Every Monday, I spend time in a pediatrics clinic in our neighborhood. The following is a reflection from one of my experiences there.
“Sasha, teach Livy about your glucose monitor,” Dr. G said playfully to his patient, a 10 year-old girl wearing a purple sweatshirt and neon colored Nikes. Dr. G talked to Sasha and her mom as if they were longtime friends, full of banter and laughter. That day, Sasha was at the clinic for a check-up and weight measurement.
“Ok!” she replied, comfortably. I asked her to show me and told her that I had never seen a continuous glucose monitor before. “It looks like an iPod,” I said. That’s what her friends thought too, apparently.
Her mom sat to our side, with a gigantic grin on her face. She encouraged Sasha to share how it worked as Dr. G stepped outside for a moment. I was left alone with the two of them, which made me a little nervous and excited. Without my preceptor, my interactions with their family felt more intimate.
I asked Sasha about how she and her mom used her glucose monitor to manage her diabetes and the effect it had on her daily life. She told me the details of how to use it, how she has to change it regularly, and how much it hurts to use. I sat back and listened, admiring how much she knew about her own health.
When Dr. G returned, it became clear that they had spent years discussing this. They chatted about it as if it were simply part of her daily life. Though this interaction seemed so natural, Sasha could easily have felt embarrassed or different from other kids because of her monitor. Yet Dr. G treated it with a kind of normalcy that proved effective and compassionate.
With the support of Dr. G, Sasha became my teacher and I her student. I was reminded that in medicine, our patients would always be our teachers.
Beyond the practicalities of her monitor, she illustrated how someone might act when taking ownership of his or her own health. Sasha recognized what she needed to do for her own well-being. Even as a 10 year-old, she spoke with a delicate tone of responsibility that made me feel privileged to be there with her. This was what patient empowerment looked like.
The interaction between Dr. G, Sasha, and her mom provided a wonderful example of partnership as a driving force between doctor, patient, and family. This is something that I hope to cultivate in my own practice of medicine, no matter which path I choose.
The name of the patient has been changed for confidentiality.
Bits and pieces of things I read over the holidays:
Being Mortal by Atul Gawande
“Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be. We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?”
This book is excellent. Read the introduction here.
Purple Hibiscus by Chimamanda Ngozi Adichie
“We did that often, asking each other questions whose answers we already knew. Perhaps it was so that we would not ask the other questions, the ones whose answers we did not want to know.”
Wonderful writing as per usual from Ms. Adichie, although I have to say I liked her others better.
All About Love: New Visions by bell hooks
“Love is an action, a participatory emotion. Whether we are engaged in a process of self-love or of loving others we must move beyond the realm of feeling to actualize love. This is why it is useful to see love as a practice. When we act, we can trust that there are concrete steps to take on love’s path. We learn to communicate, to be still and listen to the needs of our hearts, and we listen to others. We learn compassion by being willing to hear the pain, as well as the joy, of those we love.”
The words of Yuri Kochiyama, hand-lettered for Hyphen
“Life is not what you alone make it. Life is the input of everyone who touched your life and every experience that entered it. We are all part of one another.”
Mostly because of the lettering. So pretty. [x].
Maria Popova on Rebecca Solnit’s “The Blue of Distance” in A Field Guide to Getting Lost
“This relationship between desire and distance, Solnit argues in one of the most poignant passages in this altogether brilliant book, is also the root of our deep-seated unease with desire — a state we approach with a single-minded quest for its eradication. We seek to demolish it either with grasping action, through consummation, or with restless resistance, through denial and suppression. We can’t, it seems, just be with desire — bear witness to it, inhabit it fully, approach it with what John Keats memorably termed ‘negative capability.’ With extraordinary elegance and sensitivity, Solnit offers a remedy for this chronic anxiety:
‘We treat desire as a problem to be solved, address what desire is for and focus on that something and how to acquire it rather than on the nature and the sensation of desire, though often it is the distance between us and the object of desire that fills the space in between with the blue of longing. I wonder sometimes whether with a slight adjustment of perspective it could be cherished as a sensation on its own terms, since it is as inherent to the human condition as blue is to distance? If you can look across the distance without wanting to close it up, if you can own your longing in the same way that you own the beauty of that blue that can never be possessed? For something of this longing will, like the blue of distance, only be relocated, not assuaged, by acquisition and arrival, just as the mountains cease to be blue when you arrive among them and the blue instead tints the next beyond. Somewhere in this is the mystery of why tragedies are more beautiful than comedies and why we take a huge pleasure in the sadness of certain songs and stories. Something is always far away…After all we hardly know our own depths.'”
