I’ve not been writing much lately, but that’s because I’ve been busy becoming unstressed. It’s an ongoing project, but suffice it to say, I think it’s working. I have my moments, of course. While driving with three dogs in my car and one spots another dog daring to walk it’s person on a sidewalk nearby, the uproar of barking and screaming and gnashing of teeth as they hurl themselves at the car windows can be a bit upsetting, and I may lose my equanimity for a moment, but like all moments, these pass.
I want to write a bit more about stress in the next few months, as I am taking on a new project–that of teaching mindfulness-based stress reduction to people with cystic fibrosis (and those who love and care for them) via an online portal to accommodate the need to prevent cross-infection. One of the reasons I am so passionate about doing this is that I know firsthand how stressful it is to live with CF, to watch family members and friends die from CF, and what it feels like to be depressed and anxious largely due to the toll CF plays on my psyche. As a start to the stress series I hope to write (unless it becomes too stressful), I’ll repost what I recently wrote in the CF Roundtable:
Stress is not a light-hearted topic, but given the recent findings of the international TIDES study (The International Depression Epidemiological Study), I think it is important that we talk about stress and the common effects of mismanaged stress—namely depression and anxiety.
The TIDES study spanned 154 centers; 6088 patients with CF and 4102 parents. This is a very large sample size, and the statistically significant findings are eye opening. Specifically, there are elevated signs of depression in 10% of adolescents with CF, 19% of adults with CF, 37% of mothers and 31% of fathers (of children with CF).
The consequences of depression are decreased adherence to our very complex medical regimen, disrupted family function, diminished quality of life, difficulty with sleep, impaired appetite, poor energy, and a weakened immune system. If this is not bad enough, I’m sure you can come up with a few more reasons that depression sucks.
The findings regarding anxiety in the CF world are worse. Elevations in anxiety were found in 22% of adolescents, 32% of adults, 48% of mothers and 36% of fathers.
Overall, these findings show the prevalence for both depression and anxiety in the CF community are two to three times greater than community samples. Of course, both depression and anxiety are the result of complex factors including genetics, environmental, psychological and developmental factors. But clearly, at the heart of environmental factors is the stress caused by living with CF. Knowing about the chances of a shortened life span is stressful. Not being able to do the “normal” things your peers do is stressful. Trying to fit into 24 hours all that needs to be done daily to manage your illness is stressful, because life doesn’t stop just because you have to do treatments and occasionally go into the hospital. You still have to deal with “normal” life stress. And of course, knowing that even when you do everything right, the outcome is often out of your control is stressful.
All of these stressful events are “chronic” stressors, as opposed to “acute stress” such as being chased by a hungry tiger. We have evolved to get over acute stressful events (as long as we don’t keep re-living the experience). But chronic stress is a different animal—no pun intended. Chronic stress wears on the body, physically and mentally. It is always there, ready to ruin your day if you let it. Hence the findings of the TIDES study.
So far, this has been quite a bummer of an article, and I’m sorry. But there is good news. There are quite a few things that are very effective for managing chronic stress. I’ve written about some of these before, namely getting daily exercise, proper nutrition and sleep, and finding time to relax and engage in activities and be with the people that you enjoy on a regular basis. There are also very helpful medications when these lifestyle habits are not enough. There is certainly no shame in needing additional medical attention for depression or anxiety.
But in this article, I’d like to focus on a technique that I have found extremely beneficial for handling life with CF with a modicum of balance and even occasional equanimity. Mindfulness meditation has been a practice I’ve used on a fairly regular basis for over 20 years.
I took my first eight-week course in “mindfulness-based stress reduction” when I was in my mid-thirties, very early in my career as a surgical pathologist. For some reason, up until this point I had not had major lung complications from my CF. But with the stress of a new job, a significant commute, and the necessarily busy schedule, my health began to decline. The reality of having a lung disease hit me square in the face, and I was looking for ways to help deal with it.
I saw a sign for the eight-week meditation class at the hospital where I worked, and signed up. This was one of the better moves I’ve made in my life, as I’ve benefitted from that class for the last 20 years. The practice I learned has helped me navigate through illnesses, upsetting sputum culture results, losing friends and another sibling to CF, losing my parents, and generally watching my health slowly decline. I won’t say those things have been easy, but becoming familiar with that place beyond my mind and body that never changes has proven immensely helpful.
That first class also planted a seed in my mind, though. I began to think that if it could work as well as it did for me, that maybe others in the CF community would benefit as well. This seed began to sprout about five years ago, when the opportunity to train as an MBSR teacher landed in my lap. I had a friend who had done the teacher training, and as a result, she and I began to teach a community class in mindfulness, which was a blast. That was when I knew I needed to pursue the idea of bringing MBSR to the CF world.
A brief word about MBSR is in order here. The class is the brainchild of Dr. Jon Kabat-Zinn, a PhD in molecular biology who also happened to be a Buddhist meditation practitioner. He knew the practice of mindfulness would benefit sick people, and in 1979, began to ask his colleagues at the University of Massachusetts Medical Center to send him their toughest cases, the people for whom they had no answers. People with debilitating chronic pain, untreatable cancer, horrible anxiety, or terminal diagnoses soon began showing up at his door. Of course, he knew he couldn’t begin to preach Buddhist theory…this was a hospital, after all. Somehow, he had to secularize what he did every day. He needed to create Buddhist meditation without Buddhism.
So Kabat-Zinn came up with an eight-week program where patients met as a group once a week to learn several different meditation techniques as well as practice gentle yoga. They also talked about ways of coping with reactive states of mind, and learned how to practice being mindful in everyday life. They were given homework of daily meditation, using guided meditation tapes provided by Kabat-Zinn.
