VOICES

SPRING 2017 VOL 6, ISSUE 2

a literary journal
SITES.DUKE.EDU/VOICES

Advocacy Medicine 6-7 Ekphrasis 8-9 Professionalism & Politics 14-15

VOICES table of contents
2 Letter From the Editors
Rui Dai, MD/PhD student & Vinayak Venkataraman, MS4
letter from the editors
Healthcare is ultimately a team effort. The hos- 4 9/24/2016 Rachel Ballantyne, MD/PhD student
pital functions as an unit composed of hundreds
and thousands of individuals. From students to 4-5 On Deafness
nurses, and doctors to social workers, a patients Josh Davidoff, PA student
care never truly lies in the hands of one person,
but that of many.
In this issue, we present the writings and art- 6-7 Medical Urbex Joanne Zeis
work of individuals across the medical campus,
from medical and physician assistant students, to 7 Doctor Who Says Um Alex Hish, MS1
doctors, social workers, and advocates. We are
proud of the diversity of the effort that it took to 8-9 Ekphrasis Francis A. Neelon, MD
make this issue, and we hope that it will only con-
tinue to grow as we mature as a publication.
To begin, we remind ourselves of the wonder 10 Advocacy in Medicine Hussain Lalani, MS3+
of medicine amidst the routine of daily life with a
poem by Rachel Ballantyne titled merely as the 11 AIDS Rider Marissa Happ, LCSW
date of its creation. Then we transition to the won-
der of modern science as it changes and inspires
our lives in Josh Davidoffs poem on his personal
12-13 Caring for Sick Kids Vinayak Venkataraman, MS4
experience with deafness.
Afterwards, we delve into advocacy as we em- 14-15 Professionalism, Politics, and a More Perfect
phasize the momentousness of seemingly insig- Union Jerry Lee, MS3
nificant daily events, with Dr. Neelons ekphrasis
of the neglected fall of Icarus in Breughels Icarus.
Healthcare doesnt exist in a vacuum, it is part of
a complex microcosm that includes politics and associate editors
advocates. We have to be constantly aware of Julia Black MS1 S. Tammy Hsu MS3
that as Jerry Lee and Hussain Lalani deliberate on
the 2016 presidential election, and Marissa Happ Samuel Hofacker MS1 Madelyn Stevens MS3
and Joanne Zeis reflect on their experiences as Shan McBurney-Lin MS1 Bilal Ashraf MS3
advocates for healthcare issues.
We hope you enjoy this issue as much as we Ashley Adams MS2 Kun Wei Song MS4
have working to put it together. And as always, if Gireesh Reddy MS2 Kelly Murphy MS4
you have any interest in writing for or joining the
Voices editorial team, please let us know at

faculty editors
dukemedvoices@gmail.com.

Your co-Editors-in-Chiefs,
Rui Dai
Raymond Barfield MD, PhD Karen Jooste MD
Vinayak Venkataraman

BACKGROUND PHOTOGRAPHY CREDITS:

COVER: Aarti Thakkar, MS2
CREDITS/CONTENTS: Leslie Chang, MS3+
9/24/2016 On Deafness
I sailed a rowboat to the edge raised their eyes from their On Growing Up with Hearing Aids time (completely bypassing defunct On being a bionic person
of the world, where the ancient graves, as I roared On the cacophonies On being excluded by friends sensorineural hearing loss On how relearning to hear sounds
atmosphere meets open and I sliced and I bled and On auditory hallucinations of when you struggle to fit in ears), where it travels through like space invaders beeps
space I raved, ringing sounds On excluding yourself, in loud an electrode with 24 outlets On the philosophy of David Hume
Launched straight up, as the And i burst to the ground with On being one of two deaf situations, because you (each one programmed to and neural plasticity leading to
smoke unfurled, as the my head unshaved brothers borne to completely hearing embarrass yourself match your hearing loss) in the the magical moments where
waves grew small and the parents On anxiety from not cochlea to electrically stimulate the beeps turn into sound
As I lay on the grass looking On knowing that you might pass deaf- understanding what your the auditory nerve to transduce On hearing new sounds that you
clouds uncurled
ness to your children friends are laughing about sound to the brain never heard before in your 20
I found myself in that place. up at space
On letting deafness define you On feeling as though you are only On knowing how they really work: years of life
And the breeze brushed the
On actually being partially there they give hope On hearing a truck driving down
Then at the cusp where the years and the tears from
hearing-impaired On your friends treating you like On being told that you could nev- the street as though it was a
sunlight streamed and the my face
On being shunned by the deaf commu- you dont have a disability er afford the surgeries turbine engine in your room
edge of the world goldenly I sank back deeply and felt On relying on text messages and On spending 20 years of your life
nity while growing up because you On hearing hummingbirds fly
gleamed each blade Facebook to build friendships trying to get insurance to cover
wanted to be part of the hearing outside your window
and my breath was frozen in Like a mammoths fur, like the world On giving up on friendships based the surgeries On hearing your dog snore
the still night air, earth had frayed On growing up in and out of Deaf cul- off of the clarity of their voiceOn the right audiologist helping On hearing your favorite songs
I lifted my arms, tossed back And I heard an owl weeping in ture: you are deaf to the hearing and On struggling to flirt with the tall,you get the insurance as if youd never heard them
my hair the night hearing to the Deaf auburn-haired, freckled, neuro- On politicians talking about gov- before
And my boat tipped forward And gravity held me and On people smacking their lips, pa- science-majoring, hippie babe, ernment assistance as benefit- On going to classes and how
past invisible edges, like pressed me tight tronizing their words, repeating their because her voice is sultry and ing the welfare state hearing almost everything feels
a thousand needles on a I remembered and sung what statements, touching you to get your seductive and you cant even On being inspired to get cochlear like cheating
