The call room

I’m on a 24-hr call. I’m sitting in the small, windowless room that serves as our sleeping space on call, in which can be found a computer (of course a computer, always a computer), a bottle of Purrell foam, a red-topped canister of Sani-Cloths Plus germicidal wipes which features on its front a picture of both an adult and a baby with a red line through them as if to say: not for use by either diapered or continent humans, a programmable safe like the ones you find in hotels (as if anything of value really exists in this life beyond your own breath), a desk lamp that doesn’t work, a bulletin board with no tacks, a breast pump, and a bed made in all white with one thin fitted sheet, one thin flat sheet, one thin blanket, and one thin pillow in a thin pillowcase, as if to say: so too will your sleep here be thin. The walls are blank. The overhead light is bright and garish, but someone, in a touch of gentleness for which I am always grateful, decided to install a wall sconce with a soft, low light. So the inevitable calls do not wrench you from quiet darkness all the way into hospital fluorescence. Instead you flip on the mood sconce which affords just enough light to log in to the computer. Always the computer.

I’ve been taking 24 hour call for several years now — in total I’ve probably done it somewhere between 100-150 times, but every time I’m awake for almost an entire turn of the Earth, it’s newly shocking. The most challenging part of call is the way your physical being can be stretched, like a round of dough that you roll thinner and thinner until a hole opens up in it, but the hole almost never opens up, because you are trained to cohere. When I am on call, it is evident to me that the mind is a part of the physical realm, as susceptible to fatigue as the gastrocnemius or the bicep. The spaces between your thoughts get longer and longer. The two ends of the circle of a thought suddenly, for a split second, don’t meet. And then you force them to meet again and continue on.

The interesting thing about working in the ICU for 24 hours is that it is when you are in the best position to understand the lived experience of your patients’ families. They are at the bedside at all hours of the day and night, sleeping on cold, vinyl recliners under the same thin sheets and blankets. They may or may not be in fresh clothes in the morning. They might have had a granola bar for dinner and then again for breakfast. No one can ever truly understand the way it feels to keep vigil over a beloved, sick child until such a thing happens, and may it happen to as few people as possible. But in my 20th hour of being awake, my hair flying out in every direction in rebellion from my ponytail, my scrubs crumpled and stained, when I come to a bedside for the umpteenth time and there again is the mother, in an oversize man’s T-shirt and no make-up, knitting a pink hat as her tiny baby’s rib cage is expanded and contracted forty times a minute by a ventilator, I feel that we have at least shared a small leg of the journey. When I’m on for 24 hours, we can write the narrative of that day together, whether it’s the first or the last or just one of a number that we all hope will be uncountable. This is one of the reasons I count call among my secret sacred rituals: because why should you always get to go home when they do not.

It’s 12:57am now, and every word written is a second of lost sleep. Outside the call room, workmen are painting some kind of chemical on the floors. I am reminded that all kinds of people work at night, for all kinds of reasons — there is really nothing all that special about it. The chemical is irritating my mildly asthmatic lungs and in the light fog of call I am perseverating on the possibility that I will be poisoned in my sleep. I open the door to inquire about the chemical and find that they have strung masking tape across the door jam at eye level and again at hip level, such that I am unable to exit. My most visceral association is with police caution tape and for a moment I entertain the question of whether, in this imaginary universe, I am the criminal or the corpse.  “But I have to respond to codes!” I say, which is really just my cover for the claustrophobia that the tape evokes. “Sorry,” the man says. “Those are the regulations. So you don’t fall.” I am flummoxed. Are people getting taped into their call rooms all over the hospital, I wonder? Is there a job aid that stipulates how many pieces of masking tape are required to barricade the average medical provider? But he has his imperatives and I have come to learn when a thing is just not going to change. I close the door again and it’s back to the temporary universe of my call room, the room that is everyone’s and no one’s, to await the next inevitable thing.

Every day

I haven’t written in a long time.

This is how writing always starts for me, with an apology for not having written sooner. I don’t know what that’s about, the deferral and the delay, the email that is left in the inbox a few days (or weeks) too long, the stories and ideas that sit in the on-deck circle of my mind as the earth spins around itself and then around the sun, unwritten, undone. It’s on a long list of things that I’d like to change about myself, that I try to change about myself, that I may never quite manage to change about myself. Things always happen for me in ebbs and flows. There are long periods of constant accomplishment followed by a day when it takes me three hours to get dressed in the morning, periods of thrift followed by a lethal trip to IKEA, a sense of all being right in the world alternating with the sense that the quest stands on the edge of a knife. In the midst of it all, there’s almost nothing, other than eating, peeing, and thinking of my family with love, that I consistently do every single day, or on a schedule at all. Because my job is what it is, I can’t even put sleeping on that list, because sleeping is not something I necessarily do in every 24 hour period. Each of my days feels like it is invented from scratch.

I went to an Integrative Medicine conference two weeks ago which was dreamy, in the sense that I was surrounded by people who are interested not only in making people better, but also making their lives better, and also making our own lives better. The issue of physician wellness came up a lot. On the one hand, we are an infinitely privileged group of people and what can people possibly complain about who are eating organic steel cut oats and fresh strawberries on a resort veranda in the cool desert morning?  On the other hand, so many people spoke of burnout, of struggling to provide good care in a system more concerned with efficiency and documentation, of seeing numbness and dis-ease in their colleagues and trainees, of finding the weight of the world’s unsolvable problems too heavy to bear, of bearing the heaviness of the world with grace but wondering, deep down, about what good medicine might truly look like. It was good to remember what I had dreamed of, when I started on this path. And to know that other people still dream of it.

