON THE INTERNET. I never understood this until I did just that breaking Rule #1. When you look up hydrocephalus on the internet, it's horrifying. You read that the prognosis is difficult to predict, there is a good chance of cognitive/physical impairment,oh yeah and shunts only have an average lifetime of 2 years. It's absolutely terrifying if you're a new parent, struggling with your child's diagnosis. It was beyond scary for my parents, who were thrown into this world, after 14 years with no problems. They were thrown problem after problem, having to "solve" every one, and keep my interest at heart as well.

Every child with hydrocephalus is different. I think that's almost a chorus sentence for every illness. In my world, that basically means we can't tell you anything because your kid is going to be different than every other kid. I like to compare it to that of a snowflake. That's why a lot of illnesses are called the snowflake illness. I never thought I was any different than anyone else. Why would I? I had been treated the same way my entire life so I knew no different. 

When I went to the neurosurgeons' office for the first time in 14 years, when I was 15, I was scared, but I didn't really know what I was scared about. It was almost like being excited for something that your mom tells you is going to happen, but she won't tell you what that something is. So you're excited but you have no idea what for. That was what it was, I was scared for something that could happen, or could not happen. But even after that appointment, and the next appointment, and the next appointment, my anticipation was building like bricklayers building a wall, but I still had no idea what I was afraid of. Was it the anticipation of surgery? Was it the unknown? I had absolutely no idea. THEN when they told me I needed surgery, I still literally had a stone face. I wasn't happy, or sad. I didn't know what I was. Because I can clearly remember, thinking to myself, "Kimi---Kimi??? Did you just hear what he just said!? Why aren't you freaking out!?" Which now looking back, having a completely dead pan face right after someone tells you something that was sort of expected but really unexpected, should scream holy Sh!+ I'm freaked out, but for some reason it didn't. 

After that surgery and recovery, I got back to a semi normal life for the next year, then almost a year to the day later, I started on my looooooong joourney of problems which actually has yet to end. I had entered into the great abyss of unknown chronic illness. It's like diving into a freezing cold pool head first, oh yeah and you had forgotten to hold your breath, and so you have a nose full of water and you're coughing up a storm, all with your eyes shut. Was I scared? Maybe? Did I realize it? Of course not! But then I sort of just went along with it. What else was I supposed to do right? I didn't exactly have another option. But as days turned into weeks in the hospital, and explanations got shorter and shorter, I started to realize that I was becoming part of a very small subset of people with hydrocephalus. The subset that is so complicated and each with something different that not even the best doctor in the entire universe knows how to treat them. 

Suddenly, hospitals, sleeping through blood draws, and waiting 4 hours to see the doctor become the norm. But it was during the most unpredictable scary part of my life that I would learn something beautiful. Sadly it took me almost losing my life to learn how to LIVE. But I'm so happy I did. I learned how to  REALLY experience joy, I learned to recognize and appreciate beauty. I gained empathy, I learned to really enjoy life and everything in it. If there was one thing that I wish I knew pre-illness was how many things are taken for granted every day by each and every one of us. Unknowingly. We just know no different and that's really a shame. What it means if the sun is shining? What it means if it's raining. What it means if we're in a good mood and why!? Thanking God when our pain is at a 4 one day instead of a 6, not complaining that it's not at a 2. No matter how menial or boring life may seem, just embrace everything you do in this life. Because you never know when something is going to happen to take that ability away from you like it did with me. So now I challenge each and every one of you to go out there and live life like you never have before. Really LIVE. I guarantee it will amaze you. 


Monday, March 7, 2016

A Letter to Myself 12 Years Ago

Dear 15 year old Kimi,
            Today you entered into a world I had hoped you never would. I had hoped you would just go on blindly sailing through life, never thinking about the illness that almost took your life, 14 years ago when you were still in Korea. Unfortunately, every time you think it’s over, it’s just beginning. You will be forced to face things, I never thought you would. You will go through surgery after surgery never getting answers. I know this sounds like a nightmare, and trust me it will be, but there’s a light at the end of the tunnel for everyone including you! You will turn into the most compassionate, forgiving person ever.
            You will have “treatments” you never dreamed of. Complications you never knew could happen. But you will in the process of this entire nightmare, gain the most beautiful soul you could have ever imagined. If you don’t believe me, I will give you a list of the wonderful things you will gain through this nightmare.
·        Understanding-You will have many failed surgeries. That I will not lie about. But you will begin to understand that all these surgeries were helping your doctor to figure out what is wrong with you, and you will unfortunately learn that because of the nature of your problem, surgery is the only option, and you will do so with unfailing grace.
·        Your doctor is explaining to you. Explaining, Explaining, and Explaining. Sometimes you don’t even know what he is talking about. Sometimes you will just want to tune him out. But you will learn even though you’re shy, you need to be a proactive part of your health care. So much so that you will buy books on neurosurgery, and watch TV shows. And your doctor will make you write papers for him to understand your medical care better. So better just to figure it out for yourself. ;)
·        He’s telling you all the odds, and you always seem to be on the losing end of it. But somehow you find through that infinite grace I talked about, how to be thankful for everything you have, even if you are on the wrong side of the odds. And you will be on the wrong side more times than the right side.
Today is a turning point. You have jumped in. You can’t go back. You are now in the line of fire. You have two choices though the last two choices you will ever make regarding your illness. You can either give up, and take the easy way out, OR fight with all your heart. You can embrace this unpredictable illness, and show it that it will never define who you are. And you will find yourself in the process. You will be glad you were made the way you were…
Sincerely,

