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Ask Me Anything, Part 1

Question from our Vice President:

Interactions with other CF patients. How do they happen? How are they better? What do they lack?

Up until we started 3rd Street, I had only associated with one other CF patient in my entire life. She lived in the same hometown with me, and we knew a lot of mutual people. I’ve met her maybe twice in person at the Great Strides walks, before she had her transplant. We broke the 6 ft rule for a photo…no masks or anything.  We keep in touch through FB sometimes and are both big music fans and play guitar, so we have that connection.

My reason for previous lack of communication with CF patients is twofold. For starters, I'm old enough to have grown up without internet and still am getting used to the idea of “online community.” So that one person was all I knew and hadn’t even thought of the internet as a means of seeking out other people with CF. The second part is I knew how bad CF could be, having read about it and saw statistics growing up. I didn’t want to think of myself in that light, and since I do relatively well, I have a touch of survivor’s guilt. I didn’t want to look into a crystal ball, and I also didn’t want to feel bad for being healthy.

Since 3rd Street, I have ventured out online and realized it is really a tightknit community. We all feel like we are on the island of misfit toys and feel a bit overlooked. Since we are rare, we share a special bond and pool of information that is very valuable. I’m glad I have done that. Some people I have met I feel like they are the sister or brother I never had. Fighting this since birth gives a person a depth of character most people don’t reach until they are retired (if then). We are young sprits imprisoned by broken bodies, and old souls blessed with the appearance of youth.

What do these relationships lack? A handshake, a hug, sharing a table while getting something to eat, riding in the same car together, getting a movie together, or just being within 6 ft of eachother. All in the name of infection control.


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