As part of the conference, several people gave mini-TED talks, two of which centered on the concept of daily practices — in one case a daily gratitude practice, in the other a daily practice of writing morning pages, a practice suggested by Julia Cameron in her book “The Artist’s Way.” Each of the speakers had been doing their daily practice for over a year. And each of them spoke about the profundity of practice, of doing the thing every day no matter what.

I belong to a number of different cohorts that espouse daily practice. I’m Jewish, to begin with, and if you practice Judaism to the letter of the law, your day is one long daily practice of prayers and blessings and prescribed acts. Then there’s meditation and more broadly mindfulness, which I’ve been dancing with for more than a decade. I’m mindful every day, but I don’t meditate every day and that is without question the recommendation. Then there’s writing. Most people who are serious about writing — or any art practice — do it every day or most days.  (People who talk about their daily practices don’t often make fully clear whether it’s truly EVERY DAY or just most days, and even though the stickler in me kinda wants to ask, maybe it doesn’t fully matter, because either one would be progress.) So I’ve become adept at feeling guilty about my daily non-doing in multiple of life’s domains.

I had a wellness session with a few of the interns this week. We watched a TED talk together about the power of positive psychology. We talked a bit about the research presented in the talk that shows that by doing something positive for two minutes everyday for 21 days, you can retrain the way your brain thinks. I’m kind of allergic to the whole notion of the “21 day fix” because it implies that there is something that needs fixing (I’m doing the best I can and it’s pretty damn good, thank you very much!) and that anything that needs fixing could really be changed in 21 days. As a concept, it seems (very) reductive and simplistic. But on the other hand, I’VE NEVER BEEN ABLE TO DO IT. So who am I to say it isn’t true? Maybe it really is that simple.

We broke into small groups and talked about what we might try to do every day for the next 21 days. I promised to write every day. Then I didn’t write that day, Friday, or the next day, Saturday. Now it’s Sunday, and I’m writing. So I’m not sure whether to classify this as a failure or a success. I’m not sure if it’s day 3 or day 1. But regardless it feels so good, like an awesome first date that is also tea with an old friend. Because it’s been so long, but sentences are still a sweet road to understanding.

So I guess I’m going to try to write every day. 21 days. Just 21 days! It feels insurmountable. Right now, for example, my daughter’s nap has gone on longer than it should have. There are some work emails I haven’t answered that will have to wait a little longer because I was writing this instead. Two minutes isn’t really a feasible time frame for writing, so what I’m committing to is more significant than that. But if I can do it, I’m pretty sure I’ll be glad I did. And if I don’t make it every day, maybe I’ll make it most days, and that would still be a lot.

Anyone want to join me? Write the thing you are going to do every day for 21 days in the comments and we can check in on each other and see how it’s going and then in the end, we can see how it went, and maybe we’ll even keep going.

Anew

Can it really be six months since I last wrote? There is this perpetual sense of the days and weeks and months tumbling out of my hands like so many marbles covered in margarine. They cannot be grasped. I keep trying to send down an anchor, to carve out a quiet homestead for myself in the wilds of all the things that must or could or should be done. If I just get the house organized, I am always thinking to myself, then it’ll all fall into place. Meanwhile things both large and small are happening: Residency ended and I started a new job. We bought a house and moved into it. C has a stable job situation for this year and we’re the most relaxed we’ve been since before I started medical school. We’ve been eating lots of salad and going for walks together and instead of me collapsing into an insensate, dreamless sleep at 8pm and C working until midnight every night to make up for the long days of solo parenting, we go to bed together and it’s the sweetest. Last Friday, I got home at 8pm after a wonderful, tiring second week of being an attending and E and I had a rocking dance party courtesy of YouTube. It was the first time in a long while that I completely forgot myself in the moment. I was just a body and a smile and a beating heart. We spun and spun and spun around each other. C was watching — the perpetual sole audience member for our crazy dances — and I did a little (extremely tame) strip tease for her which mainly consisted of removing my stethoscope and hospital badge. The song “Uptown Funk” came on, which we used to time compressions during CPR simulations in the ED, and there it all was: love and sex and death and all the extreme things I have witnessed and the crazy privilege of being there for others at the borderlines of life and the feeling of having no escape from the intensity of that. And, since I’m a parent and a pediatrician, running through it all, the awesome sense of responsibility for the gift of a child, and the pleasure in it.

It’s been a puzzling time. Things have unequivocally improved: I’m working so many fewer hours. I’m getting paid more. I have more time with my family. I enjoy my job. But I’m still waking up in the morning with a sore jaw and a sore neck from the worries that don’t sleep. There’s this new anxiety that stems from not being in survival mode all the time. During residency, I was just trying to make it through. I didn’t expect much of the months: Just to do a good job at my job and to take some delight in my family. If money ran out before the next paycheck, there was a credit card and a nod to some future pay-off. Now, there are so many things I want to do, so many ways I want to be better, so many thirsty parts of myself that haven’t been watered in so long. After three years of chronic pain, my body is in desperate need of concerted attention. I want to be more involved in all the communities I belong to. I want to write more and build out a professional niche for myself that feels authentic. I want to feel like I have some control over my finances. I want to finally get better at keeping up with email and be much more organized. I feel accountable to myself in a new way and so, oddly, though everything is better, I’m feeling more pressured and anxious and distracted than before. I’m expecting more of myself than is reasonable. It’s harder to put down my smart phone. It’s harder to just be at the table with my family. It’s harder to just sit on the couch with E and play Dinosaur Family. I’m finding it harder to just be. I’m having to relearn how to live in long arcs and it’s not going smoothly quite yet.

