Many Cannot Breathe

It was almost 14 years ago. Our three sons had gone to bed and Doug and I were getting ready to go to bed ourselves.

We heard a strange noise coming from the boys’ room. We turned on the light in the hallway and looked into their room – Zachary, our eldest, who was six years old at the time, was sitting up, holding his hands over his chest and upper abdomen, and crying softly and desperately, his face contorted in pain.

“What’s wrong, Zachary? Sweet baby boy, tell us what’s wrong!” we yelled as we turned on the light and ran to him.

It took a minute before he could get any words out. “I can’t breathe, it hurts,” he sobbed.

My mind raced. Is he having a pulmonary embolism (a blood clot in his lungs)? Is it cardiac?

“What hurts, Baby?” I begged as I pulled him to me and put my ear to his chest, hearing air move in and out, hearing no wheezing, and feeling his thorax expand fully between sobs.

“Right here. My heart. My heart hurts,” he said, as he held his hands over the center of his chest.

Doug was ready to call 911. I was ready to let him.

And then I asked my son, “Why? Why does your heart hurt?”

I don’t know why I asked him that. But he answered.

“Because I’m so sad.”

We held off on the 911 call, and now our parental distress went in another direction. What could have happened? Who had hurt our child? What had he seen? What had he heard? What on Earth was going on?

“Sweet baby, please, please tell us. Tell us why you’re so sad. Tell us what’s wrong.”

We sat on his bed and waited for him to be able to speak. It took quite some time.

“We saw a movie at school today,” he started, and dissolved into sobs again.

Again, our minds swirled. What could they have shown a class of first graders?

We held him and waited again for him for him to speak.

“We saw a movie,” he repeated. “It had very bad things. It was so sad and so scary and just really, really bad.”

“Please tell us what you saw, sweet Zachary. What happened in the movie? What made you so sad and scared?”

“It was about a person named Martin. Martin Luther King. And people were so mean. Some kids couldn’t play with other kids. They couldn’t play with their friends. The people couldn’t be with their friends because of their skin color. The people were just being so mean – even parents and teachers and the principal and some kids. And then, and then…..” We waited again for him to regain composure. “And someone shot Martin Luther King. Someone killed him. Why? Why? And Mommy, Daddy,” he continued as he started sobbing again, “there was something else, even worse….”

It took a few more minutes for him to be able to speak again. “The policemen. The policemen. They were hurting people. They’re supposed to help people. They were hurting people. They shot water on them from a hose and they hit them with sticks. Why? Why, Mommy? Why, Daddy? Why weren’t they helping people? Why were they hurting people? I don’t understand. How could that happen?”

And so began our family’s first discussion of racism.

We spoke of people’s fear of differences. We spoke about how fear and ignorance could lead to hatred, meanness, and even to violence. Our son had known that people were capable of doing bad things, that people hurt one another and sometimes even killed people. It was less than a year-and-a-half after 9/11, so this was not his first exposure to evil in our world.

But this was different. He was stuck on the police officers in the movie. He could not grasp how our protectors could harm someone. He could tell that it meant something very different that it wasn’t a few bad people that were hurting others – Doug and I could see that a foundational aspect of his understanding of the world was crumbling. He was seeing that evil could be systemic, that injustice – even violent and deadly injustice – could be in the fabric of a society. This realization shook him to his core.

At the time, we told him that the events in the movie had happened a long time ago. We told him that things had changed. We talked about the ways that our country was better now for everyone. We talked about the good that people did, how lucky we were to have the friends we had, how lucky we were to be living where we were and when we were, and how grateful we were to the people before us who fought for what was right so that everyone could live in a better world. We talked about how great a man Dr. King had been, and how he helped make our society kinder and more just. We talked about what we could do to make sure people are always treated right – that we needed to speak up and stand up for what is right, always to treat others with kindness, even if – especially if – people around us were not treating others kindly.

This is what we could think of at the time. This is how we comforted our child. And as we comforted our child, we comforted ourselves: the world had moved forward.

I went to the school the following morning to find out more about the movie so Doug and I could know better what exactly we needed to address with our son. I learned that it was an animated film that they showed to the whole elementary school annually around Martin Luther King Day – it was rated “G,” and the school had never before heard from a parent that a child had been disturbed by it. The teacher said  that Zachary must have a very strong imagination to have been so upset – she said that it was a cartoon about elementary school-aged kids and time travel, that there were some very brief news clips that went over the young students’ heads, and that the students had always enjoyed watching it. The principal lent me a copy of the video, and Doug and I watched the hour-long production, “Our Friend Martin,” that evening.

We saw that it was not Zachary’s imagination that had caused him such anguish.

At six years old, the time travel concepts had gone over his head, but not the interpersonal interactions nor the news clips. He saw and felt the inhumanity.

He was saddened and confused by friends’ turning on one another, by parental unkindness and school-sanctioned exclusion, by rules that made no sense, by the killing of a man who was helping others. And what caused the worst of his agony was what he saw in just a few seconds of film footage of the police yelling, turning fire hoses on people, and raising their sticks. He saw the hatred in their eyes and felt the cruelty in their actions, and he could not comprehend how that could exist in the people whose job was protecting others. He understood that this was extremely significant.

What a child of six registered was analogous to what a doctor sees when looking at blood cells that have gone awry.

He saw that parents, friends, and teachers, society’s red blood cells that are supposed to deliver oxygen, were not providing the love that normally sustains us. And he saw that the police officers, our society’s white blood cells that are supposed to protect us from infection, were attacking society’s own cells. A hematologic and immunologic nightmare. And while it is possible, in an acute setting, to provide a transfusion of red blood cells when needed (although it does not work well as a long-term solution), it can be a bit trickier to deal with an immune system that has turned on its own body – since autoimmune conditions and allergies arise from erroneously triggered overactivity, rather than from deficiencies that can be replenished, they can be difficult to stop. When a white cell sees a threat in something not dangerous, the body can be in true peril – we know all too well that allergic and autoimmune reactions can kill.

