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.
Six months ago, the National Cystic Fibrosis Foundation announced an update of their infection prevention and control policy. As stated on their website:
- Indoor events: At any Foundation-sponsored indoor event or meeting, including gatherings such as chapter committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.
- Outdoor events: At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.
As stated by the CEO of the CFF, Robert Beall, the intent of the change of policy was “… we want to be sure that we are doing all we can to reduce the risk of cross-infection among people with the disease. The health and well-being of people with CF is our top concern — it is at the heart of all we do.”
At the risk of incurring the wrath of what most in the CF world regard as a beloved organization run by those with only the best intentions for all of us with CF, I would like to respectfully disagree with Dr. Beall, and the Infection Prevention and Control Committee charged by the CFF to come up with an updated and revised version of the 2003 Infection Control Recommendations for Patients with Cystic Fibrosis.
Don’t get me wrong. The CFF does an amazing job raising money and awareness in the fight to cure CF. The millions of dollars raised by over 75 chapters and branch offices of the CFF provide the ongoing gravitational force that has led to a tidal wave of new discoveries and lately, some promising new treatments for a disease that we all love to hate. There is no doubt that the fight to cure this ghastly disease would be nowhere near the finish line, as it appears to be rapidly approaching now, if it were not for the Cystic Fibrosis Foundation.
Indeed, the Foundation is lauded for birthing the concept of “Venture Philanthropy,” in which non-profit fundraising organizations provide funding for small pharmaceutical companies to develop new drugs for orphan diseases…companies that would otherwise be unable to do the necessary research. The idea is brilliant, and the proof of concept is none other than Vertex Pharmaceutical, maker of Kalydeco, AKA Blue Lightening, or as I like to call it, The Little Blue Pill That Was The Beginning To The End Of CF As We Know It (I need to work on an acronym). Bob Beale and his team deserve abundant credit for this.
But, you and I are a big part of the fund raising process. We fund raise. We educate others. We tell our stories. When we were younger and cuter, they were our pictures on the fund raising literature. After all, this is about us, right? Yet here is where the CFF has completely left us out of the equation. We are SO far out of the equation, in fact, that the concept that we might actually be able to decide for ourselves if we want to risk attending a CFF event has not even been considered–at least not that I can discern.
Instead, the CFF will be introducing at their next annual conference, a 98 item document, listing all of the ways adults and children with CF should be protected from cross infection. Note that the passive nature “be protected” as opposed to “protect themselves.” I mean what I say and I say what I mean. This document covers everything from telling us to avoid construction sites to containing our secretions. They include the directive to avoid all social contact with each other, to avoid car rides with each other, to not share utensils, to stand no closer than six feet from each other if we are outside, and to please not exercise together (they didn’t say please). The Foundation has no hesitancy telling us what to do.
Generally, I can take this all with a grain of salt and know that they are in fact, simply doing their job, and attempting to educate us about the risks that we face when we come in contact with another person with CF whose lung microbiome is different from ours. NEWS BREAK: Bugs might mix and match, and we could end up on the wrong side of that equation. I am well aware of that, and I don’t intend to hug you the next time I see you (I am assuming that you, dear reader, have CFTR “issues” as I do). But, perhaps there are a few of us out there who didn’t see Grey’s Anatomy, and don’t yet know that we are all co-pariahs and need to avoid each other like the plague. If so, I’m sure the new edition of the best-selling Infection Control Recommendations for Patients with Cystic Fibrosis will not be for naught.
But when they specifically mandate my behavior, I get pissed. And then I write blog posts.
The last I checked, I had free will. In fact, I vaguely remember from Civics class a few decades ago that I had the “right to assemble.” I don’t take kindly to being excluded from an event sponsored by the very organization that is supposed to be my advocate. Interestingly, in the 92 item Infection Control Recommendations for Patients with Cystic Fibrosis, all of the directives are phrased as “recommendations.” This is good. That is what they are supposed to do…recommend ways to avoid cross infection.
Yet, the website specifically says “…only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.” Not a recommendation. An order.
