What wasn’t normal was that Stanford, the defending national champions, lost. They lost to a very good team, Texas, which was well coached and played aggressive and stifling defense. Stanford looked stale. They couldn’t seem to get going, turning the ball over over and over and unable to hit the usual plethora of three point shots. I was sad for them, because it definitely put a pall on the ceremony held directly after the game, where the fans who stayed got to witness and celebrate last year’s team.

But this article isn’t about basketball. It was the Texas team’s day, not Stanford’s. It’s over, and I’m sure Tara VanDerveer will use the lessons learned from the game to make her team better.

What surprised me (sort of) was all of the rather harsh judgements that abound, not only about the coach and her decision making, but about 18 to 22 year old kids and how they should be ‘better.’ I’m not judging the fans…they are no more in control of their emotions and thoughts than the kids are in charge of how the game is going to play out. But it is fascinating to watch, especially the rumination about who got to play what position and who couldn’t hit their free throws and who didn’t have the best game of their (short) career.

Why do humans do this? The reactions to the game itself is just a tiny microcosm of how we react to the way life itself plays out. It is one hundred percent, always, without fail, never-not-true that looking back is always much, much more clear than reacting in the moment to what is happening. And when we have feelings that we don’t like (like the sadness when our team loses), it seems to be a human reflex to need to find someone to blame. Someone has to be responsible for life not going the way we wanted it to go. It’s the coach’s fault or that of a particular player if we are talking basketball. But when it is life that goes against our wishes, it is my partner, or my kid, or the President, or the idiotic ‘other’ political party, or the fill-in-the-blank. It is always the ‘other.’

Unless it is perceived that ‘I’ am responsible in some way. Then the feeling is not blame, but instead, guilt. This is an equally futile reaction to something that has already happened and is ‘in the can.’

Why do we blame, either the ‘other’ or ourself? Well I am no expert, nor am I immune to this seemingly reflexive human behavior. But I suspect that ascribing a cause, or a source, that explains a painful experience gives us a semblance of control. If we believe that we ‘know’ what caused something painful, then we probably unconsciously believe that we can prevent it from happening again in the future. Of course, this feels much better than believing that life is just a random unfolding that happens ‘to’ us.

The fallacy is believing in control. This I do think I understand now. I have never once, in 61 years of life, been in complete control of anything I have done. I know this with certainty.

Let’s start with the obvious things: I didn’t control being born in a body with a disease. Heck, I didn’t control being born, period. Nor did I have any say about what family I was born into, nor what country, state or time in history in which I arrived. I never once had a say in how I was conditioned by my family, friends, and educational system to behave in certain ways, to believe in certain things, or value some things over others. I was shaped by all of the experiences that have occurred to me over the years.

I can hear the objections. “But what about free will? Certainly you make decisions about what to do! People can always decide to make a better decision, right?”

Can they? If they could, wouldn’t they have done so? A ‘decision’ is a thought, right? Do you control your thoughts? I don’t, and never have. They simply happen. There is no ‘julie’ in the pilot seat of my brain that says, “Let’s throw her this one. No, no, not that one, this one.” If such a “julie” existed, then why would I ever have anything other than positive thoughts? Why couldn’t I start and stop thinking on a dime? Why wouldn’t I always have brilliant ideas? One thing my meditation training has taught me in no uncertain terms is that I am not in control of my thoughts. Nobody is in control up there. It’s a mad house.

The thoughts I think are usually just repetitious thoughts about the same things, over and over, and most of the time are thoughts that someone else had and then told me. My thoughts have been conditioned by life, in the form of other people. Even the thoughts that I’m spewing out right now via this keyboard have been conditioned by the thinking of others, teachers and meditation masters that for some reason, I have an interest in listening to.

Which brings me to ‘other’ people. If I have never controlled my thoughts, and by extension, my actions, then how can I believe that this is not true of everyone?

Why didn’t Tara play the sophomore point guard? Why didn’t she play any of the fabulous new freshmen? Why couldn’t anyone hit a three point shot? Why did they miss so many free throws? Who freaking knows? How could anyone completely understand all of the falling dominos that led to the outcome of losing to Texas?

But clearly, this idea applies to much more important things than a basketball game. What does it feel like to understand that there really is no ‘controller?’ It is a state of mind that I can only describe as radically free, and amazingly peaceful.

