in parallel

yesterday was so long and there was so much there, and i was so tired and had so much to say, but no idea where to begin- that when we finally reached home, i kissed the kids who were still awake- ate too much peanut butter with too many chocolate chips, drank milk tea and tried to watch 'pride and prejudice' (chosen so that i could be totally removed to another place and time).

but right after that great exchange between mr. darcy and elizabeth bennet,

mr. darcy: So what do you recommend to encourage affection?
ms. bennet: Dancing. Even if one's partner is barely tolerable. 

i fell asleep. 

yesterday my dad and i spent the day in the village in luweero.  it was a long day at the clinic, after a long drive to get there, with too many people in the car, and a long drive back.  but really, there is nothing in the physicality of the drive or the talking through a translator to the 60 patients we saw, it's in the constant reminder of the state of affairs.  it's the problem solving of how to remove so many barriers, all day, with almost each case- that gets exhausting.  it's feeling like you're not able to do anything for people.  it's like being a doctor during early 19th century england when mr. darcy was falling in love with elizabeth bennet.

but we are not in the early 19th century. and i trained to be a doctor in big cities in america, in places where we did not just do anything, but everything for our patients.  where one life- really mattered.  where it was hard to not see the idea of death as a failure.  where deaths in the hospital are the rarity not the norm.  where hospitals don't turn away really sick people.  where the individual trumps the group- where saving a life- trumps time and cost and inconvenience.

but this is africa. this was a rural village.  this was a child in a family, in a tribe- not the same idea as we have of an individual.  and this was a sick child.  a sick child just diagnosed a few minutes before with HIV.  a child with deep festering sores all over him- armpits draining pus- neck and back denuded- all of them covered in flies- flies that wouldn't leave. this child was sick and tired and whimpering and hot and floppy.  he needed to go to the hospital- to start HIV meds, to get a correct diagnosis of the skin lesions and IV treatment for his infection, some hydration, some wound care.

we told the family that because there was no pediatrics in the local hospital,  we would refer him to mulago, the national referral hospital in kampala. dhundhundhun. yikes.  they were not thrilled. 

they have no money- how will they get there? how will they pay for the treatment?  they dig for yams everyday.  i'm sure they wondered why we were so worried about a 2 year old AIDS baby in a village? this is life.  life has death.  things happen. we usually have no control. 

we looked at their somewhat blank and seemingly over accepting faces of the cards they'd been dealt. 'but your baby could die soon!' we said.

i'm sure they knew that.  i'm sure they were surprised that we used the word could and not will.

after they agreed, i called a wonderful professor of pediatric HIV who works there and she told me how to get him seen.  i wrote the referral- gave money for transport- told them we'd follow up and help get them what they needed at the hospital.  we sent them off- it was the best we could do.  but.  i had a dark feeling in me- that things wouldn't work out- that i knew better- that they knew better.  that we all knew that the system doesn't work as it should or could.

at the end of clinic as we packed things and people in my car i became aware of a massive swarm of flies in the back seat. there was the child, in his moms arms- everyone now covered in flies. 

there had been confusion- they would need help navigating the big city hospital- so we opened the windows drove down the 25 km dirt road to meet the next car that had people who spoke lugandan and could take them. but i gave it a 50-50 chance that they'd actually go.

when we finally got into a town where i could access internet service on the phone- i found out my friend, who had been sick and in the hospital back home, had passed.  i knew she was dying- i knew she had end-stage cancer.  i had been thinking about her constantly.  it was not a surprise, it was in fact a relief that she'd gone comfortably,  but i just wanted to be alone, to drive and cry-(about a lot of things). not in a car with flies and people speaking loudly in another language.  i didn't want to think about that child's gross wounds and the hopelessness of the healthcare here, or the absurdity of how some people are surrounded by cleanliness and pain meds and beautiful music at the end - and others can't pay for a crowed taxi to attempt to get their kid life saving care.  i wanted to think about my friend and her life, and our memories, and the unfairness of her death at 41- after everything had been done. but how could i when i was riding in my own car, with the unfairness of likely death at 2- from something treatable??

that night i slept hard, but woke a few times with the peace of my friend smiling at me, reassuring me that she is now well, alternating with the disruption of that inner voice saying "you shouldn't have sent them to mulago".  i know better than to listen to most things in the middle of the night- but i trusted the first and feared the second were true. 

