One of my father’s favorite sayings was, “I’m in pretty good shape for the shape that I’m in.” He was being funny of course, but these days, I can totally relate. It’s all about perspective. Today, I’m thinking about what it means to be “fit” as I walk at a snail’s pace on my treadmill and suck saltwater into my lungs, which are being violently shaken by my therapy vest.
If you use the biologic definition of fitness,
The genetic contribution of an individual to the next generation’s gene pool relative to the average for the population, usually measured by the number of offspring or close kin that survive to reproductive age.
then I’m toast. These genes were surgically stopped in their tracks decades ago. On purpose.
If you get a bit less Darwinian, fitness could be described as:
The capability of the body of distributing inhaled oxygen to muscle tissue during increased physical effort.
This is getting closer to what I’m after. But living with cystic fibrosis takes a special kind of fitness not intimated by either definition. My favorite description of fitness is one I heard on a podcast yesterday, which was something like,
The ability to do what you need to do, given the exigencies of your life, and to have a little left over for emergencies.
In other words, to be in good shape for the shape that you are in.
The “exigencies” of our lives include things like constant immunological battles in our lungs, defective insulin production, and shitty (pun intended) digestion, to name a few.
To be fit with CF means to be able to thrive, given all of these complications…and then, to have something left should an emergency occur.
I have a CFit client who is a perfect example of CF fitness. This woman is a runner, and also lifts weights and dabbles in Crossfit. She’s hardcore. She related a story to me the other day which left me amazed.
She was running with a group of people crossing a bridge, when they noticed a child stuck on a log in the water below. This was in Florida, and the water was swampy and apparently the home of many crocodiles. The kid was unable to swim to safety, and was in a precarious position, to say the least.
So my client took off at a sprint, as she needed to run nearly a mile to get to where she could enter the water. Then, she had to swim to the kid and keep him/her (I’m not sure) from being swept into crocodile territory until help arrived.
Now that is fitness!
If you are reading this thinking, “that could never be me,” you are missing my point. If you have CF and are simply moving more each day in attempt to improve your health, then you are an athlete in training. You don’t need to be a child-rescuing ninja. If you don’t like to run, then walk, or swim, or cycle, or lift weights, or swing a kettlebell, or play badminton, or… something! Prepare for that emergency. It may be a kid in danger, but more likely, it’s the next exacerbation. Whatever it is, it will be in your best interest to be stronger than you are right now. Unless you are my ninja CFit client…she’s already in pretty good shape for the shape that she’s in.
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.
Since the previous post was a bit more serious and sarcastic than I normally get, I need to lighten things up a bit. Laughter is, after all, the best medicine.
I wrote the below post almost 31/2 years ago (wow, time flies), and it occurs to me now that it most definitely should be updated. So I’ll post my thoughts from 2010, at a ripe old age of 49, first and then add my more recent musings and additions with red ink. I hope you enjoy:
I don’t know about you, but I’m getting older. Last I checked, I was well into living my 50th year. Now, nobody has actually ever told me, “Julie, you are not likely to live to be 50,” but having not lived in a cave all of my life, I have received this message loud and clear. So what am I doing here?
Here, for example, are a few random things I hadn’t planned on:
1) Hot flashes and menopause: Isn’t it weird that every time I put on my therapy Vest, I have a hot flash? I don’t think they were designed with this in mind.
You know those people who say, “Oh don’t worry dear, those hot flashes won’t last long.” They are wrong. Dead wrong.
2) Wearing hand me down jeans that used to belong to my son: It’s true. My 12 year old son is now giving me his outgrown jeans…and they are too big. I’m trying to grow into them.
Still working on this…
3) Forgetting whether or not I have actually done pretty important things: Did I take that pill? Did I inhale Advair? ”Honey, did you see me inhale this?” This is truly frightening.
I still haven’t nail this down completely, but I believe I have figured out the pill issue. Each morning I poor every single pill and supplement that I must take throughout the day on the kitchen counter. If, at bedtime, there are remaining pills that I cannot identify, I use them as dog treats.
4) Wondering with fear and fascination what will happen if I actually outlive my disability payment: I don’t think the insurance company was expecting this either.
D-day on this one is in 12 1/2 years, and now I actually have faced the fact that I will probably be a bag lady. The good news is that, for some odd reason, I already have the grocery cart. Don’t ask. Only my son knows for sure why we have one in the back yard.
5) Not being able to see whether the needle is actually going to hit the tip of the Colistin vial: Are they making that bulls-eye smaller, or is it just me?
Hey, I am so good at this now that I can do it while vesting! This must be an example of Malcolm Gladwell’s 10,000 hours to mastery.
6) Getting so used to the ringing in my ears, that is seems like part of the radio background: Oh, the years and years of tobramycin….
