Wednesday, July 24, 2013

I'm Fighting For...

**Reposted from August 2010**

Quite often, I'm very fortunate to be asked questions by you guys that really make me think and evaluate where I stand on a particular subject. The following exchange that I had with a super awesome cyster and fellow CysticLife member was no different. We've had some tough goings lately in our little community and everyone has the right to, and does, react differently. Thank you for challenging me on this topic and really making me think about where I stand.

Message: Hi Ronnie, It's been a while since I have been keeping up with cystic life. Some of the reason is because I am busier now with Colton being out of school for summer and the other part of the reason is I get the blues. I am an optimist and a realist so I have great faith that I will live a long life, but also being a realist I will have moments of panic and fear at the thought that I know what this disease does to people and how fast something can go wrong. So I have a question for you I didn't want to post openly, do you hear everyone's story's, sad and inspiring and not get blue? How do I find a balance of being connected to the CF world without letting the sadness of some of it consume me? I put it like this to my grandma the other day, I can handle myself having CF it's my life I don't know any different, but what gets to me is that babies are still being born with CF and have to suffer and fight the battles we have been fighting our whole lives, that's what makes me sad, and I know a lot of CF'ers say the same thing about not knowing any different but as a mother seeing a child be affected by this disease is heartbreaking to me. It inspires me to do fundraising but it doesn't seem like enough. I sometimes feel we are being withheld from a cure because of the pure business of money making for drug company's. I'm sorry if I used this message to ramble or wasted your time, but I just wonder how you find the balance?
Response: So yes, I certainly read about and talk to many parents who have lost their children to CF and I myself have lost a handful of close friends. Whenever this happens I generally have the same reaction:

Compassion- I of course feel very sad for the family, but it is followed quickly by my next feeling;

Relief- I'm just so happy that the fibro or cyster no longer has to endure his or her pain and suffering;

Motivation- The fact that right now everyone born with CF dies with CF motivates me beyond no end to never stop fighting for awareness. At the very least, I want every person in this world to know what's killing my friends;

Self-reflection- I then think, am I doing everything possible to put myself in the best position to prolong and even possibly avoid the feeling of loss and despair for my family?;

I kind of look at our CF journey like this...we're all driving a car flying down the highway. Just the mere fact that we're driving in the car increases the chance that we'll get in an accident and die, having CF increases the chance that we'll get sick (have an accident) and see an earlier death than people not driving cars (non-CFers). Now, the question becomes, what do we do when we see a bad accident on the side of the highway? Do we completely stop our car and put ourselves in harms way? Do we see the accident and say a prayer for the people involved?

Do we slow down and hope nobody hits us from behind? Or do we see the accident, say a prayer for the people inside and then use it as a reminder that we better stay focused on the highway? We all know that if you focus on the accident for too long, you will definitely get in an accident yourself.

Now, you could say, "well what if I don't want to take my eye off the road and just drive (not be involved in the community)?" I would say that is a personal choice and one that many within our community make. For me though, it's a choice that I won't make. I like to see everybody else's car on the highway, how they drive, how they take care of their car, what color it is, who's inside, etc. I think we can really learn how to drive our car on the highway if we watch others around us drive theirs.

And yes, we're going to see some accidents, we're even going to see some accidents that result in death, but we're also going to see a lot of cool cars and meet a lot of great drivers. We're going to have the opportunity to meet some fellow drivers on the side of the road and let them ride in our car for a bit until they get a new one. Heck, we may even be driving a tow truck at the time and be able to carry them along for awhile.

As I look back at the highway I'm driving on, sure I see a lot of wrecked cars and tire tracks, but I see many more cars to the right, left, in front and behind me traveling just as fast or faster than I am. And if I see a wreck, I'm always willing to pull over and see what I can do to help, but I know that I'll have to get back into my car soon and drive.

Edit from Ronnie: Some of you may have just read that and thought to yourself "that sounded really insensitive". To be honest with you, when I read my words over again, if I were an "outsider", I would probably think that too. But for those of you who know even just a little about me, you know that I will do anything and everything for absolutely anyone in this community. My heart breaks every time we feel a loss, but it doesn't only break for the dead, it breaks for those of us still left here on earth. That's who I'm fighting for. I'm fighting for Josh. That's why I wake up everyday with a smile on my face and make sure that at least one more person in this world will hear the words Cystic Fibrosis. I'm fighting for Sara. That's why I thank God for her every morning. I'm fighting for Emily. That's why I will not stop until CF is a thing of the past. I'm fighting for Mandi. That's why I will never stop taking care of myself and loving those around me. I'm fighting for Kat. That's why I will do everything in my power to reach those in the CF community early enough to make a difference. I'm fighting for Jamie. That's why I try to answer as many questions as I can. I'm fighting for Kate. That's why I try to bring hope to the parent's of CFers. I'm fighting for Jesse. That's why I try to show the "normal" what our normal looks like. I'm fighting for us. That's why I was put here. That's why.