and i was awoken with a phone call from on of our workers saying mulago had brushed them off- not admitted him- the boy was given a prescription for an ointment.

an ointment.

in the places i've trained in and worked at in america this would be: admission, infectious disease consult, blood cultures, wound culture or biopsy, TB test, CD4 count, CBC, electrolytes, likely initiation of antiretrovirals, rehydration, IV broad spectrum antibiotics.  the parents would be told that the baby would likely be okay- that we'd figure it out- that a doctor would be there all night, nurses would be there all night.  the child would be fed, put into a safe, comfortable and clean bed. gloves would be used, needles would be thrown away in an osha approved needle waste container, hands would be washed, universal precautions would be taken. communication would happen. 

it's just hard.  death, no matter when, or how, or why.
it's hard to be far away from a friends dying.  hard to practice medicine in a place where death is accepted when it seems it shouldn't be.  it was hard to practice medicine in a place where death wasn't accepted when it seemed it should have been.  unstoppable cancer.  treatable infections.  western top end city hospitals.  small villages in africa with no real access to care. 

is it unfair? yes.  did both things break my heart. absolutely. do both things break God's heart?  i'm sure they do.

what is our response?

do we shut it down?  pack it up? close off? become bitter? sarcastic? resentful? angry at the God who gave us life in the first place? so angry that we don't believe in God's existence? we can.

or we can choose to cry, and miss her, and support her family, and pray for them, and each other. 

we can apologize for sending the baby all the way to a hospital that turned them away-and thank them for trusting us- hope they trust us again- get them the best medicines we can give as an outpatient, clean the wounds ourselves, and pray for them.  we can pray for encouragement in the midst of discouraging times and in discouraging places.  we can pray for the strength to try, to do our best, to tell the people we love that we love them- often- because who knows what our days hold.  we can pray for the courage to go back to the village, to work in a broken system, to slowly chip away at improving it. 

we can remember our best days, learn from our bad days, hold on to our laughter but also our tears- and thank God for all of it.  yes.  all of it.  thank God that it breaks her heart too.  and we can do our best to love each other.

three avocados and a long walk

humbled again.  and ashamed of my assumptions. i have a story to share.

i've written before about the constant need that surrounds us and the pendulum swing of my response.  we are asked often and by all types of people, from neighbors to strangers, for money or food or assistance.  we are told many stories of hardship and loss and desperation and hopelessness- that all demand a response- usually while looking into the eyes of the one experiencing the trouble.  i vacillate between a broken and a hardened heart.  there are times when i can't believe how blessed and lucky i am and how easy i've had it compared with most of the world and i cry right along with the person sitting on my porch and reach into my wallet and cupboard and pray with them and as i watch them walk away i hope that their story is true, that i haven't been taken advantage of - which is kind of absurd because even if their story is made up i still have way more then most of the people here (so can i even say 'taken advantage of''?)

other times i am really resentful of the requests, the assumptions that my white skin means money, as if i should fill in the gaps of history and make right all the wrongs. 

and then sometimes i sit in the middle and try to be soft hearted, and think of the 30,000 foot view.  i think about what will really make a difference- which is really why we are here- in a long and lasting way- which involves relationship and mentoring and living together in community and following up and not just sticking fingers into holes made by someone else- because we only have 10 fingers and there are just too many holes.

on sunday a friend of zoe's came over to talk with me.  i have mixed feelings about this friend.  my gut tells me that i like her- but i've been warned that she steals- that she's not trustworthy.  she came this day to see me, not zoe,  'auntie- can i speak with you?'

she began to cry big tears about how sick her sister was- how they needed money- how her sister has low sugar.  i'm embarrassed to say that the pendulum was stuck way over in 'annoyed by being asked' again.  i didn't feel badly for her at all- i was angry that i was being called upon to give more hand outs.  but i listened- gave her a large bag of food from our kitchen and told her as a doctor i'd be happy to see her sister.  i wondered what she'd do with the food- she wasn't very happy or grateful.

the next day her mom and sister arrived at my doorstep with a pile of medical bills and reports.  i greeted them, impressed that they'd come, and reviewed the material and listened.  it was the typical story of many bouts of "malaria"- usually with no parasites seen on blood smear, versus "hysteria" aka- not a medical problem.  i probed some more.

