I’ve been there.

But then, 13 years ago, in the midst of one of the more stressful periods in my life, I signed up for a class called Mindfulness-Based Stress Reduction (MBSR).  It was an eight-week class that met weekly for two hours, and included one all day “retreat” toward the end of the class, where we practiced in silence what we had been working on over the previous weeks.  This was one of the best decisions of my life, and meditation has become one of the most effective tools I have as I continue to live a full and happy life with cystic fibrosis.

This class made such an impact on me, that I have now learned how to teach it.  The reason I took the time and spent the money for this training is that I want to teach others with CF how this simple practice can make a difficult and sometimes complicated life just a bit easier to handle.

I took the class (twice) in person (both times in hospitals), and co-taught another eight-week session with my mentor in a hospital in San Jose.  Why meditate in hospitals, you might ask?

Actually, the MBSR program originated at the Stress Reduction Clinic, which was founded in 1979 at the University of Massachusetts Medical Center by Jon Kabat-Zinn. Now, it exists in over 250 medical centers across this country as well as in numerous locations internationally.  Consistently, graduates of the program report:

• Coping more effectively with both short- and long-term stress
• Greater self-respect, energy, and enthusiasm for life
• Lasting improvements in physical and psychological well-being

You know that having cystic fibrosis does not define you. Yet, it can be hard to find yourself in the midst of treatments, medications, doctor visits, hospital stays, and constant concern over that magic number, the FEV1. Having a chronic illness like cystic fibrosis is stressful.  This is just a fact of life.

What is often forgotten is that there is much more that is right about us than is wrong! Using the techniques taught in Mindfulness-Based Stress Reduction, we can develop skills that will help us stay afloat in times of chaos, and get more in touch with aspects of ourselves that are untouched by problems with an epithelial chloride channel!

Common Questions

What is Mindfulness?

Mindfulness is simply purposefully paying attention to what is happening in the present moment, without judgment. The present moment is where life unfolds, and it is only here where choice is possible. By cultivating the practice of mindfulness, you can begin to see where you tend to be on “autopilot,” and learn to use compassion and courage to make conscious choices about how you allow life to unfold, rather than feeling completely out of control. Mindfulness practice is ideal for cultivating greater awareness of the interconnection of mind and body, as well as of the ways our unconscious thoughts, feelings, and behaviors can undermine emotional and physical health.

I can’t focus on my breath…How can I meditate?

The good news is that the leader of the class (me) also has CF and understands this dilemma.  There are other ways to use mindfulness to better cope with stress.  One does not need to focus on the breath.  There are many other ways to anchor the mind.  Breath is just a very easy one to teach, and it’s always there.  Because I understand that attention to the breath can provoke anxiety, we will explore other ideas.

I can’t go to a class.  I have a multi-resistant bug. Or, the corollary:  I don’t want to get multi-resistant bug.

The best news yet:  This class takes place in a virtual classroom.  All you need to attend is a computer with Internet access.  If you would like to be able to speak (and this is encouraged), a computer headset is recommended.

What are the details?

This class will be an 8-week intensive training in mindfulness based on ancient healing practices. In addition to the weekly classes, there will be one full day retreat scheduled toward the end of the course.  The price of the course is $350, but no one will be turned away for lack of ability to pay.  If you would like a scholarship, please contact Julie Desch at Julie@newdaywell.org.

Registration can be completed here.

The mind and body are linked. We know this now through innumerable well-designed scientific studies, and we are learning more every day about how this works. Don’t kid yourself into thinking that you have no input into your health simply because your disease is genetic.  When you learn the practice of mindfulness, you begin to experience exactly what this means, and with that understanding, you can begin to see some wiggle-room around unhealthy habits of the body and mind.

Give it a try by registering now

Class description

Class schedule

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If you can be cheerful, ignoring aches and pains,

If you can resist complaining and boring people with your troubles,

If you can eat the same food everyday and be grateful for it,

If you can understand when loved ones are too busy to give you time,

If you can overlook when people take things out on you when,
through no fault of yours, something goes wrong,

If you can take criticism and blame without resentment,

If you can face the worlds without lies and deceit,

If you can conquer tension without medical help,

If you can relax without liquor, if you can sleep without the aid of drugs,

If you can do of all these things,

Then you are probably the family dog.

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WAIT!  Don’t stop reading.  I know I used the “M” word.  I can practically hear you saying, “I don’t want to read about meditation.  There is no way in the world I can, or want to, meditate!”   I get that.  But just humor me for a moment.

So back to thirteen years ago:

I was STRESSED!  I was at a job that I loved doing…but couldn’t stand doing with the people I was doing it with.  Not all people of course.  Just two.  But they were making me miserable.  (Actually, in retrospect, I now see that I was making me miserable, but that’s another story.)  So, the environment was toxic for me.  I hated going to work.  When I was there, all I wanted to do was leave.  I was in an emotional heap on the floor most of the time.  In addition—quite probably as a consequence, my health was spiraling in a downward direction for the first time in my life.  And to boot, I was about to become a mother!  A good thing, yes, but as we know, even good stress is stressful.

