healthcare privilege

The first time she stumbled into our clinic on Skid Row, she was on the brink of death. A huge wool coat hung over her 83-pound frame even though it was 90 degrees outside. Thrush crawled out the corners of her mouth and over her lips. She'd been in the ICU last month; she never finished the antibiotics for the AIDS-related pneumonia she had. Now her cough (and every other concerning symptom possible) was back: 

Her blood pressure was 86/40; there was no choice but to send her to the emergency room. We gave her a liter of IV fluids while waiting on the ambulance to come because we knew she might wait a while to see a doctor once she got to the hospital. The wait to be seen by a doctor at LA County Hospital can range anywhere from 8-36 hours. We hoped that sending her by ambulance might expedite things. Sadly, it was almost 24 hours before a doctor saw her, and 28 hours until the necessary chest x-ray was done. The previous pneumonia was still there, though slightly improved. She was released the following morning after a couple doses of IV antibiotics, back to the court yard on Skid Row where she slept. 

Martin Luther King, Jr. said, "Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane." These inequalities become more glaring when I find myself on the privileged side of healthcare. On the same campus where LA County Hospital sits, half a mile down the hill, is a smaller private hospital. Recently, I found myself having to access their services.

I was sent from my doctor's office to the hospital's equivalent of an emergency room. It was less than ten minutes from when I checked into the emergency department until a doctor saw me. Over the weekend when I felt worse, the on-call doctor sent me back to their emergency room. Within thirty minutes, IV fluids were running into my dried out veins. And two days later, when it was finally clear I had to be admitted, it took under an hour to transfer me from my doctor's office into my room. 

Beyond the speed and access to services, I carry additional privilege: speaking the same language as my doctors, having the knowledge to ask questions about my treatment, and being able to read the prescriptions I was sent home with (and a home to return to). 

I struggle with this privilege. Because there is no reason my patient should wait 28 hours for a chest x-ray, when in that same amount of time, I made it to a room, saw the medicine team taking care of me twice, and watched 17 episodes of Friends on TBS. Though our country is trying to lessen these disparities with things like Obamacare and the expansion of Medicaid, we still have a long way to go until everyone has equal access to healthcare. Until then, I'll keep fighting for my patients to get the care they deserve. 

p.s. - in case you were wondering, my patient is doing great. She is now on HIV medicines, has gained 40 pounds, has been living in a medical-transitional housing unit, and will be getting her own place next month after 28 years of living on the streets. 
and i'm doing much better too. :) 

in memory of her

i knew when i met her she didn't have long to live. it was a sad story, a few months of nausea that was mostly ignored, actually a rare cancer that had spread throughout her belly. 

 

they decided to start chemo. she was optimistic; she told me she was gonna fight this thing. we talked about how her hair would fall out, and what head scarves she was gonna buy. how she wanted to go to the beach this summer but was scared to be away from her doctors. about how cute her granddaughter was.  

 

her family was always in the room. her mom drove her crazy, with the fluffing of pillows and the force-feedings of sherbet and ensure. her sisters told stories of what an amazing person she was. her pregnant daughter brought in ultrasound pictures of her soon-to-be baby girl. her three-year old granddaughter ran through the room, making everyone nervous. they made me feel like family.

 

the chemo was hard on her, but she managed to get discharged, only to come back a couple days later, dehydrated and weak. this time, when her family had left the room, she told me, i know this is gonna kill me. i'm not ready to go.

 

she kept getting sicker, and her story changed: i know this is gonna kill me, but i'm ready. her mom pulled me in the hall and started crying: i know she doesn't have long. what do you think? i couldn't argue.

 

there was something about her, her mix of sadness and hope, resilience and resignation, her honesty, and her willingness to just let me sit with her that kept drawing me back to her room long after i had rotated off her team. maybe because i could carry the grief of my own sickness there and sit with it as she sat with hers. she heard my voice weakening as bronchitis set it, saw my mask when i was at risk for infection, but never asked more than how i was feeling that day. so we would both sit there and separately hold our losses, hers greater than mine, and talk about small things. sometimes she would cry. i would bring rita's and cupcakes that she would inevitably throw up.