thousand ledges Id heard before attention, giving you unwarranted begin to comprehend it implants because the struggle On talking with friends and con-
and I trimmed the air like I As I seeped down to sleep sympathy, and asking did you hear On going to classes, to communicate with your girl- necting on a level you did not
sculpted hedges inside the core. me? consistently while understanding little to nothing, friends friends is a detriment to think was possible
communicating with you and teaching the course your relationship On knowing that your hearing can
For a single moment I was Rachel Ballentyne is a third-year On desperately staring at material to yourself On breaking up with her and get better and better every few
one of the stars, and the medical student/computer sci- someones lips to try to On going to classes and turning getting your cochlear implant years
sunlight pierced my eyes ence PhD interested in writing understand them off your hearing to sleep surgery two days after On still struggling to hear in social
and my scars, fiction, writing computer pro- On people acting as if you are flirting On your hearing aids being stolen On being able to communicate situations and classes
and I caught my breath in the grams, and rewriting genomes. with them because you stare at their and the $8000 payments to with those friends after the On being told that people dont
lips replace them cochlear implants think of you as hearing-
breathless void, and the sun
On always feeling as though you are in On your mother taking out home On having to tell your doctor to impaired
slipped behind the edge,
a foreign land trying to communicate mortgages to pay for your take a drill to your head for a On singing and still being tone
destroyed.
in a foreign ability to hear chance to fit in deaf
language On sleeping like a baby through On feeling the scars on your skull On reality taking new meanings
Then I shot towards the fire alarms or roommates hook- after the surgery, in the shower,
On embracing being deaf to benefit on every day
ground with incredible ing up crying because you know that
college applications
speed, as though I were On feeling like you havent overcome On auditory hallucinations that you wanted this Josh Davidoff is a student in
riding a flaming steed, with that much because you are a white sound like aria On the soreness your head feels, Dukes physicians assistant pro-
the wind in my hair and my male borne with privilege to a highly On singing and being tone deaf every day gram who was born deaf and
hair on fire and each mus- educated family in Denver On your partner running her grew up with hearing-aids. After
cle stretched and tuned as On overstating the challenges you face On getting cochlear implants: hands through the side of your
his sophomore year of college, he
a wire, and I charged the to gain advantages in classes, work On knowing how a cochlear head over those scars
was able to get health insurance
earth as the earth stood still, and in friendships implant works: An outer ear On fentanyl and opiates
to afford cochlear implant surger-
racing the ice down an end- On understating the challenges you processor uses algorithms to On going to the ER because of
ies. Now he is pursuing his goal of
less hill, and the coastline face to fit in interpret sound waves at differ- vertigo and gastroenteritis-in-
ent frequencies to send voltage duced vomiting from the im- improving the health of others.
grew sharp and I thought I On dancing without hearing the music
heard waves, and the dead On saying the wrong thing at the wrong through a magnet in your skull plants
4 SITES.DUKE.EDU/VOICES SPRING 2017 VOL 6, ISSUE 2 PHOTOGRAPHY BY NEECHI MOSHA, MD
Medical Urbex
My husband and I are urban
explorers. We go into abandoned
buildings the saggy, unloved
ones and shine light in the dark
corners. Our cameras find beauty
and order in the chaos. We share
the results with others.
Its profoundly satisfying.
Now lets make a few substi-
tutions, so that rare disease is
the focus of my efforts instead.
Research and writing becomes
that shining light, and a computer
not a camera helps to create
and distribute the final results.
Welcome to my world: What I
do with photography on week-
ends is a natural extension of my
health-related calling over the last
20 years.
So what do I do? Im a med-
ical information concierge for
people with a rare disease, and
for health care providers who
may not have time to research
the unusual. I dig up the evi-
dence-based materials and the
specialists that people need to
move forward with treatment. Im
a medical/health writer who can
translate impossible medicalese
into plain English. Im also a
known advocate for people with
Behcets disease. None of these
jobs, though, is full-time. Instead,
I make my living as a pharmaceu-
tical case manager. I cram these
other tasks into my free time.
I never expected to be an
advocate for anyone. Becoming
a medical-information search spe-
cialist and a patient advocate was
the direct result of being very sick,
and being very sick wasnt part of
my life plan after college.
I was 23 when I started hav-
ing serious health issues. As I
looked for answers, many doctors
thought I was looking for attention
6 SITES.DUKE.EDU/VOICES
instead. Find something else to
do with your time, they said. In
their eyes, I was too focused on
my health.
Uveitis. Oral ulcers. Genital
sores. Skin lesions. Rashes. Pain.
I lined up specialists, but none
of my specialists talked to each
other. The U.S. healthcare system
didnt help: Whenever I switched
jobs and acquired new health in-
surance, I was forced to leave the
few doctors who were trying to
make progress with my diagnosis.
I had to start from scratch, again
and again.
Headaches. Superficial throm-
bophlebitis. Cataracts. Tachycar-
dia. Vitreous hemorrhage. Periph-
eral neuropathy. Pain.
Add new health problems every
few months. Rinse and repeat.