the girl is "visited in the night by a woman dressed in black who says she is going to kill her"- she fears all night and becomes sick with headaches- and "malaria".  it started the year after her father died- (of malaria) she was first visited by snakes, now it's the woman in black.  there was no family history of mental illness, and i couldn't illicit any obvious clinical depression, there were no loose associations, no manic behavior- and i wasn't convinced that this 'visitor' was an auditory/ visual hallucination, and not just a bad dream, or even, a spirit- because here, witchcraft is very real.

whatever was going on, i was pretty  sure i was out of my league.  that she needed a psychiatrist and a priest- not an internist- but turns out i needed to be both.  on the medical side we discussed mosquito nets- and preventive measures to avoid getting malaria- and i gave her a net, nsaids and panadol and my cell phone number and suggested they call me next time she is sick.  i questioned her about trauma, about abuse, or rape, but she denied anything other than her father dying of malaria which is pretty typical.  so i promised a house call the next time she was sick, and i prayed with her and her family- for safety and freedom from these nightmares, and for protection and peace.

today i got called.

i knew it! i thought.  only 2 days later!

she was sick- "collapsed" and was "unresponsive".  so i told the mom if she would come get me, i would go with her to the house, but i really didn't want to go.  i wanted to make a chocolate meringue pie and hang out with my mom.  i wanted to organize closets and make systems.  i so badly wished i was Jesus and could say "go and be healed" over the cell phone without leaving my porch- but i'm not and i doubt that he would have done that very much because first of all, he would have been smart enough to not give out his cell phone number!  but today i wasn't called into pie making or sorting piles. and i'm so glad. 

we walked about 3 miles to her house.  i mean it was far, far.  farther than i'd expected.  we arrived to see the girl sitting calmly just outside her door.  we went inside- i examined her fully, no temperature, no abnormalities, normal neuro exam, normal blood sugar.  i told them she was healthy, that she needed to get up and eat and i called her pastor and asked if he could send someone for counseling and prayer. then i prayed with them again and i reassured them that she was physically fine, but clearly struggling in her spirit- that this would take time- and counseling and more visits- by me and others. that this would take a relationship to get better. i hugged them both and they walked me to the road, thanked me and handed me a bag with three avocados.

i wasn't expecting this.  at. all. 

i was expecting them to ask me for money- i was anticipating a "hysterical" girl - a lot of acting- i was expecting tears and begging for help.  i was expecting this so much, that i hadn't brought a single cent with me.  and instead, i got avocados. 

i love avocados.

on the long walk home it was dusty and thankfully cloudy and i walked gratefully down the path beside the road.  i was so happy to be in my life.  that this unexpected visit had become my day.  that i'd been given the gift of being wrong.  i was so grateful that i had strong legs to walk home, and that i hadn't brought any money so i had to walk and could think and process. i was so grateful for the opportunity to be doing house calls again, to be able to reassure them she didn't have malaria, to be privileged to see their home, check their nets (which were hung improperly), and to be walking that dusty road in such a beautiful country, to have a home to go back to, and then to be given avocados.

"what is the word for avocado in lugandan?" i asked as i reached the road before saying goodbye.

"it's the same" they said, "avocado." 

"of course it is."

dependence

the other night there was a 'super moon'.  that is actually what it's called when the moon is closer to the earth and appears bigger and brighter than usual. it doesn't happen very often and it deserves its name.
it was gigantic and full and magnificent.

photo of oregon coast by rockaway beach chamber of commerce

i was driving home as it climbed from just above the trees to the top of the sky. i was driving home from a day doing clinic in a village in luweero as the sun set on one end and this awesome moon rose on the other and i felt full of sky and life and thanks.

sometimes writing is like cooking. it can take a long time to simmer, it can be left on the back burner when other things take priority while it stews- it can grow in strength and flavor as it sits doing its own thing, waiting to be stirred. writing also feels like eating- it needs to be done. thinking about my day in luweero has taken some time but now i'm hungry.

i spent the day as the doctor for a mobile clinic caring for HIV+ people in a village 25 km down a dirt road from a town that was 70km outside of kampala.  the day started early- i left at 7am to pick up the members of the community based organization 'action for the needy' which began this endeavor to bring health care to a poor village of subsistence farming families about four years ago.  it started because one woman, jane, from the village, moved to kampala, tested positive for HIV, got on meds, and wanted to identify and support others in her village with HIV. she wanted to send a message of hope that you can live well with HIV.  she wanted to de-stigmatize the disease, she wanted to improve the health and livelihood of her people, to educate them and do for them, what 'reach out' clinic had done for her- so she did.

