Friday, February 4, 2011

Where do you draw the line?

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.

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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.

"Ignore the statistics," some say. "They'll just get you down and they're not an accurate prediction of how your story will play out." While those statements (and others similar to them) are true, I REFUSE to ignore the statistics. I prefer to use them to fuel my fire. I want to be in the demographic that lives to 37... then 57... then 77, and beyond! Looking at the stats and acknowledging that I could easily fall into the other half makes me THAT much more motivated to kick CF's ass. Fully digesting the scary reality of my situation allows me to strategize, to plan for the worst and work my up from there. If you call that negativity, then so be it.


So, back to the original question, where do you draw the line? My answer: I don't think we have to. I don't believe it's a matter of black or white, realistic or positive. Rather, I think that life is a thousand shades of gray. Pick and choose what works for you. Change it up as you need to. And never let anyone tell you that what you're feeling is wrong.

7 comments:

  1. I think many of us who chose to ignore the statistic in our own lives use it as fuel, also. In my case, I think, "That's BULL...and I'll SHOW YOU that's BULL!"
    Stats like that must be so hard for new parents of a CFer to face. By showing them how "individual" this disease really is and reassuring them that the stat is NOT a death sentence that kicks in the moment you blow out the candles on the big 3-7, I think we're helping them to overcome the initial "I'm going to outlive my son/daughter" anxiety. Not to say that every CF child will live past or even to 37, but there isn't any guarantee that ANY child, sick or well, will live to any certain age.

    I'm sorry for all that- I'm sure it was incredibly disjointed. That's a hard topic to address...

    -Jenna Langston

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  2. Well put. I did read the post you mentioned and I see where you are coming from. I think the writer of that post has a valid point in the sense that that attitude is what has worked for him but there are other ways of thinking and dealing with CF that are working for other people and we cant' be telling each other that our way is better than their's.

    I think there are people who dwell on the statistics to their detriment,as the post talked about, but I think they are few. I have never known a CFer personally who gave up on life because they were only going to live to 37 or whatever the age may have been. I think most of us are fighting in our way and doing what we can. We are all going to have different attitudes and different feelings in the process and that's okay.

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  3. Agreed, in a big way! Here's a book on the topic where the author claims that this huge push for positive thinking in our society has led to a decrease in compassion. People demanding positivity are simply saying they don't want to have to deal with your issue. It's an interesting perspective... http://www.beliefnet.com/Health/Emotional-Health/2009/12/When-Positive-Thinking-Isnt-Working.aspx

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  4. I have had a hard time posting comments on your blog lately so i don't know if you will get this, but i agree - we need to be able to cry and grieve our circumstances every now and then.

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  5. I agree with you 100%. I think our feelings are too important to ignore. They give us vital information as to what is most important to us. I think we can live fuller, richer, lives by acknowledging the negative feelings--so long as we don't dwell. I think by experiencing the negative feelings we appreciate the good ones that much more, we find out what really matters in life, and what we want out of life. It is a fine line though, like you said, and it can be hard (for me at least) not to get sucked into the fear. But I keep working on it and grow from it. Great post and well said.

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  6. LOL - I just finished posting my own thoughts on this as well! As you know, I totally agree. I read a conference talk (I think - I am wracking my brain to remember what) recently that talked about the fact that we do need to grieve the difficult things in our lives. That has sort of always been my feeling anyway - I agree 100% that when I give myself time to feel and work through my emotions, I come out stronger and more positive.

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  7. Jenny,
    Once again, you put your thoughts and feelings into words beautifully. Thanks for having the courage to express your own thoughts without having the intent of squashing anyone else's .

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