Month: March 2019

Coincidences can be too convenient. 

A teenager gets a vaccine and experiences symptoms of lightheadedness, flushed skin, and tingling in the upper extremities. Examination in a pediatric practice confirms an elevated heart rate, a rash around the vaccine site, and altered sensation in the back of both arms. After three days, those symptoms disappear, only to suddenly return two weeks later, with increased severity. The evening prior to the symptoms’ re-emergence, the teen notices a tender bump beneath the skin at the vaccination site. An ultrasound later confirms the existence of a subcutaneous nodule, a 2 by 2 cm cyst-like swelling that is felt to represent a nonspecific inflammatory reaction, not an active infection.

The teen and her family pose an obvious question. Could the symptoms, the nodule, and the vaccine all be related?

Experts issue a sober reply: the concurrence of vaccination and unusual symptoms is coincidence. The vaccine in question does not cause these symptoms.

“They’re sure?” the teen asks.

The temporal association seems hard to ignore. And yet that is precisely what happens. Dogma casts a critical countenance on the possibility of a vaccine-related problem. Proponents of the vaccine and its large scale epidemiological evidence repeatedly reply “coincidence” with an air of authority and finality.

Over a few weeks, the nodule subsides. Unfortunately, the teen’s symptoms and physical exam changes do not. Autonomic nervous system dysfunction – likely immune system caused – is diagnosed by a thoughtful specialist who cares for children with similar symptoms at a major medical center. Medications are tried, as are intravenous infusions of fluids. Tests are run. Her life upended, the teen struggles through eighteen months of unsuccessful treatment trials. Finally, an intensive neurovascular retraining program at a large children’s hospital successfully knocks the “dysautonomia” into remission.

“Strange”, the affected teenager observes during the course of the illness. “No one really wants to talk about what caused all this.”

Disappointing, more like it. The medical profession is losing its sense of curiosity.

I get it: the vaccine topic polarizes. There is a deepening entrenchment between those who support vaccines and those who oppose them. The battle lines are being starkly drawn. There seems little room for rational reflection.

There is no doubt that immunizations have improved the world. Diseases that once killed or permanently disabled have either been eliminated or beaten back to the brink of elimination. The science is sound behind the vaccines. Their public health results have been astounding.

And it is a terrible truth that society is becoming complacent. Worried about potential side effects, the average person is susceptible to misinformation, both in the medical literature (where evidence has been falsified) and in the lay media. Consequently, fewer children are being vaccinated. And some preventable diseases, such as measles, are returning.

But what does medicine do? Instead of engaging in a compassionate conversation, it labels people (mostly parents) who worry that vaccines may cause problems: “anti-vaxers”. The profession expounds the virtues of vaccines and the science of large scale studies. It closes its ears to any dissent.

I was born under the sign of polio. My father contracted the dreaded virus in the late 1950s, when my mother was pregnant with her second son (me). Dad had tried to get vaccinated – three times – but failed because the local medical offices in Philadelphia had run out of vaccine. He spent the remainder of his life in a wheelchair. With this perspective, I don’t need any self-righteous researcher to tell me about the virtues of vaccination. Most of these people haven’t lived personally with the consequences of missed immunization. My family has.

Despite that experience, I am not naive enough to believe that all vaccines are risk-free. We know they are not. We also know that the public health benefit of vaccines outweighs the individual health risk of some uncommon side effects. Until the rise of autism set anxiety into the hearts and minds of American parents, most Americans were willing to live with this risk-benefit relationship. They remembered polio. They had seen children die from measles. Now, those memories are fading. And recently, the individual willingness to accept risk has changed. Sadly, the flames of parental fear are being fed by inaccuracies and falsehoods.

But that doesn’t make the fear wrong. And it doesn’t mean that medicine and its scientists should be closed to adding to our collective knowledge base. In an age of so-called precision medicine, we should listen better to the perspective of the individual.

Look, I understand that just because events happen at the same time they are not necessarily related. If you review the peer-reviewed medical literature, you will not find a statistically significant difference in rates of dysautonomia between populations receiving and those not receiving the vaccine. Large scale studies show that the rates are similar. If you scour the literature, there is also no evidence that a vaccine, a subcutaneous nodule in the arm, and a condition called “immune-mediated dysautonomia” are connected. But – and this is the significant part – there is no report on this particular triad of concurrence. It has not been studied.

Neither have there been examinations of sub-population data comparing rates of dysautonomia post-vaccination between adolescents (such as my daughter) with juvenile arthritis who are receiving weekly injections of an alpha tumor necrosis factor antagonist and adolescents without such a clinical history. And, because of our collective close-mindedness to inquiry about vaccination effects to subgroups of people, you won’t find my daughter’s recent experience or other similar case reports published for the general medical community to consider.