Now imagine that sound is being emitted from a person you love so deeply that you can actually feel the wetness as if it is your own. This was my experience from the bedroom adjacent to the one where Kathy lay sleeping in her mist tent. The ‘mist tent’ was a concoction thought to be useful for kids with CF to sleep within at night. The idea was that by breathing in air moistened with water and a particular mucolytic that smelled of rotten eggs, the secretions in the lungs that were blocking passage of air would thin out and be easier to expel. A literal ‘tent’ of clear plastic was draped over the bed of the imprisoned sleeper, and a nebulizer was used to inject the therapeutic mist under the tent all through the night.

Both Kathy and Tom were subjected to this as they were growing up before it was understood that this did little to help the cause. In fact, the whole thing was a source of contamination by bacteria that love moist environments, and also happen to be the type of bacteria that tend to colonize the CF lung and lead to devastating infection. I’m not sure how I escaped this particular form of incarceration. Probably it was because as a small child my lungs were not yet overtly showing symptoms of the disease. I didn’t yet have that wet, revolting sound emanating from my still-innocent chest. My ‘childhood’ CF consisted of daily stomach aches and hours on the toilet, sitting amidst an odor that was reviling to a different sense channel.

At night while trying to fall asleep, I would hear her gagging in the next room. It seemed the actual sensation of the cough was coming from my own body as it lay still, trying not to listen but unable to hear anything else. I would try various methods of locating silence, but nothing worked. The best I could do was to cover my ears with my hands, only muffling the details of the offending sounds slightly.

Of course, as a five or six year old child, when your mind tells you that a quality of someone you love intensely is abhorrent, there is nothing to feel but primordial shame. How could I feel this about my own sister? There was something terribly wrong, something wicked about myself that I could absolutely not tell anyone. This was a character flaw that somehow I had to disown, or else how could I even look at myself in the mirror? How could I not but gaze upon that skinny little body with its pot belly and see that it was destined to this same fate as my sister’s and hate it. This body suffered the same fundamental flaw, and there was no getting around this fact.

Really, the only way to tolerate this amount of shame and guilt is to figure out a way to wrangle some kind of control over the body that looked back at me. And of course, to try with all my might to fix her. Fixing her became a passion that would eventually lead me to the gym day after day, to medical school, to the microscope, to therapy, to every complementary medical book I could find in every bookstore I visited. Fortunately, it finally lead me to a meditation practice which has paid off in too many ways to enumerate.

But as an elementary school aged child, there was really only one method of feeling in control of my life, and that was to be the best little elementary school child the world has ever seen. This meant to receive nothing but perfect grades in every subject, and to receive the Presidential fitness award each and every year. This is what a perfect student must do, and it became a matter of life and death that I not fail. Of course this created a constant state of anxiety because this attempted perfection was a house of cards, and I knew that one slip would cause it all to collapse. Then I would have to face my shame.

If I could talk to this tortured child today, from over five decades into her future, I would let her know that this frail looking body with funny fingernails and teeth darkened by tetracycline was not who she was, so there was no need to feel shame. I would describe it to her as like a boat that was carrying her along a river, past the days of having a mother who couldn’t stop crying, past striving to reach goals that she somehow thought might ‘fix’ something that didn’t need fixing. Having a body is lightyears apart from being a body.

But there are lessons that must be learned while believing one is a body in order to understand that this is a complete fallacy. A certain amount of suffering has to occur to provide the impetus to question the belief in the self as a particular body. Young Julie’s shame and guilt served as a kind of rocket fuel in the search for who I really was that occurred much later in life. In addition, the sheer determination and discipline that I needed to endure meditation training was developed during these early years of trying to be a perfect little student. So, perhaps it had to be the way it was. In fact, maybe it was perfectly as it was meant to be.

This morning’s practice was an interesting investigation of a strange bodily movement that seems to be arising lately. For some reason, during practice only, my right hand and occasionally the left, seem to tremble completely out of my conscious control. It is like my body is trying to shake something off. It is a tiny tremble and has an energetic quality to it that is slightly uncomfortable, but not exactly bothersome. Often, I will just hold the offending hand with the other and it settles down and becomes still.

But today I decided that if this trembling wanted to arise I was just going to allow it and see what happened. I began the practice with my palms opened up on my thighs, not my normal posture, as if to say, “If you want to be here for the entire hour, I’m okay with that.” Sure enough, after a few minutes, the right thumb began shaking like a leaf. Occasionally, it spread to other fingers, and once in a while to the other thumb. I just stayed as still as I could and kept allowing whatever this energy was to flow as it seemed to need to.