An amazing thing happened. Terminal illnesses weren’t cured, of course, but people learned how to cope and enjoy what time they had left. Some people had pain reduction, but almost all improved the ability to tolerate their pain. Depression and anxiety lessened. Ever the scientist, Jon Kabat-Zinn collected the data and began to publish.
Now there are thousands of published papers on the benefits of mindfulness. MBSR programs are offered in hundreds of hospitals and community centers internationally. The science is fascinating. It appears that just an eight week intervention including meditation and gentle mindful movement at home, combined with the weekly group practice actually physically changes the structure of the brain. Areas of the brain associated with the control of empathy, emotions and compassion grow, while areas involved in anxiety and stress shrink. And these changes correlate with what patients report in numerous psychological tests.
Research, then, supports what I have discovered directly: Mindfulness meditation can benefit those of us with cystic fibrosis by changing our brains in ways that foster emotional balance and self-compassion while reducing the ever-prevalent problems of depression and anxiety.
It is possible to learn to meditate without taking a class, of course. There are fabulous books. There are online guided meditations. But every time I take an MBSR class (I’ve taken six now), I am amazed at how much being in a group helps, not just with accountability but because of how the group dynamics work. People share their struggles. We all learn that we are not the only ones suffering with…well, just about anything. Starting a habit like meditation can be hard. It may feel very awkward and discomforting at first. You will fight sleepiness. You will doubt that it is working. You will wonder if you are doing it “right.” You will want to give up and go get coffee. Your mind will wander off a thousand times. But, when you are in a group of people who ALL describe these same struggles, it is easier to stay on track.
With the amazing help of CFRI and the support of Vertex pharmaceuticals, I am beginning the inaugural online MBSR for CF (and caregivers) this spring. I hope you will join me. You can find out more, and sign up for the course at http://www.cfri.org/mbsr.shtml.
If you sign up (and Vertex has taken the financial burden of doing so down significantly) I can promise that you will learn a lot about what your mind does that is less than skillful, and this will prompt more healthy coping with life’s difficulties. It is worth the investment. You are worth the investment.
I’ve recently had direct experience with a concept called “self-limiting exercise.” This term was introduced years ago by Gray Cook, a well known physical therapist, lecturer and author. According to Cook, self-limiting exercise “requires mindfulness and an awareness of movement, alignment, balance and control. Self-limiting exercise requires engagement.” Think the polar opposite of cranking on an idiot-proof weight-lifting machine or sitting on an exercise bicycle while reading the latest hit romance novel. A great example of a self-limited exercise is running barefoot. Without shoes on, the runner gets immediate feedback from sensory neurons in her foot when she over strides or strikes the ground heel first. The feedback is, “ouch, don’t do that,” and she immediately corrects. But any exercise that imposes natural obstacles and requires technical attention is self-limiting. When form breaks down, the exercise must be stopped, or else bad things happen.
My current “natural obstacle” is a herniated disk between L5-S1 in my low back. I was stupid and lifted a heavy, water-logged raft onto a dock at a weird angle. Then, just to further prove my complete idiocy, I proceeded to carry a heavy basket full of wet towels up a hill to the house. At that point, my back was screaming bloody murder, and I couldn’t bend over. This was a few of months ago and I’m almost healed, but man, have I been knocked over the head with the concept of self-limitation!
One would think after an injury like mine, I would rest my back. And I did for a couple of weeks because I literally couldn’t do anything other than walk…slowly…at first. But, thinking it was just a back strain, as soon as the pain relented a bit, I eased back into jogging (no problem) and then weight training (BIG mistake). The dumbbell rows kicked my ass, and I was back to square one–walking slowly. At this point, I realized perhaps I had been a bit premature and promised myself (and others) that I would cool my jets and rest.
Then I had to blow an FEV1. As you know, pulmonary function testing requires major effort from every single muscle from the bottom of the pelvis to the tiny muscles of facial expression. In the middle of the “Keep blowing…keep blowing…come on….a little longer” (you know the drill), my entire back contracted into a huge knot with the density of the universe just prior to the Big Bang. Yes, it hurt like hell and my score was pathetic. I know what you are thinking: “What was she thinking?” Well, I didn’t have a choice. It was for a certain research study in which I may or may not be a subject and about which I cannot speak.
Then came the MRI and the diagnosis, and the beginning of my very mindful manner of movement. Here is what I have learned from this experience: My body is boss, not my brain. I wanted to swing a kettlebell so badly…they were taunting me from their home in my garage. But I couldn’t even pick up the lightest one I own without major pain. I actually had a back spasm from picking up my month supply of colistin from the Kaiser pharmacy. How embarrassing! And how extremely humbling.
So for the last month, my badass routine has been a daily dog walk, followed by some planks and hip bridges. Of course, I’ve been deathly afraid of losing strength and wasting away into a waif-like creature, not to mention junk accumulating in my lungs. But, alas, this did not happen. In fact, this period of actually listening to my body tell me what to do (and what not to do) has provided a much needed break from lifting. I’ve lost exactly one pound (and this was probably due to a miscalculation of the enzyme requirement for a bacon cheeseburger yesterday).
Back at the gym now, I’m slowly getting back in the saddle, swinging a very light kettlebell, doing some easy Turkish Get Ups, and body weight exercises. The squat rack is beckoning, but I am not tempted yet. My PT has cleared me to do “whatever doesn’t hurt.” Sounds like that means self-limiting exercises. Lesson learned.
If you are interested in the class, more information can be found, as well as a direct registration page, here:
Have you ever thought it would be kind of cool to be able to meditate, but then a tiny little voice in your head would say, “Are you kidding? Spend 30 minutes focusing on my breath? I’d rather stick a needle in my eye!”
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!
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.
If you can start the day without caffeine or pep pills,
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.