Full disclosure: I am not a teenager. I’m a 41-year-old adult living with Cystic Fibrosis. In the non-CF world, that would make me middle-aged. But since the average life expectancy of a person with CF was less than 20 years when I was born in 1979, I’m practically geriatric in CF terms.
So when I say I want to talk to you, the bright-eyed, idealistic, generation Z young adult, I want you to know where I’m coming from when I tell you… the world is your oyster.
You are capable of so many things. You have incredible, life-changing medications at your fingertips that may mean you will never have to see the advanced lung disease from CF. But until the day we have a cure, you will live with it. It will be your constant companion. A disease that still has to be monitored and managed and that can still rear its ugly head at the most inconvenient moment when you take your health for granted.
The moment when I had to grow up, fast
For me, that moment came when I was a junior in college, studying voice (in that middle photo above). One night I came back to my apartment, was laughing with my roommates as we walked in the door, and then I coughed (if you’re like me, you know that laughing can often trigger a cough). No big deal, I walked to the bathroom to cough into the sink and I did a double take at the splash of bright red blood against white porcelain.
I’d never coughed up blood before. I was so scared. I walked out into the living room in shock and just said, “I just coughed up blood.” Everyone froze and looked at me, and we all at each other like, “Now what?” Fortunately, there were a couple of nursing majors in the room, they both said, “You’re going to the ER. Now.”
It turned out that while I’d just been living my normal college-student life, a major lung infection had been brewing. I ended up admitted to the hospital for my first-ever round of IV antibiotics. I knew nothing about PICC lines or IVs or hospitals or home infusion companies, but I had to learn quickly. I was in the hospital for 2 nights and then sent home with my IV supplies to finish up my 2 week course of antibiotics from my apartment on campus, which I shared with three other girls (including a shared bedroom with 1 other person). I had to deliver my own IV med doses twice a day. We had to clear space in our fridge for my meds and on the tiny counter by the sink and the kitchen table had an IV pole next to it. I got better, but three months later I needed the IV drugs again. That semester I had to grow up really, really fast.
I’m not trying to scare you, here. I just want you to know the unfortunate truth that eventually, everyone with CF has that moment of realization that you are not immune to the effects of this disease. One moment you feel healthy and young and invincible and you’re just going about your life, and then something happens and you realize this thing that always happened to other people with CF suddenly is your fight, too.
But there are some things that you can do to prepare yourself for that moment. Here are three lessons I learned from yoga that helped me grow into my own skin as an adult with CF.
1. You get to choose for yourself (not just follow orders)
When you grow up with CF, you’ve always got doctors and your parents telling you to do things. Taking meds, going to doctor’s appointments, getting poked with needles, or even just eating more food than you feel like you need. Sometimes it can feel like you don’t have authority over your own life. Even at school or in gym class, it can feel like there’s never enough freedom to do what you want to do, only what everyone else wants you to do.
Yoga is different. On the yoga mat, YOU get to decide what you’re going to do. The yoga teacher is there to help guide you, but the real guide is your own body and breath as you learn to feel it and listen to it in the moment. The more practice you get, the better you become at listening to the messages that your body is giving you, and responding to them. You get to make the yoga class that you want to experience.
2. Your breath is the source of your power
Yoga teaches you how to breathe. Those of us with CF often have this love/hate relationship with our lungs. In a yoga practice, we learn different breathing patterns that help bring that freedom and ease back to the breath. I’ve even learned how to use yoga to make my airway clearance easier! But more than that, yoga breathing has taught me how to get through things that I had a hard time getting through before.
I had a traumatic experience with that first PICC line I got in college, and for years it always gave me really bad anxiety when I had to have a PICC put in, which made the procedure even worse because I was tense. The breathing techniques I learned in yoga help keep me calm, so I can observe what’s happening in my body without feeling so emotionally wrapped up in it. I still don’t like having PICC lines put in (who would?) but since I know how to use my breath to keep myself calm now, they go a lot more smoothly and quickly, which is a big win in my book.
3. Don’t be afraid of the unknown
CF can take an unpredictable course and sometimes it can feel like you are at the mercy of whatever happens, which can be scary. But have you ever heard the saying, “We fear what we do not understand?” When you understand your own body, it makes it a lot less mysterious and less scary.
Yoga builds internal self-awareness of what you feel in your body, down to the tiniest little sensations you can feel in your breath or heart or hands. In slowing down and quieting the mind, you can notice little things that would otherwise be drowned out by the activity of daily life. Now that I do yoga, it’s easier for me to notice when I haven’t eaten, or that I’m showing signs of getting sick. I’ve noticed flare-ups early that way, and so I can talk with my doctors about it before things get serious.
Unexpected things will still happen, but through yoga I’ve come to understand what parts of CF I can control. . . and learned to let go of the things I can’t control.
Yoga for Young Adults: Tuesdays Nov 17-December 9
This four-week class will be held in CF Yogi’s virtual studio on Zoom, Tuesdays at 4:30 Pacific / 5:30 Mountain / 6:30 Central / 7:30 Eastern time. Our awesome instructor Fran Anderson will teach some yoga FUNdamentals to help you get strong while building breath control and body confidence. You’ll also get to meet others your age who know what it’s like managing the daily balance of school, CF health, and “real life.”
About the instructor: In addition to being a yoga teacher, Fran is high school math teacher and mother of 4 kids including a daughter who has CF — so she knows how weird it is being in high school or college right now and the adjustment everyone is going through with remote learning. The goal of this class is to support students impacted by these educational changes and giving them a way to decompress from the everyday stresses we’re all facing.
Recommended ages: This class is ideal for young adults and teens, but all ages are welcome to join (including tweens who feel that they’ve outgrown kids yoga).
To sign up, register here for CF Yogi and watch for your welcome email (it should arrive within 24 hours). Follow the instructions in the email to log in to your member portal where you’ll find the link to join us in zoom. If you’re already registered for the CF Yogi program, log in and go sign up for this class right here!
You’ll get the most out of it if you attend live, but classes will be recorded so if you can’t make it live you can still do the class on your own (everyone who signs up for this class will receive the class video links via email).