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T stands for a lot of things this week.  In the original NOTDEADYET acronym, T stood for Thank everyone, everyday, for everything.

But as you’ll see, T also stands for “too late” and now, for “Tom.”  I wrote the following on the flight home, after spending the week with my family following my brother’s death:

TOO LATE

I am very sad to write that my plans for visiting my brother in hospice are not going to be realized.  Tom died last Friday night, a week before I was to go see him.

As the next blog post was scheduled to be concerning gratitude, I’ve decided to write about how much I appreciated Tom.  Too late, perhaps.  But maybe not…maybe he can read these words as I write them.  Who really knows?

Tom was my lunch buddy when I was young.  Back then the terror threat level was much lower, and kids were actually allowed to leave campus for lunch…to go home, to go to the nearby hospital cafeteria, or in my case, to go eat lunch with your big brother.

He was “in between” high school and college and was living at home and working at my father’s monument business, carving and setting tombstones.  I think he knew that I was having a rough time.  I was “Bub,” the young, quiet kid who watched her parents in daily anguish over sick children and their unknown futures.  Going home to a mother who was severely depressed was often not the best option, so Tom was sent to deal with me.

I don’t even remember what we talked about back then (this was forty years ago), but I remember the camaraderie…the company…the understanding.  We both had crabby pancreases (or is it pancrei?), with resulting malabsorption that meant we were always hungry and LOVED to eat.  Neither of us particularly loved the next morning, but we were willing to deal with it.  We would gorge on fried food and mild shakes, then he would bring me back to school and he’d go back to work.  We shared a junk food pact.  It was a “don’t ask, don’t tell” agreement.  No one knew about the Kentucky Fried Chicken and pecan pies except us.

Tom was quiet back then, but I do remember that I could talk to him about my concerns as a kid…a sick kid…with a sick mom.  Ours was a heavy scene at home.  Worry was always the theme of the day.  Tom shared with me the realization that the health issues we (and our sister Kathy) were born with were the major source of the anguish.  Neither of us could do anything about it, and we shared that frustration.

He was quiet back then, and he died a quiet death.  There was no drama.  There was never really any drama around Tom.  He was an amazing source of strength in his silence.  He stuttered along at a lung function that barely supported life for over 10 years, never complaining once.  Whenever I would talk to him, all he wanted to do was turn the subject to me, and how “my CF” was doing.  The last conversation I had with him was over Skype, when he was in the hospice house.  He could see me and I could see him.  I was showing him pictures, and holding my dogs up to the computer to say hi. I (we) got the chance, via technology, to be there without really being there. Even then, when he was clearly dying, he asked how I was, concerned because I had a PICC line for IV antibiotics.  This was Tom.  His focus was always on the other person.  He took care of his friends, needing to be a source of strength, because he knew that this fed his own strength and resilience.

I chastise myself now, because I know my own fear of watching his decline kept me from knowing him better as we grew older.  It scared me to see him get smaller, and weaker, and struggle more and more to simply breathe.  So, I retreated to the safety of denial, 2000 miles away.

Even though I never told him directly, I am forever grateful to this big brother of mine.  He spared me lonely times as a child.  He paved the way for me, living so much longer than anyone ever thought he could, so that I am no longer in doubt that I can do it, too.  He was a gentle giant of a man.  I will miss him.  He is somewhere more comfortable now, hopefully hanging out with Kathy, and I hope he can read these words.

The following is a quote from experts in the field of “Appreciative Inquiry,” a technique used in coaching (as well as other endeavors) which draws on the best of the past to inspire the present and create a better future.

“We see what we look for and we miss much of
what we are not looking for even though it is
there…  Our experience of the world is heavily
influenced by where we place our attention.”
Stavros and Torres

How can we apply this to our quest of living well within the context of a chronic illness?

