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. 

1 comment:

  1. Our stories have so many similarities! I've only read this and your Thank You to Hydrocephalus! But wow, your like my hydro soul mate. I would love to chat and share stories! I too am writing a book and wanted to start an online journal of some sorts. I was 25 when my life was flipped all around like a snow globe! That's how my brain felt to, just horrifying. Yet my battle got much more intense with over 10 other brain "findings!" I've fought a good fight but I'm growing weary. Drs don't get to see where I was in 2004 when I had my shunt placed....they didn't see my determination to win. Now they see where I'm at and deny me relief and access to pain meds that help. This has been a 6 year reoccurring event. I've even heard that I have a working shunt so there shouldn't be no problems. But I lived for how many years with high pressures? Damage to brain tissue. It's just time that I want to make a grand stand. I think you and I could really push for some real changes. If your up for it, would love to talk.