So far, 2014 has not been my favorite year. Three hospitalizations in four months is a personal record that I do not want to break. But, the good news is that I have learned quite a bit about “comebacks.”
I am writing this as I walk on a treadmill, sucking on a nebulizer which is providing hypertonic saline to my recovering respiratory mucosa. I have to stop frequently to cough of course…that is the point, after all. But it has dawned on me that this act is a win. It’s a small win, but a win, nonetheless. For the last month, my treadmill has been motionless, as I’ve either done my treatments from a hospital bed, or from my bed, or from the recliner in the living room. Simultaneous walking was out of the question.
This is big! I will celebrate by going to go to the gym today for the first time since mid-March (I cringe as I think of the monthly fee). Even though I am forced to be extremely cautious with lifting due to the effects of ciprofloxacin on my poor shoulders, this will be a huge step in the positive direction. The energy of that place feeds my soul in a way that is hard to describe. The gym is my happy place, and I have missed her dearly. God knows, my shriveled muscle fibers need to be awakened so that I can gain back my lost weight.
I’ve discovered that one small win a day keeps the frustration at bay (that could be a bumper sticker). CF is frustrating. Any illusion of control is busted at any time, with no warning. This wears on my psyche. It taxes my patience. It drives my worrying, monkey mind crazy. There is no way to stop the relentless progression of this disease. All I can do is my best to slow it down.
Indeed, the only way to win is to find small victories…every day. Some are much smaller than others. Some are so small that I long for my old microscope to find them. But they are there. A friend flying all the way from Texas to spend time with me and try to help me out. A funny thing that my son says. A dog licking my foot. A quiet weekend with my partner. A walk, even if I can only go 10 minutes, is after all, a win over a hospital bed.
They add up, the small wins. I’ll be back to my normal Julie eventually. Or, maybe I’ll just be a new Julie, still winning. Because I won’t let CF beat me. As long as I am in charge of the battle, I win.
I recently heard Carol Dweck, a research psychologist at Stanford, give a talk about her book, Mindset: The New Psychology of Success, and the number of “ah ha” moments I had prompted me to immediately order the book. Dweck’s research interest is in motivation and what makes people succeed. She has developed a fascinating theory that compares what she terms a “fixed” mindset to a “growth” mindset. As you might guess, having a growth mindset is a good idea, and I’ve begun to wonder how this theory might apply to living with a health challenge such as CF.
First, some definitions: A fixed mindset is when people believe that their basic qualities such as talent, intelligence and other abilities are fixed; that they are born with them and they essentially do not change over a lifetime. Alternately, a growth mindset is the belief that these basic qualities can change over the years given diligent attention, practice, mentorship, etc. One way to tell if a person lives from mainly a growth mindset vs. a fixed one is to explore what drives them to success (or not).
What drives someone with a fixed mindset is fear. They have been told all their lives that they are “smart” or “musical” or “artistic” or a “natural leader,” and they are mortally afraid that if they mess up, this suddenly means they are stupid, or not talented after all. They fear mistakes, and the result is they won’t do what it takes to grow, and learn more. The focus is on the outcome, on looking brilliant and not letting people see anything that belies their perfect reputation. It sounds stressful, if you ask me. What drives the individual with a growth mindset is challenge. They enjoy the process of doing something, anything, because the possibility exists that they might improve or learn something new. Mistakes are seen as part of the process, an important step in learning, and not as failure.
Much of Dweck’s research has focused on children and what happens when children are praised for abilities or talent vs. being praised for diligent work and resilience…the process of how a child learns and achieves as opposed to the end results. Surprisingly, children who are consistently praised and told they are smart or talented at this or that develop fixed mindsets. They begin to worry about doing the next thing, afraid they won’t perform up to standards set for them. They don’t want to take on hard jobs, finding it less stressful to just do what they are good at. They don’t take risks. They get defensive when they make mistakes, and may blame others.
But children who are praised for their effort and told that they worked hard which is a great thing, learn that the working hard is what is important. They develop a growth mindset, and are excited to take on new challenges. They are not afraid of making a mistake. They aren’t defined by their talents, nor do they believe that talents and intelligence can’t be improved upon with hard work.
The first thing I thought when I read this is, “Oh man, did I mess my kids up?” The next thing was, “Yup, that was me growing up. That ‘A’ made me happy for about 2 nanoseconds before I was worrying about how to get the next one.” Fortunately, a growth mindset can be fostered at any time in life, as we’ll see below.
All of this musing eventually led me to consider how mindset might affect one’s health. For example, let’s say a young child is born with cystic fibrosis, and told by parents and doctors that they are sick, and need to do x, y, and z just to stay alive. Of course, the kid does need to learn that it is important to do treatments, exercise, eat right, and do the myriad of things necessary to stay healthy and it would be appropriate to praise the child for doing these things regularly. But this is praising action, praising the hard work required to stay healthy. What wouldn’t be such a good thing would be to praise the kid for being healthy…because then as soon as she is not healthy, she has failed.
Now, I don’t really think parents and doctors routinely say “you are sick and are going to die if you don’t do this” to small children and parents of kids with CF (at least I hope not). And I think most parents know to praise their kids for taking care of themselves. Where mindset becomes more relevant to us is during adolescence and young adulthood (and even “old” adulthood these days). A teen or young adult who has fully assumed all responsibility for health maintenance might very well suffer if he/she has a fixed mindset around health. And let’s face it, when you continue to get sick, even though you do everything you can to stay healthy, it’s easy to develop the attitude that “CF is going to kill me, no matter what I do.” Then it’s easy to start saying, “screw it, what is the point?” and start to slip in health maintenance activities.