A body, like a society, is indescribably complex. There are countless more questions than answers, and rarely are there easy, universally effective fixes. But we study, we experiment, and we learn. Sometimes slowly, sometimes in amazing spurts of advancement, we evolve and improve our understanding and ability to heal what is ailing.

Medicine has come remarkably far in its ability to treat and prevent illness and injury because the field has focused on finding and fixing the root causes of ailments. Yes, we have developed treatments for symptoms of disease and injury, but our greatest advances have been in addressing the processes rather than bandaging or putting a salve on the results. And this is because we look to see what lies beneath the symptoms. We look at the patients. We look at x-rays, CT scans, and MRIs. We look at blood and tissues under a microscope. We do autopsies. We search for the causes so that we may find the cures.

Medicine has come remarkably far, but we have a long way to go. Although our life expectancies have increased dramatically, people still die far too young, and far too frequently, not only from accidents or from intentional violence, but also from natural causes.

Our society, in terms of civil rights, has come remarkably far. Even 14 years ago, the concept of children not being allowed to play together or go to school together because of their skin color, of this injustice being enshrined in school policy and enforced with violence by the police, was unfathomable to a six-year-old. We have come a long way from the times of separate lunch counters and separate drinking fountains.

But we have a long way to go.

We have, with laws, with education, with evolving social norms, fixed some of the most egregious symptoms of systemic racism. We have not eliminated the racism. We are far from having even mitigated many of its effects. And its effects are still sometimes fatal.

We have to see it. We have to see it in order to fix it.

When we try to excuse the tragedy, by pointing to reports that he had used marijuana, of a child murdered for walking through a neighborhood with a bag of candy, when we justify, by pointing out that he had been selling loose cigarettes, the murder of a man who repeatedly told officers he couldn’t breathe as they compressed his airway and held him down, when someone in a helicopter, watching an unarmed man hundreds of feet below, says, “that looks like a bad dude,” as another officer shortly thereafter shoots the unarmed man, when we don’t hear universal outrage at how long these people lie dying before anyone tries to help them, we aren’t seeing it.

We aren’t looking. We need to not only open our eyes to see the videos right in front of us, but we need to use x-rays, CT scans, MRIs, and microscopes. We need to perform autopsies – not on the bodies of the unarmed victims, but on the underlying process. While it may appear that some of the white blood cells are malfunctioning, white cells do not function in a vacuum – they are getting signals, in so many cases, to attack when there is no danger, to turn on their own pancreatic cells like occurs in Type 1 Diabetes, to respond to a peanut with an anaphylactic reaction.

It seems that right now, our society has, in effect, a low-to-moderate level inflammatory malignancy which triggers these and other reactions. The raging cancer of systemic racism that was so obvious just a few decades ago has been treated, resulting in a partial and variable remission. The chemotherapy of judicial and legislative action has knocked out some of the largest areas of disease burden – the police are no longer tasked with and ordered to remove people from eating at the wrong lunch counter. The targeted radiation therapy of education has enabled individuals to work on surgically excising incidences of racism when they are recognized.

But something remains and we are not seeing enough. We are not recognizing. Our detection capabilities are not where they need to be. We are not seeing our misplaced fears, our faulty immune reactions which are fueling a cycle of anger and deadly violence. We are not detecting the inflammation or the tumors. And one of our biggest blocks in this area is that we are not willing to do self-exams.

What are the self-exams we have been advised by our doctors to do? Breast exams and testicular exams. They are at first awkward and uncomfortable. They’re done on parts of our bodies that we tend to cover in public. We are shy about these areas, and these areas are physically sensitive. We tend not to seriously discuss these parts of ourselves or their exams with people of the opposite gender – women may discuss breasts or breast exams with other women, men may discuss testicles or testicular exams with other men, but we don’t tend to discuss these at the family dinner table. And because we are reticent even to discuss self-exams, we are frequently reticent to do them. We hold on to the awkwardness and we miss finding information that could save our lives.

When we don’t talk openly, we miss out on learning information that could save not only our own lives, but the lives of others as well. We need to talk about the lumps we find on ourselves. We need to describe exactly how they feel, how they move, how deep they are. We need to talk about whether we found them by chance or by concerted effort to look for them, or if someone else noticed something that caused us to look. When women hear men’s stories and men hear women’s stories, they learn about symptoms or feelings that could be a warning sign to their opposite-gendered friends or relatives, or even analogous to things going on in their own bodies.

We need to look. We need to feel. We need to talk. It doesn’t matter if it feels awkward. It needs to be done. We need to find the lumps. We need to evaluate them further with ultrasounds, and sometimes with CT scans or MRIs, and sometimes we need to biopsy them and prepare the biopsy samples with different stains and fixative agents and look under microscopes. And we need to figure out which of the lumps are benign and which are harmful, and if they are harmful how best and most safely to remove them. And also when they are harmful, we need to look for metastases and try to clear those as well.

A properly functioning immune system will recognize and destroy the majority of pathogens – bacteria, viruses, parasites – and it should recognize and destroy an occasional malignant cell. It should recognize and not harm its body’s own cells. It should recognize as harmless a particle of pollen or a walnut and should not release poisons to attack which put its own body in mortal danger.

We are complex. We don’t always function properly. So we need to be ever vigilant. We cannot remain silent. We cannot be reserved. We cannot stop speaking out loudly when we hear something dangerous.

We must keep looking – checking ourselves from head to toe, noticing suspicious moles on our loved ones’ skin. And when we see an obvious problem – a tumor, a misdirected immune response, an inflamed area – in ourselves or in our society, we need to address it. We cannot let racist/sexist/xenophobic/homophobic/prejudiced statements nor exhortations stand without refutation or repudiation, for all of these are truly, in effect, misanthropy, and feed on one another to harm us all.

Sometimes we will overreact. Sometimes we will do an invasive biopsy and find out that the lump is benign. Sometimes we will do a cardiac catheterization and find that there are no blockages. But not to look when there exists the presence of such ominous symptoms in our society is gross malpractice.

