Tuesday, September 2, 2008

CF'ers read at your own risk: I'm blowing off steam

I feel like shit.
I feel like all the wind was taken out of my sails.
The punched in the stomach, heart sinking, air out of your balloon.
That feeling.
I feel it for Shawn.

That feeling you would get if the kids at school left you out, when you thought you were in.

I am quite certain that my reaction is an exaggerated response. I know in my logical mind that my visceral reaction is a poor match for the catalyst.

So, please with that being said... ("With all due respect...I said with all due respect" *a line from 'Taladega Nights' Ha Ha)

Oh Fuck you!

I know that when you have CF you have to protect your health as much as possible. Avoid picking up bugs to the best of your ability. It's your responsibility to yourself and those that love you to do your best.

I'm a nurse I know and understand that. But it sucks. It sucks when your on the icky end of it.

What provoked this rant?
Well there was going to be a meet-up of Cf'ers from the east coast, adult CF'ers. Shawn has been colonized w/ MRSA. A dangerous "superbug" that reeks havoc on Cf'ers. Soooo, it was decided that pt colonized w/ MRSA would not be able to attend the meet-up. I understand the rationale. I understand that it is the smart and respectful thing to do. I understand but it still sucks.

In the non-Cf world
where Shawn is stared at for wearing oxygen, where he can't participate in most things and people don't understand why, where he is different from everyone else, where he questions his own worth, because he can't support his family any longer, because he can't be the adventurous crazy Dad he was, because he isn't the same husband and lover. In the world where he feel "less than", being excluded from that world, the non-CF world, that sucks.

But in the CF world
he's one of many just like him, others who understand why he coughs that way, why he might talk in short bursts, why he's slim, why he has to walk slower than everyone else, why he can't breathe after pigging out, why he has clubbed fingers. In the CF world, I'm sure it is still somewhat disturbing to see a guy his age on O2, especially when other than the cannula he looks so good, but it doesn't freak you guys out. It's all par for the course.

I wanted Shawn to have that. I wanted him to feel normal and accepted.

So being excluded in that world, the CF world, that really sucks.

I feel for him and it breaks my heart.

1 comment:

Kori said...

You have some very good points it is hard. Could Shawn not go even if he was to wear a mask? Just asking. Richard has MRSA too but he can go visit with his CF friends if he wears a mask. I don't know all the ins and outs. Maybe things are diffeent there. but if anyone understands it's definately other CFers.