The challenge in writing about this topic is to not come off sounding like a rose-tinted fluff producer.  Believe me, I understand that a chronic disease brings with it significant struggle, frequent frustration, and unsettling uncertainty.  Sometimes, when someone tells me that I should “look for the positive” in a situation that seems unbearable, I get downright mad. “THERE IS NOTHING POSITIVE HERE,” I want to scream.  In fact, until the initial emotion is confronted and worked through, my visual field can include nothing positive about the situation.  I don’t believe I am alone regarding this.

So step one in looking for the “opportunity” in a health challenge must be confronting and understanding the grief, anger and fear that accompanies illness.  You can’t ignore or look past these valid emotions in order to get to the other side, where opportunity lies.

As I write this, my brother Tom lays in a hospice house in Omaha, Nebraska, where he will spend his last days and weeks before succumbing to cystic fibrosis.  I love my brother more than I can describe.  He has been a role model to me, an example of how a fighting, stubborn spirit can overcome lungs that have been failing him for over a decade.  He has been like the Eveready Bunny for over 10 years, refusing to stop and give up, despite pulmonary function numbers that would cause most people to roll over and die.  Instead, Tom has maintained a job, maintained friendships, and continued to amaze his healthcare team (and family) with his resiliency.

Now that my PICC is out, I am traveling to see Tom in a week, to say good-bye and to tell him how much I love him.  There are obviously a lot of emotions to work through here…I am very sad, and I am very afraid of what I will see when I walk into his room.  But there is absolutely no way of ceasing this opportunity to say good-bye without acknowledging and facing my own fear of looking at Death by CF. I have been letting this fear get in the way of getting close to Tom for years…just as I let it keep me from Kathy when she was ill.  It is the same fear that made me cover my ears and go to the far reaches of the house when I was a young child, and Tom or Kathy was doing a treatment and coughing their brains out.  I have been missing the opportunity of knowing my brother better, because I have let my own fear and sadness cover my heart. This has been a great example of how to not find opportunity in a bad situation…until now.

Fortunately, I see now that the reward of knowing and loving my brother will come with facing this fear, not avoiding it.

Similarly, the reward and opportunity found in any health challenge can only come after living with and through the emotion that accompanies it.

A very interesting study was done in 2002, looking at what made college kids happy(1).  Now, I know what you are thinking.  All college kids are happy!  Why wouldn’t they be?  They have no responsibility.  They get to wake up when they want.  They are free from parental control for the first time in their lives.  And then, there are the fraternity parties…

Not so, apparently.  Using multiple assessments, 222 college kids were divided into groups that were “very happy,” “average,” and “very unhappy.”  Countless studies have of course been done on unhappy people with various psychopathologies, but this was the first to focus on very happy people.  The conclusions were fascinating.

Several variables were assessed, including things like social relationships, personality and psychopathology, the perception of wealth, number of objective positive and negative events they had experienced, grade point average, physical attractiveness (rated by coders by looking at pictures), use of tobacco and alcohol, time spent sleeping, watching television, exercising and participating in religious activities.  All of this data was collected over about 50 days by having the subjects do daily logs.

The researchers were looking for the key(s) to happiness…what variable(s), if any, would be either sufficient or necessary (or both) to put someone in the very happy group?  The term sufficient in this case would mean that all people who had that variable were “very happy.”  Necessary would apply to a variable if virtually every person in the very happy group possessed the variable.  Are you with me?

Now with that very simplified explanation of the study done, on with the results.  Sadly, NONE of the variables evaluated were “sufficient.”  There is no magic key to happiness…at least, not in this study.

However, a few variables were found to be necessary conditions for high happiness…the one that this article is concerned with is that “very happy people have rich and satisfying relationships and spend little time alone relative to average people.”  It also helps to not be neurotic or have much psychopathology (i.e. depression), and to be an extrovert.

Bummer.  So there is nothing magic to do or get that will, by itself, provide happiness.  But, trying to manipulate the variables that are necessary to be happy is a good way to improve your odds, right?  Of the four (lack of neurosis, minimal psychopathology, extroversion, and rich social relationships), the easiest one to work on is the last.

Happiness does not appear to occur without rich social relationships.

