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‘Strangers Like Me’: An Open Letter to the CF Community
This week’s column by Nicole Kohr struck a chord within me for two reasons: 1) Tarzan was one of the biggest Disney movies of my childhood and I still have the entire soundtrack memorized, and 2) I could relate to much of what she said.
I suppose you could say that I officially joined the online CF community 10-ish years ago when, during a pretty difficult hospitalization, my recreational therapist suggested that I start blogging. I quickly began meeting others who were similar to myself in so many ways, but also shared differing perspectives and opinions that I could learn from. At that time, I wished I had known about the online community and taken part sooner.
“Strangers Like Me” reminds me that I was once lost, separated from the group of people whose souls and experiences match mine. So, please believe me when I say I’m the girl who’s ready to hear your story. We probably have a lot in common. — Nicole Kohr
You can read Nicole’s full column here.
If you’re reading this, you’re clearly involved in the CF community to some extent, but I wonder how involved you are. At what point did you begin interacting with the community online? Do you participate in various social media platforms?
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1 Reply
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Yes indeed Jenny, this column of Nicole is very good indeed and it whistles a tune for me as well.
My CF community: this forum! I don’t know any other pwcf. I never got to it in the Netherlands and since I found you guys&gals I don’t need more.
I joined 2019, to be precise on the second of April with this answer in the forum:
https://cysticfibrosisnewstoday.com/forums/forums/topic/when-should-talk-about-our-cf/
Since then 23 postings followed in 2019, 96 in 2020, 66 in 2021 and so far this is my fifteenth contribution in 2022. And I wrote some Tales for the cf community as well, they are on our website.
So, I have been rambling on quite a bit I fear. Oh, and I forgot the Sunday Morning column I started in 2021, just today writing my fiftieth edition.
So, that it the extend of my involvement. You are my only witness and I appreciate very much the freedom that this forum provides to just post about anything that is on my mind. Or on my not-mind as the case may be. Thank you! I hope to be at some service with my words.
Paul
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Paul, we are so glad you’re here! You have a lot to offer and bring so much to this forum community. Thank you, thank you, thank you.
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Thank you, Jenny!
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