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 5^th 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 6^th 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.

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       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 senior resident 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

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. 

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

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!

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.

Please Do [Not] Try

I was just checking my email this morning, when I came upon an email from the Hydrocephalus Association. Now let's be honest, usually about 3/4 of my emails, I just send directly to spam, even ones from the Hydrocephalus Association, but I don't know why, something told me to read this article, that I would regret it if I didn't, even though I was confused. It was entitled Please Do Not Try... This intrigued me, because I've been told exactly the opposite my entire life; that I shouldn't believe I was any different than anyone else, and that I could do anything anyone else could do. My parents never treated me any different than my siblings, although some of them will tell you differently ;-)  It was an article, about a girl named Kate. She was my age, and like me had been premature, and diagnosed with Hydrocephalus as an infant. She was in the hospital, and during one of her many tumultuous hospital stays, she woke up one morning overhearing the words of a doctor discouraging her parents from continuing to use "the pumping technique" to manually drain her shunt (which as an aside, I wouldn't do either, because although it may seem fun as a four year old pressing a little bump on your head, and feeling it fill up again, it is quite painful if you do it over and over). 

As I continued through this article, I read that she woke up, and listening to the doctor tell her parents not to pump her shunt anymore, she immediately with tears in her eyes, whispered, "Don't Not Try" over and over. Right after I read this, I was thinking to myself, "That's right Kate, you can't not try! If you don't try, you will miss out on so much! A lot of people with hydrocephalus, not only people who have had a lot of problems like Kate and myself, have this drive, to want to live. We don't know we have it, until we are forced to use it. Kate wanted to live and you could see in this article, her zeal and love for life. We want a lot of things. We WANT to live. We WANT to try... We WANT to prove that hydrocephalus does matter, but at the same time it doesn't matter, because we can do everything you can do. But most importantly, we WANT a cure!

Hydrocephalus is very much a "you're fine until you're not" type of illness. However, if you become complicated like I did, or like Kate did, your situation is compounded by several different factors and it then becomes a constant in your life. Yes having hydrocephalus makes us different from everyone else. But why does that have to be a bad thing? I can tell you right now with all the certainty in the world that if I were to grow up completely "normal" I wouldn't be half the person I am today. And there is no one definition of "normal." You make your own definition. So to me, does a normal person have a port in their head, with tubing down to their stomach and horrendous scars all over their body and a headache 24/7? YES. And I'm proud of every single one of those attributes. They always say, "Never be ashamed of a scar, it simply shows that you were stronger than whatever tried to hurt you."

Reading Kate's heartbreaking story was so close to home, because it paralleled my own story in more ways than one. It almost felt like we walked this journey together. She was fine for 12 years, me 14. Like Kate, the shunt, our life support had become for her the same thing it had become for me= we loved it but we hated it with every fiber of our being at the same time. Then when Kate turned 12 her entire life fell apart. Me? When I was 15. She even wanted to become a nurse..... The most important thing I learned reading Kate's story, was reinforced when I read her heart wrenching fate was that I felt so incredibly thankful. Many people after hearing my story, look at me almost with a curious look in their eyes, "How can you be thankful"? Or "Thankful for what" they will say. I say I'm thankful I'm alive! Even though my fingers are still pretty paralyzed, or when it gets cold out, my leg doesn't move very well, I’m still here. So many people with hydrocephalus can't say that anymore including Kate, she lost her battle at the age of 25, but her last motivating words inspire me to keep going. Kate I will TRY for you! She inspires me to keep going for other people who are just like me. I will keep going for Kate! Until a cure is found, we must do what Kate said on her deathbed. We must try! RIP fighter no more headaches, no more lying flat, no more spinal fluid leaks, no more infections… Fly high angel girl......

https://www.youtube.com/watch?v=z0rxydSolwU

Living A Lie...But You Really Can See the Invisible.

A lot of people, just assume that I'm doing fine all the time, because yes I go out, yes, I have a good time. But they all know what happens when you assume things....Look at the spelling, and if you still can't figure it out, then we can't be friends lol jk jk. But in all seriousness, Yes, I do go out, because what else would I do then? I either go out in pain, or sit at home doing nothing in pain. I'm going to be in pain either way. When I was little, I used to pretend I was a princess, and dress up. Well now, I play an adult version of pretend. When I go out, I am able to "pretend" that none of it exists. I can live the life I've always wanted to live, taking precautions of course. But can I do it all the time? No. My life came to a screeching halt, on October 23, 2005. And it has tried to restart. But restarting your life, is somewhat like trying to restart a lawn mower after you’ve been using it nonstop for days.  You pull the string, and sometimes it works, but sometimes it doesn't. Sometimes it works but only for a few seconds. But sometimes it works for as long as it takes to mow your entire yard. But then you need to turn it off and let it rest for a while. Sometimes a few days, sometimes a few weeks. Could you imagine what it would be like if we felt like sh!+ and looked like sh!+? Atrocious, it would look atrocious! .

I quite honestly, never understood the term "Invisible Illness". I'm a natural science major, I only like concrete things. Things you can prove. I know I have hydrocephalus and a whole host of different problems, and as long as I knew that, it was all that mattered. After I got sick, I hated the fact that I had an invisible illness, because I thought it meant that I had to prove I was sick.  I can remember, basically 3-4 hospitalizations where they told me in the ER, we can see nothing physically wrong with your CT your ventricles are actually smaller than they should be, so that could be the problem, but it’s not life threatening, so there is nothing CLINICALLY wrong with you. I felt so defeated, because I knew there was something wrong with me. I could feel it, you could see my entire demeanor had changed, so it must be true right? A lot of people accuse "spoonies" like me of faking being sick. But in reality, we are faking being well. And we must be doing a pretty good job, if you think the opposite. 

No my double life isn't sexy or mysterious or even crazy, well it is crazy but not in the way you're thinking. I've been pretending to be well, when in reality, I can't even go from a sitting position to a standing position, without stopping first and letting myself equilibrate. But I can't do that at work, no never, so I turn the corner where no one can see me, and then let myself equilibrate. Am I lying to all my colleagues? Maybe. Then I go to my pain doctor, and let her know my symptoms, of course since she knows nothing about neurosurgery, she's freaking out.... "OMG you need to call Dr. Frim... I nod, and say I will. But do I? no. I just come up with an excuse to use next month, such as my favorite, "Oh he wants to watch it before we change anything." Although I think she might be catching on... I know I have a problem, But I also know it's not life threatening. And so do I want to sit in clinic for 5+ hours for him to change a setting? no. But if things get remarkably worse? Yes then I will go in. It's a very delicate balance, it's like standing on a teeter-tawter(And I know I spelled that horribly wrong) and trying to ride it like a surf board, but there are already people on it. You just can't win them all. 

I've never really been much of a liar. Not because I'm little miss perfect, but quite frankly, because it's too much to remember. So why would I be lying about my health? For my own emotional protection. People always want to know how this is effecting us emotionally, and for me, it isn't, or it's effecting me the least amount, because I do admit, I keep myself in that little imaginary perfect bubble for my own emotional protection. When people ask me how I am doing? Unless I'm physically dying, I will always say I'm "ok". That's a spoonie's go to word, because it doesn't mean you're good, but it also doesn't mean your sick enough to be in bed, hating the world.

So what can you do? Be there. Believe us. I realize that being able to believe us when we go out and live a semi normal life is difficult. But maybe it’s not for you to understand. Maybe it’s not even for me to understand. For all I can do is accept it. Listen to our pain. Because that’s the only way you will ever be able to see it.