Hence, the  “Y” rule in NOTDEADYET.  You are not alone!

So, don’t be a recluse.  Reading blogs and commenting is fun and encouraged (hint), but is not sufficient to build rich personal relationships.  What is necessary is to connect with others…in person.  And this applies even more, I think, to people living with the stress and inconvenience of chronic illness.

When you don’t feel well, it is very easy to hole up and not be social. I get it.  You don’t look your best.  You don’t feel your best.  You don’t have energy to be social.  You don’t want other people to think they need to help you.  It’s just easier to curl up with your dogs and watch Keith Olbermann!

But therein lies the problem.  Hanging out alone keeps you mired in yourself.  It becomes easy to feel sorry for yourself, jealous of others, and just generally pissed off that you don’t feel great.  And there is no one there to tell you differently!  You get no other perspective.

The next question becomes, “How do I just start being social when I’ve never been before?”

It starts with calling someone.  At first, maybe it will just be family members.  Connecting more frequently with them is a great step in the right direction.  Over time, you might be emboldened enough to call a friend to set up a date for coffee or lunch.  Then, maybe you can make a goal to call a different friend once a week.  Then…you get it.  Small steps.  But necessary ones!

1) Diener, E., Seligman, M., (2002). Very Happy People. Psychological Research, 13(1), 81-84.

As promised…

Because I have CF, and a significant number of readers of this blog have CF, I have list CF-specific reasons first.  Multiple reasons that apply to the general population (incuding people with CF) follow.

• When you don’t use your lungs, and I mean really deeply breathe to the point where you might get some odd looks because of your cough, you won’t be as successful in getting the crud out of your airways.  It just helps.  Exercise is heavily advocated in European countries and Canada and is being increasingly so here in the United States.  In 2005, in a paper entitled “Standards of care for patients with cystic fibrosis: a European consensus,” (Kerem, et al; Journal of Cystic Fibrosis 4 (2005) 7 – 26), exercise promotion is specifically listed along with airway clearance, inhalation therapy, and education as specific roles for the CF center physiotherapist.   Supervised in-patient physical exercise is also required for hospital stays (with additional oxygen if needed).  Many centers also mandate  annual exercise testing.  These are standards of care, i.e. they are not optional.  As you probably know the European CF Centers have quite a good track record.  The US CF centers are catching on, and most recommend exercising regularly.  However, the insistence that this is a routine part of CF care is generally lacking here.  This will change.

• While some things, like better lung clearance with exercise, have not been experimentally validated beyond question (it just makes sense), other very important parameters have.  Would you like to slow the decline of your lung function?  I would.  Studies have not all shown improvements in lung function with exercise, but they have consistently shown that regular aerobic exercise (HR of 150 BPM for 20 minutes, 3 times/week) significantly slowed the rate of decline of lung function (Journal of Cystic Fibrosis 4 (2005) 7 – 26).

• Regular cardiovascular exercise increases functional capacity.  This means we can do more with less energy.  Maybe some of you have experienced days when energy isn’t exactly abundant?  This is when increase functional capacity comes in handy.

• A regular exercise program including aerobic exercise diminishes the sensation of air hunger.  Many studies have shown this, both in CF and other types of COPD.  Air hunger sucks.

• Exercise improves appetite.  Therefore, you will eat more.  Therefore, it will be easier to keep weight on.

• Hundreds of studies have shown that exercise improves quality of life, in all people, including those with CF.

• NOT EXERCISING IS A DEPRESSANT! Do you really need something else to bum you out?

• Exercise improves bowel function.  Enough said.

• Weight lifting (resistance) exercise builds muscle mass.  This is true if you are a preadolescent.  This is true if you are 95 years old.  This is true even if your CFTR is messed up.  I know this from my fitness training and from personal experience.  This is ONE very visible aspect of your body that you have a say about!   It’s nice to be normal that way.  Try it!

• Exercise (especially strengthening the back and stretching the front of the torso) will improve posture.  Improved posture can increase the amount of lung volume available for breathing.  This is significant.  You can also reduce back pain.