I have a new game I play with this. I now have a “floater” in my left eye due to “peripheral viscous detachment” according to my eye doctor. It looks like a little hair with arms, one of which is holding a football (I have spent some time examining this). I see it when I close my eyes if I’m facing bright light and it moves when I move my eyeball. So now, for kicks, I play the “make the hair dance to the ringing” game when I’m bored. I’m going to create an app.
7) Routinely wondering if it is possible to lose one’s colon down the toilet: Ok, this is a bit graphic. I don’t know what the magic number of hours logged will be, but at some point, don’t you think gravity is going to win?
I’m still up on gravity, but barely. Nuff said.
8) Getting too “old” to run (read: low back and knee pains): I thought the lungs were supposed to go first.
This is what actually inspired the update to this post. Now I have an L5-S1 disk that is wandering around where it doesn’t belong, the result being nasty back pain. I didn’t really understand back pain before this. It’s amazing how it can bring one to one’s knees…literally. I now kneel down to cough. This draws some interesting reactions from others, I’ve noticed. This is especially true when I’m out shopping or walking the dog(s). Of course the dogs think it’s a game. Oh…I’m rambling now.
9) Making more cracking and moaning sounds getting out of bed in the am than my 16 yr old border collie as we hobble to the kitchen to make coffee.
Sadly, Cisco died two months after I originally wrote this. Now, I still make the noises and I know he’s hearing me from somewhere, smiling his Border Collie smile, waiting for me to hurry up and get there so I can throw him the frisbee.
10) Wondering if I might outlive yet another dog: I don’t know which to wish for.
Now Cookie is almost 12, and Wiley is 10. Both of them act like they are 3 when they see a cat, so I’m not worried yet. The others (yes there are more) are 9, 7 and 3. It is a lively barnyard and nobody is leaving it soon, including yours truly.
11) Living long enough that those foolish years of laying out in the sun on aluminum foil lathered in baby oil has resulted in my wrinkles having wrinkles: Who knew that shins could get wrinkled?
Let me tell you a little secret: The tops of your FEET can get wrinkles!
12) Needing a screening colonoscopy: Of course, if we wait long enough (see 7 above), we can probably just examine it directly:-)
Well, that happened. No, no, not THAT. I really don’t understand why they bother to make “lemon flavored” GoLytely. Like that could possible make it a pleasant experience?
And now for some brand new 2013 additions:
13) Teaching my son to drive. How can this be? He was just born.
14) This memory thing is getting to be annoying. After packing half the house for a three day weekend trip (most of it medical equipment), I just realized that I forgot to pack nebulizer cups. Kind of hard to do one’s treatment without those, don’t you think? Stupid people tricks like this are becoming more and more frequent.
15) Where did my ability to sleep anywhere, at any time go? I now resemble previous partners who were bothered to the point of insomnia by such little things as ticking watches, dripping faucets at the neighbors’ house, dog lip smacking. I could never understand this before. Now I get it. Electrons spinning piss me off.
16) Receiving invitations to join the AARP on a near weekly basis. This just blows my mind.
17) Having doctors that are literally half my age. This would be kind of cute, if they were Doogie Howser types, but they are not. I am old.
19) Living to see (and take part in) clinical trials of the first of probably a long line of drugs that will work together to correct the basic defect in cystic fibrosis. I really didn’t think I’d see this. But I am living it. Every day, I swallow these miracle pills morning and night, and I think of my sister, Kathy, and my brother, Tom, both stolen from this earth way too early by a horrible disease against which they didn’t have a fighting chance. I think about how lucky I am to have made it this far, and what they would want me to say and do on their behalf.
Here’s what I think they’d say: Yes, luck has something to do with it. For all of you out there who are really, really sick even though you have done everything in your power to stay healthy, don’t blame yourself. Blame this fu&%ing disease, and try as hard as you can to hang in there for a few more years. These meds might just stabilize you and allow you many more years than you think possible. But for those of you who are slacking–who don’t exercise or sleep enough or take ALL of your treatments or prescribed meds–don’t blame bad luck and sit around feeling sorry for yourselves. Victory is just around the corner and THIS IS NO TIME TO BE A SLOUCH.
Note to reader: Neither Kathy nor Tom would have yelled at you while living, however it appears that they have become quite adamant in the afterlife.
Do you ever say to yourself, “I am such a loser! Why can’t I, as the commercial says, Just Do It? If I just had more willpower, more control over myself, I could get this stupid project done!” Or (ahemmm), “Why do I always lose my patience (euphemism) with my kids/spouse/pets right before dinner? I seem to be in such a better mood in the morning.” There is a word for what you are lacking at such times…well, actually there are three words but we are going to ignore two of them–self compassion– for now.