One primary care physician
finally suggested Behcets
disease as a diagnosis, but im-
mediately dismissed it. Youre
white, she said, and youre not
from the Middle East. Its too
rare. Id done my own research
for years and already felt it was
the most viable option, but this
zebra diagnosis was always out
of reach. I was continually shut-
tled into categories that didnt fit,
but made my doctors feel more
comfortable. They could send
me for tests, believe that theyd
helped me, and move on to other
patients who had problems they
could actually solve. I was an in-
credible time sink for people who
had no time to waste.
I finally made an appointment
in Boston with a worldwide uveitis
specialist who had a background
in immunology. I handed him my
long list of symptoms, knowing
well enough to keep my mouth
shut and allow him to reach his
own conclusions. Invariably,
doctors never wanted to hear the
name of the zebra bearing down
on them.
I know whats wrong with you,
he said. You have Behcets dis-
ease.
The relief I felt was immediate
and overwhelming but at the
same time, it was now me who
had no time to waste. How many
other people were jumping over
the same diagnostic and treat-
ment hurdles that Id been facing
for 17 years? What could I do to
help?
I joined the American Behcets
Disease Association and put
my writing and medical-search
skills to work. Id always wanted
to read about Behcets patients
experiences, but a book like that
didnt exist. It was the start of my
single-minded focus. I spent a
year compiling and editing inter-
views Id conducted with other
BD patients. The interviews were
eye-opening, especially when
patients described interactions
theyd had with physicians prior to
diagnosis:
A doctor told me I was creating
this illness because motherhood
was not a challenging enough
job.
One neurologist wouldnt see
me without my husband. Upon
hearing that I had just moved, he
told me that my whole problem
was relocation adjustment. With-
out examining me, he gave my
husband literature on free-floating
anxiety and told him this was the
problem.
I self-published my efforts in the
book, You Are Not Alone: 15 Peo-
ple with Behcets. I was amazed
by the response. It seemed that
patients experiences touched a
SPRING 2017 VOL 6, ISSUE 2
A Doctor
vital nerve in the Behcets com-
munity, opening a dialogue that
was long overdue.
Joanne Zeis is a member of the
American Behcets Disease As-
sociation, the International Society
Who Says
My first Behcets book was fol-
lowed by two more; the most re-
cent won a 2015 National Health
for Behcets Disease, NORD, the
Alliance of Professional Health Um
Advocates, and the American
Information Merit Award for Pa-
I want to be a doctor who says
Medical Writers Association. She
tient Education. I researched and um
is a graduate of UCLAs Patient A doctor who,
wrote each of my books carefully, Advocacy certificate program and
always mindful that Im not med- being human,
holds a B.S. in Psychology from reveals his humanity in his
ically trained. I made sure that
Tufts University. imperfections
Behcets experts reviewed my
In 2006, Joanne was the sole A doctor who,
books prior to publication. While
I wasnt qualified to dispense
recipient of the American Medical having compassion,
medical advice to patients, I still Associations Citation for Distin- makes his compassion known
had the ability to translate dense, guished Service award, for her by spending time
evidence-based research studies ongoing work on behalf of Behcets A doctor who,
into language everyone could patients. The Citation is the highest having calm,
understand. national award given each year by moves deliberately through the
Each positive email or social the AMA to a non-medically-trained world
media post that I received from individual. each step and each word
patients, physicians and support Joannes most recent book chosen with care.
groups gave purpose to my work. about Behcets disease was the
And now? Behcets is no longer recipient of a 2015 National Health
the bane of my existence; its Information Merit Award for Patient Alex Hish is a first-year medical
become a lifelong commitment to Education. Joanne has been living student. He enjoys running, watch-
service. with Behcets since 1979 and ad- ing movies, and eating peanut
I went back to school in my vocating for patients needs since butter and jelly sandwiches.
late 50s to earn a Patient Advo- 1998.
cacy certificate from UCLA. My
goal was and still is to help as
many Behcets patients as pos-
sible. No one else should have
to suffer for 17 years, as I did,
without a diagnosis and proper
treatment.
But heres the good news: The
tide is turning for patient engage-
ment in rare diseases. The best
health care providers are willing to
listen to their patients, to accept
personal experiences as learning
tools. Above all, theyre realizing
that some patients have a depth
of knowledge about their own
disease that many physicians can
only dream of.
Make the most of it. I did.
7 SITES.DUKE.EDU/VOICES PHOTOGRAPHY BY AARTI THAKKAR, MS2 SPRING 2017 VOL 6, ISSUE 2
EKPHRASIS commentary on a visual work
travenous antibiotics until an MRI scan could be arranged. In the meantime, she called me and we
discussed what to do. He had a deformed toe that was causing trouble and was of no functional
use. Maybe, I thought aloud, it needs to be surgically removed whether it is infected or not. She
relayed this notion to the resident staff, and asked for orthopaedic consultation.