• Once you get past any initial distress (if you aren’t used to moving), exercising actually feels good!

There are probably more.  These are off the top of my head.  If you can think of more, chime in and add a comment.

Got your attention, didn’t I?
I wish it were that simple, but alas, it does take some planning and some discipline.

The first easy step is to find out why you want to be fit!  How simple.  You don’t even need running shoes for this one.  Take out a sheet of paper and list as many ways  you can come up with to answer the following:
“I want to be fit because…..”
Aim for at least 20 reasons.  If you can’t think of 20, go back to number one, and ask yourself, “Why is that important to me?”  Then do the same for number 2, 3, 4…,
This is an important step, so although you may think it sounds stupid, don’t skip it.  Now scan down your list, and underline the things that matter most to you, not to your doctor, or your parents, or spouse, or friends…just to you.  This is the real list…the one you want to post on your bathroom mirror, or some similar spot where you are sure to see it every day.

The second easy step is to discover what you love to do for exercise.  This may occur as you remember what you loved as a kid playing outside for hours, or it may mean getting brave and trying a few new things.  It doesn’t have to be marathon running or swimming the English Channel.  It just has to be something where you move…and something where, when you want to, you can increase the intensity enough to get your heart rate up and breathe deeply.

The third easy step is to DO IT.  Every day.  Start small…maybe just 5-10 minutes.  But commit to doing something every day (unless you are sick, of course).
I heard a great mantra about this somewhere:

Stand up.  Take a step.  Repeat.

Some days, you may not feel motivated!  Surprise, surprise.  But that happens to everyone.  Don’t let it stop you!  Look at your list from #1, then tell yourself to go out and do a little bit.  Sometimes when I do that, I end up having the best workout ever.

There is no good reason not to do this.  There are so many reasons to do this, that I will make it a separate post.

I am a personal fan of the field of positive psychology.  I love to read about what it is and what it is teaching us about the science of happiness.  I like to take courses and attend conferences about the subject.  In fact, the whole purpose of this blog (and hopefully of a future book) is what the scientific study of positive emotion can teach people with serious health concerns about optimizing their happiness and wellness within the context of illness (hence the title of the blog).

The “D” in my acronym stands for “Discover Your Strengths and Use Them Every Day.”  First, I want to describe why this is important when it comes to happiness.  Then I will show you how to discover your strengths the high tech way (an online resource).  Of course, you could just ask you mother.  Then I’m going to describe a project I am designing for this blog that allows me to use my strengths as an example of putting this “rule” into action.

It used to be that to “improve ourselves,” we were to work on our weaknesses. However, new research shows that living and working from our unique strengths rather than paying attention to deficits creates lasting personal happiness and allows for peak performance. When we identify and further develop our unique talents and character strengths, we contribute more effectively and enjoy the process more.

It makes sense, really.  Imagine that you are doing something that you are really good at, working towards a goal that you strongly believe is important.  In fact, go ahead and close your eyes and remember such a time.  Remember the feeling of mastery and  flow you might have felt during the activity, and the sense of accomplishment when you were finished.

Now remember the last time you struggled to do something that was beyond your skill level.  It was likely something that you were not innately good at, and likely caused great frustration and a feeling of inadequacy.

Clearly, the first situation leads to positive emotion; the latter, not so much.

What are your strengths?  You probably have a good idea without a scientifically designed questionnaire.  But, if you take it, you might be surprised.  I know I was.

In his book, Authentic Happiness, Martin Seligman describes how he and his colleagues came up with the Values In Action (VIA) classification of character strengths. There are 24 character strengths each describing a specific aspect of positive human character. The strengths are grouped into six categories termed virtues. These virtues have been determined cherished among most religious and philosophical traditions.  Collectively, they are said to capture the notion of good character.  The characteristics of character strengths are:

•    They are moral traits and can be developed and strengthened by choice.
•    They are valued for themselves rather than as a means to an end.
•    Using them elevates rather than diminishes others.
•    They are ubiquitous.

