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.
A few days ago, I uploaded the above video to YouTube. I think posture is an incredibly important thing to think about when living with a pulmonary disease, so I thought it deserved a blog post.
Think about it: When you have cystic fibrosis, or any other pulmonary disease, every single alveolus is precious (“alveolus” is medical speak for the tiny little air sac that, together with it’s millions of comrades, comprise the lung and allow for oxygen exchange–I like to think like a doctor sometimes).
As we get older, (happily, we all are now, aren’t we) there are two forces working against our lungs–gravity, and CF. We tend to think that we have little control over either, but we do! I write all the time about how we can positively influence our health by controlling what we can about CF. We can do our treatments. We can eat nutritiously. We can exercise religiously. We can get enough sleep. We can make sure we go to all of our clinic appointments….etc.
Today, my focus is on how to control gravity! Really.
Now mind you, I like gravity. It does many very positive things! It would be quite a chore to sit here and type without the assistance of gravity. But, gravity can wreak havoc on your body if you don’t learn to use it properly.
Our bodies were designed by a genius(es…who knows?). The bottom line is that our bones, muscles, tendons and ligaments all start out aligned to oppose gravity perfectly…until we screw it up. As I sit and type right now, my shoulders are rounded, my upper back is hunched over my computer, and my chin is jutted out over my chest. I know that’s sort of a scary image, but stick with me here.
Look around. Isn’t just about everyone assuming that position? It doesn’t just happen when typing or sitting at a computer all day. We gravitate unconsciously to this position when we play video games (watch your kids do this for a good shock), when we drive, when we play poker, when we slouch on the couch, you name it. It happens as we rush from one thing to the next. Isn’t your chin usually the first thing to enter the room? There are opportunities for this posture all day long! Over time–and not that much time– our default position consists of forward rounded shoulders, hunched over upper backs, and forward jutting chins. Compensating for all of this often comes a sway-back position of the lumbar spine. Suddenly, gravity is our arch enemy.
When you throw your body into this position, the muscles, ligaments and tendons of your back and neck HAVE to work overtime to simply keep you upright. These poor muscles become chronically overworked…and they let you know it. Slowly, the muscles of your upper back become stretched to a position that is not optimal, and they are thus weakened. At the same time, the muscles of the front of your shoulders and chest, low back and hip flexors (remember that sway back thing?) becomes tight and shorter than their optimal length, thus weakened. So, front and back muscles are weak, and working over time to keep you from falling on your face.
Ok, now throw in a chronic cough. Does your back and chest wall go into spasm just thinking about this? Now you understand REASON ONE for establishing good posture when you have CF.
Now for REASON TWO: Conjure up that image again, the one of the rounded shoulders, and slumped upper back. Do you think it is possible to take a full breath using all available lung tissue when in this position? Not a chance. You can use most of your upper lungs when you are collapsed that way.
It is estimated that poor posture can rob you of __% of lung tissue. Now, I don’t know about you, but I need every bit of my lung tissue with every breath I take. I can’t afford the improper effects of gravity1
So watch the video, and try to incorporate at least one or two of these exercises every day. They aren’t hard, and they don’t take much time. They will slowly work to strengthen and shorten those overstretched back muscles, and stretch and strengthen those tight chest and shoulder muscles. The result will be that you will be able to pull your shoulder blades back and down, thus opening your chest and allowing for full expansion of your lungs.
The next trick will be actually remembering to do this! I have some tricks for this, too. Watch for my “mindful breathing intervals” in a blog post coming to you soon!
Here we go with letter ONE of the soon-to-be-famous acronym:
As I was lying flat on my back on the floor writhing in pain while trying not to move, I was wracking my brain trying to use this rule just this morning! Eventually, it worked…but let me digress a bit.
As soon as I stood up from my “first thing in the morning” duty, the first of the bullets hit my back. Seriously, it felt like a bullet, or what I imagine a bullet would feel like. An unbelievably sharp, searing pain behind my left shoulder blade had me doubled over, screaming so loud my schnauzer came running…I’m sure he thought I was going to feed him some fresh kill. For a couple of minutes, I was truly afraid to breathe. I knew it was a muscle spasm. I have them occasionally, and once you have one, you remember it for the rest of your life.
So I stood there, sort of hunched over…wondering what to do. My right hand assistants this morning included Wiley, the aforementioned schnauzer, and Cisco, my 13-year-old Border Collie, who needs someone to hold his rear end in a sling in order to move. Not good. No humans, and the phone miles away.
Two more piercing gunshots later, I managed to lie down on the floor next to Cisco. He dozed (I don’t think he even knew I was there), while Wiley enjoyed the salty tears on my face, ecstatic that I wanted to play this new game of lying down at his level.