The course of human discovery has benefitted from inquisitiveness. Examples abound of the unexpected, experience outside the confines of previous evidence, leading to new lines of thinking and investigation, and subsequently, new theories, new explanations, and new therapies. This does not happen randomly. It happens because people in positions of observational power permit themselves to pause when something seems different, to challenge themselves and existing frameworks of understanding when something seems unusual, and to ask questions.

My daughter did just that. When she was told that the vaccine in question did not cause the reaction she was experiencing in her arm and body, she calmly rested a finger on the swelling in her arm and asked “then what caused this?”

We don’t know that the vaccine did or did not cause the arm nodule and the rest of the symptoms. We only know this: there are no data, there is no “n”, there are no reported cases of delayed inflammatory response the size of an avocado pip at a vaccine injection site occurring simultaneous to the onset of dizziness, lightheadedness, and inappropriate tachycardia. The field is open.

Shouldn’t the tender inflammatory nodule at the site of the immunization have made us curious? It did not, to many of my medical colleagues. A shadow drew over most expert faces when the temporal association was mentioned. Behind that shadow, minds compartmentalized.

To the person directly experiencing all this – my daughter – this was not some academic exercise, some theoretical construct regarding the correlation or lack thereof between her experience and an existing evidence base. This was about feeling better. This was about helping other young people with similar medical histories avoid the same situation. This was about trusting that medicine could see past existing dogma and potentially see something new. The nodule in her arm caused minimal physical discomfort. The cool and systematic decision to ignore it incubated a feeling of isolation and intermittent hopelessness. Medicine’s blind defense of vaccination safety brought little solace. And so the nodule – and its unique circumstances – gradually receded into untestable oblivion.

We missed an opportunity for learning. The vaccine is good; I believe that most young people should still receive it. Is it possible though that a subset of children and young adults with certain immune-related medical conditions should not? We don’t know. We were institutionally too afraid to ask.

Has the medical profession aged such that it has developed its own arthritic restrictions in compassionate learning and humility? My daughter and I hope not. We urge all involved in daily care and service delivery to try to maintain at least a tempered enthusiasm for events and concurrences that challenge the status quo. We urge you to permit yourself continued intellectual engagement in the evolving enterprise of health and wellbeing. We don’t know all the answers. We don’t even know most of the questions.

Please stay curious.

During my surgical internship, we had a formula for identifying when patients were ready for discharge from the hospital. If a patient “looked good, felt good, and was wearing the clothes he wanted to wear”, that patient was ready to go home.

The year was 1985, a different time in health care. I can’t imagine too many docs today trying to apply a similar set of criteria. Insurance companies would have a fit. The physician would be labeled by peers and hospital administrators as non-scientific, evidence-lacking.

Too bad. The criteria were pretty darn good, from a clinical perspective. For days, a patient could be bed-ridden, food tray untouched, face filled with that pasty look. You’d stop by in the evening, hoping to hear of some improvement, only to learn from the patient’s nurse or a family member that nothing was different from the morning. “Maybe tomorrow will be better,” you’d opine. Then tomorrow morning, sometimes surprisingly, there the patient would be, sitting up in the bedside chair, complaining about his hospital gown, trying to get one hand into his own shirt over an i.v. while swiping at an uncooperative eyebrow or patch of hair with the other. You would stand there and review the objective pieces of information. You’d align that data with the expected timeline for recovery. But you already knew how this was going to turn out. If the fellow passed the discharge screening triad by mid-day, he was usually going home.

I thought about those criteria this morning when I awoke at five AM with a headache bigger than the space available inside my skull. This isn’t right! I yelled internally. Day 4 of feeling like crud, looking like Flat Stanley, and wearing sweaty pajamas. This isn’t right. I’d had enough, was unable to sleep because of coughing and unable to be upright for any amount of time because of general flu yuck. I was tired of it all. Sick and tired of it all.

Angry, I made myself crawl out of bed and stumble to the kitchen for some fluids and a dose of ibuprofen that I knew would just upset my stomach. Then I retraced my steps back to bed and some compressed pillows. And more waiting. Waiting to recover.

That’s when the surgical team from 1985 rounded on me.

“Day 4 of admission for influenza,” the intern stated wearily. He didn’t look at me, clearly disappointed that I’d not done better overnight. “Body aches are improved but he has a headache the size of Texas, worsening sinus congestion, intractable coughing, and persistent temperature instability. Limited oral intake too.” The guy’s tone of voice belied a certain cynicism at his patient’s interest in making progress.