We need to quell our society’s low-level, simmering inflammation.

Yes, our country has moved and continues to move forward from the inhumanity and injustice that so shook my child when he first learned of it while watching a cartoon in his first grade classroom. But we have a long way to go. I hope we get far enough that when our three sons have children, our grandchildren will react with similar shock and disbelief to the hatred, fear, and violence that was still present in 2016.

Ready to Speak Out About Race

My heart is heavy and I am afraid, yet I am not the one who must fear for the life of her husband and sons because of the color of their skin.

I am sad and I am angry, yet people who look like me are not the ones who are still experiencing the lethal effects of systemic racism.

My sons, ages 20, 18 and 15, are outraged and devastated, incredulous and indignant, questioning and searching, while they understand fully that they are in positions of privilege due to our societal advantage of having lower dermal melanin levels than others.

My husband is distressed and discouraged, though he knows that he and I and our sons could not have anywhere near the level of distress of those with darker skin.

We are not currently the targets here, but this is our fight. It is our fight because we are human. Because this is our country. Because we all need to be better than this. Because people are dying.

Because I am a doctor, this is specifically my fight. I chose to go into medicine because I want to help people. I want to help keep them from getting sick or injured, to help heal them when they do become sick or injured, and to help ease their pain and suffering whether or not they can be healed.

People are being hurt and I need to help.

The best way I know how to help here is to speak and to write. I have listened and read, and now I am ready to talk. In my next post, I have a story to tell.

Seeing a Person You Love in a Number

A friend posted an article on her Facebook page discussing a recent research study out of Sweden showing that people on the autism spectrum have a decreased life expectancy. This friend has a child with autism. Autism coupled with learning disability, according to this study, is associated with the largest decrease in life expectancy. This friend’s child has learning disabilities along with autism.

My friend is scared.

On top of her worries about social isolation of her child due to her conditions, on top of worrying about her child’s place in society as she becomes an adult, on top of the fears of every parent about their children’s health and wellbeing and risks in general, my friend has had dumped on her frightening data clearly relating specifically to her daughter.

Only it doesn’t relate specifically to her daughter.

It is an aggregation of data that compares medical and mortality statistics of a pool of 27 thousand people with autism with that of a comparison group of 2-and-a-half million people without diagnoses of autism. It is not specifically about my friend’s child.

But it is about my friend’s child, because it is about every person with autism.

That’s the thing about statistics. They are about everyone, yet they are about no one in particular. That’s an aspect of practicing medicine in a world full of data that is particularly challenging, fascinating, and maddening. And people not practicing medicine have a similarly challenging, fascinating, and maddening time navigating this world of information.

Problem is, humans are extraordinarily complex. First, there’s the biological complexity of any multicellular organism, the variability due to genetics, the effects of environment, the interplay of internal and external forces. Then there’s psychology – individual predilections, societal influences – and how much of each of those is due to inborn versus external influences of the individual or of the interacting individuals of society? Even seemingly simple questions can become metaphysical – why are x and y correlated? Does x cause y? Does y cause x? Does a third thing cause both x and y? Do the combination of a third, forth, and fifth thing cause x under some conditions and y under a different set of conditions, some of which overlap the conditions which predispose x to be affected? Is there something inherent in x or y or both that lead to their association? What, if anything about the properties of x or y or the conditions that combine to give rise to certain outcomes are modifiable?

If my patient or my child or my neighbor ostensibly fits into a category being described in a general news article reporting on a scientific study, how much weight and credence do I give to it? What about a medical or scientific journal article? Does that specific person truly fit that category? If so, in what ways? In what ways does he not exactly fit? How important is the closeness of the fit? Even if a seemingly perfect fit, what does that actually mean for a specific individual? What exactly did the researchers look at? What did they miss?

The autism mortality article wasn’t meant for my friend. It wasn’t meant for the parent of a specific child with autism. It wasn’t written to alarm her. It was meant for society. It was meant for those who would influence the allocation of funds for medical research and social policy development.

Which means that the article was meant for my friend – a parent of a specific child with autism, a person who advocates for funding of research and services and societal support. It was meant to alarm/alert all of us, and my friend is one of all of us.

My job as a doctor is to take data and apply it to real people. To dissect the data, to judge the quality of research, to integrate it with what makes scientific and physiologic sense, to humanize it. My job as a friend, a neighbor, a family member, a general citizen of Earth, is to comfort and support others. So here is my reaction to that particular article as it relates to the person who posted it and to her daughter:

The article refers to a correlational study looking at aggregate numbers. Although the numbers and conclusions are laid out as straightforward, the actual data and meaning are exceedingly complicated. The study is a start, a call to look more closely at an overall population and see where dangers are. It is a study of averages – it is not a study of individuals. It leaves ever so many more questions than answers. It does not know your daughter. It does not know you and your husband and your other children. It does not know your child’s teachers or doctors. It does not know your social supports. Although this study does not know all of the above, it can help you as it draws attention to necessary lines of inquiry regarding a population (of which your child is a member) that needs serious attention.

This study was done in Sweden. We do not know how the data extrapolate to other countries. Are there genetic or cultural characteristics in the overall Swedish population that could affect these data? The data showed different main causes of premature death in two different populations of those with autism – those with learning difficulties and those without. We do not know if these differences hold true globally, and we do not know what other differences or characteristics play a part.

There may be specific age-related spikes for the most common causes of mortality which could skew the data. Distribution of data points is extremely important to investigate, not just averages. At what else did the researchers look? At what did they not look?

There are people looking at important questions: How can we begin discerning the causes of the disparities? How can we ameliorate the causes?

So many questions. So few answers so far. So glad people are asking the questions that will lead us to information that will help individual people, and in turn will help a population at large. And sending strength to all who look at a headline with numbers and in those numbers can’t help but see the face of their child.

A link to the original abstract: Article in the British Journal of Psychiatry

A link to a discussion of the article by an autism research and advocacy charity in the UK: Autistica’s call to action piece

Missed Message

Two weeks ago, I did not say goodbye to my teacher.

