Thursday, May 17, 2012

Black Plague ( known as Cepacia B)

Black Plague

I had a long car drive home to think, so this is long, but heartfelt.

Tonight I went to a meeting for a non-profit I help with and while discussing somebody's anger issues. I decided to share a part of my past with the board that was there. I still am in shock I did so, considering very, VERY, few people know this. But I'm not ashamed and feel like others have been in my place.

Naturally, the next step, is to share it on a blog, where everyone has access to it. (heh.)

When I was little around middle school age I had some anger issues. I used to get angry over nothing and scream and once in a while even push my mom ( luckily I was tiny and not very strong).

She would just hug me and tell me she loved me, she never got angry back.  She knew I was angry because quite a few of my friends with Cystic Fibrosis were passing away, from Cepacia B and other infections that were spreading ( apparently at the parties, camps, and apts) around.

About a year after a lot of my Cystic Fibrosis Friends  passed away was when it came public "we weren't encouraged to be around each other". (How frustrating it wasn't figured out sooner!)

I was sooo upset, I thought I was going to die, I thought I might have caught what they had. I was angry Casey, Andrea, Shauna, etc were gone and never coming back. Mostly, I didn't understand why they had died but I was still here. It took me most of jr. high to be able to move past how much it scared me.

 In Jr High, I had 3 Cf friends left : Laura, Kevin, and Danny. Due to us not being able to see each other and lack of internet being widely used back then, we lost touch.

I ran into Laura, when were 18 or so, randomly at a Dr.s Appt and we swapped numbers and have been super close ever since. We can't be around each other, but we talk as much as possible and know we are always there for each other. I love her very much <3

I found out in 2006 that Kevin "monkey boy" had passed away in 2003.

Then in 2010 I found Danny on Facebook, I saw his profile pic and knew it was him, I would know my "surfer dude" anywhere.

He was my first crush, first kiss (we were 10 yrs old, when we had a "date"). Danny asked my dad if we could watch a movie in my room and my dad went to grab a cup of coffee ( and Danny kissed me on the check). We watched Princess Bride and he even called the Nurses Station for Popcorn (which they brought).

I have videos of us exercising and doing neb treatments together. What you may not realize is when a CFer was in the hospital for 3 weeks at time and multiple times a year (usually at the same time as other CFers, we never spent time apart-  before we knew it was harmful). 

Danny and I  lost contact when we were 14 yrs old, we both wanted to go to my 8th Grade Dance together, but we couldn't. So here I was 11 yrs later staring at him on the screen. Then I saw on his wall lots of posts... He had passed away 3 months before. I cried and told my amazing roommate Stacey all about him.

This may be a sad post, but this it, this is the skeleton that was hanging in my closet, but there is no reason to hide it.
But the truth is to see the beauty, you have to see the ugly. And I know I appreciate my life and will never take it for granted, I will fight for the lives of the future generations with CF and I will do so in the memory of all my friends (Casey, Andrea, Danny, Kevin, Monia, Shauna, Abbey, and "tubes") But by discussing this, I am remembering my friends. I know I was lucky, and I am still lucky.

I'm lucky to have the family, friends, and support to look at life postively. Becasue of this I hae always been motivated to work on my health, so I can fight against my CF and I hope others do the same!

*Also I promise  most blogs are not sad. :-)

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