It's too bad I forgot my camera, because for me, Monday night was worthy of recording. Why you ask? Well because I got to spend a few hours with my favorite CFer, Paul Q.
Although my uncle has CF, and I also had a little playmate when I was a child, I really haven't spent any time IRL with another CFer. For my uncle, it was always sort of the elephant in the room: no one taked about it much in our family. As for my playmate, well we were young and I think my mom tried to limit our interaction because she was sick and my mother didn't want that to scare me (and we wonder why denial?). My uncle is 11 years post tx and i think might feel he has left Cf behind, my playmate has since passed away. So besides late night chat with you all (each in our own separate box) and occasional glimpses of others at clinic, my Cf interaction has been limited. No Cf camp for this old dog.
Usually, meeting someone for the first time is a bit anxiety inducing, for me at least. and I prepared Paul Q for my possible muteness, as I can be rather shy sometimes. But it only took a few minutes for my shyness to melt away, partly, I realized, because i had nothing to hide. I wasn't worried at all about coughing - I mean, he knew why I would be coughing and though I didn't eat, I certainly didn't have worried about being stealth with the enzymes. I really have not ever felt so free with CF, not ever. Because although I cough a plenty around my family and don't hide enzyme taking, this was still unique and was....wonderful.
I have wrestled with how i feel about Cf for the past year, as I have increased treatments and tried to come to an understanding of what it means for me, blogging much of it here, as a record for myself and an outlet where I know others can understand. I tried "coming out" in class last semester, but that wasn't quite the moment of release I thought it would be. I still cringed each time I said CF. And mainly, it's because people just don't get it. How can they? They try and they mean well. But I just don't feel they can truly know. Even my own husband, who valiantly set me off to meet a "man from the internet," but sat home worrying the entire time, couldn't understand what I was saying when I tried to explain why hanging out with Paul Q was different.
I think that meeting Q exemplified what coming to this site has meant to me. The importance of the connections with regards to having this disease, the frienships forged here. I am grateful to all of you for what you bring to the table as we flounder about trying to catch our breaths.
And thanks Paul, for taking the time to spend a few hours with this old country gal. Here is the hug that I didn't get to give ya (((((((((((((((((((((((((((((((((((((((((((((HUG))))))))))))))))))))))))))0))))))))))))))))))
1 comment:
Reading your blog, I'm reminded again of how important it is to have the support of others who really share your situation.
And I remember your post about saying how you want to be involved (with other adult cystics )with your Care Center about how as an Adult Center it provides care to adults.
One way to get involved with your Care Center would be to
create an Adult Cystic to Adult Cystic Network
Start an Advisory Group of adult cystics for your Care Center
Interestingly, the Cystic Fibrosis Foundation has a lot of information for doing this on their "Quality Improvement Intiative" - but their information is about parents doing this.
I think it would be pretty easy to use the material and information provided by the CFF and tweak it so that it would be Adult Cystic oriented.
Of course, since adult cystics can't physically meet together, you'll have to find some "virtual" ways for the support and advisory groups to meet using snail mail and the various online techniques you are familiar with (email, chat rooms, conference calls, etc)
Good luck to you. I look forward to reading more about your journey....
-Betsy aka LisaV
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