world aids day

remembering these beautiful women today: 

 

and, as always, praying that hiv would end. soon.

changes

"Africa is never the same to anyone who leaves it and returns again."
Beryl Markham, West with the Night

 

i knew when i left swaziland things would be different when i returned. bulembu has changed. a daycare that i imagined has now come and gone. but now, she is gone too.

 

and now, the thought of returning makes my heart ache. without her, i feel like i will be a visitor again rather than one returning home. i feel i will be starting over, a wide-eyed white girl who has to prove herself. without her, i feel that swaziland is irreparably changed for me.

 

but more than how swaziland will change, i wonder how life here will change.

 

i worry that without her telling me she can't afford the CT scan she needs, i'll take for granted the health care dollars i consume to get the right medications and see specialized doctors and monitor my blood levels.

 

i worry that without knowing she needs new shoes, i might buy the shoes i want without thinking.

but most, i worry that without her, the hundreds of thousands of women in sub-saharan africa who fight HIV will become a nameless, faceless mass. i need her stories. i need to know there are days she can't lift her head and the nearest hospital is a 3-mile walk followed by a 15-mile bus ride away. i need to remember the hungry children she so beautifully cared for. i need her so that my heart stays soft, so that i continue to pray and give, so i don't forget how much bigger the world is than just me.  

 

when there aren't words

i read the message twice: she is unable to speak right now. please pray now.

i knew zandi had been getting progressively sicker, the blood clot, the t.b., the hiv all summing to struggle for survival.

as i read the message, my mind flashed back to seven years ago, to another friend who couldn't speak. that time, we wheeled my near-lifeless friend jabu in the same hospital where zandi was now. jabu miraculously survived that day. when she described it later, she said: i couldn't open my eyes, i 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.

and so for zandi, who couldn't speak, my own heart cried out: god, extend her days.

only this time, god did not.

this time, another 3 children joined the 100,000 orphaned children in swaziland.  this time, a grandmother added 3 more grandchildren to her home; she already was caring for the 2 children of her daughter that died of AIDS last year.

this time, the world lost a woman full of life and hope and strength.

this time, i lost a friend.  

"precious in the sight of the Lord is the death of his saints."

-psalm 116:15

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.

pray with me. please.

"no matter how wide you stretch your fingers, your hands will
always be too small to catch all the pain you want to heal."
- sarah kay, "if i should have a daughter"

over and over i'm reminded of how powerless i am across an ocean.

for months we were inseparable, wandering the hills of a near-abandoned town that previously thrived from its now-closed absestos mine. she taught me to quickly drink a can of coke after eating bad meat so the acid will hopefully kill any bacteria (i don't know if this actually worked). she built a fire to keep me warm when fever and chills left my teeth chattering and body shaking. she fed me swazi comfort food as i recovered from a crazy parasite (fyi - soured milked poured over maize meal is not a comfort if you are not swazi). she sat next to me during my first swazi funeral, translating all that was happening despite her own need to grieve. she dragged me over a mountain so we could play in a beautiful hidden waterfall. she brought me fresh donuts from the bread truck on my last morning in swaziland. 

now her places of need grow larger by the day:

...it's a bad headache. they say i am lacking blood...
...i'm losing my job, we are shutting down...

...i made it to the hospital in the capital but it was not easy to walk there. there is a blood clot in my leg. the doctors put me on a medicine called coumadin. i need a c.t. scan but it is very expensive. praise god it was not a stroke...

...the people of this town, they have no mercies for me. they want rent for the house while i have no work and am sick... 

...i trust god won't test me with something i cannot handle... 

my heart breaks over again with every message. i spread open my hands trying to catch her pain. i send out frantic emails until i find an expat who i can send money to that can get it to her. i cry out prayers and tears and beg for her to be healed. i message words of love and put airmail stamps on hallmark cards but her pain deepens.

and so...can you pray with me for zandi? for healing. for a job. for hope. for her amazing faith to continue to strengthen her. and as always, for hiv to end. soon.