The CFF has decided it is my caretaker. It wants me to avoid all risks, and is willing to ignore any rights I have regarding attendance at their events. Is the CFF going to mandate that I wear a bicycle helmet? It is risky behavior to leave it behind. This may be a silly analogy, but it is a PERFECT example of how crazy this new “one person” policy is. Clearly, I get to decide if I wear a helmet, right? So, why can’t I decide if I want to take the risk of going to an event where there may be another person with CF in the vicinity? I can decide. I should be allowed to decide. In fact, it is of highly questionable legality to prevent me from deciding.
So, how did they get this so wrong? This is anybody’s guess, but I would imagine some lawyers were involved. After all, if Johnny catches a bad CF bug from Sally, and it’s not on the record that the CFF advised against their sharing of that hot dog, Johnny’s parents could come after the millions that the CFF raises. We all agree– that would be bad.
But they have these things called “liability releases.” You see, I sign them all the time when I do clinical trials for new medications. So, if I wanted to go to the North American Cystic Fibrosis Conference this year, all the CFF would have to do is nicely ask me to sign a sheet of paper saying I won’t sue them if I start growing Paul Quinton’s pseudomonas when I get home. See? It’s simple. Problem solved.
So maybe that is not the real issue. I don’t know. Yet I do know that there is going to be some collateral damage from this new policy. First, there are many of us that are upset about this, and we are not going to back down easily. I am hoping that in writing this, I will hear from some of you who also see this new policy as going too far. There is a sentiment among those I have spoken with that the CFF does not place the quality of lives of adults with CF high on it’s list of priorities. Certainly, this new policy does nothing to diminish this notion. A groundswell of discontent from adults with CF is not something the Foundation would welcome, and might be what it takes to cause reconsideration of the “one person” rule.
I have heard and read some responses to this policy change along the lines of, “oh well, they are just trying to protect us, and they know best, so…whatever.” Please think again, a bit more deeply, if you are of this mindset. The CFF is attempting to control our behavior, at least when it comes to this “one person” rule. This is wrong. No matter how wonderful an organization it is, and how much it has done for us, this is wrong. We live in a free country where we are free to decide what risks we want to take. Please don’t let them start down the slippery slope of dictating behavior due to a certain genotype, because that is exactly what this is.
Other than general discontent among the rank and file patients, there is a possibility of collateral damage that is even more ominous. I believe that this new policy will continue to foster a very real FEAR that could keep patients from attending their clinic visits. After all, certainly more than “one person with CF” is allowed in a CF clinic, and if the Foundation won’t allow more than “one person with CF” at their events, it is not unrealistic to imagine that people will extrapolate from this policy that CF clinic is an unsafe environment.
Fear…born of cross-infection paranoia…is unhelpful, and very unnecessary. The CFF is indeed “adding tomorrows every day.” But life is not all about the numbers of tomorrows…it is also important to think about the quality of those tomorrows. If I can’t spend my “tomorrows” deciding for myself how to live, then what is the point exactly?
I have a tad bit of trepidation writing this post. The last thing I want to do is tell people with CF to take it easy when it comes to exercise, but this is indeed what I am about to do. It may be a controversial topic…and that’s ok.
Despite being a nerd who never did anything but read as a young girl, the last thirty-eight years of my life have been marked by a pronounced exercise addiction. As such, both good and not-so-good things have occurred. The good is clear: Somehow, I’ve beaten back the CF monster time and time again, and I honestly believe that my fitness level has been a huge contributor to this bit of good fortune. It’s been known since the early days of CF research that fitness level corresponds very well with survival in CF (Nixon, 1992). I certainly didn’t know anything about this at the time I started running in order to be the skinniest girl in my high school class (thank God I didn’t win that competition), but the consequent addiction to fitness has certainly paid off. The need to be skinny turned into the need to be in control (thank you weight-lifting), which morphed into the need to combat stress (thank you medical school), which then turned into the need to get out of the house (thank you two toddlers). It wasn’t until my CF began to really let it’s presence be known to me in more serious ways that exercise became my need to (literally) run away from reality.
It was only when out for a run, or when strutting around in the gym looking (and actually being) strong that I forgot about those pesky malfunctioning genes that took my sister and brother’s lives, and would likely take mine. Taking on fitness challenges and training for them was a way to beat CF, and forget about it at the same time. This is how I coped, and it worked really well.