I knew of Jon Kabat-Zinn’s work, and when I saw the class offered, I jumped at the chance to do it.

In brief, the practice I developed during that 8-week course probably saved my life.  It certainly helped me to calm down enough to make the rational decision to remove myself from an environment that was literally killing me.  Ultimately, I retired.

And, I kept up the practice of meditation.  I will admit, my practice waxed and waned.  I didn’t always have a daily practice.  In fact, at times I went months without a formal practice.  I even played around with different types of meditation.  What I noticed was that when I was diligent with just doing it, whatever type I used, life went smoother.  No, that is wrong.  Life was the same…constantly changing when I didn’t want it to (read: health declining), or presenting me with “opportunities” for growth (read: emotional pain).  What went smoother was my response to life.

Fast-forward thirteen years:

I am now in the midst of taking a teaching practicum in MBSR.  Yep, I want to teach it.  In fact, I want to teach it to YOU.

So what is this about Mindful Shaking?  Well, first let me just point out that mindfulness is pretty simple.  Easy? No.  Simple?  Very.

Mindfulness is the simple act of being present, non-judgmentally, to the experience of living in this moment, right now.  For instance, when you are mindful of breathing, you bring your awareness to the in breath as you inhale…you simply feel it, whatever that brings.  Then, you watch your out breath, as you exhale.  You don’t try to control your breath.  You just watch it.  And you watch whatever accompanies it:  emotions, thoughts, sensations, whatever, in a non-judgmental, detached sort of way.

For me (at first), this brought a lot of anxiety!  Learning to be mindful of the breath is not always the way to start with someone with lung disease!  In fact, I don’t recommend it.  Many people that I have discussed this with (most with CF) think that this means that they “can’t meditate.”  This is unfortunate, because so much can be gained from the act of being mindful!  You can practice being mindful of ANYTHING!  It doesn’t have to be the breath.  The breath is just easy, because it is always there.  It is the path of least resistance for most people.  Because of this, it is the default way of first teaching this practice.  But this is clearly not the way to go for those of us with CF.

So here is what I propose:  The next time you strap yourself into your Vest, instead of watching TV, or getting a headache trying to read a vibrating page of print, simply close your eyes, and notice the shaking.  Notice the feeling of the Vest expanding and contracting as you breath.  Notice the intensity of the shaking.  It is always changing, depending on whether you are breathing in or breathing out.  Notice how the shaking extends to the different parts of your body and how those sensations are always changing.  Talk about impermanence!  A vibrating Vest is the PERFECT vehicle to focus on to understand the concept of “always changing, always moving.”  In fact, mine starts and stops 14 times per second!

If the Vest is doing what it should, it is quite likely that you will need to cough.  This can be challenging, but what the heck?  See if you can be mindful while you are coughing.  If you pay close attention, you can sense the feeling of the cough-to-be.  Watch it, and then you can watch what your body naturally does in response.  Afterwards, it is interesting to watch how your body calms down again after multiple spasms of intense activity.  Slowly…very slowly, it comes back into balance.

Notice your thoughts about all of this (and you WILL have thoughts).  When you notice a thought, simply acknowledge it, and go back to the sensation of the vibrating.  Thinking is what your brain is made to do.  It is a normal process.  So just because you catch yourself thinking a lot (and you WILL), this doesn’t mean you are not doing this RIGHT.  It simply means you have a human brain.  If you had a bird’s brain, this would not likely be a problem.  However, then you would likely have other issues.

Luckily, as a human with a frontal cortex, you have a choice of whether you get lost in your thoughts, or whether you pull back as you notice the thoughts, and go back to awareness of the shaking.  It’s tempting to go with the thoughts.  After all, that is our pattern—our habit developed over years and years.  But just for fun…just for a minute or two, try the lesser-known path, and go back to sensing.  Not much happens if you do it once or twice and then quit.  This practice takes some perseverance before you begin to reap the benefits.

Then, one day it will dawn on you that the You that is watching the sensations is not the sensations, nor the body that is experiencing the sensations.  The You that is watching the thoughts is not, in fact, the thoughts.  The You that watches the fear and anxiety is separate from fear and anxiety.  And, the best part is that it ALL changes!  Everything…all the time…is in flux.  The only thing that doesn’t change is the Watcher.

One last suggestion:  Make sure that for at least the last minute of the session, you are very focused on being mindful of shaking, eyes closed…very focused.  The reason is that the moment of transition from shaking to non-shaking is so cool, that it is really hard to describe.   It simply has to be experienced.

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