Last week, the CF community received the groundbreaking news of the successful Phase 3 drug trial for a new CFTR modulator triple-combination therapy for people who have specific CF genetic mutations. This announcement has broad implications for those of us with this CF mutation, as this life-changing drug could become available as soon as next year.
Between that, and our first-ever CF Yogi fundraising campaign for #GivingTuesday, my head has been in a spin making sense of it all. Putting my thoughts into writing is a coping mechanism for me when my brain turns into overdrive. I thought I’d share some of my thoughts that started to coalesce as I put them down on paper.
Receiving an Offer to Change Your Reality
I was a college freshman when the movie The Matrix came out (I know, I’m dating myself here). It made an impression on me, especially since my fellow students and I were talking about the nature of reality in our philosophy class at the time.
One of the most memorable and enduring images from the movie is the scene where Morpheus offers Neo two pills… one blue and one red:
“You take the blue pill—the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill—you stay in Wonderland, and I show you how deep the rabbit hole goes.”
Neo has to decide whether he wants to embrace this new reality. It’s an uncomfortable reality, but it’s the true one.
He can stay in the world he always believed was the real one up until that point… where he’s comfortable and he knows what to expect.
Or he can choose to fulfill his true potential and take the leap into the unknown.
The Yellow Pill and the Blue Pill
Last summer I was offered two pills, one yellow and one blue. But rather than choose one or the other, I had to choose both to get to Wonderland and see what reality looked like on the other side.
This double-combination therapy treats the root cause of my CF – two different faults in the way the cells in my body create and processe the CFTR protein. My DNA told my cells to do it this way. A mutated gene, identified as F508Delta, told my body to do something different than your garden-variety human.
What is CFTR?
“The CFTR protein helps to maintain the balance of salt and water on many surfaces in the body, such as the surface of the lung.”
This mutation caused my body to create CFTR proteins in a deformed shape. They folded in such a way that they couldn’t do their job. Plus, that chloride channel path that they travel through was closed. Even if the proteins were made in the right shape, they still couldn’t get through the door.
Two defects, two pills prescribed to correct those differences. Yellow pill. Blue pill.
Unlike Neo’s red pill, mine don’t take me to a full-fledged reality quite yet, but to a place where I’m getting a glimpse of my future truth.
The body I walk around in every day has been obstructed from its full potential for my entire life. Now I’m getting a peek at the truth of my body as it would be without this disruptive and fatal mutation.
I’m getting a sneak peek of the future that could arrive as soon as next year, when the third pill finally arrives.
A glimpse at Wonderland
There is so much promise out there. This promise exists not only for me, but for thousands upon thousands of us with this mutated gene that causes a fatal disease called Cystic Fibrosis. For adults like me who were already blessed with the gift of reaching mid-life, this means that now we might have to think about heretofore-foreign concepts like menopause, and retirement plans.
Young adults may feel more free to pursue the careers that weren’t accessible to them before, that have demanding hours and rely on healthy respiratory systems.
The youngest children may never even see a progression to severe lung disease, at all.
It’s the most exciting thing that’s ever happened to me. And yet, if I’m being honest… it also intimidates me. Because based on what I can already see my limited look at this new reality, there are some things I’m going to have to un-learn and re-learn about my own body.
Exploring the New Reality
Symdeko hasn’t made a big impact on my lung function. But I’m noticing that I gain weight a LOT more easily than I used to. The “CF diet” I’ve learned to think of as normal is starting to manifest in my body like it would in a person with a regular human metabolism.
For someone who’s struggled their entire life to gain weight… and keep it on… this is a pretty dramatic shift in my body and in my understanding of what it means to take care of it.
For the first time in our sixteen years of marriage, my husband and I can eat the same thing for dinner. This is huge. This is a quality-of-life metric that wouldn’t show up in a doctor’s office.
The Body in the Mirror
At the same time, there is a dawning realization that the body I’m seeing in the mirror is not the one I’m used to seeing. I want to feel like I can embrace this new body as I get used to seeing myself in the mirror, and on camera, in my new body.
To be honest, I get nervous now posting pictures of myself, because I know they don’t as closely match what the outside world (and especially the Internet) tells women is “beautiful.”
I love this new body and this new fat in all these places that makes me feel warmer and more graciously feminine. Yet it’s hard to mesh that against the judgment of the world.
It may not look like much of a difference now, but when the third pill arrives, it’s likely to bring about major change.
What “Healthy” Does (Not) Look Like
The picture that we see as “healthy” on fitness magazine covers and Instagram feeds is really not healthy at all. No matter how strong you are, a physique chiseled to the degree that you can see individual muscle fibers is not healthy.
The human body naturally needs a fat reserve between skin and muscle. In order to remove that natural layer of fat that covers those muscles, the models and movie stars that we see praised as the peak of fitness and beauty are putting their bodies through extreme trials. They train up to build muscle, but then go through a “cutting” phase to remove that fat layer before they step in front of the camera.
The glossy photo doesn’t show you that they’ve been going through starvation diets to obtain the “ideal” physique for the photo shoot. They may even forgo drinking any fluids on the day of the photo shoot so that they look slimmer. Even after all that, the image is manipulated by visual editors that further distort reality.
That picture of “health” that we keep in our heads is actually what an underfed, undernourished body looks like. That’s also what my body used to look like.
Navigating the New Normal
My new body has more gentle curves where there used to be lines of visible muscle. More prominent padding in places. I’m learning to embrace the curves… and gradually replacing key elements of my wardrobe. I have garments of sentimental value that have been hanging in my closet for 2 decades simply because they still fit. Now that they no longer do, I have to decide whether they’re still worth keeping.
Based on what I already know, I expect that I will have to put some effort into re-learning what a healthy diet looks like, for me in my new “Wonderland” body. Learning to navigate the new normal, in more ways than one.
It means navigating the changing fluid dynamics of my airways, and the impacts that has on my singing technique and my career as a singer. Adjusting the exercise / work / life balance for whatever new energy or stamina I achieve. Monitoring my blood sugars to see impacts on my CFRD.
I’m already discovering that things that I have always assumed just “are the way they are”… might not be what I thought they were, after all.
Yoga Builds Mind-Body Awareness
Yoga is going to be a major tool in my arsenal as I navigate the new normal. A regular yoga practice helps me helps me stay in tune with changes in my body.
Yoga increases Kinesthetic awareness (a fancy term for “mind-body awareness”). It helps me to notice things that might otherwise slip by under the radar, unacknowledged.
Yoga gives me early warning of exacerbations, and helps me notice improvements, too. Yoga helps you notice that little steps add up greatly over time, until one day you discover that you can climb a mountain.
I’m excited to help the rest of our CF community learn to use yoga as we navigate this new normal, together. Helping us to get some clarity and objectivity. Letting go of the judgment and embracing the imperfections.
It’s a little daunting to think about, relearning the world as I know it. But this is the challenge I’ve been waiting for all my life.
I’m ready for the red pill. Let’s see how deep the rabbit hole goes.
Katie M. is one of our teachers and co-founders, and will be kicking off CF Yogi’s weekly livestreamed yoga classes with multi-level yoga starting in January 2019. Classes are free to the entire CF community, including adults & kids with CF, parents & caregivers, family & friends. Sign up for the mailing list here to get involved!