"Community Connection" by Elena Goodrow

Community connection is my main goal when I am writing these Breathing Room blog posts. I hope everyone can find a way to connect to my stories, I hope it brings some value into your day, and I hope it helps you feel seen. This is also a topic that Breathe Bravely is focusing on for CF awareness month. Connecting with the CF community can be deeply complicated yet meaningful, due to our unique situation of being unable to be physically near each other. Every person with CF has their own journey with community connection. They all have a story on how they have connected with their community throughout their life, or perhaps how they have avoided that connection all together. Today I’m going to tell you my story, and I encourage you to share your story as well if you’re comfortable doing so. You can always comment on these posts or email me at elena.breathebravely@gmail.com if you want to make a post of your own!

If you read my previous post titled “Beyond the CF Girl” you know I’m no stranger to CF fundraising events. I’ve been participating in these events, and hosting them, throughout my entire life. This is where the bulk of my community connection stemmed from. I knew a lot of people with CF in the metro Atlanta area because we would all attend the same events. (They were outdoors, of course.) I grew very close with a few of them, I would look forward to seeing them at each race or dinner. My parents never wanted me to feel like I lived inside a bubble, they knew the importance of connecting with other people with CF so they didn’t restrict that connection as long as it was being done safely. I have fond memories of spending time with my closest CF friend at every fundraiser. We would stand apart and stretch our hands toward each other for a brief fist bump and then I always had a family member standing nearby ready to slather me up in hand sanitizer immediately after. I would giggle at the fact that I just “broke a rule,” and those fist bumps were often the highlights of my day. This friend called me his “cyster” and he was my “fibro.” I had never heard those terms before him. Even though they might not be for everyone, my 6 year old self felt like I was part of a secret club, and I loved it. We are still friends to this day, even though we live quite far apart now. I will be forever grateful for the connection I have with him. This connection I have with my friends with CF is different from my “normal” friends because of our ability to understand the hardships that we have both gone through. Even though every single person with CF is so different, we can relate to each other in a unique way due to our shared illness. For me, I have never felt more understood and appreciated than when I’m connecting with my CF friends.   

Another CF friend of mine, who recently passed, was a photographer. She invited my family over to her house one time and we did a photo shoot. Me and my three younger siblings got dressed up in fun outfits, put on mermaid tails, and posed with a treasure chest in front of a beach themed background. My friend took so many great photos that are still on display in my family’s house. This is another example of forming that in-person connection in a safe way. Proper communication was very important too, as long as nobody had an active infection/virus my parents highly encouraged me to spend time with them at a distance. I never felt like I lived in a bubble, thanks to them. I got to connect with many amazing people, have deep conversations, and I felt more understood than ever. They made me feel seen. Everybody will have a different level of comfortability when interacting with other people with CF, and that is completely okay. You can still get that connection no matter how far apart you are. That feeling is so valuable, and it’s what I want everyone to get out of the Breathing Room posts. 

My connection to the CF community looks very different now. My family and I moved away from the Atlanta area up into the North Georgia mountains, where there aren’t any CF events around… unless I’m the one hosting them. In fact, I am hosting a CF fundraiser called Salt Fest this summer. It's going to be a rocking music festival and I’m so excited to see how it goes! If you know anyone that is near Georgia, share this link! https://linktr.ee/saltfest

Since I’m so far from the majority of CF events happening, I don’t see those people much anymore. Now my primary connection with the community is through social media. I do things just like this to put myself out there in the community, hopeful that there are people listening and wanting to connect just as much as I do. I keep up with my Facebook so I can stay connected with all the people I used to host events with in Atlanta, and I try to message them every once and awhile too. While I do miss seeing my CF friends in person, I’m very thankful for the resource that is social media. Now that I live on my own and work full time, it wouldn’t be feasible for me to go to events all the time even if I did live close by. Life is full and social media allows for community connection to fit into your life on your own terms. The way I connect with my community has changed as I grow and change myself, but the importance of that connection has stayed consistent. It’s so important to me because it’s easy to feel alone and isolated, and feeling lonely isn’t fun. It’s such a gift to have access to a community that you can connect to thanks to having one big thing in common. If you are unsure of how to connect with the CF community, social media can be a quick and easy way to start. Simply scrolling through #cysticfibrosis can introduce you to some accounts that you can follow, and see what other people with CF have shared about their life. Sometimes there can be a lot of comparisons in social media, I have definitely had many times where I haven’t felt “sick enough” compared to those with CF that I was interacting with online. While this isn’t uncommon, I found for myself this wasn’t a healthy mindset. Everybody has such a unique experience, and that is what’s so beautiful about the CF community. No two people are alike, we can learn from each other as we observe our differences and connect over our shared experiences.

I hope that you have all found a valuable resource in this Breathing Space. Community connection can be overwhelming, but when you find a way to incorporate it into your life you will see the beautiful worth that is within it. You don’t always have to talk about CF either, people with CF can connect on so many things that aren't related to their illness. I have loved having conversations about non-CF related things. Hearing about your outlooks on life and your core values give light and life to meaningful conversations in which I learn so much. I wish all of you the best on your journey with community connection, and if you ever start feeling lost just know you can always come here. 💜