Until it didn’t. The wake up call for me was last spring, when I lost my mind and decided to train for, and pass the RKC. You can read about that little escapade here. So, at 50, I proved that I could train myself so hard that I could end up in the hospital with pneumonia. Sure, it was a great experience (the RKC, not the pneumonia…that sucked), it was very good for my ego, and I think I even surprised a few people, but was it really worth the blow to my immune system, the chronically elevated cortisol levels, and the resulting scars in my lung tissue which are permanent?
Here is my point. If you have CF, exercise. Heck, if you don’t have CF exercise. That is what our bodies need…what we are made to do. Everyone is healthier when they move frequently. But overdoing it is not a good idea. Over-training is a serious stressor to the body. It causes hormonal chaos, as the body thinks the stress is never going to stop and keeps on pumping out cortisol like crazy. Cortisol is the body’s version of a drug we commonly have to take to dampen inflammation in the lungs, prednisone. Remember the last time you had to take prednisone? The shaky feeling? The mood swings? The elevated blood sugar? The yeast infections? Elevated cortisol over a long period can lead to these things and worse . It not only turns down the inflammatory response in the lungs, but it also turns down the immune response to infections, resulting in….trips to the hospital with pneumonia.
So what is a cyster (or fibro) to do? Moderate. It is the best course of action. Here is how I do it now (at age 51). I walk every day, at least 30 minutes, usually more like 60 minutes. This is at a moderate pace, and is usually a pretty low key event. My heart rate is never more than 50-60% of my maximum (although this is a guess since I never take it). There is a little bit of an upper body workout component as I am always accompanied by two dogs, one of which almost outweighs me, is horribly leash-trained, and constantly looking for squirrels.
Three days a week, I pick things up and put them back down (weight lifting). This consists of a heavy day, a medium day, and a light day each week. The “heavy” day means heavy (for me) weights, which means fewer reps. This day usually consists of deadlifts and bench presses, with some ab work thrown in for good measure. The “medium” day means not heavy, but not too light weights. It’s a Goldilocks day. The exercises are usually squats, military presses and rows, and the rep range is 8-10. I may “play” with kettlebell exercises this day–but nothing hard. The “light” day is just that–light. I go back to deadlifts, but just practice form, and work on my pull ups. This is the day I will “practice” my kettlebell favorites, like the Turkish Get Up or the snatch. Again, the focus is on practicing and playing. Currently, my weight workouts are limited to 45 minutes. I’m trying to get them down to 30 minutes, but this is tough for me, because I always think of “just one more thing” I want to do.
I can hear you now. “What about cardio?” I know, I know. Running has saved me from the CF beast. I can’t give it up…the beast might get me.
I’ve been experimenting with limiting my “run” days to two a week at the most. And they are not runs anymore. They are interval workouts, where I either run fast (I would say sprint, but that’s sort of stretching it) for short periods (15-30 seconds) and walk to recover, repeating for as long as it feels right, OR I walk uphill fast wearing a 20 lb weighted vest, and then slow way down (and decrease the incline) to recover, again repeating the work:rest intervals for as long as seems right. Because interval training is hard, these are short workouts; 20 minutes maximum.
So, let’s think about this: walks daily…at such an easy pace they don’t really count. Weight lifting 3/week at 30 minutes (that’s the goal anyway). Interval training 2/week at 20 minutes. Not much time, right? Now trust me, in order to get the work done, and make it worth your time, those short workouts have to be pretty fast pace and intense (except the easy weight lifting day…don’t even consider “intense”). This is what I’ve been doing this year. And guess what? I’m going on seven months with no infections and no IV’s. My weight is up. My mood is up. My numbers are up. Life is good. Compared to the times in the past when I’ve been working out like crazy, one to two hours-a-day, this is a much more sane, and healthy (I think) approach to fitness.
Here’s my final point: This isn’t a lot of time. So the next time you try to convince yourself that you don’t have time to exercise because you are so overwhelmed by the CF regimen, ask yourself if you have 20-30 minutes. That’s not even a sit-com!
Lastly, an important caveat: If you are just starting to exercise, or just coming back to exercise after being sick, start with the daily walks. Get those down first, building up an aerobic base. Next, add the lifting. When you feel strong again, start in with the intervals. At first, intervals may look like this: 30 sec walk fast, 1:00 walk normally. Then maybe build up to a jog for the work intervals…then a run…then a sprint….then a sprint uphill (ok so maybe this won’t happen until the Magic Pills are approved). Go VERTEX!