Everyone else nodded. They all stared at my pajamas. That meant one thing: I was going nowhere. Which was fine because nowhere was how I felt. I felt like plain old nobody going nowhere. “Try to sleep,” the intern advised. Then off he and the others went.

Not again, I told myself. I’m not disappointing that intern again tomorrow morning. Today would be the day! Today I would turn the corner. Sure, my body replied. It reminded me of my hacking cough, booming headache, and surliness of stomach post-ibuprofen. Ready by tomorrow. Yeah. Whatever. I drifted into a state of uncomfortable non-sleep. By expected clinical course, I should have been up and about this morning. By the criteria of appearance and clothing selection, I was stuck in illness.

However, a few hours later, I’m up. I’m not better, but I feel ready to be better. I need to be ready to be better. So I shave. Then shower. Then wash some clothes. And then I put on something other than pajamas. And I sit somewhere other than semi-propped up in bed.

Being sick stinks. I’m lucky though, and I know it. Because this flu illness, no matter its temporary ugliness, is likely going to pass, either later today, tomorrow, or the day after that. Many other patients aren’t so fortunate. Too many people have chronic conditions that either challenge their daily routine or flare regularly and repeatedly, disrupting anything resembling a normal course of life. These folks don’t have the choice of whether or not to wear the clothes they want to wear. Every day, they just have to wear those clothes, look the best they can, and try to balance things so that they look and feel as good as possible on as many days as they can. They have to become warriors for their health.

We understood a little something about warriors in 1985. While there weren’t as many patients living with chronic conditions back then as there are today, there were still plenty of bad things, such as cancer, that gave people good reasons to be and stay sick. Sure, we could cut out some badness, or bypass blockages, or perform other temporizing procedures. But the clinical toolkit was more limited than it is today. So we let time and the warrior-nature of people help. We didn’t want anyone going home before they were ready, not because of insurance DRGs, hospital length of stay statistics, and readmission rates. We didn’t want our warriors to unnecessarily suffer.

Maybe that’s why we watched for reliable signs that recovery at home would be better than care in the hospital. One of the best signs? You guessed it: the patient choice of wardrobe. Once someone put on her own clothes, she was usually ready to take on the challenges of healing outside the sleep-interrupting patterns of a hospital surgical ward. Once someone was inside his own shirt and pants, we didn’t want him spending a day longer in the hospital than was needed.

I don’t know how I’ll be feeling during the next rounds from my imaginary hospital team. My head still feels oversized and my sinuses are still under pressure. But I’m looking better, at least one person has told me, and I’m no longer sitting in bed. I’m also wearing the clothes I’d wear if I wasn’t sick with the flu.

Maybe tomorrow’s my day.

I can’t remember a time when my mind wasn’t busy. For as long as I have memories, I have had a mind with thoughts streaming across it like vehicles on a highway. Sometimes it’s rush hour and sometimes it’s late at night but still the highway has a regular flow of traffic.

The traffic need not always be troublesome; I can step back sometimes and just watch it all happen. The detachment feels good. I imagine that I’m on a bench, by the side of the road, and the sun is out, the sky is clear, and, if I close my eyes, I can ignore the whir of mental momentum and bask in the sunshine warming my face. The two and four-wheeled products of my mind still roll on by. But I don’t always need to see what their make and model is or what state they are from. And I don’t always need to wonder where they may be going.

They are strange things, those collections of thoughts, images, ideas, dreams, and ideas we call minds. They allow us to think, to memorize, to write words in a sentence, to read that sentence and understand it, to read that sentence – the first one in this paragraph – and recognize that the word ideas is listed twice.

My mom once told me that she would sometimes watch me coming home in the afternoon, walking up our sidewalk and short driveway. “You were always talking to yourself,” she said. “Even if your lips weren’t moving, I could tell that there was some story going on inside you.”

I picture Mom standing by the living room window and I can see what she saw as I plodded up the driveway. The kid has short hair, a big head, and ears that might give his body some lift if the wind is just right. He is wearing grey trousers and a white shirt, or an oversized football uniform, or baggy dungarees and a poorly fitting jacket. Things aren’t tucked in. There are dirt and grass stains, on at least one article of clothing. There are probably some grazes, cuts or abrasions on his cheeks, elbows, or knees. He is mumbling and muttering to himself about something, one hand or perhaps two gesturing as he re-enacts some event, real or imagined.

I remember what that kid was thinking. There was usually some story of struggle, some tale of triumph in the face of adversity. The kid wasn’t dreaming he was superman. No, he was imagining how he would do this thing better next time, or tell that person the right thing, or break free based on sheer will from the drudgery of some sort of injustice or oppression and find his day in the sun, his sweet taste of victory. This kid wasn’t as fast on the actual football field as he was in his imagination. No matter. That imagination was always letting the kid see some type of success that was either unrealistic or unimportant.

