Nur für einen Tag: Ein Einblick in Emilys Leben mit Mukoviszidose

Have you ever wondered what it would be like to live with CF—just for one single day? To do hours upon hours of medical treatments and endure disease complications while also juggling a professional career and active social life? We have a very special blog post to share today from someone who did just that.

Kathryn Burn lives in San Francisco with her husband, two dogs and 18 month-old son. During #CF1Day she was able to briefly sneak away from her job at Smart Patients, an online community for patients and their caregivers, and become a student with a special glimpse into what is it like to live with Cystic Fibrosis—just for a day. 

On April 2nd, Kathryn and Emily shared a unique day together and today, Kathryn graciously shares her reaction to the experience in a beautiful guest blog post for Emily’s Entourage.

I am privileged to be part of a wonderful project called “Just For A Day”. It pairs teachers living with illness with learners who want a better understanding of what a day is like in their teachers’ shoes. My teacher was Emily, and I couldn’t have been more fortunate with my pairing for #CF1day.

When I woke up that morning at 6am, I already had 23 text messages. That was just the beginning. Throughout the day, Emily would send me texts, photos and videos to share what she was doing, and why.

I knew some of the big things—the nebulizer and the vest. But when you share a full day with someone living with CF, you discover how vast that white space really is between the words “Cystic” and “Fibrosis” and that only a human connection can fill the void with meaning.

Emily filled that void for me with her texts, photos and videos. She taught me what a nebulizer actually looks like; how to do work while tethered to it; how to take a cute selfie while nebulizing; how to avoid getting sick while riding public transportation or getting a coffee; and how the day-to-day routine makes up the big picture of staying healthy. She taught me how therapy fits into life, how life fits into therapy, and how to stay positive and spirited throughout it all.

And you know what surprised us? The fact that a teacher could also learn. Emily found that it was surprisingly easy to share her day without fear of judgment—learning that sharing enriched my life, and made her more present in her own routine.

Emily and I decided that while our “Just For A Day” is over, we don’t want to stop connecting. We picked a very special time, have set our phone alarms every day for that time, and will send a photo to each other of what we are doing at that time.

I recommend trying “Just For A Day” as a teacher or as a learner. It’s an opportunity to walk in someone else’s shoes, to see the world through a different set of eyes, and in the meantime, open and enrich your own. Or simply pick a time to think of someone, and then make a connection via a text or a photo. If you are a patient, reach out to someone who is thinking of you. If you are friend or family member, you can think of what they are doing—the everyday moments that matter.Everyday moments, real connections are what it’s all about. I’m looking forward to sending and receiving my everyday moment today. I suggest you give it a try.

–Kathryn Burn

Kathryn, thank you so much for sharing your experience with us!

Now, in honor of #CFAwarenessMonth, we want to give YOU a more intimate look into life with CF. That’s why we’re launching a behind-the-scenes video series to give you special access into Emily’s daily life. Our first video follows Emily as she goes through her morning routine- for her, much more than just brushing her teeth and heading out the door.

Take a look, share freely to help spread awareness, and let us know what you think!! Also, stay tuned for the next segment in the series!