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.