I've had some pretty heavy thoughts running around in my head for a couple days now -- like a hamster running around in a rusty wheel, driving me insane with the incessant squeaking. I've been putting off writing about it, hoping the words would magically come together and manifest themselves on my computer screen. Needless to say, that hasn't happened and the wheel is still turning. It's time to kill the hamster.
Some recent discussion in the CF community has really got me thinking: what does it really mean to be positive? Is it possible to be realistic without being negative? Is one person's undying optimism another person's denial? Where do you draw the line?
Or does it always have to be so black and white?
The word "positivity" gets thrown around a lot, whether in the context of CF life or life in general. We're supposed to remain positive in the face of adversity, always wear a smile and not let our circumstances get us down. But just like each case of cystic fibrosis is very different, so are the lives of people living with it. So it stands to reason that each person's interpretation of "positivity" is just as unique as their own story.
I'm generally a pretty positive person. More so than a lot of people I know, actually. I can put a positive spin on almost any situation, but I can also admit when something just plain sucks. And sometimes things do, sometimes they really do. I try to stay positive, focus on the blessings I've been given, and make an extra effort to appreciate all the beauty in my life. I try like crazy to push all the dark, negative thoughts out of my mind. But sometimes, all that trying is in vain and sometimes it JUST DOESN'T WORK. I get overwhelmed and tired of it all. I focus on the negative and stand back helplessly watching my fears about the future creep in and make themselves at home. Sometimes I do exactly what all those Eternal Optimists and Positivity Pushers warn against.
And do you what I do once I realize I've reached that point? I allow myself to feel that way. I don't get upset that I've lost my grip on those positive thoughts. I don't chide myself for being discouraged. I curl up in bed and cry for a while. I admit just how frustrated and scared I really am. I let my more emotional self take the helm and I feel whatever I need to feel for a while. My feelings are just that -- mine! I refuse to let anyone make me feel ashamed of them. I believe that when I allow myself those moments, after they have passed, I really do feel better. I'm able to reevaluate things with a clearer head and carry on with an awesome attitude again. I think that it's healthy -- no, NECESSARY -- to let ourselves visit "the dark side" every now and then. The trick is not to let ourselves dwell there too long.
The psychological aspects of a chronic illness (whatever it may be) are just as real as the physical ones. They may not be as visible or easily recognizable, but they are very present. I think it's important to understand and accept that. We need to be able to have those feelings and allow others to have them without judging or being judged for it. The current median predicted age of survival is 37 years. In other words, half of the patients currently on the CF registry are expected to live past 37 years. Half are expected to die before reaching that mark... half! That's not okay! My own sister died at the age of 14. She and my parents did all that they possibly could do, and she still died. I can do everything in my power to try to beat those odds, but the truth of the matter is that CF is a ruthless killer and I am not in complete control. I can't just sweep those thoughts under the rug. It's great to be positive and look at the glass half-full, but it's also okay to admit that it's scary.