It came in waves. The tremble would begin as a pressure built up within the substance of the hand, and then I would just relax the hand as best as I could and watch what happened. Each time the hand relaxed a tiny bit, the trembling would ease. Then, it would arise again, and the whole process would start again. It felt like something was being washed clean from the hand, like the agitation cycle on the washing machine.

Because it was a shaking, the image of a leaf trembling in the wind appeared in my mind, and with it I understood that my awareness of shaking was like the trunk of a large tree, a giant sequoia, from which the leaf emanated. The trunk of the tree, my awareness, was the unmoving, completely still viewpoint that was allowing the trembling to continue and not trying to stop it.

Eventually, this embodying of the tree trunk somehow enabled the hands to settle. Bit by bit, the spasms of contraction subsided and there was absolute calm. The whole body was relaxed and I had learned the lesson that the hands wanted me to hear.

This is why I practice. A metaphor came to me in the calmness.

You know when your hair dryer has been plugged in the wall for months, and after using it daily, waving the thing around your head over and over, the cord becomes a tightly coiled, wound-up mess that seems to have a life of its own? Each time you use it is an upper body workout because the tension in the cord keeps pulling the dryer away from your head. And when you look, you see that the cord has completely tangled itself into multiple loops that have coiled around each other. What do you do when this happens?

I have learned to unplug the hair dryer and hang it upside down, holding the plug in one hand high above my head to let the cord release the tension, the hair dryer spinning dizzy circles below. After a while, the spinning slows, the pendulum swing of the dryer begins to minimize, and the cord has magically grown about a foot longer.

Practice for me is like unplugging the hair dryer from the wall. By sitting and ‘unplugging’ from life for an hour, all of the tension that has built up in my body can release, as my hand has taught me.

But more importantly than this, by unplugging from my mind, I am gently released from all of the stories my mind uses to capture my attention. The regrets about what has happened in the past are unwound and let go. The judgements my mind loves to entertain me with are slowly but firmly allowed to sway and twirl all they want, until they dissipate and are gone, leaving peace and quiet in their wake. The worries and anxiety about what might happen in some imaginary future are seen for what they are, pointless twisting and turning of the metaphorical cord that runs through my life and seems to hold it together. All of this mind ‘stuff’ is allowed to unfurl, and as this happens, a beautiful serenity emerges.

The funny thing is that these stories have been the thing that has defined ‘me.’ The stories of my life: who hurt me, who I hurt, what I suck at, what I am okay at, what I know, what I don’t know, how this body works, how it doesn’t work, what I have accomplished, who I have effected, who I love, who loves me…all of it. All of these thoughts have coiled themselves over and over into a thing called Julie. But the coils are not really a thing. They can all be released just like those in the hair dryer cord. When all thought and stories are gone, when all identity is gone, what remains is beyond description. But it is definitely the reason that I practice.

My mother did what all mothers did back then. She stayed home and took care of the house, entertained, corralled children, planted petunias in the springtime, and cooked massive amounts of food. She loved to play bridge and read. She was the center of a whirlpool of activity, keeping everything in control.

And then her world collapsed. When she and my father couldn’t understand why two of the older children couldn’t gain weight and kept getting lung infections, they took our family doctor’s advice, loaded up the kids in the car and drove to the Mayo Clinic in Minnesota. After a few tests, the doctors gave them the news that every parent dreads. Their children were sick, very sick. They had a genetic illness that was going to kill them at some point, definitely before they reached adulthood.

I wasn’t born yet. I have no idea if they understood the risk of having more children after this devastating news, but I do know that my father was a devout Catholic, and birth control was not an option. So when I arrived on the scene, I was tested immediately and sure enough, now they had three children with a fatal diagnosis.

Shortly after I arrived on the scene, Jean had what was termed a ‘nervous breakdown.’ I can’t say I blame her. As a mother myself now, I know that if I was told my kids were going to die before me, I would lose it too.

Now, suddenly, my mother was not so traditional after all. Instead, she spent much of her time in psychiatrists’ offices, in mental hospitals, on a plethora of anti-psychotic medicines, anti-anxiety medicines, anti-depressant medicines. The kitchen cabinet was overflowing with bottles of different colored pills with weird sounding names. Dad assumed the role of pill dispenser, and I would look on, not understanding why my mommy was so sad. Sometimes she would disappear for an entire day to receive a treatment they told me was ‘shock therapy.’ Then I saw the movie, “One Flew Over the Cuckoo’s Nest’ and wanted to throw up. Other times she would disappear for a few days at a time, and neighbors would bring casseroles for us to eat. I would continue to just look on, not understanding why mommy was so sad.