We all have the ability to exhibit any of the 24 character strengths but tend to rely on some more than others. The website www.authentichappiness.com offers a free, online survey called the VIA (Values in Action) Signature Strengths Questionnaire, which ranks your strengths in order of importance to you. Your top five strengths are your Signature Strengths.

When I took this questionnaire, I was intrigued by what turned out to be my top five strengths.  I won’t go into them all now, but one that struck me as quite useful for me to have was number two:

Hope, optimism, and future-mindedness
You expect the best in the future, and you work to achieve it. You believe that the future is something that you can control.

Maybe that has something to do with why I have done so well (so far) even though I have cystic fibrosis.

I love to do projects…especially projects related to either learning something, or achieving an athletic goal.  I love to set a goal, and then plan my strategy to achieve it.  I am now, and always have been, very goal oriented.  Goals excite me…they challenge me, and bring out the same self-discipline that carried me through medical school.

Not surprisingly, I was a sucker for the P90X home exercise program this spring, and have written about that experience and the unexpected results in a previous post, “How I Grew a New Lung in 90 Days.”  Now that I have a PICC in for IV antibiotics again, I am already starting to plan for the next round of “get Julie back in shape”.  And, now that I have this blog, I am going to post what I do and how it felt each day.  Why?  So that if any of you are interested in joining me, you can do so, and we can motivate each other!  The best thing about a blog is that it allows comments…both to and from the blogger.

So, if you want to join me, the start date is Monday, September 29.  This will be a three-month program (unless my lungs say differently).  I am creating a program that merges the P90X program with a weight-training regimen I have done in the past to successfully gain muscle mass.  There will be six exercise sessions per week with one rest day.  Each session will take about an hour…except on ab days (ouch).  You will go at your own pace, but I will recommend a given “perceived exertion level.”

The equipment needed is: you, water, supportive athletic shoes, some light free weights, and a chin up bar.  If you can, buy the P90X program.  I will use their aerobic and ab routines because they are great!  Also, if you don’t want to go to a gym, you can do the weight training sessions with just the above equipment.  The program I am doing is a modified P90X because I love going to the gym and lifting heavier weights.  The P90X weight workouts are good, and if you do them, you will definitely get stronger.  I just need to atmosphere of my gym, and want to use heavier weights because I have some significant strength to regain.

Are you game?

A post from the hospital:

Last week, I was admitted to the hospital to get a central line placed for a course of home IV antibiotics. I was in for two days…not bad, really. The only reason I had to be admitted was because in order to get it put in as an outpatient, I would have had to wait two weeks. Not good when you need antibiotics. The experience was SO different from the one I had last winter because I actually didn’t feel sick this time My PFT’s were significantly down though, and it seemed like a good thing to do. In fact, it was kind of comical. Below are some of my observations, which I had been diligently jotting down:

First, if you really want to confuse nurses, go into the hospital relatively healthy. Bless their hearts, the poor things don’t know what to do with you! I was bopping around the nurses station, asking if I could go find a coke machine my first afternoon, and the look of pure incredulity I received was priceless. I couldn’t help it…I had asked for a coke at 2:00, and by 4:30, I was getting really thirsty! They told me that “my doctor didn’t write an order that would allow me to ambulate” (I so love that word). I told them, “Well, I’m a doctor. Can I write the order? Clearly, I am capable of walking…even without an order.” They weren’t amused, but they did go raid the staff refrigerator and get a coke for me.