jane and henry

we stopped at her brothers house to have tea when we arrived in the village.

jane with her family

it was african tea- sweet, spice and milk- delicious.
then we went to see the land they've procured for a school and clinic.  a beautiful five acres in a farming community.  they need to turn the mobile clinic into a permanent clinic- if they want the government to provide antiretroviral drugs.

the local children came out to welcome us with a song.

and then in perfect uganda style there was a ceremony of sorts.  the chairman of the village gave a speech, there were introductions and i was the special guest of honor.  he spoke luganda, he said they were so thankful i was there and that anything i could do to help them was most welcome. i was most welcome.  it was unexpected and honoring and wonderful.

the clinic was held in a small church in the center of the village.  we arrived to a room full of people- some waiting to be tested, most with HIV waiting to see the doctor, all decked out in their best dresses.

the clinic was busy and we did the best we could with the few medicines we had with us.  i was able to see both the great need and the incredible success of this small organization.  the high point was being a part of something so very real and compassionate.  this clinic was started and maintained with out a funding base, with out a doctor, without any payment to anyone- pure desire to care for those in need.  wow.  the low point was having a woman initially refuse a gyn exam because she thought i was a man.  yes.  a man.  that is what the translator said.  so i promptly unleashed my hair from it's functional bun, and pointed to my chest and said, "i am a woman!"  the woman said,  "well you're a doctor and you're wearing pants, and you walk too fast to be a woman."  oh.  i see.  that is how we distinguish! (note to self- next time where a skirt, slow down and catwalk.)

but it was like being in a time machine, even more than i already feel in my life near kampala.  i was back to before Reach out clinic had a building, or computers, before we had antiretrovirals- because we didn't. this clinic has no building, no lab, no way to even measure CD4 counts to see if clients should be on ARVs.  

on the way home i had a lot of time to think as the conversations in the car were in lugandan.  i felt inspired, somewhat overwhelmed and also sad that this is where uganda is- people in rural areas with out access to testing and treatment.  i began to think about all the things to do, to help, to reach out to them, to connect with this village, to get the clinic going- but going well.  to make it self sustaining, to assist with development and some economic growth- because poverty, again, is the problem.

there is a clinic 25 kms down the dirt road- but there is almost no transportation, and what there is, is prohibitively expensive for a community with no income,  to walk would take about 5 hours each way.  i thought about roads and infrastructure- mike said it would cost about 5 million dollars to pave that road. i thought about what the chairman had said to me in his speech- about need and the tremendous gratitude for help.  i thought about the continued dependence i see here- that has come to be so abundant and ingrained and well, depended on.  and i thought about our being here as missionaries- and something clicked.  i realized something foundational.

there are many ways to land in uganda as western professionals.  there are many hospitals here where i could get a job- perhaps mike could open an architecture firm.  we could make enough money to live- so why on earth did we come here as missionaries?  why did we come here on other peoples dimes?  why did we raise support to be here?

the most obvious reason is that we came here to serve God by working with people and places that couldn't afford to pay us- we wanted to work with the poor.

i've never been poor- i mean poor, poor.  i've had seasons of having "no money"- of watching what we we spend- of not eating out, not buying meat, not doing the extras, but i've never been with out food, i've never not brought my kids to the doctor, or pulled them out of school because of school fees- i've never been with out a home.  so i don't know what poor feels like.  but i do understand dependence.

and that is something we share with those in need.  we have dependence in common. by coming here as missionaries, as volunteers, we are completely dependent on our senders, really ultimately we are dependent on God.  there is no- 'oh i'll just moonlight." or "pick up some extra shifts" - we depend on others for everything. if our funds run out- we have to come home.  we are also accountable to other people for how we spend our money- our resources.  this is incredibly humbling and teaches us much about life for most of the world.

as western professionals, we aren't used to "needing" other people.  we aren't accustomed to depending on anyone but ourselves.  this experience gives us a small window of insight into how the people that we are serving, spend life and for that i'm incredibly thankful to God and to those who support us, who enable us to be here in a way that helps us to both do our work and understand those in a way that we couldn't without this level of dependence.