The next day, the medical student assigned to the team came to the room: Good news, he said,
About suffering they were never wrong,
the MRI shows no evidence of infection. He doesnt need antibiotics and can go home this after-
The Old Masters; how well, they understood
noon. When she asked about the orthopaedic consultation, the resident said: That can be done as
Its human position; how it takes place
an outpatient. True enough, it could be done as an outpatient at a visit displaced in time and lo-
While someone else is eating or opening a window or just walking dully along1
cation and convenience from the hospital bed he already occupied, but wouldnt it be easier to have
Orthopaedics see him now, to decide whether he needed elective amputation and, if so, when? I
Maybe it was the Agent Orange. All those years in the helicopters, you know, over the jungles of
decided to call the resident myself. When I finally reached her, she was very pleasant. I outlined my
Viet Nam. Or maybe the betrayal of genes, that unaccountable baggage we bear all our years. Or
argument for orthopaedic advice about his deformed toe and the possibility of prophylactic ampu-
maybe it was the long subsequent sitting in commercial cockpits the irregular hours, the undisci-
tation. She did not disagree, but said that her prior experience with orthopaedics led her to believe
plined eating, the lack of regular exercise. Anyhow, diabetes came, stealthily at first but eventually
that they would consult only on urgent problems needing immediate surgery. Had she at least asked
not to be denied. At first, the biggest problem seemed to be how to keep his urine free of sugar so
them to come by? No, she said, but (and I persisted) she would try. Let me know if they do not
that he could pass the flight physicals and vigorous, if temporary, attention to what he was eating
want to come, and I will see what I can do, I said.
and what he was drinking let him slip past the monitors and continue his career. Then came the rav-
Late that afternoon, he was officially discharged, but he and his wife were told to wait because he
ages: the ischemic cardiomyopathy with its attendant heart failure; the minimally successful attempt
would be seen in the Surgery Clinic. Around 6:00 pm, he was evaluated, not by Orthopaedics, but
at coronary artery bypass surgery; and then the strokes that changed the man he was and at last put
by the Vascular Surgery team. They found no vascular lesion that would require amputation.
an end to his life in the skies.
But what about the deformed toe? Does that need to be removed? she said.
They never forgot Oh! came the reply, Thats an orthopaedic question. We can arrange an outpatient consultation
That even the dreadful martyrdom must run its course in a couple of months.
Anyhow in a corner, some untidy spot
the sun shone
Where the dogs go on with their doggy life and the torturers horse
As it had to on the white legs disappearing into the green
Scratches its innocent behind on a tree.1
Water; and the expensive delicate ship that must have seen
On Thanksgiving Day he showed me his tender right foot. Slightly swollen, but seemingly not too Something amazing, a boy falling out of the sky,
bad. I told him that his doctor needed to look at his foot, but he had never liked going to doctors, or had somewhere to get to and sailed calmly on.1
admitting that something might be amiss. Eventually, of course, he had to. He ended up in the VA
Hospital, and a ray amputation of three gangrenous toes. Recovery was slow all those days and
weeks in hospital, the arduous rehabilitation, the clunky orthotic shoes, the learning to limp through
life. She (his wife, my sister) slipped free from work to be with him, and when he went home, she 1
Auden WH. Muse des Beaux Arts in Another Time. Random
rearranged the house and located personnel from the neighborhood to sit with him during the day so House, New York, 1940.
that she could continue her now-imposed role as sole wage-earner in the house. Used with permission from Penguin Random House
In Breughels Icarus, for instance: how everything turns away
Quite leisurely from the disaster; the ploughman may Dr. Francis A. Neelon came to Duke as an intern in 1962,
Have heard the splash, the forsaken cry, and except for 3 years at the NIH, remained here on the fac-
But for him it was not an important failure;1 ulty in Endocrinology and in General Internal Medicine until
retiring in 2002. Thereafter, Dr. Neelon practiced medicine
The fitted shoes were a pain to put on and wear, a condition that only got worse as his foot mus- as Medical Director of the Rice Diet Program, and then the
cles realigned to produce a hammer-toe deformity of the one small toe left on his right foot. He Rice House Healthcare Program, in Durham until 2016. For
found it easier to shuffle about in stocking feet than to push his foot into the shoe and traumatize many years a print of Breughels Icarus hung in the origi-
the cocked-up toe. A painful callus formed on the sole of the surgically deformed foot, but she did nal Medical PDC in Duke South; he marveled whenever he
not fret unduly until the hammer-toe looked black and there seemed to be a small amount of blood went past it.
around the nail. A call to his primary care doctor led to the advice that this was more than could be
handled in the office; she should carry him the 25 miles back to the VA Hospital. In the Emergency
Room there, a nurse looked at the toe and ordered a radiograph. Having not been told otherwise,
when the X-ray was done, she took him home. A frantic phone call from the nurse told her to bring
him right back: the X-ray suggested bone infection; he needed urgent admission and IV antibiotics.
On the ward, the resident physicians doubted the diagnosis of osteomyelitis. He was given in-
8 SITES.DUKE.EDU/VOICES SPRING 2017 VOL 6, ISSUE 2 PHOTOGRAPHY BY AARTI THAKKAR, MS2
 Advocacy in Medicine AIDS Rider
Too often in academia, we disproportionately affected. Maryland State General Assembly Victor Frankl believed that to me of his sincerity. Winking as he self-doubt on the AIDS ride
spend significant amounts of time NCDs are silent killers and on January 11, 2017. Through this find the ultimate meaning in life, adjusted his helmet strap, he told because wounded healers all
reading about, discussing, and lis- account for 38 million deaths effort, we aim to start bringing we must transcend ourselves and me to get ready for the ride of around me demonstrated what
tening to lectures on the foremost annually. They are often less transparency to cost of the pre- become absorbed in something my life. And every member of my love and greatness were all
challenges impacting our world visually and emotionally relatable scription drugs and to facilitate (or someone) beyond ourselves. team displayed that same deter- about: negativity fades away
today. And while this process is compared to a patient with Ebola discussions about affordability. In the winter of 2001, a radio ad mination and altruism. Nobody at when surrounded by kindness
educational and informative, there or a newborn with Zika. This may This story is just one in the caught my attention when it asked all, it seemed, cared about my age and joy. I removed the word im-
remains one lingering question account for the relatively minimal grand scheme of advocacy. Fur- for good-hearted individuals who or sexual orientation. Everybody, possible from my vocabulary
So, what are we going to do about attention that NCDs receive in the thermore, I strongly believe that wanted to make a difference. It on the other hand, did care about and today do not hesitate to say
it? media, and more importantly, in all health care professionals and talked about hope, endurance and loyalty, generosity and the cohe- yes to tasks much bigger than
More importantly what can global funding. To me, this is un- students are in a unique position community and I - amidst an sive effort to support individuals myself.