Today is Rosh Hashanah, the Jewish New Year, which this year has coincided with the beginning of fall, though the calendar won’t catch up for a few weeks. It was legitimately cool this morning. For the first time in a while I had to run back into the house to grab a long-sleeved shirt for E. The house has fallen quiet in the absence of all the fans and air conditioning that have kept us going and the air coming in through the windows has a point to make: the circle is about to turn again. There is something so comforting about the changing of the seasons, about another Rosh Hashanah, about another chance to be made new again. When I was young, the promise of Rosh Hashanah was the opportunity to reinvent myself. Now that I’m older, it’s more about the opportunity to reinvest. We spent the evening last night with friends from our neighborhood — our gaggle of five kids were running around shrieking with delight — and I could feel the roots we have been working to put down wending their way into the soil. Amidst the swirl of my usual worries about how to fulfill on my potential in this life, I had the sense that the answers are close at hand.

For someone who does not quite believe in God — at least not as traditionally defined — I have quite a potent response to attending synagogue. It’s all I can do while I’m there to keep from weeping. There are lots of reasons — the comfort of the familiar, the opportunity to reflect — but I think the main thing is that when I’m there, I feel like part of something, both in now time and in historical time. Lots of people have sung these songs, are singing these songs, will sing these songs. I hold hands with E as much as she’ll let me in synagogue and I can feel all the love that went into my creation flowing through me and into her. It helps that I attend about the warmest, funkiest, most progressive, most diverse synagogue imaginable where you can wear your sneakers if you want and it’s ok if your kid whispers “Is it lunchtime yet?” during the silent prayer.

At today’s services, there were five aliyot — five readings from the Torah scroll. Before each reading, a different group of people was invited to come up to offer a blessing and receive a blessing. First, there were the families who had welcomed babies in the previous year. They scraggled to the front, their little ones in carriers, in arms, in someone else’s arms. How could I not weep for them, for all the joy and the challenge of it, and for the hope for the future that is contained in the decision to bring new life into the world? Then there was an aliyah for people experiencing an ending, and one for people experiencing a beginning. How, I wondered, can one category not contain the other? But you could tell that the people who chose to mark an ending — mostly people mourning loved ones — were different from those who were marking a beginning — mostly newlyweds. You could feel the warmth of the congregation embracing them both. Then the fourth Aliyah was for people in need of healing, or praying for healing for others, or for those who work in healing professions, and given that all three categories apply to me, I decided to rise, and my mother also rose, for her own reasons, and E came with me because that’s how we roll. We gathered under a prayer shawl, surrounded by many others, and spoke the familiar blessing. I knew some of the other people up there from work — and I felt proud of them, proud of us, for all that we give of ourselves to heal others. After the Torah reading, the whole congregation sang a meditative prayer for healing — ana el na rafa na la  — the brief, poignant prayer that Moses spoke on behalf of his sister Miriam. Please God, please God, heal her. People called out the names of people who were in need of healing. I wanted to speak the names of all my little patients, who have had to start life by fighting for it, but of course I couldn’t because: HIPPA. So I just thought about them, their little fingers curled up around their breathing tubes.

In this world where people are killed because they are black and refugees are washing up on unwelcoming shores and millions of children die each year from diseases that vaccines could prevent and medicines could cure, it is a bit narcissistic to claim a spot amongst those who are in need of healing, but that’s how I’m feeling these days: not quite whole. So for me, this year is going to be about healing: healing myself, helping others heal, trying to heal the wounds of the world in the small ways that are available to me. May it be a good year. And it spite of all that is difficult, may it also be sweet. To quote a T-shirt that my mother wears: Lord, give me coffee to change the things I can and wine to accept the things I cannot change. And maybe some honey along the way.

Into the mystic

It’s been so, so, so long since I wrote. Part of writing for me is figuring out what the hell is going on in my life, so if you ask me what’s been going on in my life these past months, I’ll quite honestly tell you: I have no idea. It’s like the tupperware drawer, all containers and tops that don’t fit on the containers, some stray tops from containers that never made it home from daycare, a misplaced frog magnet, beads with no strings to connect them, a day then a day then a day.

Which is not to say that these have been empty months. Quite the contrary. I’ve been surfing wave after wave of check boxes. Every to-do list is a redo of the one before and a preview of the one to come. As residency winds down, and the-easier-life-that-has-been-promised rises over the horizon, there has been so much bureaucracy to take care of: medical licensing, credentialing, job application, disability insurance, life insurance. We are are thigh-deep in a house purchase that seems likely to actually happen (super exciting! And so much work!). I continue to try to accomplish more than is possible per unit time. The endless cycle of toys going into and being dumped out of bins continues (If you want to do an interpretive dance about parenting, all you have to do is put on yesterday’s pajamas and repeatedly stoop, pretend to pickup ten small objects with your two hands, stand and pretend to put them into bins.) All of these things are good things and necessary things but also seem far from the soul somehow. What was it again that was burning in my inner hearth those many years ago? Something about transcendence and understanding what it means to be alive and being fiercely present to suffering and always feeling the beauty of the world against my skin like a hot sun?