When the fifth year medical student from Stanford came in, I was in a feisty mood, so I didn’t tell him that I was a doctor at first. He was taking the usual exhaustive history that you take when you are on the wards for the first couple of years. A typical dialogue is below. I have changed the name of the med student because he was very nice and I liked him…green as he was…to “Doogy Howser” because I swear he was the spitting image. It goes like this:

Doogy, ascertaining the chief complain (cc): “So, tell me why you’re here?”
Me: “I have CF.”
Doogy, digging deeper: “Well, tell me how your last couple of days have gone?”
Me: “Pretty well. I went running this morning.”
Doogy, confused: So…why do you need antibiotics?”
Me: “My doctor said so.” And on it went for awhile. Then I felt bad, and started to be nicer, answering all of his questions with a smile. He got back at me though, I found out the next morning when the nurse came in with my meds.
First, she tried to give me a shot of sub-cutaneous heparin. I said, a bit bewildered, “I don’t need that.” I’m not sure anyone has turned her down before. She looked sad.
It turns out that if you are in the hospital, they assume you are bed-ridden (imagine that) and need to be guarded against blood clots. She apparently hadn’t seen me do my yoga routine earlier.
Then came the stool softener and the Prilosec. If you even get close to a hospital, you get a stool softener and a Prilosec. Try it. Drive by, and see what happens.

When the PICC nurse couldn’t get the line in the next morning, I had to go to interventional radiology. This was quite a treat, because they have very cool imaging in radiology that you get to watch…in real time. So, after I got over the humiliation of riding in a wheelchair (the RULE…there are a lot of RULES), when I could have taken the stairs at a run, and beat the transport person taking the elevator, I hopped up on the table and asked if I could watch the line snake its way from my elbow to my heart. That was definitely the highlight of the visit for me.

The weird thing was, after the line was placed successfully, I had to wait to show them that I knew how to give myself the antibiotic. Now this RULE was really annoying, but humorous nonetheless. I’ve probably given myself IV infusions 600-700 times (rough estimate) but I had to prove my prowess.

Finally, at about 5:30, I was informed that my meds had been delivered from the central pharmacy, but I had to wait while they changed the labels…don’t even ask…another RULE. Then the call came, the drugs were ready. Do you think I got to go get them and leave? Nope…had to wait for transport again. This time, I drew the line. I walked to the pharmacy, next to transport. We had a nice chat.

There are two parts to this rule and neither is easy:

First, the accept what you cannot change part is something I have thought about ever since I was a young kid, and had the serenity prayer posted on the hallway wall of our house.  It was a pretty appropriate prayer for our house.  Three kids with CF was no picnic for my parents, nor for my healthy siblings.  Sometimes, I wonder if it was actually easier for the three of us who had the dang disease.  At least we didn’t feel guilty.

But it was always hard for me then, and occasionally still is, to parse out the difference between what was unchangeable and what was not.  Certainly, I can’t change my genotype.  But (being a nerd) I’ve been doing a lot of reading lately about a phenomenon called “epigenetics.”  Basically, it negates much of what I learned at Stanford Medical School over 20 years ago.  We learned that a gene led to a protein, period.  One gene, one protein.  If the gene was messed up…well…I was a perfect example.

But epigenetics says no, a gene is a recipe, a code…nothing else.  How the recipe gets “cooked” depends very much on the cellular environment in which it resides.  Nutrition, oxidative stress, hormones, hydration, “good” stress such as exercise, social connections…the whole catastrophe…all heavily influence how genes eventually lead to a protein, and then how these proteins affect health.

Ok, I didn’t really consternate too much about epigenetics as a kid.  That’s a more recent development.  Back then, I just didn’t like the whole “wisdom to know the difference” thing.  How was I supposed to know?  Obviously, now I really KNOW I don’t have the wisdom to know the difference.  It seems to get more confusing as I get older.

Here is where I have ended up, though, and I have a real life example to illustrate my conclusions.  In an earlier post, I reported that my PFT’s have suddenly, and for no apparent reason, had taken a dive.  I just had them rechecked, and the results were the same.  So…let’s do the serenity thing:

“Accept what I cannot change.”  My lungs are not working as well as they did 6 months ago.  That’s just a fact.  I could get mad…or depressed..or anxious, or, the worst option, I could worry and wonder if I did something wrong?  I could review how I could have done things differently…maybe I should have noticed that I was coughing up more starting several weeks ago.  Notice that all of these things focus on looking back in time.  Anger results from comparing my current 60% to the 80-something% of March.  Depression results from looking at the drop from then to now, worry and anxiety results from wondering if I messed up somehow.  So for me, “accepting what I cannot change” means “forget the past”.  It’s over.  Done.