we, as individuals, do about it? acceptable and irresponsible. to recognize the suffering and element of mid-life angst - went to with AIDS. In only two months, the twin
Let me tell you about my path After class, a small group of inequity their patients face and to my phone and said, Sign me up. Day 1 began with temperatures towers would fall. Since that
to action and why advocacy is students approached our lecturer act on it accordingly. I had no idea what I had got- in the 90s and the sun blaz- day we have faced increasing
important in medicine and public to continue the conversation. You undoubtedly have, or will ten into; a bike ride to support ing upon us all. Water stations, violence, hatred and assaults
health today. I remained in my seat, feeling in the future, come across patient patients with AIDS seemed like a snacks and sumptuous meals on the innocent. We shudder to
It was a Thursday morning in unsatisfied. This lecture, like many stories and circumstances that great idea. I was a relatively new were prepared for all of us. realize that no one is truly safe
the middle of August. I was sitting before, was undoubtedly compel- capture your attention. MSW grad and hey, riding bikes is On Day 3 of the ride, one of our on our planet and sometimes we
in my Public Health Policy class at ling, but it was not action-orient- This may include the 45-year- fun. team mates died on of a massive fear that darkness has over-
the Bloomberg School of Public ed. The challenge of NCDs was old construction worker who can- I discovered that I had signed heart attack. Jack was the one shadowed the light.
Health. Our guest lecturer was Sir too important of an issue for me to not afford his insulin, the 22-year- up for the Heartland AIDSRide, who had been arriving early each Our world is broken, but when
George Alleyne, Director Emeritus walk away. Fortunately, I was not old college student struggling with a six-day, 550-mile bike journey night into camp and setting up the tempted to despair, I stop for
of the Non-communicable Disease alone. opioid use disorder and looking from Minneapolis to Chicago. tents for all of us until we arrived. a moment and close my eyes.
(NCD) Alliance and former director After speaking with Sir George, for medical help, or the 60-year- I had never biked a distance When we faced the most se- I remember the summer of
of the Pan American Health Orga- one of my classmates and I were old grandmother with heart greater than 15 miles. vere hill on Day 4, a wave of 2001 when my entire universe
nization (PAHO). He stood before inspired to start a chapter of the disease who is unable to afford I was connected to a team near terror washed over us; many were seemed friendly, when trust
the class of 250 students and be- Young Professionals Chronic healthy food. There are countless my home, and we started training already walking their bikes up the prevailed and differences took
gan a large-group discussion on Disease Network in Baltimore stories, and often, similar themes in March, to prepare for the event impossible incline. I desperately back seat to a larger reality a
the burden of non-communicable (YP-CDN Baltimore). Our goal was emerge over time. in July. After our first ride of 20 wanted to get to the top without conspiracy of kindness, it was
diseases (NCDs) globally. The next to organize the student body and Despite this, the underlying miles, I got in my car and every getting off my bike but realized called where team captains
hour was different than the major- local professionals to advocate for structural and policy issues im- muscle in my body screamed with that people were walking faster didnt hesitate to put themselves
ity of our lectures, no PowerPoint the health of marginalized popula- pacting our patients frequently pain; muscles I never even knew I than I was riding. I was on the in harms way to protect their
slides to be found. tions whose lives were negatively go unnoticed for some time. This had. I cried all the way home. verge of dismounting when I heard members and strangers gave
While listening to my class- impacted by NCDs and whose is not surprising, considering the My anxiety began to build and the familiar voice of my teammate away signed checks to make
mates describe the variety of voices were not being heard. increasing pressure we face with self-doubt assailed me like a cru- Rocky, cheerfully announcing, sure riders met their pledge
factors contributing to the growing With overwhelming support less time per patient, more time el, unrelenting tempest. Physical Passing on your left! I looked totals. It was the summer when
burden of NCDs, I heard them from colleagues and friends, we devoted to documentation, and as well as emotional safety were up to see the determination and the very hills clapped for joy
share cross-cultural stories. NCDs have spread the word and ac- lower reimbursement rates. It is my considerations: the agony on Rockys face as he and the gravel beneath our tires
impact people from all walks of tively engaged over 100 graduate tough. But How do I ever think I will rode by, his IV bag hanging from a offered no resistance. Even the
life, regardless of their heritage, students in medicine, nursing, We can do better. And frankly, accomplish this? What if I get pole tethered to his handlebars. I rocks cried out with hope.
gender, or educational level. We law, and business. We picked an we must do better. hurt? What if I get left behind? would not be getting off my bike. I am one AIDS rider who will
discussed how cardiovascular important advocacy issue - the Will I be accepted, a With tears stinging my eyes, I never forget.