I got an email from my insurance broker yesterday congratulating me on my successful application for life insurance. “This is great news,” it began, and I couldn’t help but snort with laughter. “This is great news!” saith the prophet in the marketplace. “She hath died, yet her ashes are now transmuted into 1.5 million dollars.” I have been trying, really trying to change my relationship with money recently. I have read, without irony, with full hope for a life transformed, such books as “Your Money or Your Life” and “Think and Grow Rich,” the latter of which is truly a masterpiece of capitalist sociopathy. I have made spreadsheets of all my expenses. I have read several books on how to get organized and have made a few lists of things I should be doing (“Organize desk area” for example, which has appeared on every one of my to-do lists since 1996). I have manged to reduce my monthly electric bill from $197 to $165 after a borderline obsessive — ok, actually obsessive — household campaign during which I overheard my three year old say to her stuffed dinosaur “It’s ok. If your hands are cold, you can just put them in your pockets.” And yet I still cannot shake the feeling that none of this matters one little bit. I want to believe that once I have purchased a home, am fully insured (health, car, disability, life), have an emergency fund totaling three months of living expenses, and have paid off my credit card debt, nirvana will open its hungry mouth and swallow me whole, but I feel farther than ever from a sense of spiritual purpose. There is only so much room in my head and when part of that empty space is occupied with questions like “I wonder if volatility in the bond market will result in higher mortgage rates tomorrow?” and “Is the light in the basement off?”, there’s just not much room left for Mary Oliver’s worn-but-still-new question, “What are you going to do with your one wild and precious life?” I feel like more of a grown-up than ever these days, but I think I might have been closest to the truth at the age of 23, when I lived for long conversations with friends over tea and I was spending 1-2 hours a day sitting on a cushion, staring at a candle and trying to empty my mind.

E and I were in the kitchen one recent evening after dinner. As I mentioned above, I’ve been trying to keep more on top of things around the house, so I try to clean up after dinner these days instead of piling all the dishes in the sink and turning out the light (n.b. this can feel almost as satisfying as cleaning). E is not such a fan — she would rather I stare into her eyes or color with her or play “I’m Elsa. You’re Anna.” So it can be a tense time, me doing dishes, which I hate, while E literally hangs off my back pockets, shrieking for my attention. I opened the freezer to assess the dinner possibilities for tomorrow and E grabbed a row of Pedialyte Pops leftover from a past illness. “Let’s have a popsicle party!” she exclaimed. I decided to be done with kitchen cleaning. E broke off a cherry pop and I broke off one of the green ones that tastes like nothing nature ever made. We sat on the couch and E stretched her legs out onto my lap and we were just sitting there for a while, sucking on our frozen rehydration solution and listening to the Paul Simon Pandora station. Van Morrison’s “Into the Mystic” came on and I suddenly felt like my younger self, glowing with uncertainty and desire, waiting for something to happen. “We were born before the wind/also younger than the sun.” “What are you thinking about?” I asked E. “Dragons,” she said, without any hesitation. “Dragons and sheep.” She closed her eyes and licked her popsicle. It’s an odd experience, being so intimately bonded with a person whose cognitive world is almost totally inscrutable. Her feet starting bobbing to the music and I felt the wildness of chance that made her, the life energy that has flowed from me to her into forever. I thought about what lessons I would want my life to teach her by example: “Get good insurance”? Perhaps. But not only. Also, and much more so, “Love fiercely” and “Feel everything.” I guess it’s a matter of figuring out how to weave them together, the life of sober preparation and the life that carries you away toward an unknown destination.

twosmiles1twosmiles2

twosmiles

An extra cup at the Thanksgiving table

As a pediatrician-mama, I find that Thanksgiving is — to use a timely cliche — easy as pie. I don’t have to search my mind for even the shortest moment to access my gratitude place: My child is alive and healthy (*gods, do not be tempted by this statement*). The ocean of gratitude I feel for this has no bottom. I am aware of it dozens of times in the course of my day taking care of sick children: How lucky my partner and I are. How tenuous and temporary and fragile our luck is. How we can claim no credit for this fortune. There are many, many other things I am grateful for, but even if all those other things evaporated, this one thing, this everything, would still fill me up on Thanksgiving day and every day.

Yesterday, as a pre-Thanksgiving treat, my partner came and picked me up from work so we could pick our daughter up together from school. It was a gray, cold day and little specks of icy rain were making it hard to keep my eyes open as I waited just outside the entrance of the hospital. I’m on Jeopardy call all weekend but if I’m not called in, I get to have four days with my family in front of our slightly creepy ventless gas fireplace. (Where does all that CO and CO2 go? Whatever — pass the pumpkin pie!) So I closed my eyes and sent a surge of warmth towards each of my co-residents, wishing for their well-being and the well-being of their families. Sure, it started from a place of self interest and humor, but then it felt good and right to be sending them little non-denominational blessings in honor of the holiday. There is a special place in my heart forever for the people I am training with — a certain affection and protective instinct and a huge folder of moments in which these people have awed and inspired me, sometimes unexpectedly.