This blue is everything.
On Wednesday, students from Albert Einstein College of Medicine and more than 70 medical schools across the nation participated in an act of protest against anti-black racism in the context of police brutality and our nation’s justice system. Based on the idea of a sit-in, students engaged in a “die-in” to emphasize the life and death nature of this issue. I’ve been trying to organize thoughts around this, because it has raised a lot of questions about privilege, responsibility, and what it means to be an ally. More to come on that, maybe.
This is what students from Einstein wrote and read aloud before dropping to the ground:
“James Baldwin, Nobody Knows My Name, 1961: ‘The white police officer… finds himself at the very center of the revolution now occurring in the world… he is exposed, as few white people are, to the anguish of the black people around him… One day, to everyone’s astonishment, someone drops a match in the powder keg and everything blows up. [Everyone is ] demanding to know what happened. What happened is that Negroes want to be treated like men [humans].’
When prejudice and power meet, systemic racism results. Do not attempt to invalidate the pain and hopelessness many people of color feel regarding these issues because you do not understand or know.
Today, as future healthcare professionals, we unite in proclaiming that black lives matter. We will lay in solidarity for the 7 minutes that Eric Garner went without medical care after being strangled. We will proclaim ‘four and a half’ for the hours Michael Brown’s body lay in the streets of Ferguson on that hot August day after his murder. Today, we wear our white coats in support of black lives. We acknowledge medicine’s role in systemic racism and stand together in eradicating it.
We ask that you show your support by engaging in a moment of silence for the duration of the die-in to honor black lives lost at the hands of systemic racism in law, medicine, and beyond. Engage your own humanity and stand on the right side of history.”
A doctor has just been diagnosed with Ebola in New York City. Last night, a man ranted for 30 minutes to everyone on the subway car about how we’re all going to die from Ebola, right then and there, but luckily I had my big headphones on so I’m not really sure what he said. Anyway, now what?
According to NPR, 75% of Americans believe that banning travel from and to West Africa is the appropriate next step. This policy, however, is misguided. A travel ban would likely exacerbate the effects of the Ebola outbreak on various levels. It may not only worsen the spread of Ebola, but also engender xenophobic, racist, and prejudiced attitudes toward African immigrants. Sharpening the physical and philosophical divisions between the U.S. and West Africa will only broaden the chasm between “us” and “them,” when in reality there is only “us.”
We need to fight prejudice, not perpetuate it
The mainstream media, especially at the outset of the outbreak, told this story in a way that characterized Africans as primitive, dirty, sick–ideas that stem from a deep legacy of colonialism and racism. Africa was historically viewed as the “Heart of Darkness,” a place of savagery and backwardness. For some, it still is. The expression of these ideas is now more subtle, but nevertheless present. The narrative that the West has created still paints the African, the black person, as Other. Someone to be feared, a life of lesser value. This idea is extremely problematic. Now that Ebola has arrived in the U.S., people’s blame on Africans may only increase. Yet placing the blame on Africans ignores the fact that the broken health systems in which this all began exist as remnants of colonialism.
The association between poor Africans and disease becomes apparent in the way that people speak. Many are saying, “keep Ebola out” when they mean “keep people with Ebola out,” as if they are the same thing. But if we think about the difference between those two statements, the question of human rights quickly comes into our field of vision.
“Twenty-two years ago, in a decision rooted in fear rather than fact, the United States instituted a travel ban on entry into the country for people living with HIV/AIDS. Now, we talk about reducing the stigma of this disease—yet we’ve treated a visitor living with it as a threat.” President Obama said this in 2010 when he lifted the travel ban on people with HIV. While his administration’s response to the Ebola outbreak has been less than ideal, his point demonstrates that a comparison to the AIDS crisis is absolutely relevant. Stigma was and still is a tremendous problem in response to the AIDS epidemic–now, we face a serious need to prevent stigma in regards to Ebola. Stigma and discrimination jeopardize human rights and put people’s lives at risk.