Still fighting

Wednesday, February 3, 2016

What's Worse, Having an Illness or Having An Invisible Illness

I never understood the term invisible illness, in fact I never really understood the term invisible. For as long as I can remember, I've only liked concrete things, or things you can visualize being in a physical form. I've had hydrocephalus my entire life. But I never admitted I had it, until I was 13. In fact, I still remember, when my older sister was in 8th grade, she was doing a family tree for science class and she had to put all the diseases/medical conditions that everyone had. She had asked me if she could put mine on there. I quickly said, "Um.. NO," and we sort of left it at that. Then when I did my tree two years later, I decided to put it on there. I don't know why, but I just did. Then when I was sharing my tree, my teacher commented that I had an illness under my name. But that I looked totally healthy, and I tried to explain my illness. Which looking back on it, I did a horrible job, because I didn't even really know the science behind the illness, or even why it created all the problems it created. But after that, my teacher said to me, "Wow, but you look so healthy, I can't believe you have what could turn into a fatal illness, it's amazing." At that point in my life, I took that as a compliment. But now, I don't know, I can see why he said what he said, but now I don't think I would take it as a compliment. There are so many negative connotations that come with having an invisible illness, I can't even seem to count them all.

The term invisible illness has always been sort of an anomaly for me. An anomaly that I could never understand. How could it be invisible if to me it was supremely real? But as I got older, and realized that when I get up and "put my face on" in the bathroom, and pick out what I'm going to wear for the day, that is no different than picking out a Halloween costume. What's the point of Halloween? Being something we're not. What was I doing? Being something I'm not. A healthy person. A perfectly healthy person. You may get used to the physical pain. But there's one thing that your body will NEVER get used to. And that is the sheer terror, the lump in your throat that you can't seem to swallow, no matter how hard you try. That looming black cloud that seems to follow you wherever you go, of IS THIS  GOING TO GET WORSE, and then what am I supposed to do about it. You're a veteran of just taking care of the status quo, but every time it gets worse, it feels like a totally new experience because no two health crises are exactly the same.

What's the worst part of all of this you ask? It's when  your parents and all your visitors leave your hospital room, and you're left to just soak in the seriousness of your situation. Where no one can help you anymore. You're just here. Listening to your IV drip drip drip. Watching your nurse, infuse benadryl into your IV and counting the tears that fall because of how much it burns, it feels like your veins are on fire and your hand is bright red to prove it. Just wishing that it would knock you out like oral benadryl does so you could not feel the terrible pain of it infusing. I've heard this before, countless times actually, "Aren't you used to it by now?" How can you become used to the ever present betrayal of the one thing that you can say and prove is YOURS? How can your own body that you took such good care of for 27,28,30 or 50 years, suddenly just decide without any input from anybody, to just break down into a thousand little pieces after all of your hard work? And most importantly, how can you, the owner of your own body, the keeper of the keys, the lion tamer, the captain of your own ship, say, "I can't control any of this." I have no control and can't do anything about this.....  It's hard, but we do it.

From one sick person to another I'll tell your a secret: It's OK! Hold on Little Fighter, Soon It Will Be Brighter!

Thursday, January 7, 2016

What Having Hydrocephalus has Taught Me........


What do you see when you look at this picture? A lot of you  in fact probably all of you would say, a girl in the hospital, or a girl getting ready for surgery and both answers would be right, in fact, I was getting ready for my 3rd surgery in 2 weeks in that picture... Now I will show you another picture. 
What if I told you that I see the same fun loving, crazy girl in both of these pictures? Although these pictures are about 9 years apart. I see the same girl... But at the same time, such a different girl. But it's the time that comes in between these two photos, the things you don't see, that matters most. I've grown so much in the 9 year span between these pictures, but as you can see one thing has never changed. And that is my smile. My determination to beat hydrocephalus and become a hydro hero has gotten stronger. I've learned a lot in these past 10 years, of battling constant headaches, constant, everlasting, unrelenting pain, I've learned that you can cry whenever you want, I've learned that nothing stops you from reaching your dreams but yourself. I've learned that you can rebuild your life after something tragic shatters it into a thousand pieces, and then the wind blows and moves those thousand pieces in a million different directions. I've learned that none of this is my fault, and hydrocephalus is just very unpredictable. I've learned that I'm not a hydrocephalus "sufferer" I'm a hydrocephalus Fighter. I've learned that re-teaching your body how to do things it thinks it already knows how to do and doesn't realize it can't because its' paralyzed is extremely difficult and mercilessly painful.
I've learned that no one understands you better than your mom, and it's ok to "want your mommy" even when you're 26 years old. I've learned that even when you can't speak a word, you can still say so much. I've learned that even though I want a cure to hydrocephalus more than you could ever know, sometimes clinical trials aren't for me (lol). I've learned that instead of asking my doctor questions, I should just go look up the answer myself because that's what he's going to make me do anyway, and then he will make me write a paper about it, so maybe looking it up is the better way to go (lol). I've learned that I now sleep better when my hand is clenched, and if I can't sleep, to think of my hand and whether it's doing that or not, and even though it hurts, usually I'm asleep within minutes of doing this. I've learned that doctors don't have all the answers, and sometimes it's nice to hear them admit that. 

Obviously as you can see I've learned a lot through this entire journey. But it's not over yet. I'm still fighting and so are millions of others. I've learned that hydrocephalus will leave scars, but those scars just tell a story about how I survived and that a body without scars is boring. I've learned that everyone at some point in their lives feels like they stick out in the crowd. I've learned that when people tell me I can't do something, that they're just fueling me to show them I can, and if they aren't they're not worth my time. But most importantly, I've learned that I have so much more to learn. And I can’t wait to get started.