Then my mind turned to all the families I have cared for who are without a child this Thanksgiving. The babies who never made it into the world, the babies who stayed for only a few hours or days, the babies who left this world after a long struggle in the NICU, the babies who arrived to our ED in the early hours of the morning already cold and pulseless, the children whose otherwise healthy lives were shortened by cancer or trauma, the children with chronic illness who were in and out of the hospital for months or years before a cold or stomach bug proved to be more than they or we could fight. Then I thought of all the children whose lives have been shortened by war or preventable disease or treatable disease or famine or — this week especially — by racism or homophobia or genocide or hate-motivated injustice of any kind. I thought of their parents and the huge, gaping unfairness of what they were given by luck, or the universe, or God, or just random chance, depending on what you believe. I wondered how they go on with things like Thanksgiving. Would I be able to? In Judaism, when someone dies, the thing you say to the people who love them is: zachur li’vracha. May their memory be a blessing. And so, my eyes closed against the rain, I sent this out to all the parents who have lost children: May the memory of your children be a blessing and may there still be things to be grateful for.

On the Jewish holiday of Passover, we leave a cup of wine out on the table for the prophet Elijah. The teaching is that Elijah will one day come as an unknown guest and you want to be ready to welcome him. This year at my Thanksgiving table, I’m going to leave out a cup for all the parents who have lost children, that they may know they and their children are not forgotten. That they should feel welcome back into the rhythm of ritual and community, whenever they are ready. Also, that we may never take our good fortune for granted. And that we may fight in whatever way we can to prevent parents from losing children needlessly.

Of pumpkins, the thing with feathers, and a new compass point

It has been so long since I wrote that to say “It’s been a long time since I wrote” doesn’t even capture the situation. It’s more like I am beginning from scratch. Welcome to my blog again for the first time! Thanks for being patient with me.

People write for a lot of reasons. When I have a chance to write, I get excited because there exists the chance that I will understand what is going on in my own life.  I write to discover the threads of meaning in the otherwise purely chronological progression of minutes and days and months. And so, for the last few months a lot has been going right – lots of playdates and dinner parties and meet-ups, lots of progress towards a professional vision, somewhat more organized and on top of things than previously – but don’t ask me what it all means because I haven’t been writing, so I don’t know.

Here’s what I do know: it’s Fall. And how do I know this? Because of the pumpkins. The almighty pumpkin reigns. Pumpkin lattes, pumpkin cookies and breads and bars and pancakes and scones, pumpkin butter, pumpkin paper thingies hanging from the rafters, pumpkin earrings, pumpkin sweaters, pumpkin pins affixed to the aprons of many a hip barista. Every year the world gets pumpkin-ier, it seems. Sipping a pumpkin chai, you can begin to wonder: Is anything I am experiencing in my life singular? Are my feelings about Fall really mine, or have they been manufactured to stimulate the economy? At the coffee shop this morning, I was trying to decide between zucchini bread and pumpkin bread and the cashierperson said: “I prefer the zucchini bread myself. Or maybe it’s just that I’m pumpkin-ed out.”

But the truth is, I am loving every last pumpkin minute. Fall has been big in our household this year. In an effort to help E understand the season, we have visited pumpkin patches, gone on leaf hunts, eaten apple-cider donuts, and decorated the house with things like mini-scarecrows and jack-o-lantern lights. One of the gifts of parenthood is that the responsibility of orienting your child to the world brings you back into contact with the basics: The fall leaves are beautiful. Holidays are fun. Eating sweets feels good. Not complicated. I have become accustomed to living somewhat outside of the normal, so joining the pumpkin wave is both comforting and discomforting. But watching E cavort in the Halloween parade with her neighborhood buddies, I am so grateful to be living in a place (blessings upon West Philly!) and a time where joining is even a possibility for the child of gay parents. Making space for singularity in this world has been a source of struggle but also of strength in my life, but for my child I wish a measure of easy belonging. May she have to struggle just enough to learn but not enough to suffer. So maybe it’s a little complicated.

Lately, E has been asking me the same question every morning: “Where am I going?” by which she means “What’s going to happen today?” It has made me aware of the undifferentiated wash of time that E inhabits, in which she cannot know from day to day what the heck to expect. It’s as likely to be a regular school day as it is to be the day that we move into a new house. So I’ve started to make a calendar with her every Sunday, drawing out together the major events of each day of the next week in pictures. She calls them her “artworks” and insists on hanging them side by side on her wall, rather than replacing the previous week’s calendar each Sunday, so the past is as likely a topic of discussion as the future these days. She stands on her bed and points to each day in turn, reciting their highlights to herself: “Saba (grandfather) day. Rainbows (school) day. Dinosaur museum day.” The days that have passed surprise and delight her as much as the days to come.

One of the basic tenets of mindfulness is that the present moment is all there is, that both past and future are problematic fictions. I spent a lot of anxious years taking deep breaths and trying to embrace the present moment, but now that I’m a parent I’m willing to sacrifice a measure of anxiety for the sweetness of memory and anticipation. Looking at E, I can see her month-old self and her six-month-old self and her five-year-old self and her grown-up self in various states of recession and evolution. This year’s Halloween was made so much sweeter by last Halloween and the Halloweens to come. Which is not to say that the present moment doesn’t have a lot going for it, but watching E emerge into the consciousness of time is convincing me that this consciousness is absolutely inherent to the human experience. It’s why we mark time with rituals and holidays. It’s why we cleave to calendars. It’s why watching E’s excited face bathed in the orange glow of our string of plastic jack-o-lantern lights makes me feel like crying. Because time stretches backward and forward for what seems like forever.

