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Showing posts from October, 2011

Richmond CFF Event, Speech Notes

Some of you asked what I spoke about in Virginia at the fabulous Gala – so here are my notes! It was a wonderful event and I was so thankful to meet so many families and care-providers, dedicated to CF.   “ Starry Night in Italy” CFF Event, Virginia, October 2011 by Mary ElizaBeth Peters PIQUE: My thoughts are racing as I try to get ready for my last minute flight from Boston to Virginia. Flying to Virgnia – Hmm. I won’t have to pack too much, so my bag won’t be too heavy. I don’t need my nebulizer – or should I bring my nebulizer in case – in case . . . oh, that’s silly – well, let’s see if it fits. What kind of mask am I supposed to be wearing again? Dang, I should have gotten that flu shot. What if I get the flu? How many doses of meds should I take? One? Two? What if I get delayed? Maybe I’ll just take all the full bottles. But then again, what if lose them? Would I have to buy them again, out of pocket? How does that work, exactly? Okay – enough. I’ll take the regular amounts

a poem, not by me

My sister posted this on FB tonight, so I thought I’d share it. It makes me think about my scars, the ones I like and the ones I hate. The ones that tell my story and the ones that keep me from telling it. Before you ever get evaluated for a transplant, most have a lot of scars. Afterward, you have many many more. Scars They tell how it was, and how time came along, and how it happened again and again. They tell the slant life takes when it turns and slashes your face as a friend. Any wound is real. In church a woman lets the sun find her cheek, and we see the lesson: there are years in that book; there are sorrows a choir can’t reach when they sing. Rows of children lift their faces of promise, places where the scars will be. - William Stafford

Hello World!

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oh look, it's me lately.  I have been absent from my blog for a long long time. I am sorry. I have been very  busy enjoying life with my new lungs! Since last I wrote, the documentary series I was working on with Catie Talarski of WNPR has aired. You can see the link to the latest episode here:  http://www.yourpublicmedia.org/node/14749 The first episode, is aired here: http://www.yourpublicmedia.org/content/wnpr/where-we-live-living-cystic-fibrosis  . The show was so well-recieved, that is has been slightly re-edited, and found its first syndication, here: http://hearingvoices.com/news/2011/10/hv123-cystic-fibrosis/ Sadly, the other CF patient that I was being interviewed "alongside" - though we never met in person - passed away.  Brian Sercus died from Cystic Fibrosis shortly after he decided to be evaluated for lung transplant, but before he was able to receive one. He died as a brave, hilarious, amazing mentor to me in so many ways. Some would say that he &qu