Hussain Lalani is a medical student forty-something, heterosexual pulled out of the line to get behind
disease is the #1 cause of morbid- rising cost of prescription drugs
(MS3+) at Duke School of Medi- mother of five? my brave teammate, following his Marissa Happ is a doctoral can-
ity and mortality globally, how the - and joined a local, diverse grass-
cine and a current MPH student at Our team captain, a young and lead. I could not announce my didate in Clinical Social Work and
vast majority of deaths caused by roots coalition led by the Maryland
NCDs are preventable, how so- Citizens Health Initiative (MCHI) Johns Hopkins Bloomberg School extremely athletic leader, assured approaching presence to fellow committed to quality healthcare
cial determinants of health affect to advocate for the Prescription of Public Health. ncdaction.org/ me that no one on his team gets riders but simply gestured to all for all.
health outcomes, and how low- Drug Affordability Initiative, a bill breaking_the_mold_and_taking_ac- left behind, ever. Something about that I am with him.
and middle-income countries are that will be introduced before the tion the radiance in his face assured I lost my fear and much of my
10 SITES.DUKE.EDU/VOICES SPRING 2017 VOL 6, ISSUE 2
11 SITES.DUKE.EDU/VOICES SPRING 2017 VOL 6, ISSUE 2
Caring for sick kids: Then and Now
During my second year of
medical school, I went through the
most emotionally intense period of
my life as I grew close to an affec-
tionate 8-year-old kid with a very
poor prognosis. Two years later, I
went through a similar experience
as I became close to the family of
a previously healthy 10-year-old
with uncertain future. Both situa-
tions were similar, but I handled
the second one much differently
than the first. Reflecting on this
difference not only helped me
appreciate my growth, but also
offered a lens into resiliency and
burnout, two issues I had heard
plenty about but never seen close
up.
Then
I walked into the room and was
greeted by a wide-eyed 8-year-
old with scattered freckles and a
broad smile. He also had aplastic
anemia and was hospitalized with
an infection. Though gravely ill,
A acted like a typical kid and we
became close. He confided in
me about his latest crush (Dont
tell mom, its a boy secret!), his
backyard soccer career, and his
love of video games. A week into
As stay, however, we discovered
that he had a fungal infection that
was typically fatal. I was devastat-
ed by the news. After consulting
with advisers, I spent the evening
with him and his parents. Those
few hours were among the most
powerful of my life as I resolved
to genuinely be there for a family I
had only just met.
Though I shifted to other rota-
tions, I continued to visit weekly
during As three months in the
Bone Marrow Transplant unit.
He never lost his childhood spirit
though his illness worsened. Both
parents were always welcoming;
12 SITES.DUKE.EDU/VOICES
his dad greeted me each time I
visited with a hug. They confided
in me the raw emotions felt watch-
ing their son fight for his life and
the isolation felt in a large hospital
without nearby family. I took pride
in being a constant presence amid
rotating teams and in being a
sounding board for their thoughts
and emotions.
This role wasnt easy. Each
day, I felt closer to a kid expected
to pass. It was my first inpatient
rotation with no prior reference. I
could remind myself, with good
reason, of the resiliency of kids,
but I was also reminded each day
by provider notes that few mira-
cles could challenge his eventual
decline. No note could stop me
from convincing myself that my
role was to help him make the
most of whatever time he had left.
A was an eight-year-old, doing
and thinking about eight-year-old
things each day, he seemed to
care most about beating me at
Mario Kart. However, it was hard
for me not to join his parents in
playful boys in primes of child-
thinking of the life he would never
hood who had become suddenly,
live. It took some time, but I even-
tually became comfortable being
honest and vulnerable with my
namic treatment plans. Both kids
team, advisers, family, and friends.
Even after opening up to them, I
continued to bring work home.
I became emotionally invested
to the point my mood was deter-
mined by his clinical state. There
were some weeks I had to step
back to avoid burning out.
Miraculously, A survived to
receive a bone marrow transplant,
clear his infection, and return
home. His parents gave me a pho-
for autoimmune encephalitis.
tograph of him wearing a Man of
Steel shirt and a note saying that
I was part of their family forever.
Two years later, we continue to be
part of each others lives.
Now
B, a 10-year-old kid with a
weeklong fever and worsening
mental status, had made his way
to the Pediatric Intensive Care
Unit (PICU). Starting the week
with cold-like symptoms, he had
suddenly worsened over the
past 24 hours. He now had rising
tachycardia and worsening hyper-
tension. He came in lethargic and
each hour was rapidly becoming
less alert. I walked into his PICU
room expecting to have a short
conversation, but he was non-
verbal, minimally responsive to
pain, and had marked autonomic
instability, soon to be intubated.
His parents were sitting beside his
bed in total shock.
I couldnt help but think back
to two years ago. It was timely;
As mom had just invited me to
his 10th birthday party. His story
had been on my mind in the PICU,
especially with my new patient,
B. Both were previously healthy,
severely ill. Both had multiple
subspecialty services crafting dy-
had uncertain prognoses. Both
parents warm, friendly, sup-
portive found ways to remain
hopeful despite uncertain odds.
Even their names were in order of
experience: A first, B second.
During his first two weeks, B
continued to be minimally respon-
sive. The pediatric neurologists
had ordered an extensive work-
up, but were empirically treating
High-dose steroids were followed
by IVIG and nuanced neurolog-
ic improvement was assessed
for each day. His body required
SPRING 2017 VOL 6, ISSUE 2
dynamic support. The ventilator
kept him breathing. Powerful IV
medications enforced order to his
deregulated autonomics. Fluid
and electrolyte statuses were
actively corrected. Full feeds were
given via his ND tube. Antipyretics
and antibiotics were called upon a
couple times to stave off ventila-
tor-associated infections.