of course it also helps us remember the truth about life for everyone.  ultimately, like it or not, much of it is out of our control- here we feel that more acutely.  but it's true and scary and we all fight it most of the time and then act surprised when life feels out of control.  faith helps- actually, faith cures the fear of being out of control in an ultimate way- i still struggle with the minutes.

we do what we can.  for each other, for the world, for ourselves.

as that moon rose- i was thankful that i am supported but such amazing, generous, loving people who believe that the world isn't so big.  who believe that we can make a difference - that we can make things better and bring hope and care and medicines and empowerment and love and connection and joy to parts of the world that live the reality of dependence- at least for now.

thank you!!

perspective

the other day as i was leaving clinic, a woman stopped my car and asked if i could give her a ride up to the main clinic.  i said sure and she went to grab her bag, and her daughter, who was 6 and very large and needed to be carried.  she plopped her in to the car first and squeezed herself in.  the girl grinned at me, one eye focusing and the other wandering off, i wondered what her story was. 

her name was esther and she was normal until 2 years ago, normal with HIV and TB.  then she broke her leg, and was put in the hospital. one day when her mom went to see esther, esther couldn't move her left side, her face drooped and she was not talking, not really responding.  some tests were run. she was told esther had suffered a stroke of some sort.  she was given some antibiotics (of course) and discharged- not walking, not talking.

esther's father had died of AIDS a few years earlier, her mom has HIV, and she has a brother who is not affected.  esthers mom needed to work so they could eat so esther was sent to the village with her grandmother. but the healthcare in the village wasn't so good, so esther came home, was rejoining our clinic and restarting her medications.  i watched her mom gently lift this overweight child and carry her up the steps, thanking me for the ride.  i watched her mom smiling as she lifted her daughter and smile as she said good bye. there was such acceptance in the way she told her story, and a willingness in the way she cared for her child.

it was another story- one of so many- of tragedy.  there was no wheelchair for her, no crutches, no physical therapy to help her learn to walk again (she has strength on one side), no speech therapy to help her learn to talk again, no clear explanation of what went wrong in the hospital to cause her palsy.

there is no husband to help provide food and shelter for the family, there is no husband to share the burden of lifting esther, bathing her, caring for her.  there is no husband to cry to about how unfair it all is, to tell of her exhaustion at the end of the day, to wonder about the future with.  there is no time for that.  no time for pity, or crying or wondering.  there is only making sure she is taking her ARVs so she's around to care for esther.

i watched her walk slowly up the steps to clinic, lugging that heavy child and i felt so small.  i thought of all the times i've cried to my husband about how unfair life for and with zoe can feel, of all the days i speak of my exhaustion, of all my fears and anxiety about her future.  i realized that i have no idea what it's like to have to carry my child around, to not hear her voice, to have no means or way to help her.  i thought about how zoe can run, and speak and learn; i thought about all the hours of therapy she's had, speech, physical therapy, occupational therapy; and how much this girl needs that. i thought about how easy it is to feel sorry for ourselves, how we have moments of meeting the esthers of the world and the mothers of the esthers, and we briefly see our problems in contrast, we briefly hold on to thanks, are awed by their strength, but then we come home and forget.

i told the mom that she was brave and doing a great job and that i know it must be so hard.  i told her i think medically esther can make some progress with moving and walking and probably talking- but that we'll have to really work at it.  i told her i would look into to some options for intensive therapy for esther- but at least on monday afternoons she can bring her for physical therapy at clinic, she can learn what to do at home.  they can begin.

maybe i can begin too.  because i don't want to forget the esthers or their mothers, and i don't want to feel sorry for zoe or myself. i want to feel so very thankful for her- for my life- even the sticky parts- because this is the life we've been given.  because in it and through it, we've been blessed.  i want to take all the parts, the good the bad the ugly, and let them transform me into better.  i want to take all the parts and use them to bless others.  i want to hold that perspective.

community

i'm missing the tea fields- the space of them- the time- the quiet.

in kenya, i realized that something is missing.  

i'm missing a like minded medical community in the big sense of the word community.  i didn't notice this, because in uganda, i have a community and i have a medical job.  but when i came to the conference and saw groups of physicians and nurses practicing and working and living together in community with the same goal- to care wholly for people- body and soul- to collaborate and support each other medically and spiritually- to be the hands and feet of our God- i longed for it.  because sometimes i feel alone in the work part, and overwhelmed slightly and not sure where to begin.

