Sunday, July 26, 2009

"A Good Day Ain't Got No Rain"

Recently, I was asked to consider this question and to think about other responses from my CF community. Here is what I have to offer, so far. (Originally commented on Ronnie's blog).

If you had it to change, would you prefer to have been born without CF?

Wow. What a complicated issue and complicated question. I remember getting into a fight with a family member (or two) because I was being asked this question when I was a teen, and my response was (frankly) "you might as well ask me would I rather have been born a man?" - I don't know, because I've never lived my life as a man, and I would be an entirely different person, so I wouldn't really be ME, so the question itself doesn't make sense.

She thought I was being flip with her because she expected (I interpreted) to hear either "YES! I would love to be born without CF!" or "NO, it is my gift from God." I live somewhere in the middle. I know that I am "who I Yam," as Popeye would say, because of CF. It changed my family structure, my friendships, and my entire way of living from the get-go. But there are days, and years even, when I am so aware of some specific thing that my health is holding me back from, or that I feel is robbed from me, that I can't help but think, wow. If I didn't have CF, I could do that. I could ____.

When posed with this question over the years, I have found (in my limited, one-person-research), that people really want you to give a loving, peaceful kumbaya response. If you are unable or unwilling to give this response, they get all upset. They either try to talk you into a better response with things like "But you're feeling a little bit better, right?" (though you might be getting worse.) Or, "Well, you're handling it well" (though you may be at your wits' end). Even worse, if you push forward with a response of "Well, this week sucks and I'm having a hard time," the conversation can easily turn into them trying to talk you out of your feelings, or belittling your feelings.

We live in a society where you are supposed to keep negative feelings to yourself.

Or save them for therapy.

So we're all in therapy.

Good job, us.

I was born with a very weak "editor" in my brain. I have developed a better sense of how to slow the thoughts between my brain and my mouth before they all come pouring out, but it's still a struggle. You ask me how I am, I'm gonna tell you. You ask me if you look fat in that, I'm gonna say yes or no. This makes me a great shopper and an honest person. Apparently, it also makes me a crazy bitch.

Meeting the expectations of others is not something I take well. I don't like the pressure. I don't like the assumption that other people's expectations are better than my own. I don't deal well with meeting other people's expectations just because they exist. I am an artist. Actors sit in a room and talk about their childhood bullshit all the time and call it "subtext." I don't think its weird to say "I feel bad today," but I realize, other people want you to say "I am fine" if they ask "How are you?"

I get it, okay? I AM FINE.

Reading a book by Michael J. Fox about his struggle with Parkinsons, he wrote (paraphrasing) that he struggled with this issue himself, that people all want to hear good news from you. He wrote (once again, I am paraphrasing), that he made peace with his anger over the pressure he felt to report the good news when he realized that people aren't really asking about HIM, they are asking him to reflect on THEMSELVES. They are vocally asking, "How are YOU doing?" but they are spiritually asking, "How will I do when I face an illness?" This realization freed him to just say "I'm doing great! One day at a time! Things are progressing! I have the best care!" and not feel guilty over the white lies, when they existed, or the shallow conversations of his large health issues.

When my friends ask me, I always bring up that Simon and Garfunkle song, "Slip Slidin' Away." There is a lyric,

A good day ain't got no rain
A bad day is when I lie in the bed
And I think of things that might have been

That is how I feel. It doesn't take much to make me feel happy, to see the wonder in my disease and to see the gifts it has given me and the gifts it has allowed me to give to others, especially children.

But it doesn't take much to make me feel robbed and abandoned in my illness, either.

I am glad this discussion is happening, and I love all my new bloggy friends. Those who didn't read Ronnie's blog, because I know that a lot of my readers are just HIS readers :), tell me what you think of this question, and what your responses have been to others, in the past.

Most sincerely,

Cystic Gal


  1. Holy crap sistah you are so honest. I think I will be as mature as you maybe in my next lifetime. How did you figure all this shit out?

    Here's something that I remember from years ago that may be relevant, although analogies are tricky. I hope this is not offensive, as CF and blindness are very blatantly different: I was traveling and I met a couple, both of whom were blind, and they shared the experience of having had innumerable surgeries - since childhood - to "correct" their vision. The husband's had recently been "successful," and subsequently, his parents had been happy, but he had suffered over the sensation of sight and was not sure how to manage the new feelings and really had been doing okay - fine or not, or living his life - without the many surgeries.

    Maybe I could have just said that being blind was part of who they were and they did not want to change.

  2. Here is a recent blurb on another CFer's blog that I really enjoyed and is the best way to explain my position: "I believe my LIFE is healthy because of CF. So yeah, I would chose a healthy LIFE over a healthy body any day."

    Here is the link to her blog:

    Just thought I'd share


  3. Lucy- thanks for your comment. I think my current middle-of-the-road response comes from my work with Deaf kids, who are asked by every Hearing person whether or not they would rather be Hearing than Deaf, and it's like asking the Deaf kid if they would rather have been born a Russian cat or something? Many feel that their identity is Deafness. I feel that part of my identity is CF. To ask me would I rather live without it is to ask me if I would rather not be me at all? I like being me :)

  4. Amazing post, CG. Maybe my fave so far. When you're done w/ the Michael J. Fox book (and if you're not illness/disabilitied out at that point) I'd highly recommend EAVESDROPPING: A MEMOIR OF BLINDNESS AND LISTENING by Stephen Kuusisto:
    He came to read in the visiting writers series of the university I used to work at, and a lot of what he writes and speaks about touches on his lifelong experience of his "handicap" and how from childhood on, it has, for better or for worse, made him who he is and who he sort of can't imagine not being. It's really good.

  5. CG,
    Thanks for your comment on my response, I too would have been a very egotistical teen without CF...
    I like your response, its realistic and addresses both sides, I admire your blunt honesty ;) I too am glad this convo is happening, thanks to Ronnie to get us thinking!


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