Decisions about the future can definitely be affected by such a mindset. This can go both ways. Someone might have an “I’m going to die anyway,” and make really stupid, risky decisions like taking up smoking or becoming a firefighter. Someone else might be so afraid of getting sick that they won’t try anything that stretches their routine. It’s tricky to develop a growth mindset when you have CF, but I know many people who have done it. I’ll list the steps according to Dr. Dweck’s website, and then give some examples of how I’ve seen this work.
Learn to hear your fixed mindset “voice”
Here’s what mine has said to me twenty-eight years ago: “Your sister, Kathy, died when she was thirty-one. You are now 24. Why are you wasting the last seven years of your life in medical school and residency”? This one was a doozy and nearly caused me to quit medical school. Figuring out where your mindset might be fixed and limiting you is not as simple as it sounds, especially when you live with CF. It isn’t “fixed” in a negative way if you are cautious about doing things that might be a risk to your health. Yet it is not a good idea to think, “I’ll never be able to exercise, because I’ve never found anything that I like or am comfortable doing.” That is fixed. That is not even open to trying. Remember, if you can breathe, you can exercise.
Recognize that you have a choice
When Ana Stenzel was training for the Seattle half-marathon in 2006, she began to develop shortness of breath, only to discover that she was starting to reject her first set of lungs transplanted years before. I can’t even begin to fathom the emotions she must have felt, knowing that this was chronic rejection which could not be remedied. At the time of the race, she was extremely symptomatic, and there was no way she could jog any part of it (our original plan was to walk/jog the race). Any person in her shoes would have been completely justified to say, “not this time, I will watch and cheer Isa on.” But Ana recognized that she had a choice. She could modify her original expectations, and walk the 13.1 miles. She didn’t have to run any of it. So she did just that, and got to experience the thrill of being in a half-marathon. The time didn’t matter. The method didn’t matter. It was the experience that she decided was important to her, and she was going to have it, rejection be damned. You always have a choice about how you frame a situation to yourself.
Talk back to it with a growth mindset voice
My friend E’s (I’ll keep her anonymous since she didn’t give me permission to use her name) lungs were failing. She had a horrible year with infection after infection and was in the hospital more than out of it. She began to need to use supplemental oxygen, and was very self-conscious about using it outside her house at first. I don’t know the inner workings of her mind, but I would venture to guess her “fixed” mindset might have said to go out and be seen with an O2 tank is admitting failure. The “fixed” voice might have whispered to her that O2 meant CF had won the battle, and she was on an inevitable downslide. To go out in public was to verify that as the truth. But she must have talked back to that voice. As she realized that she could do so much more with the aid of oxygen, she wore it to walk with, both on her treadmill at home, and around the neighborhood. Her inner dialogue might have sounded like this:
(fixed) “You can’t let them see you like this.”
(growth) “I need to walk. I need to get stronger. Even if I need a transplant, I have to be strong for that.”
(fixed) “But this means CF has won.”
(growth) “Shut up. CF is not winning. I am getting stronger despite crappy lungs right now, and that requires oxygen. I am not quitting.”
Talk back. A voice is just a voice. Just because you think it doesn’t make it true.
Take the growth mindset action
After you practice steps 1 through 3 above, this part will come naturally. As you begin to recognize your fixed ideas about your health and what it means to have CF, you can practice seeing things from a growth viewpoint. I reflected on my irrationally emotional decision to quit medical school, and took the growth pathway to going back for a semester just to see if things got better. They did.
Ana chose the experience of the half-marathon over worrying about time or mode of travel. She finished, and went on to a live well through a second transplant, a book and a documentary, a job as a genetic counselor, and gave immeasurable gifts of love and presence to the CF and transplant communities for many, many years.
E chose to listen to her growth voice. She stayed positive and exercised as she waited for her phone to ring with the news that her new lungs were waiting for her. Now that she has her new lungs, I’m guessing her growth voice is screaming at her with excitement as she gets stronger and stronger.
As you practice listening for it, the growth mindset voice becomes loud and clear. Ignoring it will become…uncomfortable. You might still stay in fixed mode at times, but you will know that there is another choice.
It has been some time since my last post. If you were wondering how long you had to do Day Two, or if you have given up on me, I apologize.
This is what happened: In short, I went, I conquered, I returned to crash and burn with pneumonia.
My mother was right, and so was my father, sister, partner, and probably even my dog. You really can have too much of a good thing…even exercise.
Someday, some post, I will relay my experience at the RKC. It was one I will always remember, and that I will never regret doing. It was amazing to feel strong, to realize that I was as tough as the next guy, even though my lungs suck (ha, no pun intended). It was humbling to realize how much I didn’t know, but equally gratifying to complete something I had set as a truly ridiculous goal for a 50 year old with CF. I met great people, friendly people, scary strong people, and a few people who were there, like me, just to push themselves. I was forced to “come out of my shell” in a sea of strangers (I really am shy), to explain my cough to people who worried for me, to assure people that I wasn’t really going to leave a lung on the floor–it just sounded that way.
I wore a Life Is Good shirt this, the first day, because it was really how I felt…happy to be there even though it was 35 degrees outside…happy to be swinging kettlebells with the best of the best…happy that my body was cooperating (well…it was at that moment)…just happy.
So I learned my lesson. No more Navy Seal-like goals for Julie. But, man was it a blast.
Back to Boot Camp posts.
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.