It has been a very long time since I have written a word on this blog. I don’t know why. Sometimes, I just don’t have much to say. But now I do. Life is good. I am healthy and fit (for me), and I want to talk about why this might be true.
In brief, I have quit trying to kill myself with intensely hard workouts, day after day. You would think after living with cystic fibrosis for 51+ years, I might have embraced the wisdom of this before now, but alas…
What has caused this epiphany, you ask? After attending a four day Z Health course last month, I’ve begun to re-train my nervous system as part of my overall exercise program. By necessity, this means I am being nicer to myself. I’ve learned that my brain doesn’t like to be whipped into an endorphin frenzy every single day…and neither does my body. Oddly, I’m 1) in better shape than I’ve been in years, and 2) not injured.
“OMG,” I can hear you now. “First, I have to take a million medications, AND I have to do hours and hours of daily treatments, AND I have to wear a vibrating vest for an hour a day, AND I need to go outside and walk or lift weights every day, AND I need to get 8-9 hours of sleep, AND I need to eat 5-6 times a day (add more pills), AND I need to work, AND I need to raise kids and be a spouse or partner and dog mom, AND I have to fit in a few home (best case scenario) IV sessions each year, and NOW I HAVE TO RE-TRAIN MY NERVOUS SYSTEM, TOO???”
Only if you want to minimize pain and injury and maximize your movement excellence. I’ll write more about Z and what it is doing for me in subsequent posts. Oh, and just a side note: if you move well and without pain, you move more. When you move more, you increase your fitness. And when you have CF, it’s not fitness, it’s life.
I almost forgot I had a few steps to go in describing my perfect workout.
Here is why (David Letterman style) I think strength training needs to be a key component in your workout–especially if you have CF:
10) You can seriously increase your appetite, especially if you are doing a heavy lifting program. Lifting heavy and the consequent eating like a horse is how I gained six pounds in six weeks. Doesn’t sound like much, I know, but it’s about 6% of my body-weight (you do the math). The only time I’ve ever been able to gain that much weight was the first year of college. Man did I love that all-you-can-eat cafeteria.
9) It’s great to beat your son at arm-wrestling. OK, so he’s only 12.
8) Maintaining bone density is pretty important, unless you want to crumble into a heap of skin and bones in your old age. Yes, I did say ‘old age.’ It will happen.
7) In CFTR-able people (code name for those without CF), lifting weights increases insulin sensitivity. There is no reason to think this won’t be true in CF as well. If you CFRD or are on the verge, or, if you don’t want to develop CFRD, a little weight training can absolutely not hurt!
6) You get to buy new clothes when you ‘outgrow’ your old shirts, pants, etc. Ladies, don’t worry–I’m kidding.
5) Who wants to be soft? Weight training will firm up those abs and legs and arms in very little time. Try it. You will be amazed. In addition, who wants to be skinny and wimpy? This will not be the case if you adhere to a regular lifting schedule.
4) Being stronger will make the regular chores of life easier. Easier means requiring less energy. Requiring less energy means requiring less oxygen. Less oxygen required means even if you have sucky lungs–that’s a technical term–you will still be able to carry on, soldier.
3) Coughing is easier and more effective if you have strong abdominal muscles. This is just true. Given that we cough, and the effectiveness of our coughs is directly proportional to our health…strong abs are very important.
2) Let’s face it, body image can be impaired in CF. It’s not hard to imagine why this is true, but this is a very important issue, especially in kids. One very good way to improve body image is to develop muscle. Development of muscle is not impaired in CF (as long as you eat and digest food). We can ALL do it. And when you do develop muscle that is visible to the naked eye…you feel better about the way you look. Even if you cough. Even if your fingernails look funny.
1) I left this for last because it is my favorite reason to lift. You are in control when you lift. Not CF. CF doesn’t affect your strength. CF doesn’t stop you from developing strong muscles. There is absolutely no difference between you and normal Joe GymRat, when it comes to getting strong. Booyah.
These are good reasons to add resistance training to your workout. The next post will discuss how to design your program.