Living Mindfully With CF

By Julie Desch, MD

I probably should just change this to the Mindfulness Column, because that’s all I seem to write about these days. But when I think about topics, this is all I come up with, so I’m either too old to think of new ideas, or because I’m old, mindfulness is the thing that matters most to me now. Or both.

As many of you may know, I have been teaching a class entitled “Mindfulness-Based Stress Reduction (MBSR)” to people with CF and their caregivers/loved ones over the last few years. This class follows a structured protocol—the class that I teach is the same one you might find in a community hospital or local community center. It is eight weeks in duration, each class is two hours long, with specific “homework assignments” between classes and a half-day “retreat” on a weekend day between classes six and seven. The main modification that I have made, which makes this class unique, is that it is done online instead of in person.

I think the class has been successful and I look forward to teaching it again. But my personal venture into mindfulness has led me to take a mindfulness meditation teacher training course with two well-known teachers in the Western mindfulness movement, Tara Brach and Jack Kornfield. As a result of this training, my practice has deepened quite a bit, and with that, I am seeing more and more clearly how having a more mindful presence to my life has eased the struggle of living with CF.

Nothing has changed with the CF, of course. I still get sick out of the blue and end up on IVs. More and more antibiotics are unavailable to me due to either bacterial resistance or my hearty immune system saying, “Nope.” I still have to start my fitness program back up from ground zero after exacerbations. I still read about friends who die of this crappy disease. I still miss my sister and brother. I still get angry, and sad, and frustrated.

What I see changing (slowly) is my relationship to the illness, to the emotions that come up almost daily, to the worried thoughts that carry me away into a fantasy future or that come up with stories about each bodily pain that arises.

To me, living with CF is a little like running a marathon. Maybe not in terms of the length of the race, but in the mental and physical stamina that it takes to finish. It’s hard. Sometimes it feels like things are going along smoothly, and other times you hit the wall. Somewhere around mile 15, the body starts to complain not just because your lungs aren’t “normal,” but because you’re well past halfway through and, dang it, you’re now “middle-aged.” Whoever designed the course apparently decided it was a good idea to make the runners go uphill for the last 10 miles. Evil. Now on top of crappy lungs, your back hurts, your knees hurt, you suddenly can’t see without glasses, your list of medical “providers” requires two pages and you forgot what you are writing about…

Oh yeah—the race. So when you decide to run a marathon, you train for it, right? That is, if you want to do it well, you set up a schedule, maybe even get a coach, modify your diet and put in lots and lots of miles “practicing” for the big day.

The analogy breaks down a bit here, because obviously we can’t train for our life. We’re in it. But I’ve started to think of “the rest of my life” as the marathon. I want to run it well, and to me that means being as present for it as possible…to not waste any more time on autopilot, being tossed around by my emotions, believing every thought that crosses my mind, regretting the past or worrying (much) about the future. This is a tall order, of course, and I fail almost every day.

But guess what I also do every day? I train. I’m in training to live mindfully for what remains of my life with CF. The training occurs not just during meditation, although that’s where it starts. In sitting quietly, a remarkable amount of insight about how the mind works becomes available. You get to see your thought patterns and how they interact with emotions and even with the physical body. You ideally see these interactions from a non-judgmental and kind perspective. We call it “practice” because to live this way continually is impossible to do (or it seems that way to me). But just as with practicing a musical instrument or practicing an intricate dance move, you do get better over time. Then as you understand how to observe the mind during practice, it gets easier to do it out in the world, and you become less controlled by an unruly mind. You have more choice in how to respond to difficulties in life. You have more power.

And now, drumroll please, you can join me in the training for the low, low price of…. oh yeah, it’s free.

As one of the requirements for the mindfulness teacher training course, I designed a new course called “Living Mindfully With Cystic Fibrosis.” I’ve essentially taken many of the concepts from the MBSR course, but hopefully tailored them to be more specific to CF, both for adults with the disease and for those who love them. As with my MBSR course, this new class is offered free of charge through the generosity of CFRI and grants from Vertex, Genentech and Gilead.

As a brief overview, the course is six weeks in duration. Each online class is 90 minutes and, instead of a six-hour “retreat,” we will just spend one weekend morning in silent meditation. The schedule is as follows:

Class One (July 17): Introduction to Mindfulness

Class Two (July 24): Mindfulness of Body and Breath

Class Three (July 31): Mindfulness of Thinking

Class Four (August 7): Mindfulness of Emotion

Mini-Retreat (Saturday, August 11): Morning Meditation

Class Five (August 14): Working with Uncertainty

Class Six (August 21): Self-Compassion and Resilience

While there is definite overlap with MBSR, even if you have taken that class, I’d encourage you to check this out. I put much more emphasis on building resilience, self-compassion and how to live with the uncertainty that we all face. As I read somewhere, everyone knows and understands at some level that they are going to someday die, they just don’t know how or when. But we understand this more acutely. We can learn to live with this uncertainty with more equanimity, and we can build the skills of resilience and compassion. Of course, many people turn to religion to fill this role, and there is absolutely nothing wrong with that! But this course is not about believing any doctrine. This is a course where you learn what is true about your own mind by direct experience. It can fit comfortably into any religious practice, or none at all.

The class will be offered one more time this year. If interested, go to CFRI.org and you’ll see it listed as one of the psychosocial support classes offered. I hope to see you online! s

Julie is 56 and is a physician who has CF. You may reach her at: jdesch@usacfa.org.