He taught at a hospital where I had rotated as a medical student 20 years ago. He was there when I returned to that hospital for residency training years later. He was there when I returned to give guest lectures and work with residents. He was there, aged and ageless, whenever I returned.

Older than my parents, he had graduated from medical school in Calcutta almost ten years before I was born. Although he lived in the U.S. for many decades, he maintained his thick accent and foreign speech patterns, the paucity of words in his sentence structure leading to more power and meaning ascribed to each word he did utter.

Like the guru on the mountaintop, he hearkened to a sense of ancient wisdom, a sense of ultimate truth in tradition. He appreciated the clarity of an MRI and the insight of an ECG but never forgot the power of knowledge gained in the palpation of a pulse.

Two weeks ago, I did not say goodbye to my teacher.

He was a kind and gentle man, the archetype of the kindly, elderly doctor. I don’t think he generally made house calls, but one could certainly picture his doing so. In a world of technology and detail and research and speed, he reminded his students, the young doctors and doctors-in-training, of the importance of taking time – time to talk, time to touch, time to think.

Though patient, he was not without limit to his patience. I saw him get frustrated at times, although rarely. He felt the change in medicine, and the loss of humanity accompanying the gains in technology. He resented the computer in the room, taking the focus of the doctor away from the patient and onto the screen, taking the touch of the doctor away from the patient and onto the keyboard.

Two weeks ago, I did not say goodbye to my teacher.

We shared a love of writing, an appreciation for the power of words. When I shared my writing, he shared his poetry with me. Though sparse with words in his speech, not so was he with words in his poems. And although he was not verbose in conversation, he was ever present – understanding the connection possible in silence, in simple proximity, and with a simple touch.

“Feel the pulse,” he would always say to the residents and students. He drew diagrams of the upstroke and downstroke, labeling the points on the waves that corresponded to the opening and closing of valves, the contractions of chambers. He described the normal, the healthy, and the physical pathology that deviations from the expected wave palpation indicated. “What did you feel in the pulse?” he would ask as an intern ran through a litany of lab values and imaging reports, bringing that intern back to the patient.

Medical residency is difficult. One day, during a particularly difficult day of a particularly relentless week of a particularly rough rotational month of my residency, after a long night on call, I was exhausted, on the verge of tears, on the verge of passing out, and feeling every heartbeat in my chest. Not realizing what it was that I was feeling, not making the appropriate and reasonable connections in my head, I thought I was sick. He was rounding with my team. I asked him to please check my pulse. He took my arm in his hands and put his fingers on my wrist. “Pulse is fine,” he said. Then, “you are tired.” I nodded. “Sleep,” he said.

Two weeks ago, I did not say goodbye to my teacher.

Several years ago, during my last year of residency, he was in the hospital for about a week. I visited him every day, between patients and rounding and clinic and lectures. We talked a little about his wife and daughter, my husband and sons. We talked a little about reading and writing and poetry. Mostly we sat together quietly.

Two weeks ago, I did not say goodbye to my teacher.

An email came to my inbox from his email address two weeks ago. I was out and so opened it on my phone, on a tiny screen while in line at the grocery checkout late in the evening after a long day at work. The subject line was not clear and it had typos. Like so many spam emails from hijacked friends’ addresses, it said “please read.” I know better than to open emails that appear to be spam or phishing, but I opened it anyway. There was no text. No attachment. I made a mental note to email back at some point to say hi and to see if he had meant to email me something.

Two weeks ago, I did not say goodbye to my teacher.

Four nights ago, I was at my two younger sons’ high school jazz concert. It was lovely. I felt my phone do the text message buzz in my purse. Then I felt it again. And again. And again. I left it in my purse and listened to the music.

When I arrived home, I pulled out my phone and looked at it. My phone had buzzed so many times because I had been part of a group text that announced that my teacher had died that evening.

Two weeks ago, I did not say goodbye to my teacher.

I went to my computer. I scrolled back in my emails. I found the one from him. Unlike the tiny screen on my phone which truncated the subject line, the computer screen allowed me to read the whole line. With multiple misspellings, it said “please read poem.” It said “farewell.” It said “going home.” There was still no text in the message. There was still no attachment. All it said in the body was the auto generated “sent from my iPhone.”

The typos were from his typing on a screen as tiny as the one from which I originally had tried to read his message. The attachment technology had failed his fingers. And I had failed to get past the technology blips to the person who had reached out to me. I had not known he was ill. I had not felt the pulse.

Two weeks ago, I did not say goodbye to my teacher.

It is most likely that I will never see the poem he meant to send me. But I saw the “farewell” in the subject line. I know that the email was not address-hijacked spam. I know that this man of few words said goodbye to me. And I know that if I had heard his goodbye in time that we would have laughed and shaken our heads together over technology’s getting in the way of communication yet again.

Goodbye, Dr. Sil.

In memory of and appreciation for Dr. Anil Sil

Guilty of Avoiding Murder

Sometimes I’m not a great sister-in-law.

My husband’s brother, a theater professor, published a book last year – Murder Most Queer: The Homicidal Homosexual in the American Theater. The book is academic, yet it’s written so that a general audience can understand and follow.

We got the book as soon as it came out, and I began reading it immediately. And a little less than halfway in, I stopped.

A lot played into my stopping. The book is fascinating – it wasn’t boredom that stopped me. It is extremely well-written – the writing kept a hold of me. So why did I put the book down?

I put it down partway into the chapter that warned about spoilers. Many of the plays he discusses have twists and surprises that the author explores. I read through the section that included the play I had already seen (Deathtrap), and then paused my reading with a potential intent to read the other plays about which he would be speaking. Then I would return and finish the book.

But I knew I wouldn’t read those plays. Reading a play, at least to me, is nowhere near as good as watching it performed. And these are not plays that I will find produced locally.

Reading through the book would be an admission that I was not going to watch the plays. It would be a symbolic closing of a door onto the possibility of seeing those productions without knowing how they ended. It would cut off possibilities. And I don’t like cutting off possibilities.