He thrived on seeing himself overcome adversity – at least doing so in his mind’s eye.

Although the details of the story changed over the years, the basic script did not. Somewhere, inside the neural platform of my brain, the storyline of challenge, struggle, and triumph was etched into the basic circuitry of how my mind liked to interpret the world.

I can watch that circuitry in action, even now, decades later. It runs like a predictable loop at a racetrack. It has the same types of stereotypical barriers, challenges, and responses. It always aims at some sort of success or recognition, some type of acknowledgement.

We like these types of stories. And why shouldn’t we? They are archetypal, as described by Jung. Mine followed the basic structure of the hero’s journey, as outlined by Joseph Campbell. They map the basic prototype of protagonists we identify with in movies, novels, even the histories of nations. They are predictable. They are cliche. And yet they are sometimes so comfortable. Because they are loaded with culture, values.

I’ve been watching my stories recently. Sometimes, I’ll actively try to redirect them, in the same way that a change in a road will redirect cars and trucks. It’s funny how the stories will still try to get back to the original plot line. I can take them off on a odd tangent, aim them in a direction that is both foreign and freeing, and then, like homing pigeons temporarily thrown off by a storm, they will fight to find their bearings and their way home.

That’s when I laugh. I watch the stories veer off course, lurch back towards where they expected to go, and I lean back against the bench, feel the warm boards against my back, raise my gaze to the heavens, and breathe. And I smile. And I breathe again.

I am more than my neural circuitry. I am searching for contentment inside that profound realization.

It should be contagious, like a cold. We should receive and be transformed by it as easily as sunlight making vitamin D inside the cells of our skin. Integrity should be as easy – and as important – as our every breath.

And yet we think of it as a nebulous higher quality, don’t we, something that we aspire to achieve rather than something that we are, something that is inherent in the state of our daily being?

It is about making decisions that your future self will be proud of.

That’s how I’ve occasionally defined integrity to some people. By “some people” I mean my children, and perhaps a few of their friends. I’ve not had much opportunity to do that, really; teens and young adults don’t want to hear too much moralizing from their own or someone else’s parent.

And it can sound that way, can’t it? A reference to integrity can sound like a sermon from a plinth or pulpit.

The news media is full of integrity angst. Not a week goes by, it seems, without some sad, head-shaking, gut-clenching or otherwise astonishing revelation of non-integrous decision-making or action by public figures and officials. Some leaders defend their ‘personal integrity’. Others challenge someone else’s. And some admit to first losing and then regaining their integrity, as if it’s something slippery and elusive, a behavioral code balanced atop their genetic code that can slip away as quickly as a scoop of ice cream from a sugar cone.

Maybe it is. I don’t really know. I just wish it wasn’t so difficult to have integrity, to be “integrous”. Even the words feel distant. And that’s not right. Integrity should be simple. It shouldn’t be arcane or conceptually challenging.

My refrigerator might have the answer. It’s right there, on the door. I am face-to-face with it many times a day and yet I’ve forgotten to see what’s in front of me. Five words printed on a magnet that is part of a tapestry of photos, sayings, and reminders.

All I need to do is ask myself, at any time during the day, one of these questions: Am I being kind? How about brave? Am I being honest? Am I generous?

Living with integrity may not easy. But having those questions so readily accessible can be. Sure, there is much to consider inside the values of kindness, courage, honesty, and generosity. I don’t, however, need to fully unpack those values to know if, at any moment, what I am doing, thinking, or intending meets the basic criteria. I can do my best to be kind, brave, honest, and generous. I can admit when I’m not succeeding and try harder.

We all have Ys in the roads of our lives. These are significant branch points, decisions to go left or go right. When I idle at those forks in my own life, I like to imagine myself as an old man, looking back at the current me. The older guy knows how things worked out. He knows what choice was appropriate, especially if the options have implications for others and not just myself. That fellow lifts an eyebrow at me across time when he sees me lean down a path that is selfish or self-serving. He’s old, after all. He doesn’t care if the right choice was more difficult. He watches me, with a hawk eye, hoping that I will show big scale integrity.

The life I lead everyday does not always need that eyebrow-flicking fellow. It involves lots of decisions, many small and seemingly inconsequential, and yet most meaningful in some way, to people around me. Did I smile instead of frown? Am I listening rather than talking? Does what I am rushing to do need to happen so quickly? I can think of no better guideposts for the daily meanderings of my life than the five words stuck in plain site on my refrigerator door.

Who knew that integrity could be so cool.