when i  listened to their stories and saw their pictures, their hospitals and clinics and training programs, and their lives woven in, it made sense to me that when people are sent out to the ends of the earth they are sent out together- they are sent in groups or pairs- they are not alone- they are in community and then together, integrate into the new community of the people they are serving.

so i began to think about community.  it's hard to define isn't it?  it can be simple- a unified group of individuals, or it can be more complicated- a group of people with specific shared interests or values and culture, living within a larger group.  i really value community, especially when it involves connection on a deeper level. 


one of the most intense communal experiences i can think of is medical training, especially residency.  living in the hospital (almost), eating all meals together, making major decisions that can result in a patient living longer or not, all those hours, all that sleep deprivation, all that stress and learning and growing and wondering sometimes why, and missing those at home, and grieving the loss of time with them, and grieving the fact that we are mortal, that people get sick and die and sometimes we can't do anything to stop it.  all of that  bound us together in community.

i was remembering zoe in those days- and how much i longed for her, hated leaving her after she and mike would bring me dinner at the hospital.  how i dreaded watching her little face cry and her little arms waving goodbye over mikes shoulder as he'd turned to go back home. i remember running to pick her from day care after those 40 hour shifts- the smell of graham crackers and wax crayons and wood chips - how that smelled like life to me. 

several times during internship when zoe was about two, we got together with our best friends and   her 'best' friend lily, who lived across the country.  the first time the girls saw each other, they got down and crawled around the room exploring it together , even though they could both walk. it was their shared experience.  their vocabulary was still limited, so this was their way of reconnecting- of remembering where they'd left off-it was their shared identity,  their little community. after a few minutes- zoe (who was a much later walker) got up to show lily that she could now walk- and then lily stood up and joined her.  together they moved to the next level and toddled around the house exploring.

 it spoke to me about the importance of really relating to each other- about remembering our histories and our commonalities- and about the importance of shared experience in community.

in kenya i began to dream of being a part of a wholistic (i spelled it that way on purpose) medical community that incorporates the physical, social and spiritual needs of a local community.  a clinic that thinks outside of the box-where people are taught health education and sustainable farming, where food is grown and people learn nutrition, and how to make their own 'plumpy nut' for malnutrition, and ORS for dehydration- and in doing so, become empowered and less dependent. where shared experience is shared, and valued.  where a community can begin to problem solve together, to work together for each other, for water to be cleaner, and nets to be used, and helmets to be worn (i'm getting carried away).  but really, this is the way God cares for us- wholly- not in parts.  because all the parts matter.

i love my community here, and i love my job at clinic.  i'm thankful for them.  but i hope that i'll find or grow a truly connected medical community too- one with shared vision and values, shared hope and commitment and location and wholeness.  that i will find people to practice with who just want to be hands and feet with me.

so far away so close

i spent the night wrestling with a migraine then woke up foggy and went to work on a talk i'm giving in kenya next week.  it's on palliative care in the developing world.  as i pulled up some old talks i've given on what palliative care is, on suffering, on giving bad news, on pain management- and i realized how non-applicable much of it is here.  how different the issues are. i began to think about resources and capacity and choice.


we will all die.  we will all get sick.  we all experience suffering in life.  these are universal truths.  but.  how we do these things and our response to them, the tools we have to fight or stave off sickness or death, the cultural meaning of the illness and response to the suffering- that is not at all universal.  it's specific and unique and complicated. and it's really unfair.

it's just unfair that poverty holds hands with illness.  that poverty limits choices, that it silences people, that it keeps people in the dark, that it prevents access and diagnosis and treatment.  so the result is people showing up when it's too late- too advanced- too far gone.

like the woman in clinic.
"doc can you come see this lady, she says she has some ulcers 'down there'"
"sure"
i enter the little corner 'exam' room (or small area of privacy with a table and a curtain).  i can smell the problem before i enter.  she stands peeling off layers of undergarments wet and stained and climbs on the table. its a huge fungating oozing mass extending the entire area.
"okay" i say laying hands on her abdomen to feel for masses, "how long has this been growing?"
"five months."
"why haven't you come to see a doctor?"  i said nicely, but hoping it didn't sound judgemental 'who have you been seeing for this would have been better.'
"i've been going to the local clinic."
"what have they been doing?"
"giving me shots."
i bit my lip- wondering who exactly was giving her shots.  wondering what was in these shots.  wondering how much they were charging this poor woman to believe she was being treated instead of referring her to someone who could actually treat her.

