I remember a couple of years ago a friend of mine got in touch with me. It turned out that her one year old son had just been diagnosed with CF. I offered to come by and talk with her and her husband about just what my life with CF entailed and hopefully attempt to ease some of the doom and gloom they might be feeling after receiving this megaton bomb of news. Their concerns were pretty normal given the situation. They were worried about just how there son would be able to deal with this bit of news as he grew older. What I told them is pretty much what I tell everyone who asks how I deal with the mental side of CF. It's my normal, being diagnosed at 3 months of age I've never known anything other than living with CF and the very fact that one day it might get me is something I came to terms with almost at the same time as I developed the ability for cognitive thought. To be honest, the amount of thought I give it in your average day is probably the same amount of time I devote to just what Kim Kardashian is up to. The way I see it, it's way harder to be diagnosed with something like cancer when your in your 20's or 30's because suddenly your life is changing and changing drastically.
If you were to ask those around me, however, I guarantee you they spend a whole lot more time thinking about it, especially when I'm sick. Before I talked to my friend, I asked my Mom how she dealt with and came to terms with my having Cystic Fibrosis. Understandably, her way involved a lot of tears in a lot of different places. Now, people who know me, know that I can be a bit of a crier at times. Happy times, sad times, movies, weddings, seeing my girls in their first ultrasound, well, you get the picture. The number of times I have shed a tear over having CF ... still sitting at 0. I don't hate it, I don't love it ... I nothing it. It's hard for those around us because they are forced to sit by helplessly and watch. All they can give is their love and support, which, from my perspective helps immensely, but from their perspective, I'm sure at times it must seem almost hollow and meaningless. The hard truth is, they can't breathe for me, they can't run for me and much to the chagrin of many, they can't eat for me. Even harder for them, is in those times when I really have to hunker down, I don't usually have the time, energy or wherewithal to notice and ease the angst they're feeling. The other hard thing, is that like many CFer's I've met, I'm really good at putting on the brave face. Even on my worst days I greet everyone with a smile and a bright hello and after they ask how I'm doing I'm always "ok". It's a habit, the truth is there's a lot of days when things aren't 100% ok. There are actually very few days when everything is 100% ok and usually things vary between different degrees below ok. However, it's just easier to say I'm ok then trying to explain exactly what I'm feeling. Now, while this makes it easier for me, it makes it tougher for them to get an idea of just how things are really going.
Now that I think about it, in all honesty I probably spend way more time worrying about how everybody else is doing with how my CF is going, than the actual facts of how my CF is going.
Now one last thing before I sign off for the night. That same friend of mine whose son was diagnosed with CF has done an amazing job of organizing a film fest fundraiser for CF for anybody in the lower mainland. So, I wanted to help get the word out. For anybody who can come, Cinema For a Cure; a double feature in support of Cystic Fibrosis research is happening on Saturday May 5th at the Denman Street Cinema @ 1779 Comox St in Vancouver. They'll be showing two CF related movies, one a drama, the other a documentary. If you are interested you should definitely go because in my humble opinion its a very good cause : ).
Nice! Thanks Todd, for so much!
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