I would pop my head in ev-
ery morning before rounds. His
parents took turns staying by his
bedside overnight. Both greeted
me with steady handshakes and
warm smiles. How you doing this
morning? They would often ask
me, in thick Southern accents,
before I could ask the same about
their son.
I would reciprocate.
Oh, were all hanging in there,
they would say, in tones reflecting
measured hope. Were praying
he gets better, little bit each day.
Everyone back home is praying
for him.
How has B been since yester-
day?
Each day, they would point to
something he had done different-
ly. I took these seriously. Whether
it was noting how his eyes move
towards them as they called his
name or played music for him, or
noting him squeezing their hands
a little bit harder, their findings
were appreciated and often con-
firmed by the neurology team.
During the day, I would check-
in on them several times, keeping
them updated on new develop-
ments. They saw several different
providers and appreciated some-
one coming in at days end to
summarize the next steps. They
asked great questions and unlike
two years ago, I could answer
most. They knew that progress
13 SITES.DUKE.EDU/VOICES
would be slow, if at all, but re- I made sure to see him before
mained hopeful. discharge. I gave him a Captain
We would always spend time America stuffed toy so hed al-
talking about B. I wondered if it ways remember his superhuman
was difficult for them to be re- strength. He taught me how the
minded of their sons vitality as cool kids high-five nowadays.
he lay unresponsive beside them, Two weeks after discharge, his
but they were always eager to mom sent pictures of him up and
share. They brought him to life. smiling, a video of him climbing
He was beloved by his communi- up stairs, and a lovely thank you
ty. He loved his high school- and note I will continue to treasure.
college-aged brothers but fought ***
Due to the similarity between A
back whenever given a hard time
and B, I would often think to my-
(i.e. often). Hes a stubborn one,
self when with B: God, its going
he is! his dad would say. He
to happen again. You just watch.
loved country music and NA-
Youre going to get emotionally
SCAR and going out fly-fishing on
attached and get way off track
the weekends. He was raised with
like last time. These cases are
strong Christian faith and brought
your Achilles heel.
up to maintain good manners.
My fleeting mind wasnt far off
His father would smile when
the mark the hardest kids for
recounting one aspect of Bs first
me to take care of are the pre-
hour here, Even when he was so
viously healthy, now severely
loopy, hed always say sir when
ill ones. They have the great-
answering the doc. Per Dad, he
est potential to send me into an
was your typical adventurous,
emotional tailspin. During my
fun-loving, Southern boy.
time with B, however, the emo-
By the time I rotated off the
tional hurricane that seemed to
PICU, Bs exam had only slightly
be brewing at a distance never
improved and he was started on
made landfall. What changed? As
cycles of plasma exchange. His
I tried to figure out what change
parents encouraged my habit of
had taken place between my time
continuing to visit a couple times
with A and B, I landed upon a few
each week. We want you to
words: presence, balance, knowl-
hear him talk! After two weeks
edge, and perspective.
of being unresponsive, he final-
Presence. During my experi-
ly started to come to life. He no
ence with A, I sought advice from
longer needed the ventilator. He
a palliative care physician. He
could freely move his eyes to-
provided my guiding principle,
wards sounds. He started moving
Its the patients moment. Be
on command, then moving on
present. Theyll tell you what they
his own accord. He could wave.
need. At that time, I had inter-
Soon, he was on the floor. The
preted presence to be physical
day after his transfer, I stared in
presence.
disbelief as he wrote his name on
Continue at sites.duke.edu/voices
a piece of paper. We finally had
Vinayak Venkataraman is a 4th year
our elusive first conversation.
medical student thank ful for his
Within a week, B was dis-
time at Duke.
charged to a rehabilitation facility.
SPRING 2017 VOL 6, ISSUE 2
Professionalism, Politics, and a More Perfect Union
One day after the election, a emotions in the context of this decorum for political discussions or workplaces where political be afraid to say what we believe nytimes.com/mem/archive/pd-
fog descended. My body op- profession. In my training thus far, in the clinic is the same as any discussions abound, the stifling and still be accepting of people f?res=9F0CE1D8143BE53BB-
erated on rote. In the morning, Ive been taught that there is no discussion on politics among of minority viewpoints (whether who believe differently. C4A51DFBE66838D679EDE.
my legs carried me past sullen right way to process emotion; a strangers: say something ge- consciously or unconsciously) of- Inviting and challenging the var- Published August 22, 1966.
shadows through a city painted patient given bad news may cry, neric, mention how politics as ten occurs because the prevailing ied perspectives of our colleagues 4. Ralph JR. Northern Protest: Martin
in gray scale, and in the hospital, laugh, become angry or despon- a whole is terrible, and try to wisdom is that it is easier to work should be part of our medical Luther King, Jr., Chicago, and the
my hands were choreographed dent all of which are legitimate avoid controversy while smiling with people in whose opinions training, as it remains a potential Civil Rights Movement. Harvard Uni-
by some unseen puppeteer. My and valued responses to be and nodding. This time, howev- you do not know rather than with solution to our moral inarticulate- versity Press; 1993.
colleagues wore painfully familiar acknowledged by their physician. er, patients invited discussion people you actively disagree with. ness. Germane to both the im-
faces of austerity and defeat. I In the same way, these visceral by wearing their politics on their This classic error is associated mediate aftermath of this election Jerry Lee is an 3rd year medical
gave my friend a long hug, and we reactions whether characterized sleeve (sometimes literally), and with adopting more extreme atti- and to the future, deliberate, student who hates politics but
departed without saying a word. by despair or jubilee are equally several times I eschewed deco- tudes over time2, and without ac- regular, and sustained engage- loves kale.