 

i knew she was dying fast, but i didn't think it would be only two days after she left the hospital that second time, only six weeks after the cancer was detected, still four months before her second granddaughter takes a breath. 

 

i went to the viewing, not to say goodbye to her, but so i could hug her daughter and her mom and her sisters, because she made me want to hug my mom and my sisters, because life is just too short sometimes.

 

second year end, third year begin.

i started this year with deep breaths of thankfulness. i had survived what was supposedly the worst of the medical training process: intern year. the year ended with a week exploring the pacific northwest with a friend - eating our way through pike place market, kayaking around san juan island, biking and hiking in vancouver. i felt full of life.

 

second year started with continued triumphs: the color run. kayaking all summer long. a friend's wedding in india. loving work.

then things spiraled down: the death of a friend. recurrent hospitalizations. work and life becoming far too exhausting.

now this year comes to a close with another week of sickness, a chest rattling with cough, and a body heavy with fatigue.

like last year, i know life comes with both things difficult and things beautiful. and like last year, i am finding i am stronger than i imagined.
 
so i take a deep breath in and let this last year of residency begin.

telling secrets

i've only told three patients that i have lupus. 
normally, i don't tell.
because my experience of illness is not their experience of illness.
because the things that have given me hope aren't necessarily what will give them hope.
because my trajectory is not their trajectory.
because my journey cannot be extrapolated to their journey.

but sometimes, you need to know you are not alone.
sometimes you need someone else to say "me too."
so on three occasions, i have shared that understanding.

~~~

she thought it was just an ulcer, the nausea she'd been experiencing. it was metastatic cancer. she started her chemo in the hospital. what she wanted to know: when will my hair fall out?

she brought it up a few days later, looking sad. i'm waiting for my hair to start falling out. i could tell she wanted to not be upset. when you are diagnosed with metastatic cancer, it seems petty to care about cosmetics. except that it matters. it is a loss to grieve. it changes the way the world sees you, because now they can your sickness. the disease that was visible only to microscopes and CT scanners is now on display for everyone. i lost half my hair seven years ago when i got sick, i told her. don't downplay your grief. it is real. 

~~~

apparently he usually refused to see med students, but i guess that day he lost his fight, so i picked up his chart and went in.

his recent medical course had been tenuous. recurrent infections and hospitalizations, despite how adherent he had been to his HIV medicines. he now was contemplating taking a leave of absence from work. his worries about this were endless: that his co-workers would find out his diagnosis; that he would lose his job; that he would never be well enough to go back. he started to cry.