So pumpkin bread it is.

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Where I am going? The question has been knocking around in my head a lot lately, maybe because of E’s daily query, maybe because I’ve had some easier residency months in a row. When you finally have a chance to raise your head above the swirling bat colony of responsibilities and groceries and new lab results, the horizon you find can seem both eeirly foreign and eerily familiar. Those reds and yellows and pinks, that sliver of sun — phew! I think, I’ve seen them all before. But also, have the colors of this world always been so vivid and arresting? It’s amazing what a couple of weeks of consistent sleep can do to your brain biochemistry.

I found a notebook of mine from medical school, full of errant notes — some meticulously organized lecture notes, some wildly scribbled reminders — “Student loan form” and “Review Kreb’s cycle.” On one page in the middle of the notebook there is just one line: “To better understand what is means to be a human being that lives and dies.” I remember this moment, though not the lecture or even the lecturer who had asked the question: “Why did you decide to go to medical school?” This is, of course, not the only answer, then or now. “To be of service” was and is actually the number one reason. Then there are things I couldn’t know then about the physician role: “To provide high-quality, safe, evidence-based, efficient care in the context of a health care system and institution.” But there remains a spiritual motivation to make contact with people at the limits of mortality where love and beauty and terror live.

At work these days, I’ve been seeing an epidemic of a disease entity that I will call “soul-itis.” This month, I am serving in the role of the admit resident, admitting patients during the morning hours when the floor teams are rounding. I meet patients, hear their stories, write their orders and get them settled, and then turn their care over to the primary team. I am like the ghost of hospital admissions present, from whom the patients awaken at noon to meet the people that will be their real doctors. Unencumbered by the simultaneous care of 20 other patients, I have had the opportunity to have in-depth conversations with these patients, and the theme has been a kind of suffering no MRI or blood test can identify. Abdominal pain, headaches, shortness of breath, altered mental status – all of these symptoms have been the face of soul-itis over the past couple of weeks. Of the patients I admitted, fewer than half of them ended up having a diagnosable and/or treatable problem. The rest of them had some combination of depression, anxiety, intractable family conflict, peer bullying, life trauma, or an inability to trust the people around them to act in their best interest. What, as a doctor, can I offer them? I try to listen and validate and acknowledge pain. I want to do more, but the soul isn’t really in my legal scope of practice. There are guidelines for how to treat asthma, bronchiolitis, fever, and seizure, but when it comes to helping people learn to live with the ache in their lives, I am not sure what my mandate is.

I have been feeling envious of chaplains recently, who are empowered to cut straight to the life of the spirit in their interactions with patients. Patients expect me to consider organic causes for their symptoms and are usually less than receptive when I suggest that the origin of their problem might be emotional or spiritual or psychosocial. At best, I can present this possibility alongside a lab test or imaging study I am ordering “to rule out the scary things.” I am not minimizing the value of ruling out the scary things – it’s part of my mandate, especially as a pediatrician – but I wish the conversation could turn to other scary things, like loneliness or shame or fear itself.

For my elective last month I rotated with the pediatric palliative care team and it reminded me how much healing is possible even when cure it not. It also reminded me how traumatic illness (either acute or chronic) can be for a patient and family even if death is not the outcome.  When you are responsible for the medical care of a patient, success is measured in a downtrending fever curve, normalizing lab values, tumor shrinkage, improved respiratory status, increasing oral intake. When improvement is no longer the expectation, the metrics change. Now you have to ask questions like: “To what extent are the things we are doing congruent with this family’s values and wishes for their child?” and “Are the things we are doing in any way preventing this child from enjoying their life right now?” It is a head spinning switch and it can be difficult for both families and clinicians. And yet, as I sat in on family meetings and listened to these discussions unfold, I felt like something bright was peeking through the cracks in the dark landscape of pain and trauma. It felt right to be hearing about family traditions and places of worship and siblings and grandparents. It felt right to be acknowleding the web of people strung by love to the sick child in the bed. It felt right to be broadening the conversation and finding hope — for comfort, for peace, for family time, for beautiful memories — where hope may have previously been elusive. The crazy thing about hope is that it can survive anything. “And sweetest in the gale is heard,” to quote Emily Dickinson.

In a study by Chris Feudtner of how parents of very ill children define the priorities of their parental role, he found that the number one priority for these parents is “making sure that my child feels loved.” This trumped even “focusing on my child’s comfort” and “making informed medical decisions.” It is rare that science makes me cry, but when Dr. Feudtner presented these findings at Grand Rounds, that is just what I did. It changed the way I think about my physician role, and not only in the setting of end-of-life discussions or critical illness. In addition to serving others, providing high quality care, and facing human frailty, it is my job to help parents ensure that their children feel loved, to help them love their children as best they can.