Exclusion is not a sound strategy
Those in favor of excluding people from West Africa claim that this would work to protect “national security.” As Vox has clearly outlined, there is no evidence that travel bans are effective public health measures. Laurie Garrett writes that “many nations have banned flights from other countries in recent years in hopes of blocking the entry of viruses, including SARS and H1N1 ‘swine flu.’ None of the bans were effective, and the viruses gained entry to populations regardless of what radical measures governments took to keep them out.”
Leaders like Paul Farmer of PIH, Thomas Frienden of the CDC, and other experts have explained that a ban would likely make the problem worse. If people are barred from the U.S., they will seek other ways to get here and their movement will be harder to track. Further, the work of NGOs and other aid groups, who are doing a lot on the ground, will be much more difficult. While some propose a selective travel ban in which only certain health professionals could get in and out, this would be complicated and counterproductive.
At the end of the day, the calls for a ban are entrenched in politics rather than sound public health policy. The majority of politicians, both Democrat and Republican, who are making the loudest calls for a travel ban are those on the campaign trail. Everyone wants to “keep Americans safe.” But if we are going to talk about “saving American lives,” perhaps we should discuss gun policies, the tobacco industry, or the structure of our food system. The language around public health always reflects political motives and social norms, and Ebola is no different.
There is a better way
Instead of focusing on how to keep the “problem” out, we should focus our efforts on the immediate containment of Ebola at its source. The U.S. and the international community must support the long-term improvement of the health systems in these affected countries. This requires things like strengthening government health facilities, building the capacity of local health workers, and improving access to care. These tasks are most effective when done through years of partnership with local people in country. This is nothing new.
While containing Ebola represents a major challenge, it is also an opportunity in which to act. This is the chance to collaborate for the sake of fundamental rights, social justice, and human dignity. Rather than revert to stereotypes grounded in racist phobias and a disregard for the Other, it’s time to lean toward a new attitude of pragmatic solidarity.
That seems intangible for those of us at home, but we can help mobilize resources by donating to worthy organizations like PIH, Wellbody Alliance, and Last Mile Health. We can be more conscious media consumers, call out dehumanization when we see it, and change the broader conversations that we are a part of.
Instead of choosing exclusion, we need to choose inclusion. We cannot afford to think of collective responsibility as a choice–if anything, the spread of Ebola illustrates that this is the world we live in. Global health is our health.
“To be a good human being is to have a kind of openness to the world, an ability to trust uncertain things beyond your own control, that can lead you to be shattered in very extreme circumstances for which you were not to blame. That says something very important about the condition of the ethical life: that it is based on a trust in the uncertain and on a willingness to be exposed; it’s based on being more like a plant than like a jewel, something rather fragile, but whose very particular beauty is inseparable from that fragility.” – Martha Nussbaum
This post is dedicated to Aracelis “Sely” Ayuso and to all of the people who care about her.
“Livy, you look like a fairy. It must be your hair.” I let out a hearty laugh—a fairy? Really? Those were words I had never heard before. They came from the mouth of my smiling, 21 year-old coworker named Sely. We were standing behind the U-shaped counter of the bakery where we worked, where ten people at a time moved around each other through a chaotic, clumsy dance to serve coffee and pastries to the city’s elite. Every day, each of us had to wear a uniform meant to make us blend into this two-story, bustling place on 18th street. Day after day, I wrapped two aprons around my waist, wore a black t-shirt, and donned the dorkiest hat you’ve ever seen. Fairy attire, naturally.
Sely stood there in front of me and flipped my ponytail with a gentle flick of her wrist. “Yeah, it’s definitely the hair.” She continued, “I know you’re smart and shit, but if this medicine thing doesn’t work out, you should become a model.” I started cracking up again and told her that was the nicest thing anyone had ever said to me. We got back to stacking croissants in a perfect pyramid of butter-filled doom, and I was smiling.
This was the moment I thought about when I found out a few days ago that tragedy had struck. On July 12, 2014, Sely passed away due to a fatal subway accident on the platform of the Brooklyn-bound 4 train in Union Square. This jarring news weighed heavy on my heart, and I wanted to share the few glimpses of Sely that I experienced while we were working together. Some of us at the bakery only knew her briefly and in this context, like me. Her family and friends could say so much more, but this is what I know.