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. 

hope without healing

honored to be here today:

I first read about Swaziland when I was eight. I learned a few key facts: Swaziland is surrounded by South Africa (I know you were wondering where it was), it is ruled by a king, and there are no lions there... (keep reading)

what death looks like here

"Public health is the art and science of deciding who dies,

when, and with what degree of misery." - Bill Bicknell

Swaziland, December 2005
she'd been sick for a while, sent home from the government hospital because they had nothing left to offer her. HIV and t.b. combined forces to drain the life from her body. she spent her final days at her homestead, with her momma, sister, and baby boy at her side. her last night on earth was spent singing and praying. she offered up prayers of forgiveness - for the one who gave her the virus that took her life and the life of their firstborn child. my friend tells me she was at peace and that was why she could die that day. she was 27.

United States, May 2011
he'd been sick for a while. cancer and age and recurrent infections numbered his days. he spent his final days at a long-term care facility, his life sustained by machines. his heart stopped on three occasion during his last night on earth. two of those times it was forced to beat again with the help of electricity and chest compressions and chemicals pumped into his veins; ultimately, his 80-year-old heart refused to beat any longer. 

one of these deaths was inevitable. one was preventable. one called on every bit of science and technology available; the other called out to the heavens. one was alone in an ICU bed, with doctors violently attempting to bring him back to life. the other was surrounded by friends and filled with peace and acceptance. 

i know that you can't put a cost on a human life. i know we don't get to decide who lives and who dies. but i struggle with how we can spend millions of dollars to extend a life by months while not spending the hundreds of dollars that would extend a life for decades. i hate how being born on the wrong side of the equator with the wrong color skin means your life might be thirty years too short. i hate the days i go to work and order tests and medicines that will only sustain a person with a terminal condition for a few extra days. i hate that my inbox fills with messages from swazi friends who can't get to doctors or can't afford medicines for things that are treatable. i hate living between these two worlds, of seeing the injustice and disparity. i hate the powerlessness - both in futily treating terminal conditions in order to honor a patient's wishes and in being unable to treat curable conditions in those without choices or options.

why i hate missions, part 2

again, a message in my inbox from swaziland. i'm losing my job at the end of may. we are shutting down.

it's a care center for children that she is talking about. a place that feeds 100 children each day, that employs 8 swazi women (including my friend), that helps vulnerable children with medical care and school fees.

the one who created the center is leaving swaziland. i don't know the reasons behind this decision, but i'm sure it was difficult. it's always painful to leave a place that has become your home. it's excruciating when you worry the ones you leave behind may go hungry or get sick or die in your absence. she is facing challenges. it was not yet time to leave, my friend tells me.  

my friend has told this story of missionaries fighting before. the story of people coming with promises of hope and healing and living partway into those promises - only to get entangled in disagreements with each other and governing boards about theology or funding or how missions should be done. then leaving.

this cycle is wrong. to come in the name of jesus. to do beautiful things. to leave in the name of jesus, re-creating chasms of need.

is it better to not go at all?

for five years now, the kids that i knew as they sat outside their homes all day while their moms worked have had safe places to place and food to eat and medical attention.  the worms in their bellies have been treated. their bodies have grown. their minds have developed. would it have been better for them to have remained on their stoops for those years? i'm pretty sure the answer is no. but to meet a need and to create a community that depends on that need being met - then no longer being there with no option for sustainabilty? that seems like the wrong answer as well. 

and i ache for the one who has created this beautiful thing and now is leaving it. i ache for my friend who again must look for work to support her and her family as she fights her own battle with illness. i ache for the kids whose bellies may sit empty. and i wait for the day when there is no more hunger.

learning to breathe

"Let us not underestimate how hard it is to be compassionate.

Compassion is hard because it requires the inner disposition
 to go with others to the place where they are weak,
vulnerable, lonely, and broken." - Henri Nouwen

there is a tibetian practice, called tonglen apparently. a way to face the suffering around you, the darkness in this world. it is simple - when you encounter the suffering of another, you take a deep breath: breathe in suffering, breathe out compassion.

mostly, i don't do this. instead i rush from room to room, prying into people's places of pain, poking the areas that hurt the most, then leaving them alone again. mostly, i'm simply trying to survive myself. i can't handle thinking that hard about the suffering of those around me. but sometimes, there are moments where i pause. where i breathe and offer grace.