Much of the time, when Dad was at work and the older kids were at school, I would sit with my mom as she cried and cried. I didn’t know what to say. But I definitely knew that I could not leave her. So I would just sit with her. Sometimes, when she could not stop, she would call Dad and he would drive home from work, dole out some pills, and we would all go to lunch at the Country Club. I’d order my standard French Dip and coke. Mom would try to hide her red eyes and regain composure, because it was not acceptable to lose it in front of friends at the Club. She would be feeling the effects of the pills by then and looking rather dazed. Dad would have a cocktail, a few hours earlier than usual.

I’m pretty certain that my mother would have given anything to live a traditional life, with traditionally healthy children, owning a traditional home in a traditional small midwestern town. Much, much later in her life, when medications were better and there was an accurate diagnosis of her condition, I got to see what could have been the mother of my childhood. A beautiful soul, with unending curiosity, and a warm, generous smile; a woman who loved her children so much that the love crushed her spirit.

These were elementary school years. I was very young, so young that I didn’t even go to the ‘adult’ library. Instead, I’d park my little stingray bicycle outside the front of the tiny building and excitedly dump the six books I was returning on the front desk and head off to where my favorite authors’ works were displayed. Henry Huggins, The Three Investigators, Beverly Cleary’s Ramona, Encyclopedia Brown. They were often mysteries, or books about boys playing baseball or football, or getting paper routes, or any of a number of mundane, ordinary things that kids do. For some strange reason I didn’t like to read about girls…always boys. They were all books about happy kids doing happy things. None of the stories had sick characters, or mothers who cried all day. I lapped these stories up for hours and hours every day, which was why library days occurred quite frequently.

I would languish in that room that smelled of paper and old building for as long as my little heart desired, leaving only when my growling stomach demanded I continue on the ritual path. Six news books in tow, the next stop was the downtown Woolworth’s, where I would sidle up to the lunch counter and confidently order my hot beef sandwich and vanilla coke, casually flipping through one of my new prized possessions as I waited. When I had soaked up every drop of gravy with my last piece of Wonder Bread, I’d pay and be on my way.

Without fail, I would first go browse the record store, to see if David Cassidy, the Monkeys, or Bread had a new album, and then head next door to the sporting goods store, where I might buy a new baseball cap or shirt. Did I mention that I was a tomboy?

With all my new purchases and borrowed books, I’d finally head home, having managed a healthy several hours away from sadness. The route I took was the same every time, the order of stores to visit, the meal, the path home, all of it. This was very much a ritual that my soul required to stay alive. In it, I located for at least a few hours a tenuous sense of control. If I had to be away from my mother, at least I did it exactly on my own terms.

Sometimes, by the time I arrived home, she would have pulled herself together enough to get dressed and look okay enough for me to retreat to my room and read. But other times, it was clear that she needed company, and so I would sit by her and try to convey, somehow, that everything was going to be fine. I was not feeling sick, and that Kathy was not currently sick, and that Tom was at work at Dad’s company, so really, she didn’t need to worry. Oh, if it were so simple! There was no convincing a mother of three kids with a fatal diagnosis that ‘everything was going to be fine.’

Later, when I would be required to sit on the toilet for seemingly hours dealing with the consequences of undigested hot beef sandwich, I would take the toilet paper roll off the roller and press it against my aching belly as I hunched over it and wonder what it would be like if I could just cut out my torso between my bottom ribs and hips and replace it with one from one of my happy fictional characters. Did they do belly transplants? I didn’t have many ‘poor me’ thoughts about the belly pain. It seemed justified somehow. If my being in this family could justify my mother’s sadness, then surely I deserved to have stomach aches.

Laying the first eyes on a case, at the time, seemed to be a huge responsibility. I was only 31 years old…a kid…at Stanford University Hospital, a place where you could not fuck up and go to work the next day. We saw weird and wondrous things at Stanford, a tertiary care hospital that took in referrals from around the country. Nobody ever wanted to wait for a final diagnosis. That could take days. A ‘final’ was only signed and official after the Hot Seat saw the case, then the resident, and then the resident together with the attending physician on the case. Sometimes, additional opinions were needed before the attending was comfortable enough to sign the ‘final.’