This is one experience of the valid, and deserve the empathy rum to inquire about their beliefs. tive prevention of these situations, ment in divisive issues prepares
election. A mere thirty minutes that is afforded to each emotion. With surprising candor, I learned I believe we are denying ourselves us to confront the growing salvo
away, the scene is completely The greater challenge, however, that their deepest grievances the extraordinary opportunity to of post-factual or over-politicized
reversed. is learning to cope with different were health-related particularly embrace disagreement. health-related discourses, ranging
On November 8, 2016, our beliefs. These beliefs may be about rising healthcare premiums History provides an inspiring from vaccinations, abortion, and
nations 58th presidential election entirely antithetical to ones iden- and pro-choice Supreme Court example. Fifty years ago, when universal healthcare, to home-
exposed an uncomfortable but in- tity or ethics, and those that carry decisions and in the process of Martin Luther King, Jr. marched opathy and physician-assisted
controvertible truth: our most fun- these beliefs may be patients or this inquiry, I learned more about on Chicago for open housing, suicide. We will undoubtedly talk
damental values of equality, jus- colleagues in which our profes- the community than any reading leaders of the American Nazi to patients about one or more of
tice, and prosperity mean entirely sionalism (if not our humanism) could teach me. Though possi- Party, the anti-black, anti-Semit- these issues, and we must learn
different things to different parts of requires us to abide. No longer ble solutions to these issues are ic National States Rights party, to do so with a respect that su-
this country. Within the politically relegated to the purview of politi- indeed political, the grievances and the Ku Klux Klan, gathered in persedes our views.
homogenous bubble of my imme- cal scientists, the question of how that many patients feel are not. counter-protest with thousands If this can be a microcosm
diate medical community, friends to live amiably in a deeply divided By attempting to understand of followers. King, who had been of our nation moving forward, I
and colleagues met this news with and pluralistic society pervades people, what they cared about, struck in the head by a stone would urge, in this moment of na-
unrestrained anguish and genuine the collective consciousness of and what they were afraid of, only a few days earlier, marched tional self-reflection, the humility
fear, particularly if they were mi- this generation. Too often have opportunities for frank conversa- through an all-white neighbor- of asking our colleagues for their
nority, Muslim, immigrant, or LGBT. I seen students, patients, and tion were created that enhanced hood while being pelted with perspectives, and to consider, for
Women who expected the glass professors openly or clandestine- patient trust. As an outstanding rocks, bricks, bottles, beer cans, a moment, your own to be subject
ceiling to be broken were forced ly ostracized for holding minority example, a patient who had been apples, and firecrackers3. At a to error and change. This is the
to conclude that this was a repu- viewpoints; too often have I expe- refusing to take medications for critical juncture, he approached hard work of democracy, of day 1
diation of their gender. There was rienced this myself. There should fear of side effects agreed to try a group of 100 angry teenaged after the election, the rare window
shock, outrage, and expletives, never be room for hate, but this after our conversation, citing that youths, and said, You are all of opportunity for us to forge a
followed by calls to honor demo- also means that even some beliefs I had valued his perspective. In good looking and intelligent. more perfect union.
cratic ideals and moral principles, antithetical to a particular race, a time when most of the country Where did all that hate come
followed by more outrage assert- sexual orientation, or gender may is shouting past each other, and from?4 1. Gallup. Confidence in Institutions.
ing the prerogative to express be epistemologically sound and faith in established institutions is King knew, as we know now, 2016. Available at: http://www.
emotion. Never have I felt so there should be room for its ex- low1, dont patients deserve the that we must learn to live with gallup.com/poll/1597/confidence-in-
hated in this country, wrote one. pression, without condemnation. opportunity to be heard this way? people who disagree with us on stitutions.aspx.
This is the America we deserve, On family medicine, I rotated Im learning. Perhaps the key fundamental things. Medicine has 2. Stroud NJ. Media Use and
proclaimed another. Judging by through a clinic near Fayetteville, is aiming for understanding, an astonishing ability to be apo- Political Predispositions: Revisiting
the political discussions since, the NC, where many political rallies and not to take a side which is litical, and too often we are afraid the Concept of Selective Exposure.
future of reproductive rights, the were held. As with my preceptor, easier said than done, but can be to make our deeply held personal Polit Behav. 2008;30(3):341-366.
Affordable Care Act, and stem cell I was loath to discuss politics, achieved with relative ease due beliefs known for fear of offend- doi:10.1007/s11109-007-9050-9.
research remains entirely in ques- but from time to time, my patients to the temporal nature of patient ing someone or being perceived 3. Janson D. Dr. King and 500
tion. confronted me directly about interactions. However, in schools differently. Instead, if this election Jeered In 5-Mile Chicago March.
I am learning to process these my political views. Generally, the taught us anything, we should not New York Times. http://query.
14 SITES.DUKE.EDU/VOICES SPRING 2017 VOL 6, ISSUE 2 PHOTOGRAPHY BY LESLIE CHANG, MS3+
 PHOTO CREDIT: AARTI THAKKAR, MS2

SITES.DUKE.EDU/VOICES SPRING 2017 VOL 6, ISSUE 2