So where am I going with all this? Soul-itis is rampant and I want to make it a more central part of my business as a doctor. Love — especially parental love — is one of the wonders of the world and I want to be an expert in it. I want to be a master love-ologist. There is an infinitude of important things in this world — global food supply chains, how mitochondria make energy, the right way to build buildings so they don’t topple in the wind — but this is going to be my thing. I’m going to use the training I already have and acquire whatever additional training I need to make medicine a tool in the service of the love that burns and burns and burns and burns all around us. I’m not sure yet what that specifically that looks like in terms of a job description, but it helps to have something to point the compass arrow toward.

Here are some photos of the joy that was the Halloween parade. They’re out of focus but when are toddlers still enough for photos? E is the happy dinosaur.

Halloween Huddle

Happy Halloween

The chords and the cords

Some weeks have passed since I last wrote. For those of you who have been reading for a while, I’m on staycation again, which means taking stock in coffee shops, sleeping, trying to improve upon myself, and playing with E. I’m in a coffee shop called L’Aube in Fairmount. It’s a Parisian-style creperie, complete with art-deco windows, better-than-usual coffee, unsmiling waitstaff, and a sense of timeless remove from the busy world. Outside the window, two young shirtless guys are pulling up weeds and talking about girls. The neighborhood kids are coming home in ones and twos from wherever they spend their summer days.

We’ve been traveling a lot in the last few weeks to spend time with loved ones. Lots of hours in the car. Lots of rolling farmland and rest stop bathrooms and spotty cell phone reception. Little feet wading into creeks. Waterfalls. Ladybugs. Raccoon (which I learn upon googling is its own plural). Not to mention E’s first contact with tents and trampolines. Standing in the backyard of C’s childhood home at night, thousands of fireflies flicker on and off in the surrounding trees and fields at every height and depth into the vanishing horizon. It is more light and movement than the eye can track — dazzling in the most literal sense. I try to capture it on video but all you can see is a black square of night. It’s one of those shows you have to see live.

C and I have been spending lots of time together and I am reminded how lucky I am to find such enjoyment in it. We found out recently about the end of a long marriage among my parents’ friends and, holding hands with C across the gear shift through the streetlight-lit miles home, I can feel the weight of what they have lost. They had, at one time, seemed like an irrevocable couple. I think about the moments when a sarcastic barb comes to mind that you know would hit a soft spot, when the rhythms of daily life feel suddenly a little stale, when a chance flirtation arises with a stranger. Can the dissolution of love be prevented by a series of intentions and choices? I wonder. To quote Tina Fey, “It’s a burden, being able to control situations with my hyper-vigilance, but it’s my lot in life.” Whether it’s magic or a reflection of good habits of behavior or a little of both, I never take it for granted, that which always seems to be renewed between us. (Do you hear that universe? I don’t take it for granted! I am so, so grateful! Give me this continued comfort. Oh, and let my child be healthy. Just those two things. Does this count as a prayer?)

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Ok, so that last part shouldn’t be in parentheses. Since rotating on oncology last month, I’ve been saying quite a few of these little unstructured, non-religious prayers to no one and everything for no particular reason (what is the relationship between praying and the bargaining stage of grief? Discuss!). Up to this point, I have managed to (mostly) avoid reading on E’s body the signs of every dreaded thing, but last month I found myself staring at her across the breakfast table and wondering: Does she look a little paler than usual? She is a little sweatbox at night and even though she  was just as sweaty as on every other night I would run my hand through her damp hair and think: Are these the night sweats that you hear about? Almost every story on oncology begins with “So-and-so was an otherwise healthy child until…” Is today the day? I wonder sometimes. The last day of normal life? The day before the story changes forever? One of E’s favorite songs these days is “The Lion Sleeps Tonight” and I’ve decided it’s the only viable lullaby for parents. The lion is out there but tonight he sleeps and so you can also sleep. But as far as tomorrow goes….. awemoweh awemoweh, awemoweh awemoweh.

Oncology was a difficult rotation for me, and not only because of parental anxiety. One of the cardinal rules of medicine is to first do no harm, but in oncology you have to get used to doing as much harm as the body can possibly tolerate. The children have to get much sicker before they can get better, and a percentage of them die of the treatment. When the conventional therapies fail, hope is kept alive via increasingly experimental therapies. Without the experience of having seen lots of children cured of their cancer, with only one month caring for the sickest of them, it was hard to draw the line between worthwhile and futile suffering. On rounds we discussed the ethics of stopping curative treatment for dying patients but privately I found myself struggling more with the ethics of continuing. Even though I knew rationally that chemotherapy would be the only path to survival for these patients, my affective instinct was to let these little people with their steroid-swollen cheeks and bruises at every vascular access point have some peace.

My first call night I went to the bedside of one of the patients to draw blood for a test that couldn’t wait until the morning. When I opened the door, my first thought was, this is a dying person. I have never before had that thought about a patient, at least not in such a visceral and immediate way. She was asleep and I wanted to back quietly out of the room, out of respect for what comfort sleep might afford her. Instead I got my supplies together and proceeded with what would be two failed attempts at sticking her while she cried weakly. It was her family’s wish at that point that we do everything to prolong her life but now that she has died, I can’t say that sticking her was the right thing to do. But it was not the wrong thing either.