i took a deep breath. i had to take a year off of school because of sickness. i wasn't sure i would get better either or that i would be able to go back. it was a long hard year. i don't know what it will be like for you if you take time off or if you will get better or what will happen with your job. but i know life won't be over for you and that you'll come through.

~~~

his thin frame was covered up to his chin with stiff hospital blankets.

they tell me i have lupus, he said. i looked it up online. there are two kinds. i have the systemic kind. that's the bad kind. what happens to me from here? then his eyes filled with tears.

only my eyes were visible above the mask covering my face; they too filled with tears. i have lupus too, i confessed.

he seemed stunned. he commented on how i seemed so functional.

i've been really sick before, i get really sick sometimes. then sometimes i'm better and i cram life into those days and weeks and months. i don't know what this illness will be like for you, but i do know that it isn't a death sentence and that your life isn't over. the waiting and hoping to feel well and the uncertainty of it all is hard, but you are strong. you will come through this.

he is.

 

enough

she asked me to tell her about myself. i grew up in south florida. moved to swaziland for a year after college to do HIV public health work. came back to go to med school. now i'm doing residency here.

do you think you'll go back to africa when you're done here? well, maybe. i want to. i have some health issues.

then the tears start. i tell her how sickness once again caught up with me. about my recent hospitalization and missed trip to europe. how i was well enough to fly to LA for the last couple days of my vacation. how i don't want to start the new IV medication they are putting me on.

she tells me how amazed she is at how much i've accomplished despite this sickness. how i managed to finish med school. how i'm finishing residency. i breathe out deep breaths of thankfulness as she says this. the stepping back to tell the whole story reminds me of how far i have come. the little losses of this past month seem small in comparison to all the huge graces that have carried me this far.

i once read about a jewish song, dayenu, that is apparently a part of Passover celebrations. the word roughly translates to me "it would have been enough for us." the song talks about how god led israel out of slavery, about the miracles god did for israel. at each point, it pauses to say "it would have been enough." if god had only given one of those gifts, it still would have been enough.  

as i told my story, the concept of dayenu kept running through my head.

if i only got the chance to live on red swazi earth for a year, it would have been enough.
if i only finished med school, it would have been enough.
if i only finished the first year of residency, it would have been enough.
if i only danced in a sari at my best friend's wedding in india, it would have been enough.
if i only had enough energy and love to get through today, it would have been enough.

the list goes on, a trail of goodness that fills the life that often feels like wilderness. i'll take the mix of good and bad: the trips to india where i pack both saris and pillboxes. the southern california sun that came after a canceled trip to europe. days in a hospital bed surrounded by amazing friends and cafeteria milkshakes. 

it is enough.

 

 

life, interrupted

september 2012:
it was a triumph. an act of defiance against a disease that limits me. i knew there were risks, but i had to take a chance and live life.

it was the middle of the night when the plane landed in delhi, and there was only darkness out the windows. my flight to bhopal took off a few hours later. the sun was rising by then. as the plane lifted, i saw the indian landscape for the first time. without even thinking, i exhaled the prayer: blessed are you, o lord, who has kept us alive and sustained us, who has brought us whole to this moment.

i had first come across that prayer in the worst of my illness a couple years earlier. it bothered me because though i knew i was alive and sustained, i felt anything but whole. i repeated it over and over in my head, wishing it to be true. 

in the air over delhi, i finally felt that wholeness and breathed out my thankfulness.

march 2013:
we'd been planning it for months, my friends and i. we were going to see london, then take a train to belgium, then i would fly over to prague. i had a stack of tour books from the library and a list of everything 1000 places to see before you die told me i needed to see. i imagined myself walking along brick streets and through the alleyways and across bridges, taking it all in.

the pain started 5 days before my departure, and i thought i could shake it. i tried so hard to get better in time; in the end, i was admitted to the hospital hours before my flight to london was scheduled to depart.

that triumph i had felt on a plane only months earlier, that i was expecting to feel again as i drank tea in london and ate chocolate in brussels and explored the streets of prague was replaced with with sadness.

again that prayer came to mind: blessed are you, o lord, who has kept us alive and sustained us, who has brought us whole to this moment. except i didn't know where that prayer fits when my assigned seat was empty and a hospital bed was occupied, when the fatigue wasn't from jetlag but from not getting enough oxygen, when it isn't belgium chocolate but hospital cafeteria food that i was eating.   
 
this disease that feels like death by a thousand cuts - a cumulation of a million little losses - is somehow countered by the one thousand gifts that fill my life.