“Is that LIVY?” she would ask, with her head tilted, grinning.
While the rest of my coworkers and I usually would say hi to each other only once we found a break from the madness, she would always greet me this way immediately. It was like she was singing every time she said it, with a cadence so undeniably rooted in New York. It became a routine for me to tease her for shouting “cooaffee” instead of my Californian pronunciation of “coffee.”
Most days, she was lighthearted, silly, and kind of ridiculous. She always loved to talk about her adorable, three year-old daughter, Ashlynn. Sometimes she would seem tired, perhaps from things in her life I never knew anything about, but her spirit was always positive.
One day, however, her smile transformed into a look of concern. She had stepped off the counter to see if I was okay, because I had just stormed off and was pacing in anger. Five minutes after arriving that day, a customer had singled me out because of my ethnicity and my inability to give him a particular mug for his latte. His words dripped with entitlement, and for whatever reason that day I was just not having it. Of the 20 customers in line behind him witnessing this scene unfold, some glared at him with disgust. But not a single one spoke up to defend me. So I stopped what I was doing, and she ran after me. If it hadn’t been for Sely’s small gesture of compassion, I would’ve felt very alone.
There’s an essay by Rebecca Solnit, one of my favorite writers, in which she says, “The stars we are given. The constellations we make.” Sely was the kind of person who I would imagine as a star, a node that would branch off in all directions to form a network of connected, incandescent points in the sky. I am just one of what seems like many such points.
To me, remembering her means striving to live with the everyday kindness and disarming sense of warmth that she emanated.
This past year, I spent time volunteering with kids in Vietnam, traveling alone to Italy, and spending a lot of time making coffee. Openness is something that I keep returning to. One of the greatest lessons I’ve learned through it all is that openness is not just a nice quality to have—it does something. It does work. It effects change. Being generous, kind, and present creates opportunities for human relationships to grow and for communities to be created.
Sely was one of several people I met this year who reinforced that lesson. It was as simple as the way she said hi to me.
I wish to send my thoughts and sympathies to her friends, family, and cutie pie daughter in particular. May her life be celebrated.
Last summer, I traveled to Vietnam to assist with an educational program that supports a group of both the brightest and poorest (we’re talking bottom 10%) 16-17 year olds from across Vietnam. My brother, friend, and I helped with the English part of their curriculum.
I realized that I never wrote about my experience there. I think that happened because these kids moved me in such an unexpected, deep way that I have been unable to articulate it. It wasn’t really about “empowering them,” whatever that means. We just became great friends. They changed me in a visceral way. In my gut.
“Let us be grateful to the people who make us happy; they are the charming gardeners who make our souls blossom.” – Marcel Proust
I came back from Vietnam a happier person and am incredibly grateful for it.
P.S. I also had the best banh mi of my life in Hoi An.
Update as of 1 year later: turns out the kids have a serious Facebook addiction. We still write to each other. I hope to see them again in the near future.
Part of discovering what it means to be a “global citizen” requires a deep excavation into the inner, honest core of our own intentions, values, and biases. It involves digging far enough to unearth the true way we wish to orient ourselves toward the world.
Several young leaders are increasingly championing the idea of linking our own cores to those of others. I admire them for acting with confidence and conviction as they reshape the philosophical foundations of poverty alleviation. Meaning, they are pushing to end the era of pity-based charity, and are instead trying to transition to one of respect, sustainability, and collective responsibility. While this may be an ambitious undertaking, it is a grand vision that can be progressively realized.
Yet despite these efforts and my personal desire to exhibit humility, openness, and mindfulness, I fail sometimes. Fail is a strong word. I catch myself. Just when I thought I had learned the small lesson that we learn in kindergarten, not to make snap judgments or assumptions about other people, I got a little refresher during my time in Burma. It was one of those moments when I remember that I don’t know anything.
Under East Meets West’s Breath of Life Program, my family recently traveled to Yangon/Rangoon. Myanmar, or Burma, has one of the worst human rights records ever. But recently a number of good things have happened, at least at the surface level. The Burmese government held its first fair democratic elections, in which the leading opposition party (the National League for Democracy) won 43 of 45 seats. The United States announced that it would ease sanctions against Burma earlier this year. Hillary Clinton paid a visit and schmoozed it up. In spite of the recent government reform, journalists have published various pieces about the persistent challenges the nation still faces. Some say, too much, too soon.
