There has been a lot of traffic on the Internet over the last few days about the Friends of Pepe blog. I had followed the blog, referred to it by CF Husband, and posted about Gina/Pepe a few days ago. Although the exact details are not, and likely never will be, clear the gist of it is: it looks like the blog was a fake. It was the work of one (my theory) or more people who are very, very sick (in the head if not in the body). This has caused anger, sadness, outrage and embarrassment; and hurt a lot of people.
Here's how I choose to reflect on it: the reason the story was compelling, I think, is that CF is a real disease and it's fatal. There is no cure. People with CF will die from it, and they will die prematurely. A transplant is not a cure -- it buys time. It is a very, very difficult operation with a range of outcomes (from death to 8-10-? years of additional life). If you get a transplant, you still will die from your CF (or from transplant-related complications) and you will die prematurely. Yes, the story apparently was exaggerated -- but this doesn't change the fact that REAL PEOPLE have CF and they will go through treatments like those described (if they are lucky enough to have good health care) and eventually unless they are taken by some other event, most will get sick, and sicker, and die. This will happen until there is a cure.
If you know and love someone with CF, you have faced this and you have sat in hospital rooms listening to them breath and praying for help, relief, anything. If you know someone with a transplant your joy in this life-saving gift is colored by helping them through what can be a very difficult recovery (it is an incredibly painful operation) and post-transplant complications. I have sat at Will's hospital bed through more than one night counting his breaths per minute -- hoping that the doctors have figured out the right mix of pain medication and antibiotics, calling the nurse when the breathing rate drops below 15 or so, and watching them stage the intubation equipment. I have been told, more than once, to call the family "this is an acute process" (which is hospital code for: your loved one is at real risk of dying, tonight).
FOP had around 275,000 or 300,000 hits. Let's say that is something like 20,000 unique visitors (or more). I respectfully suggest that each of those people take some of their energy about this issue and send $5 to the CF Foundation. If 20,000 people send $5 each, we raise $100,000. That's a lot of money that can be used to search for effective treatments and a cure for all the REAL Ginas/Pepes and Pauls.
I do collaborative process work for a living. In my field, we tell clients to "keep the main thing the main thing." So, let's all focus on the main thing here: this is a real disease, it's heartbreaking and it's fatal. If you're touched by it, if you were touched by Gina/Pepe/Paul's (fake) blog and feel hurt or angry or betrayed or annoyed: turn it to the good. Work for a cure. Rather than visit the various de-bunking sites and stress about this, take that that time and energy and dig through your couch cushions and the pockets of your winter coat and scrape together $5 to give to CFF. Then, go to the CFF donation page and make a $5 donation in honor of all the real Pepes out there. I did.
If you're interested: in the "type of donation" box check: "in honor/memoriam of." When you are prompted to enter the name of the person you are honoring and the name of the family to notify, I typed "pepe" in all 4 fields and it worked fine. Thank you.