there is sadness over this lost opportunity, over the time with old friends that wasn't lived, over the world i couldn't see, over the air i struggle to breathe, over once again having my plans altered by a disease i didn't want. but my heart is also filled by the friends who visit the hospital even though it is their day off and who make sure i get a milkshake on each meal tray, by the sister who stays all day and paints nails and plays drawsome even though she hates hospitals, by the parents who bring lunches and daffodils, by the sun the rises over the city reminding me that someday things are gonna get brighter.

 

refuse to fall down

"Refuse to fall down.
If you cannot refuse to fall down,
refuse to stay down.
If you cannot refuse to stay down
lift your heart toward heaven
and like a hungry beggar,
ask that it be filled,
and it will be filled.
You may be pushed down.
You may be kept from rising.
But no one can keep you from lifting
your heart toward heaven — only you.

It is in the middle of misery that
so much becomes clear.
The one who says nothing good came of this,
is not yet listening."

a prayer - clarissa pinkola

days like this

everytime my disease flares, my soul returns to the same place of brokeness. my body aches with the same aches and crumbles under the same fatigue. my mind races with the same fear: what if this never ends?

days like this feel like wilderness.

it's hard to ask for help. it's hard because asking for help inherently implies there is a problem. and i don't want to have a problem. i don't want to be sick. i don't want fevers, i don't want my wrists to ache, i don't want to be so fatigued that i have to calculate every action, every activity to make sure i'll have enough energy. i don't want to be away from work and friends and sunshine. i don't want my bed and the collection of pajamas that friends have given me during past periods of sickness. i don't want the pills and the side effects and the tears that come so unexpectedly.

i know this isn't forever. but in these moments, it feels endless.

when i feel swallowed up by the sadness of it all, i tell myself a story, a story told long ago. it's the story of a nation (israel) that wandered in the wilderness for what turned out to be 80 years. it's the story of their journey from enslavement in egypt into what was called the "promised land." the story starts with their dramatic exodus out of egypt, after ten plagues and a hard-hearted pharaoh that finally releases them.

then there is a brief interjection into the text: god did not lead them by way of the land of the philistines, although it was nearer; for god thought, "if the people face war, they may change their minds and return to egypt." so god led the peope by the roundabout way of the wilderness.

what follows is a long account of their wilderness journey. the stories told from the wilderness are stories of mere survival. of extreme thirst, then water that comes from a rock. of hunger, then bread that falls from heaven each morning. of endless steps, but shoes that don't wear out. they are not stories of victories or thriving or indescribable happiness. they are stories of sustenence. of enough - but not more than that.

what i love about this story is that somehow their being led into the wilderness is an act of mercy. that the more direct route would have brought them into war - so instead they wander and are sustained in the wilderness. 

i don't know what the alternate paths for my life might have been, where a life without illness would have led me. but i hope that somehow this is grace. and i know i have enough love here in this wilderness to sustain me.

someday

usually, it's part of my routine:
pouring pills into my mouth every day and quickly chugging water.
having needles stuck in my arms each month so my doctors can monitor blood counts and organ function.
sitting in waiting rooms and sterile offices until the doctor comes so i can beg her to let me take fewer pills.
usually, it's all okay, and these things are inconveniences, but life moves on.

then sometimes, the routine gets shaken:
despite the medications, my body drags and aches and little things like Garmin telling me she's "recalculating" causes me to burst into tears.
blood tests come back with values that are no longer normal.
i sit in more waiting rooms, but instead of begging for fewer pills, i beg to feel well.

sometimes, the thought of more invasive testing leaves me sobbing, even though i've ordered the same invasive test on a hundred of my own patients and promised them they would be okay.
sometimes, i shudder at the memory of coughing up blood for days after my last bronchoscopy and swear that despite my doctor's recommendations, no one is putting another camera in my mouth. 
sometimes, i just don't want to do this anymore.

and someday, i hope things will be okay. 
that my body won't feel like its breaking.
that there won't be tests i'm avoiding. 
that there won't be infusions to schedule. 
that my soul won't be weary of the pills and the bloodwork and uncertainty. 
that i'll recognize the privilege in all this - that i can opt out of testing and treatment, when my swazi friend has been waiting months for a CT scan.
that i'll see that maybe, somehow, this is grace.

intern year, end. second year, begin.

during our intern orientation last june, one of the chief residents said, "if this year isn't the worst year of your life, you've had a pretty horrible life." this past year was definitely not the worst year of my life (and i have not had a horrible life). this past year was hard, but i've had harder. this past year was hard, but there was grace.