I tried to relax, because I knew that stress did not do good things for the executive function of my cerebral cortex, and I was in dire need of some direction…from somewhere. My partner was 75 miles away, at work. My kids were with their other mom. The neighbors were out of hearing range…besides; I knew if I yelled, it would spasm again. I tried to visualize my left rhomboid muscle letting go of its fixed grasp…but to no avail. Instead, it seemed like it had convinced all of my other back muscles to join in the spasm party.
Then I thought, “Ok, Julie, maybe this is a test for your theory. What does work right now?”
“Not much,” I answered myself. “I sure wish I had a tennis ball to roll on…that would help. Wiley. Go get me a tennis ball!”
Blank look. Have you seen “America’s Greatest Dog? Beacon, the white schnauzer on that show is a spitting image of Wiley…that’s the blank look I’m talking about.
So that wasn’t going to work. I knew I needed medication and ice…and the only way I was going to get it was to bear unbearable pain. What DID work, I decided, was my will.
My will has taken me through some serious stuff… even pain. I knew I wouldn’t die – it would just feel like I was dying. So, very slowly, I rolled onto my left side, imagining my left arm was glued to my side, so that my shoulder girdle would NOT move.
OK, that worked. Then to my feet and over to the Tylenol with codeine…and Advil…then to the ice pack…then to the phone. I shuffled like I was 80, and I felt more like 90. Finally, I made it to the recliner chair, where I collapsed.
LESSON ONE ABOUT “NOTICE WHAT WORKS”
First, “what still works” might not be immediately evident. Had I not come to peaceful terms with lying on the ground, unclear how I was going to get up, and relaxed…well, I’d probably still be there. Sometimes, to get clarity, you have to do whatever it takes to relax so that your brain can function again. In my case, I let Wiley kiss me until his tongue was depleted of ATP. It sort of tickled, and got me out of my “poor me…no one is here to find me…I’ll probably die like this…the neighbors will call because of a bad smell…it’ll probably be on the news…” funk.
Second, most of my body was willing to give “getting up” a try! I think this can be extrapolated to making some “positive” lifestyle changes when “part” of your body is less than perfect. So maybe your lungs don’t work so well. I bet your legs will take you for a walk. Maybe you are undergoing chemotherapy, and have absolutely NO energy. I bet connecting with your spiritual self is possible. Maybe you need to lose over 100 lbs and have no idea where to start. I bet that you can do some reading about starting a walking program, and cut soda from your diet.
The bottom line: There is always something that still works…and there is always something that you can do!
Since this blog is a prologue to a book idea, I think it is appropriate that I lay out my idea in a series of short entries. So here it is.
This came to me at 12:30 pm one night when I could not sleep. I had been brewing an idea for a membership website which would be a place where people with a chronic illness could hang out to get support, ideas, coaching, and other products that would help them to live as healthfully as possible. While on vacation with me, a friend suggested jokingly that a good name might be “notdeadyet.com.” Of course, everyone laughed at the absurdity of such a name, but apparently, it stuck in my subconscious mind.
So that night the idea hit me like a gale force wind. Notdeadyet is not a website name…for so many reasons. I’ll let you figure those out.
But, perhaps, it is an acronym! I sat up immediately and took out my journal. Each letter in the acronym began a phrase that summed up what I have learned (through living with CF, being a physician, coaching others, and studying positive psychology) about being HAPPY while being SICK.
The weird thing was…I didn’t even really think. These phrases just sort of came to me…quickly. I had to write them immediately because I was afraid I would forget them (there is a precedent for this, trust me).
It was clear – Sick and Happy was the title (or at least the main part of it), and each of the chapters was going to cover one of the phrases, delineated by the acronym N O T D E A D Y E T.
And here they are…virtual drum roll please:
Notice what your body still can do, and take pleasure and pride in those things.
Only eat, drink, say and think healthy food, drink, words, and thoughts (i.e. cut out the crap).
Take complete control and responsibility for everything you can.
Decide how you will think and act.
Engage fully in life.
Accept what you cannot change without becoming a victim.
Discover your strengths and use them every day.
You are not alone – connect with others and give and receive support.
Envision the meaning of and opportunities found within your illness.
Thank everyone for everything.
My next 10 posts will go into more detail about each phrase, so come on back.
Pretty much everyone I have told about this idea says that I absolutely CANNOT use the word dead anywhere in this book. I would appreciate your feedback. It’s a joke, of course. But is it too morbid???
