Saturday, August 16, 2008

False Identity

I'll return to my Matthew Perryman Jones-inspired series soon (he has a new CD coming out this week, btw), but a something has been heavy on my mind this weekend, and I'll share it with you before returning to my regular posting...

I discovered the horrible reality of a disease called Cystic Fibrosis several months ago, when I found
Confessions of a CF Husband. Before I continue, let me urge you to visit that blog and dwelve deep into the archives... you will find so much strength, inspiration, and faith there. God has used this family in incredible ways, and it's a story that deserves to be heard.

After I lurked around on the above site for a while, I began to visit the comments section. I found several other people with CF, and visited their blogs. Somehow, through one of their blogrolls, I happened to come across Gina, a young woman with end-stage CF -- constantly on the ventilator, fighting to breathe, unable to eat, barely staying alive. I read each and every post on the blog, added it to my bookmarks, and began to pray for for the young woman nicknamed "Pepe."

It's amazing how quickly I found a love in my heart towards Pepe. Perhaps not real love, just yet... it's hard to really love someone when you know so little about them; as the blog mainly chronicled Pepe's technical, health-related details, rather than her life and personality. It wasn't love, but it was a connection. I thought about Pepe in my spare times. I began to carry her burdens. And I'm not bragging about this... I was only doing what we are all supposed to do. But, yesterday, that bag of burdens suddenly burst, and hundreds of thousands of people found out that it had been completely empty all this time. Gina exists. She is healthy. The "Pepe" we'd all come to know is simply a fictional character.

The blog "Friends of Pepe" had been kept by a man named Paul, who is a real CF sufferer and transplant survivor. He got email and phone updates from Pepe and her "friend," sharing them for the world to pray about. He wrote the following today:

Today, my trust was breached in a way I can hardly convey. The consequence is that yours was violated as well. Pepe confessed to me after much prodding that she has been propagating a series of lies, that no transplant ever occurred, that no transplant was even in question, that Blake does not exist, and that Pepe has in fact been at home most of this year rather than in ICU as I described in FOP [the blog]. This makes a moron of me, of course, and a farce of FOP, which 275,000 visitors took at face value for many months. It mocks the hardship I have personally faced, having actually been at 12 percent [lung function], as well as the battles many of you wage on a daily basis. It mocks the readers who wept literal tears over her drama, who worried, and who placed their full trust in what was, admittedly, a compelling story. ... Please know that no one has shed more tears over Pepe's fictional saga or suffered more from this betrayal than I have. As you know, I spent this year in a dual role: trying to help Pepe make it to "transplant," staying up till all hours with her, while simultaneously trying to recover from my own.

I cannot even begin to imagine how much this hurts people who have CF. It's hurt me, even though I've never felt any of Pepe's suffering first-hand. It hurts me, even though I've never chatted with Pepe, sent her gifts, or stayed up all night praying for her. Other people have experienced all of these things, and their pain is unfathomable to me. To me, it's like the loss of an acquaintance; to them, it's like the loss of a sister. This incident has occupied a lot my time for the past few days. Here are some thoughts currently running through my mind:

- I am so grateful that people are so willing to trust others online. I hope that this test of our trust will only make it stronger.
- I am so grateful that the internet allows people with CF to find support and mutual understanding, as well as giving people like me an opportunity to look into a different way of life.
- I don't think we should regret praying for Gina. I have no doubt that there are people going through the same sort of nightmare.... people who perhaps don't have access to the Internet, or a friend like Paul to make their stories public. I don't think our God had any problem redirecting those sincere prayers to people who really need them.
- I feel sorry for Gina. I hope she admits her problem, gets help, realizes how blessed she is not to be sick, and finds someone who can love her as the healthy person she is.
- Lastly, being on the recieving end of a false and exaggerated story has really shown me the importance of honesty. I'm definitely the sort of person who tends to exaggerate things to get a point across or get a reaction. Not, obviously, from 100,000 people, but that's irrelevant. I'm going to think more about my words, because there's no such thing as a "white lie." They all hurt.

Love, Oksana

2 comments:

Anonymous said...

whoa... that's sorta... sketchy?

Oksana said...

Yeah. And the sad thing is that, now, other people with CF are being doubted... it's really broken up the community. :(

I posted about this at the Rebelution as a prayer request, and I was really upset to find out it was untrue.