But again, I knew I was unlikely to see the plays. And even if I did see any of them at some point, there is a very strong likelihood that I would not remember the plot twist or surprise ending I read about, since I generally can’t remember where I put my keys and I call my sons by the wrong name about 40% of the time. Truth is, the “spoiler alert break” allowed me to stop reading something painful to me.

Murder Most Queer is not a literary critique. It is an analysis within the context of sociology, exploring homophobic paradigms within our society. As I read the analyses, as I learned the histories, as I learned about the writers, performers, and audience members, I felt saddened and sickened by the forces behind the murders in the stories. I felt saddened and sickened by the outcasting of those that don’t fit into an accepted norm. It didn’t allow me my everyday denial of ickiness and my naïve and insulated little world of tolerance and acceptance. It made me uncomfortable. FYI, the book is not a downer – I just read into things. I don’t want to think about people I deeply love feeling like they are villainized or ostracized because of their sexual orientation. I want to think that era is close to over. I don’t want to think about societal disdain translating into self-hatred.

So I jumped on the excuse of not wanting to ruin the endings of plays I knew I would likely never see.

By doing this, I denied my brother-in-law the decency of a “hey, I finished your book – it’s amazing!” phone call. Which is really a big thing. Writing a book is no easy task, let alone the process of publishing. Even when academic, it is an emotional process. And reflecting on a society that can be so filled with hate is difficult, even when the plays themselves many times are simply fun and cathartic. He knew I had started the book (since I had happily told him about how much I was loving it when it first arrived), so what was he to think of never getting that “closure” call? Hopefully he chalked it up to my being a theatrically uncultured boob and not to my not liking his work.

My colleagues and I frequently marvel at the denial of some of our patients and their families. People ignore symptoms. They ignore risks. They ignore prognoses and likely outcomes. They avoid what is not easy or what makes them uncomfortable, and by doing so put themselves in positions not to be healthy or not to get the most out of their lives. Rather than confronting the discomfort or the fear, they hide and end up missing out – on health, on time, on quality of life.

This week, I picked up the book again. I finished it this evening – just in time to be able to say, when my brother-in-law walks in the door tomorrow to spend Thanksgiving with us, “Hey, I finished your book – it’s amazing!” There are storylines I’ve learned, shows I want to see, writers and actors I want to Google and YouTube, and ideas I want to discuss.

To my husband’s brother – thank you for, as always, educating me and opening my eyes. I apologize for being a lousy sister-in-law, and I hope that dinner on Thursday will help make up for it a bit.

Hold the Phones for the Well-Grounded

It’s been a while since I’ve posted. I’ve been busy. And I’ve been thinking so much about so many different things that I haven’t really been able (or, more aptly, willing) to sit down and pick one thought and write.

As I mentioned, I’ve been busy. And while in the car between one busy and the next, I listen to the news. So I go from busy to stressed-about-the-state-of-the-world to busy to stressed-about-the-state-of-the-world to busy…….

And tonight, just for an hour or so, I have some down time. So I was going to relax. The boys are at a jazz rehearsal, my husband is running a couple errands on his way home from work, and all I want to do is watch a couple of sit-com reruns and relax in front of bad acting and a laugh track.

But I can’t figure out how to turn on the f@$king TV. We have about 5 remotes, each with about a thousand buttons, and no combination is just turning on the tube. I don’t want the Blu Ray player. I don’t need it to go through our 30-some-year-old-speaker-system-set-up-by-my-engineer-husband-to-be-surround-sound. I don’t want the PlayStation to turn on. I just want to watch some f@%king TV. And I can’t. I can manage the health of patients with two dozen concurrent medical issues but I can’t figure out how to turn on the damn television.

So I’m writing.

Just one week ago tonight, we took away the cellphones of our two youngest sons for three days. They really pissed us off, so we imposed consequences. They blatantly defied what we had told them to do.

Our kids pretty much never defy us. They’re ridiculously reasonable people with common sense and good heads on their shoulders. So we expected that when we specifically said “come straight home after rehearsal,” that they would do so.

But they didn’t.

Their rehearsal for this particular jazz ensemble occurs about twice a month and is about an hour away. In Ann Arbor. About a mile from our oldest son’s dorm.

And that’s why our younger two defied us. They went to see and hang out and study/do homework for 45 minutes in the student union with our oldest.

They had done so after their few previous other rehearsals out there. And when they had left the house last week as I was telling them to come straight home, they laughed and said “sure, by way of the Union,” and I laughed and said “no, by way of straight home.”

It was a school night. It was late. It was reasonable to ask them to head directly back. They didn’t listen. And my husband and I were angry that they hadn’t done what we told them to do. When we called our youngest’s cellphone to check on their whereabouts around the time we thought they’d be getting home, he told us they were sitting and doing homework with our oldest. We told them to head to the car and drive carefully home.

They did.

And when they walked in the door, we told them to hand over their cellphones.

They did.

And they didn’t utter a word of protest.

My husband and I expressed our displeasure with their choice. We lectured about all the reasons they should not have done what they did.

They didn’t argue.

The next day, our middle son came home from school during lunchtime. I said, “We need to talk.” And he said, “Yep.” And we sat down.

I started. “You know, we let you do an awful lot. We don’t put a lot of restrictions on you. That’s because we trust you. You’ve earned that trust. You’re a good person. You make good decisions. And last night you were not where we expected you to be. It was late, and you had woken up early in the morning and had been up late the night before.”

“I know, Mom,” he replied. “But here’s the thing. We were completely safe the entire time. We went straight from rehearsal to be with an adult member of our family. And we sat and did homework with him. I wasn’t tired – you know that on every car trip we’ve ever taken, when I’ve been tired I haven’t driven – I’ve stopped and asked someone else to take over. I would never drive tired. I know it’s as dangerous as driving drunk, which I also would never do. I knew that I felt awake. I would not have put myself or my little brother in danger by driving tired.”