I get asked frequently, “how do you stay so healthy?” It’s a good question, really, because here at am, almost 48 years old, training for a half-marathon with a disease that kills half of its victims by age 37…of lung failure, usually. It’s a rather morbid subject, because it forces me to think what might have been, and could still be. I don’t fully understand why my cystic fibrosis has been so easy on me compared to most others, and I doubt that I ever will. I just keep on going as best as I can, and hope that my luck continues.
Cystic fibrosis shares much in common with other illnesses that are life-long; therefore, I think what I have learned along the way about staying healthy–regardless–may be of value to many other people, even those with health issues that are different from mine.
I have five very practical rules that have been evolving over the years. They have kept me healthy through medical school, through psychological traumas of loss of a sister and divorce, through mothering two boys largely on my own, through retirement from medicine and the loss that it brought, and through the start of a second career. I’ve definitely been through my medical ups and downs…but, as the song says, “I get knocked down, but I get up again!”
Here is how:
Rule #1 is simple: Don’t look back, and don’t project into the future. Stay right here, right now.
I hate thinking about the future, and I avoid it at all costs! This can actually be a problem, because I often fail to communicate my plans (for the future) to key players in my life. I can even forget to look at my planner, which is not good when your career is largely through telephone appointments. But these are small costs to pay, when I consider the anxiety I would feel if I dwelled on future plans and the “what ifs” that could ruin them. What a way to spoil a good day!
I fully embrace Eckhart Tolle, and his book, “The Power of Now.” It has lead to my mantra of “now is all I have.” As my son quoted the other day from the movie Kung Fu Panda, “the past is history, the future is a mystery, and the present is a gift…that’s why it’s called a present!” It’s so true, yet so hard to remember sometimes. I work at this ALL the time.
Is this too simple and too obvious to embrace? Try it for an hour or so, and see first, how hard it is, and, second, how good it feels. Even if you are in pain, my guess is that the physical pain is less than the psychological pain and fear that comes with dreading what the future might bring.
Rule #2: Exercise every day (unless you are sick, of course). This has been my rule since college. It will be my rule until the day I die. I always have found a way to do this…even through medical school (which I still can’t believe I did…when I look back on it). Now, when I preach this, I hear a lot of “yeah, buts…” “Yeah, that’s easy for you to do…but I don’t have time.” Or, “Yeah, but I just don’t have any energy…this (name of disease here) is just too draining.” Or, “It hurts too much.” Or, “I don’t dare…what if my (fill in the blank) gets worse by the stress?” Yada yada yada
I am not a sympathetic soul about this one. You don’t have to go out and run 10 miles. You don’t have to bench press your weight 10 times. You don’t even have to work that hard. You just have to move. We have evolved to move…even if our bodies are not perfect, they are still better off in every imaginable way when we move…just a little (30 minutes)…every day. As we say in our Cystic Fibrosis Exercise Pilot Program at Stanford, “If you can breathe, you can exercise.”
Rule #3: Laugh every day. Now sometimes this one is tough, I know. I can remember a few days where I slipped up here. It’s easier if you have family or friends around, of course. You may have to change the topic to something light-hearted if everyone else is crabby, but this is doable. What is harder is laughing when you are alone. Ellen Degeneres helps me with this one. I can’t keep a straight face when I watch her…it’s impossible. Or sometimes I’ll just watch my dogs play and that will work. A funny book or a stupid sitcom might do it for you. Just find a way.
Rule #4: This one is going to sound very “rose-tinted.” I apologize in advance.
When you have dealt with the reality of your illness and have come to accept that it is with you for life…when you have grieved for an appropriate amount of time (this is variable, of course) for whatever you have lost as a result of being ill …when you are done with these essential things—it is time to find the opportunity.
There is at least one opportunity that is only present as a result of your illness. There are probably several. It may take awhile for them to present themselves, but they are there if you are open to receiving them.
There are many, but the greatest opportunity that having cystic fibrosis has given me is the clarity of knowing that I am not my body, nor am I anything that is wrong with my body. Maybe (hopefully) I would have eventually realized that in a healthy body, but it would have come much later in life (probably when I got old and sick☺). This has enriched my life in ways I cannot really describe, and it came to me because I was defective somewhere on both of my seventh chromosomes.
Rule #5: Find your passion in life, and make sure you engage in it as many days, in as many ways, as you can. Yes, sometimes we need to do boring jobs to keep food on the table, but there are still many hours left in the day when the work is done, or when the weekend comes. One of my passions is writing…usually about health and wellness, and this blog is the result. So even if you hate this material, it is doing someone some good…me.
So that’s it. If you read it over, these are basically good, old-fashioned ways of staying happy. Being present, being active, finding humor, finding meaning, and living with passion all have one thing in common…they make for an abundance of positive emotion. And that, in my opinion, leads to optimal health, no matter what body in which you reside.