With the New Year already 3 months in, what have you accomplished? What have you "gotten on the phone and told your mom about." Have you done anything worth praising? These are all questions we ask ourselves each day... I'm working at Chicago Scenic Studios right now as a secretary. And I know what you're thinking, not the most glamorous job, or what about nursing school? I know I said I was going to do nursing school, and I still want to be a nurse with my entire heart and soul, I just don't know when it's going to happen.
Seeing the movie Cake was both inspiring and eyeopening. I had shut everyone out of my life health wise, I never told anyone when I felt bad. I didn't quite take it to the extreme that Claire did, but I had basically stopped trying. I became complacent in where I was; I didn't like it, but I also didn't hate it; and basically didn't try any harder to move anywhere. It took me until I was stared in the face with some pretty tough realities to make a move. And there I was: faced in 2 months with no health insurance, and a chronic illness. Those are two very big pills to swallow and two things I knew were never going to go away no matter how hard I tried to get them out of my head. My parents didn't want to scare me, but they didn't want to sugarcoat anything either, they knew I had to take this seriously, and they knew scaring me with the facts was the only way I would take it seriously. My parents knew I had everything in me to find a job, but did I? No of course not. I had always thought I was this painfully shy, would rather go to the dentist than have an interview kind of girl. But my parents said and I think it's the best piece of advice they've ever given me in my adult life, "Don't look at it as an interview, look at it as just a conversation, with one of us. The two people you're most comfortable with. And those words have gotten me through some very scary interviews. I can put that one on the shelf as one of the many wonderful lessons I've learned from my incredibly giving, loving parents.
I had always thought to myself, if we thought of ourselves at the age of innocence (which to me is 4-5) and we told ourselves all the "bad things" we were going to do in life, how would we respond? I know how my 5 year old self would respond. If I told myself that I would do "OK" in school I would be not trying my hardest, but not failing, would be given anointing of the sick, upwards of 35 times before I was 21, and almost die on an operating table more than once, I'm sure my 5 year old self wouldn't understand what I was talking about, but I'm also positive that she would say, "Noooooo, because then mommy and daddy wouldn't be proud of me... All I've ever wanted in life, and even as an adult is my parents approval. And then I would look back on my life. Have I done things that have made my parents proud? I know they tell me all the time, how proud they are that I've made it this far, but I'm still convinced that's because they really don't know what its' like to be in my shoes. I'm not just gonna sit there, and say, "Oh I'm too sick", I did that before, and it didn't make me any happier, but I also know they would never understand what I was going through, no matter how much empathy and holding my hand the whole way they gave me.
I've always known with my condition, it's essentially you're fine until you're not, and when you're not, you need to move relatively quickly. I've known this my entire life, but it's never scared me more until now. I'm trying to start my life, date, move out; how am I supposed to do that, when I have this black cloud hanging ominously over my head... My parents say I shouldn't wake up every day thinking my shunt is going to fail, and I get that, but every time I haven't thought that, it happens... I've always told myself and others that I would never stop fighting...But was that really true? I am fighting an unbeatable force. A force with no cure and a statistical rate of failure at 50% within the first two years, and statistics all over the board for every year after that. I wondered, would I ever be able to hold down a full time job? What happens to my job, if I have to have surgery? I think about these things a lot more now, than I even did during high school when I was clinically "dying" or college, when I traveled all the way across the country looking for answers. It didn't really hit me until I was out of college and couldn't hide behind my parents anymore; I could no longer hide behind my mask, of how I wanted everyone to see me, because my affect and the work I did at my job depended on it.
Everyone who hears my story and is educated about hydrocephalus asks me the same question, they say, "Oh have you ever had the 3VC. or ETV, whatever they call it and then they start telling me how great it was for them, and how they never thought they would ever live without a shunt until they had that procedure. Part of me hates to crush their great thoughts of it, but the other part of me wants to tell them, that for some anatomical reason it doesn't always work out that way. If you're 3rd ventricle is too close to your brain stem, or if they snip a blood vessel like they did in me, it doesn't always work, and you will be forever dependent on the shunt which has won the award for most undependable human body device. And having this many surgeries in this short amount of time can sometimes leave you in chronic pain. Those are terrible realities but sometimes it isn't your choice, you're just forced to accept it. I remember when I was 11, my mom had said to me, "You probably don't even need your shunt anymore, but they would never take it out, because they don't know". Oh to go back to those simpler days.
My attitude every day when I wake up and realize I'm still on this Earth, is, Make the most of it, God had you wake up today for a reason. My scars remind me that the past can never be forgotten, but they also tell a story that I would never be brave enough to tell on my own. My arm and leg remind me of the most painful 6 months of my entire life. When you've stared death right in the face, you view life completely differently and I can tell you one thing. That I'm loving my view right now!