I read things about Burma more than other countries. It’s actually really odd. I have no connection to this place. It started with the book, Freedom from Fear, which later led me to take up a bit of an interest in the story of a place that the international community seemed to have abandoned. In the process, I began to develop a narrative in my head. I envisioned a land of destitution, corruption, AIDS, instability, and violence that I hoped would somehow inch toward a better future for its people. Yes, I admit that it had become some kind of mythical creature that I wanted to understand. As you can see, this already sounds very problematic.
Next thing I knew, I found myself standing face-to-face with a group of Burmese nurses looking at neonates.
Because my mom was going for work, our family was able to visit one women’s and two children’s hospitals in Rangoon. They were all government hospitals. Although I didn’t realize it at the time, I had developed preconceived notions about what a public hospital in a country with one of the most repressive governments in the world would be like. I didn’t even want my eleven year-old sister to come along, because I was afraid she’d get traumatized.
Turns out, I was very wrong. The health care was exceptional.
When we arrived at the first hospital, the Yangon Women’s Hospital, we were greeted by several doctors and nurses who emitted an immediate sense of warmth and kindness. The hospital was large and overgrown with mold like many other buildings in Rangoon. I was expecting chaos, for the halls to be lined with mothers in pain and kids without anything to eat. But no, everything was quite organized. They gave us a presentation on their region’s health status, the specific challenges, and how exactly they’d like to work together with EMW. We then toured the neonatal wards. (CUTE BABIES!!!) Everything was so sanitary that we had to remove our shoes and put on designated slippers before stepping foot inside the nursery. Charts lined the walls with details of each baby’s stats, and every room had at least a few nurses in it.
One notable quality of all three hospitals was the abundance of health staff. The nurses each had different color-coded outfits. The ones with red skirts were midwives, while green were another type of nurse. Something else that my parents pointed out was that each of the hospitals was run entirely by women. Wonder if that has anything to do with their success…
After spending more time with them, my parents could make the objective observation that the Burmese staff excelled compared to other hospitals in Southeast Asia. Whereas I could just feel that they did their job with pride and a commitment to high-quality health care. While everyone else from our group was talking or crowded around one bedside, I walked around to see what the rest of the nurses were doing. In the corners, they were attending to their patients when no other Westerners were watching, fixing the tubes and blankets and keeping an eye on the monitors.
Obviously, these hospitals still face significant obstacles that are far more complex than we could have understood in our short time there. That would probably take years to comprehend. These were not perfect sanctuaries. All in all, however, meeting some of the people behind Burma’s public health system inspired a lot of hope in me. I was reminded that a country’s health care is not its health indicators, WHO reports, or 10-page pieces in the New Yorker. Its life expectancy and infant mortality don’t really tell us anything. There are people working very hard, with no recognition, to deliver the highest level of care possible given their limited resources.
I wanted to share this story not because it’s anything new, but quite the contrary. It’s a complete cliche. American girl goes to poor country and mind is blown. What else is new. It’s these small moments that tap me on the shoulder and remind me to never forget to keep myself in check. To be aware of the ease at which I think I’ve grown out of certain things when I am really just skimming the surface.
I had spent so much time carefully thinking about how I wanted to (aka should) think about Uganda in preparation for my trip there. Put in the context of an adventurous journey to Burma, nothing seemed to translate. After all of this, I was ashamed of how much I had used my other experiences in poor countries to determine what Burmese hospitals would be like before even getting there. I am not immune to the cliche, or to the dangers that I myself often criticize.
The real take away is that there are some remarkable people in Burma’s hospitals. I’m honored to have met them.
Overheard in the field: “I have the courage to stand boldly before all of you because I want you to know that I will not die of AIDS.” – Zainabu, an HIV-positive woman from one of the groups we met with
Photos below: Visiting GlobeMed at UCLA’s partner in Anaka, testing school aged kids (14 and up) for HIV, immunizing babies who were born at home for TB, feeling a baby and helping with an antenatal home visit, meeting with HIV-positive women’s groups/youth groups