sixteen, overdosed on her mom's pills. a mix of pain meds and tranquilizers, she slips in and out of consciousness. everytime we bring her back she wakes up screaming curses and begging for cigarettes. there is sadness, for the life she's given up on. i breathe in her sorrow, and it touches my sixteen year-old self that also ached to find reasons for hope. i breathe out compassion: may she find a reason to live.

five months pregnant, found unconscious. cocaine and methadone running through her blood. a tiny heart flickers on the ultrasound screen. deep breath in, a prayer exhaled out: may this baby be whole.

a birthday celebrated in the hospital, a strange milestone in her 250 day hospital stay. i leave a cupcake on her bedside table that i know she won't eat. i inhale the futility that hangs in her room, the futulity of the machines and medicines that sustain her but cannot offer healing. i breath out an aching cry: may her suffering end quickly, and may she have happiness until then.

back for the third time, now with a breathing tube in his throat. two months ago, his predicted mortality was 100%, yet he still fights. i talk with his wife in the waiting room, telling her if she didn't call when she did, he wouldn't have survived. she bursts into tears in my arms.i pull in air and her tears, and breathe out a prayer: may she not find herself a widow. may she continue to find strength.

and every day the stories keep coming, and i keep learning to breathe.

it's not fair.

i can't do this.

i can't have my heart break across an ocean.

i can't hear that she's sick. i can't hear how there's a special doctor that she can't afford. how she can no longer work. how she lays in her house helpless. 

i have so many questions for her. questions i ask my patients every day. when did this all start? where does it hurt? what makes it better? i need to know what is going on.

my mind reels...i count all the kinds of headaches that can kill you when hiv has invaded your body. she can't have one of them.

she tells me what medications they've given her. clearly they aren't working because she feels like she's been cut into four pieces.

if she were here, everything would be different. there are blood tests and ct scans that could tell what this is. there's a prescription pad in my pocket that could fix this. but she's there.

anger wells up because it's JUST NOT FAIR. 

why is she there and why am i here and why is life always so hard? why do i get a hospital bed for 3 days for a pneumonia that would never kill me while she keeping walking on red earth as her blood counts continue to drop and her body crumbles in pain? why does she have the technology to message me updates in real time, yet she still wastes away from a treatable, preventable disease? what if they can't fix this with their limited resources? what if she has to wait too long? what if i don't make it back to see her in time?

my heart cries out, how long, o lord? and as always, may hiv end. soon.

The nearest hospital, Piggs Peak Government Hospital

a tale of three psych patients

a recent conversation turned to the subject of abuse, to the dialog and community that exists for women who know what it is like to lose control of their bodies. since that conversation, my mind keeps drifting to the stories of these three people:

he presented in raging mania. i asked what brought him in. it was 15 minutes before his voluminous speech slowed enough for me to interrupt. we backtracked to where this story began, to where he found out his twelve year old daughter had been molested by a cousin. rage burned in his eyes in the re-telling. devastated, he had withdrawn the whole of his savings. he bought a gun, rented a hotel room, and spent the rest on crack to help him "get up his nerve." somehow the plan was severed, and he ended up sitting across from me in a small room of an inpatient psych unit. his anger toward the one who abused his daughter was overwhelming. no mood stabalizer would change that.

she was transferred from the emergency department after 26 staples were placed, holding her arm together. it was one of her alter personalities who did the cutting, she assured me. her mind began fragmenting after her childhood self was subjected to horrible abuse by horrible men. no staples could piece together that kind of trauma into a whole person.

he told stories of incarceration. his ex-girlfriend claimed he "stole the love." she wanted it, he promised me. he was angry at his months behind bars, at his court-ordered sex addition counseling, at her for blaming him. no words would convince him of any guilt.

these three, they collided into my world within days of each other. they passed each other in the halls of an urban psych ward, each carrying part of the story of abuse. the abuser. the abused. the father seeking justice. all carried anger and brokenness. all needed help that medicine couldn't give.

i try to weave their stories together in my mind, hoping they will bring meaning to the atrocities of abuse that exist in the world. hoping they will somehow shine light on the healing process. hoping there is hope for each of them in their own way.

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.