there are things that have been difficult: a three-day hospitalization for pneumonia. turning down a residency position at hopkins because something in my heart told me i need to be here in pittsburgh for now. keeping people alive who should have been allowed to die in peace. letting people die who i wished could have lived.  

but there are also things that have been beautiful: finding out i really like seeing patients. being healthy enough to see patients. only needing to take five sick days all year (compare with at least thirty the year prior). giant chocolate chip cookies from the hospital cafeteria. being able to meet my parents for dinner after living away the past nine years.  making new friends. escaping to mexico and the pacific northwest with old friends. finding i am stronger than i imagined.  

so i take a deep breath in and let a new year begin. 

remembering

it's been six months.
six months of long days and nights working in the hospital. six months of my pager beeping as soon as i get food or sit down or fall asleep. six months of asking people why they came to the hospital. six months of being called doctor (and often nurse) yet still having no idea what i'm doing. six months of survival. six months of health. six months of being near family, of living with a sister who leaves chocolate and reminders to "just keep swimming." six months of grace.

it's been one year.
one year since the dark days of sickness that left me unable to move without oxygen wrapped across my face. one year since the endless days of fever and gasping for breath and tears and enough daytime tv to last a lifetime. one year since i've needed a chest x-ray or any new medicines. one year of survival, of fighting to get enough sleep, of swallowing handfuls of pills to stay well, of taking each day as it comes. one year of grace.  

it's been five years.
five years since i walked through customs back into the united states. five years since i've used my passport. five years of speaking (mostly) english. five years where my shoes aren't stained with red african soil. five years where my heart is on the other side of the world. five years of waiting and praying and wanting to return. five years of sickness and schooling that have kept me from a tiny african kingdom. five years that i struggle to call grace because it's hard to be away. it's hard to feel powerless in the face of overwhelming need. to read the news stories of famine yet not be able to offer rice and beans to a hungry neighbor. to know their are thousands of kids without parents but not be able to hold at least one of them. to have friends who grieve the losses of aids but not be there to grieve with them. it's five years of weak prayers uttered to the heavens, of letters and packages with airmail stamps, of sporadic updates. five years of telling stories that keep my heart remembering the love of my beautiful swazi friends. five years of grace.

   

on healing

do you think god will heal anyone who asks and has faith? my sister asks me. 

me, who witnesses sickness every day in the lives of my patients.
me, who lived in the nation with the highest hiv rate in the world, who buried friends before they reached age thirty because they were born in the wrong place as the wrong gender.
me, who carries sickness in my body every day. 

if the answer to her question is no, then why pray?

and if the answer is yes, then where have my prayers for healing gone? why do my swazi friends still fight HIV despite their prayers (and lives) of faith?  why does my body still feel like it's breaking even though i have lit candles and cried out, "how long, o lord?"

i don't have an answer for her question. i only have a story, one i re-tell myself in the moments i feel faint:

i met jabu shortly after i arrived in swaziland.  her name means "happiness" and that is what she was.  she got sick quickly though as HIV spread through her body.  she shuffled slowly down the hill as if every step took all that she had.  she seemed to get smaller every day.  soon, she just stayed home. 

i stopped by to visit jabu one afternoon, like usual.  only this time, she was barely moving, barely opening her eyes. her mom stood fanning her, trying to move the heavy african air across her feverish body.  we lifted her into the car and sped across the 30km of curving dirt roads to the nearest hospital.  by the time we got there, she wasn't opening her eyes at all.  her blood pressure was unreadable on the archaic cuff they used to measure it, barely palpable.  the doctor looked at us sadly: we have no beds left. and there is nothing we can do anyway. 

 we begged for them to keep her, knonwing if we took her home, she would surely die.  knowing too that if she stayed, she would still likely die.  the doctor finally caved, offering the floor under the bed of another patient.  we left her that night, her tiny body on the floor under the bed of another dying woman.  chickens walked past her spot on the floor.  a meager bag of IV fluids hung - the only attempt at treatment offered for her. 

the next morning she could open her eyes, and was discharged to home.  miraculously, over the coming weeks, jabu regained strength and life. 
we were sitting on her bed one afternoon, laughing and talking. i asked her what happened that day when we thought she would die.  she answered: i was lying there, and i was flat. i couldn't open my eyes, couldn't speak. but in my heart, i prayed "lord, extend my days." and he did.  i will never forget what the lord has done for me.  

she never forgot. she never stopped praising. one month later, jabu went to be with the one who had heard her prayer and extended her days. i'm pretty sure she's still singing her praise.