A little about me and why I started this blog

I was once asked, “What is strong?” And I said, maybe being able to lift a thousand pounds. Now if I were asked that same question, my answer would be a little different.   Now, I would say, being able to last an entire day with no pain meds. It’s sitting there with no emotion on your face as your nurse opens the 6^th needle for an IV that she will eventually never get. It's not crying when you hear about your 33'rd surgery and then two days later find out that surgery was a bust. This is my world. Whenever I said this in the past, I always followed it up with, "It wasn't supposed to happen like this, it was supposed to be different," but I try not to say that anymore. Now I know that everything in the past ten years happened for a reason. I know it’s really easy for me to say that now, and every time I get sick, I think about myself saying this and I tell myself I’m crazy, that I would never want to go through this again. But every time I make it out ok. And I think there’s a lot to be said about that. Yes you could say it’s because I am strong, but it’s also because I have a great group of people cheering me on; Telling me I can do it when I’m having those moments of doubt. When I say I can’t do this anymore, I have a mom whose there to say, I can’t do it for you, but I will be right here with you while you take every step of this journey. To be honest with you, I always felt weird when people said I was “So strong”; how did they know? When I’m in the hospital, yes, I may get through it, but what other choice did I have? If I had said, I can’t do this and won’t, I can pretty much guarantee that I still would have gotten better, it just might have taken longer. My point being, we don’t choose when we die and when we have to keep going.

My health was wonderful for 13 years. I almost never even got those colds that in the 3^rd grade, if one kid got everyone got. For my 13^th birthday, I had gotten my ears pierced. And yes, I had earring infections as I was figuring out what earrings I could wear and what earrings I couldn't. But they always got better. But this one wasn't. I was 14 and I had gotten the ear infection. So I just treated it the way I had always treated them. The ear eventually got better. But while it was healing, the pain moved from my ear lobe to the bone behind my ear. And then to my head. My mom wasn't super worried at first because the shunt I had on that side wasn't working. So it wasn't going to infect the spinal fluid it would just keep the infection contained if there was one. To fast forward a little bit, after a lot of different tests at University of Chicago, it was confirmed that I did have an infection in that shunt. So I needed surgery. In my head I was having a nervous breakdown, but if you saw my face you would say deadpan. I just had a look of absolutely no emotion, which now when I think about it screams I’m scared. But anyway, I had surgery, spent 4 days in the hospital, and got to go home on Thursday. This was the last of normal hospitalizations I would ever have.

During the next 8 years, I would have bacterial meningitis twice, chemical meningitis twice and upwards of 22 surgeries as well as a 3^rd ventriculostomy and a devastating stroke when I was 17. Now, I live in chronic pain. But I think now, I am a better person because I have gone through everything I have. Although, I may at times wish I learned it another way, I will always be thankful for the lessons I've learned. I can now be happy when my hand is in a normal position in the morning or when I don’t trip over my foot, the things no one ever thinks about. I challenge you after reading this blog to notice the things you normally wouldn't. I guarantee you it will amaze you… All the things your body just “does”. I used to do these things without noticing them too. But since I can’t do them now, or can’t do them now without noticing how weirdly I do them, it makes me even more thankful. If I can say one word that having hydrocephalus has taught me, it would be- thankful. I’m thankful for everything. This is why you will never hear me complain. Yes you may see a status or two on facebook, but very rarely will you hear the words come out of my mouth. Honestly, I do the facebook thing just to remind myself of how many people do care about me. Because I know when I write those, I will get likes from my closest friends, and comments encouraging me to keep fighting! So come along for the ride. I can’t guarantee it will be pain or bump free, but I guarantee it will amaze you!