Much of the time the Hot Seat was on the phone with other physicians who wanted to have an answer, now. Were the margins clear? Was it malignant or not? I mean, come on, how hard can it be?

Well, it turns out that sometimes it is really, really hard. The body’s cells don’t come with signs imprinted on them that say, “I am cancer.” The Hot Seat would write her/his impression in a book at the desk, and all day long interns and residents or sometimes attending physicians would consult the book to read the Hot Seat’s opinion. It was such intense pressure. I mean, if you were wrong, absolutely everyone would know it. Usually, the Hot Seat wouldn’t kill a patient with an error, because it would be caught by the attending on the case. But no error would ever go unnoticed.

Maybe I should first explain what it even means to work as a surgical pathologist. So here is Path 101: Any tissue taken out of a living body, whether during surgery or just a simple biopsy of a skin thingy (professional term), the tissue is always sent to Pathology. I like to think of the Path Department as the place where things are named, hopefully accurately enough that appropriate medical care is given.

If the slides of a given tissue viewed under the microscope possess enough indicators of badness, it is given one of the hundreds of names depicting cancer, when growth of a cell goes unchecked and can lead to imminent death. Fortunately, much of the time it is safely called ‘WNL’ (within normal limits) or given the blessing of some benign thing.

The job deserved its moniker. You were either looking through a microscope desperately hoping you knew what you were looking at, or you were consulting one of hundreds of textbooks describing all of the various things that could go wrong in a body. When you weren’t doing one of those two things, you were on the phone, reading your diagnosis, preliminary though it was, to the hungry ears of physicians with no patience (do you see what I did there?). Sometimes, they would come to the department so they could view a case with you on the Hot Seat multi-headed microscope, and then proceed to argue with you, even though they only passed histology in medical school by cheating because they got motion sickness.

Another adrenaline boosting assignment for the Hot Seat was frozen section duty. The frozen section Fellow was the one who was called to the operating room(s) during surgery to consult with the surgeon. Sometimes, they needed to know if their margins were clear on a tumor. Or sometimes they needed a preliminary diagnosis in the moment, to dictate what they would do next in surgery. In these cases, we would flash freeze a small piece of tissue and slice it in thin sections with a very sharp knife called a microtome. Then a slice could be put on a slide, stained, and viewed through a microscope. This all was done fast, in a few minutes, while a patient lay under anesthesia in the next room. Of course, there was always an attending physician in the room as well as the fellow, so a HUGE mistake could only be made if the attending was wrong, or if no attending was working, as in late at night when only the Hot Seat was available.

This wasn’t a good job if you were prone to ulcers. Also, if you were in any way neurotic about not making mistakes or being judged by your peers, you would want to avoid the Hot Seat.

But the duties were almost never boring, and sometimes it was downright entertaining. The following story is true, I swear. A woman was having surgery for a pelvic mass during my stint on the Hot Seat, at a time when I was on frozen section duty. I knew nothing in advance, but when the secretary handed me a small slip of paper and said, “Julie, frozen in OR 7, I was not prepared for what was written. It said, “Bring a gurney .” 

My friend and fellow Fellow, Matt, and I trekked down the hall wheeling a gurney to the OR, where we gowned up and prepared to go into the surgical suite. When we entered the patient was lying on her side and the surgeons were trying to figure out how to move a gigantic mass of a tumor that had been excised off of the table. They clearly needed our gurney.

The tumor was the size of about 20 basketballs, glistening white and grey with a multi-loculated appearance like caviar, but in some sort of horrible, monster caviar movie…like instead of fish eggs, we are talking Godzilla eggs. It was clear that this multi-cystic thing was largely fluid filled, and it was also very, very heavy. 

We rolled the gurney adjacent to the operating table and, with the help of the entire surgical team, successfully transferred it. It took a few very large sheets, but we managed to cover it up and proceeded to wheel it into one of the hospital medical wards, to weigh it on a scale they used to measure very heavy people. We could not get an accurate weight any other way. And we were Pathologists! Weighing, measuring and naming accurately was what we were paid (little) to do!

Have I mentioned yet that Matt was the most hilarious of all of the pathology fellows when I was doing my three years of Surgical Path? He was Danish, and had a fabulous accent as well as a wicked sense of humor. As he and I were wheeling this mass the size of Arizona down the halls of Stanford Hospital, he kept making the most ridiculous faces and trying in vein to make this all seem normal. The entire mass was covered in sheets, and it must have looked like we were wheeling a very obese dead body to the autopsy suite, with a quick side trip to a hospital ward scale.