Part two of the serenity prayer, “change the things I can,” is covered in other parts of the acronym already described (Notice, Only, Take, Decide, Engage), and more will follow.  “Wisdom to know the difference?”…well, maybe it’s evolving as I type.  Who knows?

Now, for the second part of the rule (I just now decided these were rules because I don’t know what else to call them).  Don’t be a victim.  Why not?  I mean, all the books describe us as “victims of CF!”  Why can’t we be victims?

Because victims are not masters of their lives.  Victims have little say in what happens to them.  Victims accept no blame, but they also can’t claim any victory.  In short, victims are wimps.

That is why.

Engage Fully In Life

What do I mean by “engage” fully?

I mean two things, actually.  Both are ways of connecting with life in a particular way.  Both of these concepts are discussed more and more frequently in the last few years.  Just about every course I take, or book I read about happiness discuss these ideas.  I discuss them together because, to me, they seem very related.

The first way to better engage in life is with “mindfulness.” Jon Kabat-Zinn is a big name in the world of mindfulness.  He very successfully introduced mindfulness (an Westernized offshoot of Vipassana meditation) in a Stress Reduction Clinic at the University of Massachusetts Medical School, and his course has since been taught in hospitals, schools, churches and community centers throughout the country.  He defines mindfulness as “paying attention in a particular way; on purpose, in the present moment.”

Have you ever looked back on a day (or, in my case, a week or even a month) and not really remember any specific thing that happened?  I don’t mean this in a memory impairment kind of way, but more like everything sort of takes on a shade of gray…nothing stands out.  When this happens to me, it is as if I am on autopilot…either from boredom, or from overwhelm trying to fit way too much to do into a short amount of time, with the result that it seems I don’t have time to pay attention.

Does this sound familiar?  Lately, I’ve been suffering the consequences of taking on way too much.  I am not good at realizing my limits and knowing when to say no… to requests, opportunities, self-imposed challenges, etc…  The result is that my kids start school tomorrow, and I don’t remember much of summer.  It’s gone…and I don’t know where it went.  It’s not that we didn’t do fun things. We did.  But I had so much else on my mind––the deadline for an editing project, the appointments to fit in for a project I should never have taken on, the appointments and calls for another project, the blog project, the video project, the e-book project, my aging and ailing dog, my own health care, my own fitness goals…it really goes on and on.  I get tired thinking of it.  Sadly, I can’t say that I am completely enjoying and engaging in any one thing, because too much else is always on my mind.

Mindfulness is about paying attention to one thing only…the breath…the feeling of your heartbeat…the taste of a grape…the feel of your dog’s nose.  You get the picture.  It’s about focusing, and not being carried away by the incessant thinking that is always trying to get attention.  When you are able to be more mindful, even for a few moments at a time, you begin to see what you are missing by listening and being carried away by that voice in your head.

So I’m not doing so well at mindfulness right now, except that I am now mindful of my mindlessness.  As they say, admitting there is a problem is the first step toward fixing it.

The second approach to becoming more engaged in life is by finding “flow,” or being “in the zone.” This occurs when you are so immersed and focused on what you are doing, that time disappears…indeed…you disappear.  An athlete can easily relate to this concept; but in truth, we all have the ability to find flow.  Flow occurs when your skill doing something you love is equally matched by the challenge in front of you.  If you love to play chess and you are very good at it, the chances are not great that you will experience flow until you play someone of equal caliber.  Then again, if you love chess, but you are horrible, you won’t be in flow when you challenge a pro and are thoroughly trounced.

I’ve experienced flow reading pathology slides, reading something challenging, studying for exams and sometimes even taking exams!  These days, I mostly find it when I write…and sometimes when I am lifting weights.  You know you are in flow when the sense of time disappears, and when you are completely energized by what you are doing.