I will say this about my month on oncology: Pediatric cancer patients and their parents are tough as nails. The rest of us out here in healthy-kid land are playing for the farm team. I was humbled by them every single day. There was humor where humor should be impossible, generosity and kindness towards us as providers that was neither expected nor necessary, unblinking courage in the face of the previously unimaginable. I have always felt that the parental drive is one of the most ingenious and miraculous of nature’s innovations, but my appreciation for its force is on a whole new level.

If I had to distill what I learned from my oncology rotation into one sentence it would be this: Sadness and joy are not opposites. That, and love. Always love. Don’t waste a minute of it. The Bible, Hafiz, all the pop songs, they’re all right.

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On the Saturday night of one of our trips, I found myself in a small wood-beamed concert hall listening to chamber music. My mother offered to spend the evening with E so that I could attend the concert, a rare event for me these days. Prior to E’s birth and residency, in the 31 years I in retrospect understand to have been my youth, music was my ground water. Bach was the first thing in the morning and the last thing at night. Ear buds were always in my ears. At least half of the most impactful moments of my life happened during concerts. Now I can’t keep ear buds in my ears, for how then would I hear my child asking for more milk, please? Also, the classical music radio station in Philadelphia is not good (Are you listening, rich people with so much money that you have already stamped out hunger and refrozen the polar ice cap? Give them more money!). But I digress.

The first few pieces on the program were atonal, challenging, but full of pleasure, thrumming with novel sounds and unexpected vibrations. I had forgotten how music can bypasses cognition, like a spinal reflex but in your soul. Then came the first simple chords of the Schubert song “Wanderers Nachtlied.” The singer, a student, had a tremendous, gorgeous, rich voice — a gift. At the song’s most dramatic crescendo, her pitch wavered, but this only added to the music’s immediacy and passion. Every cliche happened at once: my heart skipped a beat. The breath caught in my throat. I got goosebumps. I wanted it to last forever but of course it didn’t. Live music is like life: No replays. The sweetest things come and then are gone and you have to hope you were paying attention.

A few days prior to the concert, I had been practicing neonatal resuscitation maneuvers on a simulation doll, and so as I was listening to the singer, all I could see in my mind’s eye were the doll’s vocal cords as visualized during an simulated intubation attempt. For those who haven’t been on the operator end of a laryngoscope, placing a breathing tube involves inserting a lighted scope — the laryngoscope — into the mouth, pushing the tongue out of the way, lifting the soft structures away from the larynx and visualizing the vocal cords through which the tube has to pass. The cords are white to pink, thin but tough, oriented exactly like an upside down V below the epiglottis and above the esophagus. The dark triangle between them is all you can see of the trachea beyond. Like many of the body’s parts, the vocal cords look much too simple for the complex task they perform. Due to their location and a number of other factors, it can be difficult to see the cords and so laryngoscopy is an anxious business, especially under emergency circumstances. On the other hand, when you a good view of the cords and can see the breathing tube pass through them, they are like the runway lights that guide a pilot toward some hope of safe landing on a stormy night.

I have visualized plastic vocal cords dozens of times and real cords several handfuls of times, but I had never connected them with the act of singing. When you train as a medical student and a resident, you are always being warned against becoming disconnected from the patients you are treating. If I had a nickel for every time a lecturer in medical school used the famous William Osler quote, “It is much more important to know what sort of patient has a disease than what sort of disease a patient has,” I would have about $15, which is a lot of nickels. Starting off down on the path of medical school, it is hard to imagine how such a thing could occur: How could you possibly become disconnected from the patient? As a medical student, you are focused on learning to take a history and do a physical exam, tasks which are inseparable from the unique humanity of the patient before you. As training proceeds, the skills and knowledge you strive desperately to master involve less the question of what happened to Mr. X and more questions like how do I maintain a perfusing pressure in a septic patient and which antibiotics cover Enterococcus and how do I intubate a baby who has been born through meconium? These questions are undeniably important, but they can lead you away from people into a world of numbers. Once you are in a world of numbers, it is easy to focus on physiology for its own sake — normalize lab values, get the heart pumping again, get fluid off. If you are not careful, you can lose sight of the WHY of it all, the inside jokes and love affairs and rugby games and chamber music concerts that make people who they are, for which they live, without which life is a rhetorical question. You can become disconnected from your patients not out of a lack of empathy or hard-heartedness but because there is so much happening at the level of the cellular membrane. I mean, what’s more important, breathing or singing?

It may be that some clinical distance is necessary to successfully intubate someone, but next time, once I’ve gotten the view, once the tube is through the cords, once position has been confirmed and the carbon dioxide detector changes color and the patient’s vitals start to calm down, I’m going to try to remember to speak a little incantation to myself: “That they might one day sing.” That I might continue to listen for the song.

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I left the concert at intermission to get back to E. In the parking lot, I looked up the words to the Wanderers Nachtlied (how has the internet changed life? Let us count the ways). Like many of Schubert’s songs, the text is by Goethe. It is imbued with that Romantic ardor for both death and the natural world that could be paradoxical but isn’t:

 

Over all the hilltops

is calm.

In all the treetops

you feel

hardly a breath of air.

The little birds fall silent in the woods.

Just wait… soon

you will also be at rest.

 

It’s a beautiful poem, and a beautiful promise, but it’s not the only way to go. For my part, I’m hoping for all the snarls and sighs of the forest, things eating and being eaten, the dance of a thousand lustful fireflies, to be released from fear into the chaotic tangle of everything.