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…

Still fighting