My goal is to experience mindful flow.  Now that would be a kick!

One of the most influential books I ever read was Victor Frankl’s “Man’s Search for Meaning.” So much can be gleaned from this masterpiece, but one of my favorite lines has to do with the “choice” of what and how to think.  As Frankl writes from the concentration camp in which he was a prisoner, “Everything can be taken from a man but …the last of the human freedoms - to choose one’s attitude in any given set of circumstances, to choose one’s own way.”  Indeed, everything was taken from him and his fellow prisoners as they lived through unthinkable suffering at the hands of the Nazis.  And yet, his choice was to not only live through the experience with grace and dignity, but to describe an entirely unique therapeutic method of finding meaning and a reason to live.

It’s a bit of a stretch, but perhaps it can be useful to compare living with a severe chronic disease with living in a concentration camp…at least this might work with the chronic diseases that are not self imposed, that cause pain and suffering, and that end in death.  Extrapolating Frankl’s quote to chronic diseases such as these would be something like, “Every part of health can be taken from a person except the choice of how he/she will respond to the situation.”

Yesterday, I had an “opportunity” to try out this tip.  As many of you probably know, the experience of going in for “routine” pulmonary function testing can be quite anxiety provoking for someone with CF.   It’s just a number…a measly “percentage of predicted”…. but that FEV1 result (the volume of air you can blow out in one second) carries with it amazing psychological power.  It’s no wonder, really.  Doctors use it to gauge how much of your lung tissue is still useful.  A sudden drop will land you in the hospital faster than you can say “pseudomonas.”  Transplantation becomes a dinner table topic when it drops to around 30%.  The progressive nature of CF dictates that it doesn’t improve much really (unless it drops acutely due to an infection that is then  treated successfully).  Over the long haul…it only drops.  We all just pray that it drops VERY slowly.  We worry about it.  Some lose sleep over it.  The kicker is that we have virtually no control over how well we do.

So yesterday, as part of a clinical trial I am volunteering for, I went in to Stanford for my baseline exam, and of course, spirometry was done.  I was a bit nervous about it, because the previous time I had been tested, I did so well that I didn’t believe it (see previous post).  My hope was that I would do as well this time, but deep down, I didn’t believe I would.  I would then have to accept that the previous measurement was a fluke (and I really didn’t grow a new lung in 90 days).

My nervousness turned out to be justified.  In fact, I was a good 25% below that previous unbelievable number.  Worse, I was 10% below the baseline I had been at for years.  The maddening part is that I had no idea why my numbers were down.  Not being artificially high, I could handle.  10% down made no sense.  I didn’t feel sick.  I had been coughing a bit more…but not that much.  I was bummed, and my research nurse friends knew it.  It was all I could do not to cry right then and there.

Driving home, I had a tiny epiphany.   I had already started this post.  In fact, I was stuck at comparing disease to concentration camps.  Suddenly, I knew that the “universe” had just presented me with a way to finish my article.  I realized I needed to “decide” how to think about this new development, and what to do about it.

Guess what I decided to do?  That’s right.  I went directly to the gym.  I did not pass GO.   I did not collect $200.  I hopped on a treadmill and ran intervals.  I proved to myself that a number was a number, and what mattered was how I felt.  And I felt great on that treadmill!  Then I lifted weights.  Then I decided that for the rest of the day, I wasn’t going to think about it…period.  And I didn’t.  I got busy working on a project and busied myself doing what I love to do.

The next day, when I was calm enough to be rational, I came up with a plan.  I will have to repeat my PFT’s next week when I go in for my quarterly appointment, so I’m not going to overreact.  If my numbers are truly down as much as it appears, I will talk to my doctor and get his input.  Maybe I will need some sort of intervention, maybe not.  What I do know is that I need to go back to the P90X program (or something equally intense).  It seemed to work before, so this would be a good chance to recreate my previous success.

What I will not do is panic and let fear cloud my decision making.  The worse case scenario is that I have a new baseline. If this is the case, I will choose to respond rationally.