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.
* * * * *
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.
I don’t have much to add except that the disease of the soul problems are the part of medicine that I’ve found most interesting to deal with these past few months, but also the most frustrating since it’s so hard to fix them. Even when they manifest themselves as difficult-patient-itis. I think interacting with these patients is what I will miss most about my general medicine rotation.
I know what you mean — even when the soul-itis manifests as difficult-patient-itis, there exists the possibility of finding a door through that into a place of connection. Good luck in your next steps along the path!
You are not alone as a healthcare professional in feeling this deep desire to restore peace and comfort and mainly love to our work. Our patients and families deserve this, for no other reason other than that they are humans who intrinsically are deserving of love. Your wish to make “medicine a tool in the service of love” resonates so strongly with me. Isn’t this what work, what life, is all about? Thank you for sharing. Continue to speak up, teach, and inspire this among your coworkers…..the more of us who do, the more likely the approach to medical care will change.
Rmarie — thanks for reading! It’s so good to hear from other doctors who are striving to care for people in this way. It inspires me to continue trying!
Xubava xubava xubava. As usual, Mirka.