In a sense, we were. We had to take it to the autopsy suite in order to drain it. I can’t remember exactly how many buckets of fluid we drained from the thing…it was in the twenty to thirty range. We also needed to examine it thoroughly, both grossly and with a few frozen sections of the more solid areas to give the surgeons our best guess as to what this was. Fortunately for the patient, it appeared to us to be a benign growth, and the final agreed with this assessment.

Stories were written in tabloids about this event. The surgeon was hailed as having excised the largest tumor in history. In one story Matt and I were referred to as her “hefty assistants,” a term that sort of made sense although it ignored our medical student loans and about eight years of specialty training. Plus, it was the first and only time I have ever been described as hefty.

Whenever I tell others about this experience, I am always asked what happened to the patient, of course. And…how did she let it this thing get so big? I have no answer to any of this, so I usually say, “Well, she was 300 pounds lighter.” And that brings me to the point of this entire post:

I feel at least 300 pounds lighter than I did during those months on the Hot Seat. The re-emergence of this blog is so that I can write more about how this has all unfolded in the past few years. It still isn’t clear to me how the writing will play out. I guess I’ll just have to wait and see.

I’m sure he was a perfectly good soul. He dedicated his career to help families cope with a fatal childhood illness and certainly did not deserve my hatred. He seemed fairly old to me, older than my parents by maybe a decade. I remember his eyes, looking at me from behind very thick glass lenses with a black frame. His hair was white, but there was not much of it. I remember him being very tall, and fairly thin. He always wore a crisp, white doctor coat with various torture devices in the pockets.

When I was born, a few years after Kathy and Tom’s diagnosis, I was immediately tested for cystic fibrosis, and much to my parents’ dismay, they learned that I would be joining the group for the frequent drives to Omaha to visit Gordon Gibbs. These drives were awful. First, three hours to a tiny child is a long time in a car. It was especially a long time in this car, with suffocating air heavy and dense with worry and despair. I remember my siblings and I counting the number of giant semi trucks with a huge red and green CF emblem on each side which meant “Consolidated Freightways,” a now defunct freight service. To us, it meant cystic fibrosis…that thing that was going to kill us. The trip to Omaha was via Interstate 80, which crosses the country and seemed to contain every single CF semi truck ever made.

My mother would be in the front passenger seat with my father driving. I would sit in back between my big brother and sister, all three of us dreading the arrival at our destination. I remember very little talking. My father would occasionally try to comfort my mother, who could not hide her fear. The visit never brought with it good news. This became more and more apparent with each trip. Sometimes we would drive home missing either Kathy or Tom, when Dr. Gibbs decided he or she needed to stay in the hospital for antibiotic treatment. Those were the worst of the drives. Usually, it was Kathy who had to stay. She was always at the greatest risk, for some reason. I never had to stay.

Dr. Gibbs’ office was in the basement of the University of Nebraska Medical Center. Once we parked the car, we would head into the building and enter into what I think must have been the oldest elevator in existence and slowly descend to the bowels of the building. It was one of the elevators that had two barriers to entrance or exit, a regular door as well as a thick, iron gate. It was almost as if the Universe was saying, “Are you sure you want to leave where you are right now?” My answer was universally NO.

Once you passed the gate and door of the elevator, the long, dark and dank hallway offered up many more iron gates. It was like a maze of hallways and somehow my parents always knew which way to turn. I couldn’t keep my eyes off of the gates. I just didn’t understand what they were for? Why did there need to be a heavy set of rolling iron bars dividing one section of a hallway from the next? And why did it smell so horrible?

When we came to the door with a plaque that said Cystic Fibrosis on it, my heart would fall into my stomach and tears would appear in my eyes because I knew what was going to happen. I hated this place with every fiber of my being. These were the days before a blood test could determine how well a pancreas was functioning. This was a time when that could be known only by measuring the fat content of stool. And since I could not poop on command (and still can’t, for that matter), this meant that when it was my turn to be examined, Dr. Gibbs would snap on a latex glove and insert his very large index finger into my tiny anus to collect a sample. It was mortifying.

If that wasn’t bad enough, the very last procedure I had to tolerate Every! Single! Time! was the ‘throat culture.’ Just as I could not magically produce poop for him, I also could not produce sputum. So the very last thing he would do was shove a long stick with cotton at the end deep into my throat, causing me to choke and nearly throw up. This made him happy because it meant he got his sample as I spewed and coughed and gagged.