“That may all very well be true,” I said, “but you defied me. And I thought you were almost home when you were actually 50 miles away.”

“I know, “ he responded, “and I’m sorry about that. And you were perfectly justified in taking my phone. It was worth losing my phone. I was a mile from my brother, and I wasn’t not going to see him.”

There was something in his voice as he said this last sentence. And there was something in his eyes, and in his jaw. I looked at him. “You really miss him,” I said softly. “Yes. Of course I do,” he said.

And there it was. That was the drive – not to rebel against authority, not to eat fast food in the Union’s food court, but to be with an older brother who used to be there every day but now isn’t, who even though we see him regularly doesn’t really live with us anymore.

“I get it,” I told my middle son.

I had a very similar conversation with our youngest when he came home from school.

The motivation was clear. The depth of the urge was significant. The risk was calculated. Their decision was really not surprising when you think about it for even a second.

We still held onto their phones for a couple days. We had a point to make. But tonight we didn’t tell the boys to come straight home. They have their backpacks with them. They will hang out with their brother. They will be their triplet whole and they will laugh with one another as they do homework and insult one another as they hug goodbye.

And somewhat strangely, I’m happy we’ve raised sons who don’t listen to us every single time. They’ve listened to and absorbed the value of family, they love one another, and they’re willing to give up their electronic social lifelines for a face-to-face connection with their brother.

And I’m happy I couldn’t figure out how to turn on the television. It feels good to write.

Baby, It’s Hot Outside. And Inside.

So on Friday evening I was sitting at the computer, minding my own business, when out of nowhere I was hit with a peculiar feeling.

“It’s ridiculously hot in here,” I said to my husband. “Did the A/C just stop working? What is going on?”

“It’s really not hot in here,” he replied. “No, it’s not, Mom,” my 14-year-old son agreed.

They were both obviously wrong. It felt like Death Valley. I was certain the air conditioner had gone haywire and had begun spewing out hot air. Maybe the two of them had fevers and were chilled.

I began flapping my shirt to cool myself off. It helped a little, but not much. So I flapped it harder.

My husband reached out and touched my leg. “You feel cool,” he said. “You’re fine.”

I told him to touch the back of my neck, which was at this point drenched with sweat.  “Oh my god! What’s wrong with you?” was his kind and empathetic response.

“I don’t know,” I answered, “but I feel like I need to rip all my clothes off, right now!” At which point my 14-year-old said, “That’s just too much information, Mom,” as he turned to leave the room with a look on his face of combined bewilderment, horror, and amusement.

And that’s when I realized what was happening. I turned to my husband – “Dougie, I think I’m having a hot flash.”

“Ohhhhh.” He buried himself in his smart phone for a minute. “Yup. It sounds like it.” As frequently happens when something health-related affects me or my family, my medical knowledge flew out the window. “How long will this last?” I asked him. “Hold on a sec, I’m checking with Dr. Google – it says anywhere from a couple minutes to quite a while.” He picked up a magazine and started fanning me as he took my hand and guided me toward an air conditioning vent (which, apparently, had been blowing full-blast this entire time – not that it did any good).

It was over in about 20 minutes.

And then a half-hour later, it happened again, but this time lasted only about 10 minutes.

And then I was back to normal. Fine the rest of the evening. Fine the next morning. So fine the next morning, in fact, and so full of energy, that I went out with my family to attack our weeds.

It had been a while since we had gone on the garden/lawn offensive. We were out there for hours. Filled six of those yard waste bags. Felt great. Neighborhood property values rebounded to where they should be.

And then on Sunday it hurt every time I moved. Arms hurt. Legs hurt. Shoulders hurt. Back hurt. Husband felt the same way. Kids were completely fine (and yes, they had worked the entire time with us).

So I woke up today and headed in to the clinic to see patients. I had survived the introductory temperature dysregulation of peri-menopause. I had survived the physical consequences of the war with the weeds and was feeling significantly less sore.

I arrived early, ready to start my day, and chatted a bit with one of the medical assistants in the office. She was talking about her son, three years old, and I asked to see a picture. She showed me a photo on her phone. I remarked on the child’s cuteness.

Then the medical assistant asked me if I had any children or grandchildren.

And that was the first time in my life I had been asked if I had grandchildren.

I very, very, very much want grandchildren in my future. And I am in my mid-40s – certainly old enough to be a grandmother. But I’ll let your imagination go where it may on what you think some of the thoughts running through my head might have been in response to that question.

I frequently tell my kids how I love each stage of life that I’ve reached, that life keeps getting richer and better. This is how I feel, deep down inside. I have earned every hot flash (although I’d be happy if they didn’t return), every gray hair, and every wimpy-muscle-that-rebels-after-a-few-hours-ripping-out-weeds. I’ve made peace with the fact that it has been years since I’ve been carded. I’m delighted to be in the no-drama, don’t-take-crap-from-anyone phase of life.

But I would advise people to ask me about my children. And when I do have grandchildren, I would politely ask that you react in surprise to such news and remark on how young I look to be a grandmother. And please turn up the air conditioning.

Scratching the Surface of my Response to the Latest Horror

I’ve been busy. And I had started writing a draft about time management and lines and waiting. But that will, ironically, have to wait.

Because I cannot not write about what just happened in South Carolina.

This despicable act of unfettered evil brings up the worst thoughts in me.

The thought that has not left me since the news broke about the massacre is that I would like the monster that perpetrated this horrific act to be dead.

I wanted him to have been found dead by a self-inflicted bullet wound, or to have been killed in a standoff while being apprehended. But he was not.

He was found and was quietly arrested.

I had not wanted him to be alive. I did not want a being with such disregard for human life to be walking among us. To be breathing the same air that we breathe. To have the opportunity for laughter.

I cannot bring myself to call him human. I find myself regarding him as an animal. A vicious animal.

And I do not like the existence of these thoughts in myself.

I do not like that I can so fully deny someone’s humanity. Or that the sanctity of life is not absolute in my mind.

And I do not like that I also do not have the strength, even when I believe there is pure evil, to be in favor of killing this monster now.

