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.

   

telling hope stories

it is difficult when an organization or non-profit or mission group enters a place of extreme need, to know where to begin.  so triaging occurs, attempting to reach the most broken places. the problem is sometimes gaping wounds remain untouched while attempting to salvage the most devastating injuries.  when i got to bulembu, swaziland, the gaping wound looked like this:

children, too young for school (or old enough for school but unable to pay school fees), would stay home while their parent worked.  there was no day care; even if there was, it was unlikely any parent living on US$60 a month could afford it. and so once a child was too heavy to be carried on her mother's back during work, the child would be left home, under the care of older (meaning age 5-6) children.  a pot of room-temperature cornmeal mush would be left for lunch. 



it was painful to pass these children. to know the work i was doing with children orphaned by hiv was important and necessary, but to still pass these hungry, left-alone children with scabies under their skin who were fortunate enough to still have a parent.  my housemate and i could not keep doing nothing.  we knew the organization did not have the capacity at that time to establish any long-term solution. but we knew we couldn't keep walking past, doing nothing. so on saturday afternoons, we toted tins of grapefruit and a dysfunctional can opener into their neighborhood and would play with these kids:

we were a band-aid (if that). a desperate attempt to do something, to not close our eyes to what was happening around us.  we were limited.  we cried and we prayed and we hoped that someday things would be different for these kids.  an answer to those prayers came shortly after i left swaziland: a woman from the uk came to bulembu to set up a care center for those very children that had evoked my tears and worry and food and prayers for so many months:

it is called enduduzweni, which means "place of comfort."



my friend zandi works there now. the care center has grown over the past 5 years, and it now expanding to include baby care.  i am told that zandi does an amazing job, that she has a gift for working with children. i knew that though.

this story is incomplete. it is only a small part of the story, limited by distance, detached from the daily struggles of those who now carry these children.  i am not trying to romanticize what is chronically an uphill battle.  i cannot speak to the gaping wounds that still exist that break the hearts of those who are there now.  

i know that love poured out during the day doesn't negate neglect at night. that tummies filled at lunch time may not be filled again until the next morning. that moms who build loving families and still get hiv from dads who work in the big cities. that summer floods wash away roads and houses and crops and threaten a precarious economy.

but it is still a story of hope. of tummies now filled during lunch that would have otherwise been hungry.  of kids left alone on doorsteps while their moms work now with safe places to play and learn and be cared for. of people choosing to offer love despite struggle and suffering and cost. i know what was, and what is now. and it gives me hope.  
i know that the story of these children is not over. the story of edudzuweni is not over.  the story of swaziland is not over. and so again, still, we wait for hope to come true.

"for there is still a vision for the appointed time;
it speaks of the end, and does not lie.
if it seems to tarry, wait for it;

it will surely come, it will not delay." - habbakuk 2:3

(ps - if you want to give to enduduzweni, click here. it costs US$150 a day to run the center - which feeds 100 children, pays the salaries of 8 caregivers and cooks, and assists vulnerable children with medical care and school fees.)