Can you see why I hated him? And this was even before I learned about the monkeys. Dr. Gibbs was researching cystic fibrosis with the hope of helping kids like me. But the sad fact was that he did his research on living, breathing monkeys. At least, this is what they told me. So probably some administrator at the Medical Center thought that it would be efficient to have the very infrequently visited cystic fibrosis clinic on the same level, in the same hallway, as the primate lab where Dr. Gibbs kept his monkeys. Hence, the gates…and probably the smell. Or at least, this is the connection my little brain made when I learned about the monkeys in the lab. I envisioned that the gates were there to automatically slam shut in case the monkeys got loose.

Usually, I would entertain myself on the ride home with a three hour fantasy involving setting all of the monkeys free and hiding all of Dr. Gibbs’ tools of torture. If all of us were present, it was usually a much happier drive home for me at least. I could breathe easy until the next trip, and I could leave the worrying to my parents, who were so much better at it than I was.

This is not me!

Recently I’ve been pondering the impact that continually seeking strength has had on my life. Clarity always seems to improve with hindsight, and as I can now legitimately call myself “old” (at least in CF terms), the influence of this seeking is dawning on me.

For the first five decades, this was all about physical strength. I wanted to be strong. As a little kid, I wanted this desperately but had no reasonable expectation that I could achieve it. I remember being completely obsessed with winning the “Presidential fitness award.” The initial version of the Presidents Test included pullups, situps, the standing broad jump, the shuttle run, the 50-yard dash, the softball throw (my favorite), and the 600-yard run. I would have a massive stomach ache the day before the 600 because I knew it would kill me to get the necessary time to be in the top 85% required for the Presidential award. The performance anxiety was torture. I don’t know why my little elementary school-aged brain needed this affirmation so strongly. Perhaps it was the earliest indication of trying to overcome the shame I felt from living in a body that didn’t seem to function correctly. If I won the award, at least I could say I was ‘fit’ even if I spent half my life (it seemed) on the toilet.

Later, in my early twenties, I discovered weight training. This was one of the most important discoveries I made for my psychological health. By this point, I was thoroughly disgusted with my body. It had embarrassed me over and over, like Chinese water torture. Mostly, this was the result of a gastrointestinal tract that couldn’t digest fat, but I also had a chronic cough, weird looking fingernails, and yellow/grey teeth (tetracycline anyone?). I tried in vain to hide these perceived faults from the world, but a) most were pretty obvious, and b) this took a ton of energy and advanced planning. It seemed my life was destined to consist of hiding my repellent inner truth–I hated my body.

But then I started watching Jane Fonda (I kid you not) and doing her workout every morning. I’m pretty sure I wore leg warmers. This lead to the discovery that resistance training was something that I really enjoyed doing. I’ll never forget the morning I put on a short-sleeved shirt that I wore all the time, and noticed that my upper arms were actually filling out the sleeves like they never had before. I lifted one arm, and recognized that I actually had triceps! What? Somehow, this thing I was doing every day was actually showing the effect that it was supposed to, even though my body wasn’t supposed to (in my mind) work normally. I had discovered a CF work-around. I actually had some control over this meat-bag after all. Thus began one of the best life-long coping mechanisms that I have discovered–exercise.

That day I learned that I could actually make my body grow and get strong, even though I was skinny, even though I didn’t digest food properly, even though my lungs hated running. Not only could I get strong, but I was good at getting strong. I was persistent. I read every body-building book/magazine out there at the time. I learned what exercises to do for what muscle groups. I learned to enjoy the ‘burn.’ Soon, I developed the confidence that comes with spending hours almost daily at the gym. I developed the gym strut. Sometimes, I would even look around and notice that I was actually the ‘strongest’ woman in the room. What a rush!

Of course, at certain points, CF would step in and crush me. Starting in my mid-thirties, the sine wave of of my fitness pattern began. I’d get in top shape (for me), usually from both running and lifting. By this time, I had learned to like running mostly by figuring out how to work up to longer distances gradually, so that I never had an “I hate this” moment. Without these “I hate this” moments to kill my motivation, I kept coming back for more, and before I knew it, I was a long distance runner. Then with more confidence, I explored almost every form of exercise out there. I found my groove. AND THEN BOOM, I’d land in the hospital with pneumonia. I’d have to take two weeks off of exercise, infuse poisons to kill the bacteria that also seemed to drain me of all ATP, miss sleep, lose weight because who can eat when the antibiotics make the site of food nauseating. When the dust settled and the PICC came out, there I was back at step one, where jogging a block was unthinkable and bodyweight exercises kicked my ass.