I do believe that there can be times to kill. Had I been there, in that church, with a loaded gun and a clear shot, I would not have had any moral compunction in pulling the trigger. But there is a difference between self-defense (or defense of others) and retribution.

I wish he were dead. But I cannot shake the thought that someone throwing the switch loses some of their own humanity in the process of doing so, and becomes closer to becoming the monster.

And I cannot shake the thought that not throwing the switch takes away some of the humanity of those who must morally answer to the families of the victims.

Once the evil is out there, it cannot be undone. It cannot be erased. There is no fitting retribution. There is no fitting rise above retribution.

Some problems have no fitting solutions.

I am sad. I am angry. I am physically nauseated.

And I am overwhelmed.

Overwhelmed with disgust that there are segments of society which provide a fertile ground for hatred and racism to grow.

And overwhelmed with the suspicion that this evil being could very well have come into existence without a fertile hate-filled growth environment – that there can exist evil by itself, with no explanations or excuses.

Overwhelmed with the failure of humanity, which I deeply believe is overwhelmingly good, to have not come further in vanquishing barbarity and corruption.

Overwhelmed with shame at some of the fundamental history of my country, and overwhelmed by a feeling of incompetence for not knowing how to heal it.

To the families and friends of the victims, my heart goes out to you fully. May you some day find peace.

And please, please, please, may the societal devaluing of life crumble upon itself so that we all can climb upon the ruins of hatred to reach the place we need to be.

Mother’s Day 2015

Today I am reminded, as I frequently am, of my exceedingly good fortune. I both have a remarkable woman as my mother and am mother to three spectacular human beings. As a bonus, I have a fantastic mother-in-law.

In honor of Mother’s Day, I will share a tiny bit of what I have learned from my own mother, from my husband’s mother, and from being a mother.

From Mom:

-Always say “please” and “thank you.”

-If your friends don’t treat you well, then find new friends.

-Wounds heal.

-Shit is water soluble.

From Mom-in-Law:

-Significantly different parenting styles and personalities can result in equally successful offspring outcomes.

-For goodness sake, it’s just a spider.

From being a mom:

-When a frisbee gets stuck on top of a high hedge, using a snow shovel to try to scoop it off tends to push it deeper into the shrub. Get a hockey stick and poke it up and out from underneath.

Wishing everyone a happy Mother’s Day. I highly suggest incorporating french toast somewhere into today’s menu.

Pet Parallels in End-of-Life Matters

(Note to my children – do not read this. Other people who are close to me – you probably want to skip it, as well.)

It has taken me almost two years to be able to write this. We said goodbye to our beloved dog in early May of 2013. I grieved for well over a year.

About a month-and-a-half prior to his death, we had a big medical scare with him. I wrote at that time about how dealing with a veterinary emergency can provide us with some insights and practice parallels to dealing with human medical crises (Pet Practice). A veterinary crisis also has definite parallels to human end-of-life issues, and can highlight ethical concerns as well.

He was an older dog – old enough that my husband and I would occasionally mention animals’ life expectancies in front of our kids. The boys were well aware of what we were doing: “Mom, Dad, we know dogs don’t live as long as people, and you’re obviously trying to prepare us, but it’s totally going to suck when it happens, whether or not you remind us of how long dogs live.”

So he was older, slowing down in general, with a seizure disorder which had developed in his later years and was generally kept in check with medications (with one episode of multiple breakthroughs a month or two earlier), but reasonably active and happy overall.

The big scare I mentioned above came on pretty suddenly. He became progressively ill over the course of a day, and I brought him to the vet, who did a thorough exam and extensive lab work. It didn’t look good – obstructive biliary disease – and we were referred to a veterinary specialist for an ultrasound, expecting that it would show cancer.

I filled the family in on the details of what was happening, and I took him in for the imaging study. The ultrasound did not show cancer, but elucidated an issue that would be rapidly fatal if not addressed with emergent surgery.

I called my husband. Our dog was old. We didn’t have spare thousands of dollars lying around. We loved our dog. Our children loved our dog.

We happen to live about an hour-and-a-half away from one of the best veterinary schools in the country. I called them and told them what was happening. They said that we could bring our dog out there, and their estimate on the surgical cost was a bit lower than our local place.

I called my husband back. We talked again. Yes, our dog was on in years, but this was fixable. He could have a couple good years left in him. We would figure out a way to cover the cost. I brought him to the boys so they could give him a hug, and then I took him out to the veterinary school’s emergency clinic.

I brought the ultrasound disk and the lab results with me. They looked at everything, concurred with the diagnosis, and agreed that surgery was a reasonable option. “The other vet did tell you that the mortality rate for this surgery is about 30 to 35%, right?” Uh, no. No, he didn’t. How could I not have asked that?

I wasn’t going to change plans now. The odds were still in his favor, even if not what I had assumed. I gave him a kiss, signed the release forms, and gave the front desk my credit card.

And it worked. The surgery, though complicated, went well. He recovered. Within a few weeks, he was prancing and bounding and chasing rabbits like he did when he was much younger. We were so happy – we knew we had made the right decision. We played joyfully with him over the next few weeks.

And then he started seizing. Not just one breakthrough, but multiple. I brought him in. The vet upped his anti-seizure medications. He lost bladder control with the seizures, so I slept in the kitchen with him for the next two nights. He had more seizures. And his post-ictal (post-seizure) agitation kept increasing. It got worse through the next evening. His vet said there was nothing more he could do, and he sent us to the emergency clinic, which had a veterinary neurologist on staff.

The vet who was on duty that night in the emergency/specialty clinic was very kind. She said that it didn’t look good, but we were not without hope. She assured me they would do what they could overnight, she would keep me posted and I could come back in the morning to speak with the neurologist when he arrived.

So I headed back there the next morning. The neurologist said he recommended an MRI, since his seizure history sounded consistent with a brain tumor. The MRI would cost two thousand dollars. And then if it did show a tumor, and if it looked operable, we would have to decide whether to pay for and put him through brain surgery to remove it. He also said he had one other thing to try with medications.

