I know I am not the only one with a heavy heart today. Not the only one touched by a very special person, and probably not the only one turning to her online friends for solace and support.
I don't know how much I am ready to shift through my feelings yet, it is all too real and shocking for me. So instead, I wanted to repost an old blog, from early July 2008. Paul was driving back from Pitt and he stopped through and we spent a few hours hanging out. It was wonderful. I originally blogged this at cf.com, but I am so glad I thought to back it up so I can share it again now. Words are all I have left...but how appropritae for our Paul Q.
Hank AND Merle
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))))))))))))))))))))))))))))))))))))
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