So, I’d start again. I’d outline my new workout regimen and commence the long trip up the sine curve, only to be knocked down again. Over and over this happened, but I kept getting back up again, because each time I did it successfully, I developed stronger faith in my ability to come back. This is the way resilience works–the more you practice coming back from a set back, the more confidence you have that you can do it, so you do it. My strength was in re-discovering my strength.

When I hit fifty, I entered a different stage of life, one that required a new approach. Of course, being stubborn, I didn’t recognize this at first. My fiftieth birthday present to myself was to train for and pass the RKC Challenge. I didn’t see anything wrong with this idea at the time. I had always set challenging fitness goals and made plans to achieve them. This was how my motivation game was played. But after the weekend when I came home to be admitted to the hospital with pneumonia, it began dawning on me that perhaps I needed to rethink things. This body didn’t just have CF anymore, it was also getting old. And things were starting to break down.

Now eight years after that fateful weekend, strength has taken on a different meaning. I still exercise daily, but I’m not quite a maniac anymore. I still am in fairly good shape (for the shape I am in), and I still strut a bit, but I have left it to the young CF kids (by this I mean anyone younger than me) to run marathons and do Tough Mudders. This body is tired, and has more than a few angry joints and one entirely new body part (a titanium ‘cage’ fusing L5 and S1.

But I am just as strong as ever.

To what do I attribute this feeling, no, actually this knowledge? Well, I’ve discovered that I am not my body.

Huh?

Well, for the first 50 years, I lived by the maxim that I could keep CF at bay by whipping my body into shape. And it sort of worked. At the minimum, it turned out to be a great treatment strategy. I have no doubt that part of my reasonably good health is due to my obsession with exercise. But my meditation practice has shown me that this strategy of ‘beating’ CF to a pulp was not needed anymore, at least not for my psyche.

It turns out that when you spend hours upon hours doing nothing but watching your mind and body, it becomes clear that your essential ‘self’ is neither of those things. Right now I can feel the sensations at the bottom of my foot, and it is immediately clear that I am not my foot. “Okay, sure,” you say, “but it is your brain that is watching your foot and you are somewhere in that brain.”

But from where in the brain comes that feeling of ‘me’? Nobody knows. Materialist scientists say that it is obvious that consciousness comes from the brain, but they really have no proof of this. This is the ‘hard problem of consciousness.’ How does physical matter (the brain) give rise to something decidedly not physical (consciousness)? If you sit and just watch bodily sensations arise and pass, thoughts arise and pass, emotions arise and pass, this whole mind/brain connection thing gets pretty weird. It seems to me that ‘I’ am in none of this business. Instead, all of these things are like a movie playing on the screen of ‘my’ consciousness. I put the ‘my’ in quotes because it is definitely not clear that this consciousness belongs to ‘me.’ It is just there, for my viewing pleasure.

I know this may sound a bit woo woo, but it is also a very freeing experience, and one that leaves me profoundly happy in the occasional moments when it solidifies into a knowing. Based on direct experience, it seems that ‘I’ am not in my body, but my body is in ‘me.’ The same holds true with thoughts and emotions. They arise within this thing that is much greater than they are, this thing that feels like ‘me.’ One word for this ‘thing’ that I like (because ‘me’ doesn’t feel quite right) is awareness.

So when CF has its way with my body, I feel like there is a bit more space to breathe. I watch it happen. I respond appropriately. I watch the emotions of fear or sadness arise and pass. I bide the time, infuse medications through my port, and plan my recovery routine. All the while, I know that none of this has to do with who I really am. CF can’t touch that. This feeling is beyond strength. This is uber-strength.

So I invite you to give this experiment a try. Don’t take my word on anything. Become comfortable watching the body and mind play out their games. Establish a routine doing this, because it takes some time to develop the skill of watching life play out without all of the distractions your brain likes to throw in to muddy up the waters. Stability of mind allows the water to calm down a bit and the dirt to settle. Then you can begin to see clearly what’s going on. When things become somewhat calmer, ask yourself the simple questions, “Who am I? What am I? Where am I?” Then you can properly put CF or whatever bodily condition you live with in its place.

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.