I talked to our regular vet (a very smart man who had always given us sound guidance and advice), and he said that our dog had been through so much, that the prognosis was grim, and that if it were his dog he would not do surgery or the MRI (which would require anesthesia). I talked to my husband. We decided to give the neurologist’s pharmaceutical idea a try.

It didn’t work. The updates from the veterinary hospital throughout the day were very bad. We knew what had to happen. We told the boys, and we took them with us to the hospital so we could all say goodbye. It was a sad, tear-filled car ride.

They brought our doggie into a room with us. It was awful. He was horribly agitated, and he had lost his sight. He really didn’t show much, if any, sign of recognizing us. After hugging and petting him as much as and as best we could and saying what we needed to say, I told my husband and boys to wait in the waiting room. My husband wouldn’t leave me. The boys (12, 15 and 17 at the time) said they’d be ok and went out of the room together.

And then it was time. The vet gave me euthanasia consent papers to sign. I don’t remember exactly what they said, but I think I recall acknowledging the finality of the decision. And then it was really time. The vet asked if I wanted to stay. I said yes. I told my husband he didn’t have to stay, but he would not let me stay alone.

It was so very awful. So very, very awful. Our dog was clearly suffering. His agitation was severe – it had not been alleviated by any of the medications. I will skip the full play-by-play of the final actions, but I will describe a bit of what went through my mind.

“I have to be here. I have to stay here. Good pet owners stay until the end. I don’t want my husband to have to see this. I’m the doctor. I should be stronger than this. What am I doing? Why am I doing this? Am I doing the wrong thing? What if this is fixable? How much did money play into this decision? What kind of a monster am I? How can I do this to my family? Did I make this decision to stop him from suffering or did I make it to prevent me from suffering as I watch him? How can I do this? How can I not do this? Oh God, it’s done. What have I done?”

I stayed as long as I could, with my hand on his fur and my husband’s hand holding me. Then I had to get up. I had to go to the door. I kept talking to our sweet puppy dog. The vet still had her stethoscope on him. He had stopped breathing minutes prior but probably still had a few slow heartbeats left, but I just couldn’t stay any longer. I failed him in those last few seconds. He wasn’t alone, but it was someone else’s hand on him at the very end. The vet had no choice – she had to stay.

They handed us the bill at the front desk. We gave them our credit card.

We gathered our boys, held one another, and had a silent, tearful car ride home.

We grieved. And we recovered. But it took me a long time to recover.

This was a dog. Yes, he was our dog, our pet, a “member of our family,” but he was a dog, not a person. Yes, we all tend to anthropomorphize our pets, but I was not grieving his loss as I would grieve a person. We develop strong emotional attachments to our pets, and they symbolize responsibility, loyalty, and innocence. That wasn’t all of it. It was more complicated. It was much worse than when I had grieved dogs in the past as a child and teenager (and those previous times certainly hadn’t been easy).

I’m a doctor. I keep coming back to this. A big part of why I went into medicine was to prevent death. To promote life. To promote good health. To help give quality to life. And, when not possible to do the aforementioned, then to help support patients and their families through the loss of life. I have been with patients and their families numerous times at the very end of a life. It has been at times when my colleagues and I did everything we could to save a person but were not able. It has been at times when someone has chosen not to be resuscitated or to have “extraordinary measures” taken. It has been at times when the choice was to focus only on easing any pain at the end of life. It has been when removing life support. Some of those times were peaceful, and some of those times were frantic. But never, during any of those instances, did I myself do (nor write an order for someone else to do) something with the express purpose of stopping a heart. Even when removing  someone from ventilator support, we were removing a breath-sustaining machine (and therefore a life-sustaining machine), but the person’s respiratory system had already failed on its own – we were not purposefully making a person who was spontaneously breathing stop that breathing.

Almost two years ago, I signed papers authorizing a veterinarian to kill my dog. We use the word “euthanize” (“eu” meaning “good”, “than” meaning death, translating to a word that means “to kill painlessly,” generally to relieve suffering), which sounds much better than “kill,” but it doesn’t change what is done. Our vet told us we had chosen compassionately. In all reality, it probably would have been cruel to allow an animal to continue to suffer indefinitely with no understanding of what was happening, and it is not financially feasibly to put an animal on the comfort measures that we afford people at the end of life – our choice is a much harsher one with our pets. But still, I signed the papers to stop his breathing. What if I was wrong? I did not handle well the thought that I had chosen to end his life and that I could have made the incorrect choice. When I failed him in those final seconds, it was because I had failed myself. I second-guessed my thought process. I questioned my motives. I felt unworthy of him.

Those feelings hung with me heavily. There was an intense, deep feeling of guilt. Honestly, my really wrong decision probably was to have had him go through that surgery when he was so ill that month-and-a-half prior. It would have been a peaceful death if we had opted out of that surgery. There was nothing about the way he ended up dying that was peaceful. If only we had known then what was going to happen six weeks later.

People lament how much money we spend on medical care in people’s last few months of life. Policy experts and politicians look at the numbers and say we are wasting money and resources. People lament how so many people end up dying hooked up to machines in hospitals when they would much rather have died peacefully at home. But the vast majority of time I was working in a hospital, caring for people at the end of their lives, we had not known it would be the end. Surgeons did not usually advise surgery if they thought a patient was not going to live. We did not give people ventilator support with the expectation that they would not recover. And most of our patients did survive and return home, and get to celebrate another holiday or wedding with their families, and see more sunsets, and sing more songs – how many sunsets, how many songs are worth the cost of that care? More than once, even when an outlook was grim and we expected the worst, a person surprised us and recovered well beyond what we would have expected. And sometimes a person who we had expected to do well’s last moments were on a ventilator or with people pushing on her chest during CPR. We spend those resources and efforts at the end because we don’t know it’s the end.

We don’t know everything. And it’s really hard not to know everything. Especially when you’re the person who is supposed to have the answers.