The word that I want to focus on for this post is “willpower.” My definition for willpower is essentially the ability to control yourself and carry out a goal that you have set for yourself. It’s the ability to allow frontal cortex portion of your brain–the executive, decision making part of it–to dominate your mammalian brain, where emotions and basal urges reside. People generally believe that willpower is something you either have or don’t have, much like musical or artistic ability. Of course, possession of willpower is lauded by society, and evidence of the lack of willpower leads to criticism and judgmental frowns of disapproval. The ability to force oneself to study or diligently practice a sport or musical instrument leads to good grades and prowess on the field or stage. We admire people with these skills and we give them rewards (grades, applause, etc.). But when lack of willpower leads to problems such as addiction or obesity or flunking out of school, it is not hard to locate critics.
But thinking deeper about this issue, it is rare for anyone to have self-discipline (willpower) in all aspects of life, just as it is it is pretty hard to find a person with a normal brain who shows absolutely no control whatsoever over their impulses or urges. Willpower just doesn’t work that way. It is easy to think of professional athletes (who are obviously capable of focused, diligent practice or else they wouldn’t be professional athletes), who show absolutely no control in their lives off the field. Similarly, I’ll bet you can think of an award winning actor or two who can’t seem to stay in a marriage! It’s not, “you either have it or you don’t.” Instead, willpower exists in everyone as a finite quantity…you only have so much of it.
Hmmm, Radishes vs. Chocolate Chip Cookies
But don’t take my word for it. There are several well designed scientific studies which prove this point. The more often quoted one involved college students (don’t they all?) divided randomly into two groups. One group of students were told to sit in a room where they could only eat radishes when freshly baked chocolate chip cookies were right next to the bowl of radishes–pure evil on the part of the researchers. The other group could eat all the freshly baked chocolate chip cookies their little hearts desired. The students didn’t know this was a study of willpower. After this torture (for group one students) went on for awhile, each student was given a puzzle to do. The catch was that the puzzle was impossible to complete. Amazingly, the students who got to eat whatever they wanted persisted trying to complete the puzzle over twice as long as the students who ate radishes! Why? Because the radish eaters had exhausted their willpower resources by not eating the damn cookies. Persistence at working a hard puzzle requires willpower, and they had none left.
This study and others like it demonstrate that willpower is a finite quantity that gets used up over the course of a day of self-control. It comes back, don’t worry, but you need to rest after exerting a huge amount of willpower and not immediately tax it again with a task that requires large amounts of self-control. For example, after a day of work, where you are faced with decisions, socially acceptable interactions with others, and the need to focus and produce for long periods of time, it is NOT a good idea to stop at a bar on the way home for happy hour if one of your goals is to lose weight. That free food will be impossible to avoid. The fact is that when you use willpower, you need to rest for awhile before you tax it again, or you are setting yourself up for failure.
Willpower Is A Muscle
Not literally. But the analogy is perfect. In the above scenario, your willpower “muscle” was fried from a daylong “workout” at work. It was cooked and could barely lift its arms to comb its hair. Why would you try to get it to work again (at that bar) without resting it first?
The interesting thing is that, like a muscle, willpower gets stronger and develops greater capacity for work when you build it up with consistent “workouts.” When you set small goals and achieve them daily, you are building your willpower (and your confidence). Then you gradually can set slightly harder goals and grow your willpower capacity over time. This takes persistence, but it also takes patience. It is important to bite off little goals at a time and be successful, taking on slightly harder challenges only when the initial small step is automatic…like brushing your teeth.
What does this have to do with living with CF? A lot. Daily treatment regimens take a ton of willpower to accomplish at first. When I coach someone who barely gets in one treatment a day, and hasn’t seen her Vest since “the move” three years ago, I don’t start by asking her to Vest twice a day and use aerosols three times a day, in addition to starting a daily walking program…even if that is exactly what her CF team is telling her and she knows that is what she should be doing! We start small…one treatment a day consistently, and maybe check in the garage for the missing Vest. If adding a new supplement like NAC three times/day, we might start with one dose/day until that is a no-brainer, then add a second dose, etc. Eventually, as these things become automatic, they don’t require willpower any longer. Now they are entrenched habits, and willpower can be used on something else.
The same rules apply when it comes to fitness goals, especially when you are just starting out, or just starting back after a health setback. Remember, it will take willpower to do all you need to do to regain your health. You’ll need to get back on your treatment regimen, to your own method of airway clearance, to eating well and enough to recover, and to making sure to get enough sleep (especially if they sent you home with IV’s to infuse…often at night). There may not be a ton left over for jumping right back into your 180 lb squat program. A great, and easy, way to start back might be 20 air squats as soon as you wake up. Easy peasy. No weight equipment is required. You can use if/then planning discussed in an earlier post to set up your program. You would write down somewhere, “when I wake up, I will do 20 squats before I get my coffee.” Before you know it, you’ll be back under a barbell and your legs will look less like toothpicks:-)
Willpower is not something you either have or don’t have. We all have it. We also all have the capacity to use it up, and then make less than wise choices if we don’t learn to chill a bit before we challenge it again. Finally, we all have the power to train up our willpower just like we train our muscles.