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.

 

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.