Sunday, August 30, 2009

A follow up to NUMBER 9 (...Number 9... Number 9 . . .)

Such a firestorm was lit by my little top ten list, Ten Things a CG Wants to Say last night. I am so glad I wrote it, but what a whacky ride today was watching the comments and emails and some phone calls come in.

Two and a Half Points for ToNight:

I feel, at this time, that I must be honest with you, the reader, and tell you something about the blog that you might have already intuited through reading it, or you might not have. This might be an element of the blog that you view as a turn-on, or a turn-off. This might be something you had not considered but do not really care about either way.

Any way you take it, I must share with you that everything I write in this blog abides by a code of truthiness. Not a single thing in this blog is a lie. However, some things may not be particularly true.

[Truthiness is a term first used in its recent satirical sense by American television comedian Stephen Colbert in 2005, to describe things that a person claims to know intuitively or "from the gut" without regard to evidence, logic, intellectual examination, or facts.[1] ]

For example, in regards to yesterday's list: I posted it yesterday, but I started writing it weeks ago. So, there is no really true time-stamp on things said in the blog like "yesterday, last week, this year..." etc. I've been a writer for about 23 years :) so I have a pretty big pool to draw from. And I'm not even kiddin' about that, y'all.

Not a big deal on the one hand, because I just want the writing to be truthful and have an effect. On the other hand, when I sent out Ten Things a CG Wants to Say last night, people were calling me and asking :

1. You got dumped by a bald guy last week? When did you get back with HIM?
2. I thought you stopped talking to your neighbor?
3. Why are you still on that chatroom?
4. Who called you from work and oh my god, what did they say?
5. I did send you a card, thank you very much! ...


Notice, the topics was "Ten Things a CG Wants to Say", not "Ten Things THIS CG Wants to Say." I have an idea for a post tomorrow based on a tweet I got today. That blog is going to be written for that tweeter. I want to write things that I think are universal for the patient experience, not all of them are going to be true for me in the very moment that I explore them on the blog.


I will be deleting comments that are personal narrative or use my real name or town or etc. Though I currently use my name on the blog, I work in an industry where I am always up for work, getting work, being googled, etc. So, I might periodically go anonymous on the blog and just take my name off it.

I also want to continue to use the blog to serve its audience, not my personal correspondence. That's what email and facebook are for!


What a wonderful conversation was opened up surrounding the topic of privacy vs. support at the bedside! My own T-Money and I had a wonderful conversation about the delicate balance it is to be a patient in the room, and a caregiver at the bedside. It seems that the moment a patient wants to be alone, it can be closely followed by the moment s/he wants a companion. No one has a proper etiquette book and CF can be an ugly, indelicate, impolite disease.

Sometimes patients want it all: They want to have privacy when they aren't at their best, but they need arms around them to help them feel better. Caregivers want it all too: They want so badly to do "the right thing" when none of their actions feel "right" because the situations themselves are very difficult.

My CysticMommy and I then talked about my responsibility to work on saying what I need when well-meaning friends come by my house and drop by with food. I could as easily say, "You can put the casserole down, I made coffee, tell me what's going on with you. I miss you!" instead of letting them lead the conversation and come and go so quickly.

Then, CysticLady and I talked and she shared that it's just good to get it all out on the table. With CF, most of the day we are battling battling battling to put our health first. It can be exhausting sometimes to have to be the director of every little thing like the smoking man at the cross-walk, or the neighbor at the end of the driveway. Sometimes you just gotta let it float by til a few months later you write a funny/sad blog about it!

Goodnight y'all!

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