i was mad mad. now we are dealing with a great big mess. 

sometimes it's even harder.  sometimes we find it before it becomes a big mess - but either the treatment isn't available, or it's too expensive, or the person is too scared to have surgery- (because they've seen so many people die 'from going to the hospital').  and then we're providing palliative care for something that would be cured if the person was born in another country.

this week i had an older woman come to clinic.  she was a cute little old lady who reminded me of my grandmother.  she was even dressed a little like my grandmother which is weird in uganda.

*random aside- there are people here who remind me of the ugandan version of people back home. it happens all the time. the other day i saw the ugandan megan marie (my second cousin); a ugandan kim manning; a ugandan bryn; it's weird!

so this older lady comes in with her right eye covered and it's paining her and i'm trying to get her taken care of, while needing to rush out and pick up my kids, and see two other people.  i'm fully stressed about making sure i give her the correct thing so she doesn't go blind.  i'm wishing i had an ophthalmologist nearby. i'm running through the rolodex in my mind to remember who i know who is an ophthalmologist in the US and debating calling them for a 'curbside consult'. i'm asking the nurses to find me the number to mulago- there must be an eye doctor on call.  they laughed. 



i felt like i was in a time machine, that had landed me back a few decades or centuries.


then i had a moment.  this lady doesn't exactly know how old she is, this lady is from the village.  this lady has been living with HIV, has lost many family members to HIV. this lady knows that so many people from the village don't ever get care- or they see the witch doctor or a traditional healer- so many people do just go blind.  this is life here.  she wasn't worried, but i was. 


it was moment of realizing that you do the best you can.  that this lady was thrilled to be seeing (at least with one eye) an actual doctor.  it was a moment of remembering the value of the group over the individual here- and how hard that is to wrap my mind around as an american.  the fact that poor people over 40 don't know their birthday is part of the same picture as the other health providers in clinic not getting riled up over her lack of access to an eye specialist- or the baby with the big head not getting a CT scan.

but there is a flip side. i see how some of the time what we do in american medicine is overkill, or 'cya' or even can cause harm.  i have been able to see simply that the body is a truly amazing machine- that people often do okay when all they get is 'the best i've got' and some prayer.


i've been here almost 6 months.  i love that i have much to give and also much to learn.  that practicing medicine here is a whole new deal.  that even when you can't treat it, or cure it, you can try, and care, and show love.  that in the trying, and the advocating, and the caring- that person feels valued as an individual.  that even in poverty and illness- we can relieve suffering.
so far away, so close. 

it's time now

i admit it.  i've been completely avoiding mulago.

mulago is the big city hospital/ referral medical center for uganda.  i send people there all the time from clinic to get treatment or surgery or a diagnosis, because our 'little clinic-that-could', often can't.  but i've been avoiding it because i'm scared that i will be so appalled that i won't know what to do.  in other words, ignorance is bliss, or at least it allows me to hope for the best.

but i went to clinic today. and oh dear.  the number of eyeball poking experiences i had in the 4 hours i saw patients was impressive.  and the number of times i started to cry inside, was perhaps equally impressive.

what was it about today that changed things? that pushed me to the point of needing to know?

was it the man who was back again after i'd sent him to mulago in december - but now worse- his lung still filled with pus, or fungus or both, weighing even less, still febrile and tachycardic, but now with diarrhea, anemia and a few other complaints.  was it the fact that he'd been not properly diagnosed, not fully treated, and it seems like people must just not care that much? or is the system that overwhelmed, the resources so poor, that the really ill guy with a CD4 count of 50 gets blown off because he'll probably just die anyway?  i was mad mad.  i wanted an explanation.  i wanted to know why there was no pending plural fluid culture, why they'd discharged him no better than a few days before?  and did i mention that he now can't hear either and has ringing in his ears, i'm assuming he was given gentamycin- lets hope they had a good reason- and not just throwing antibiotics around- remember that first rule of medicine? do no harm.

then i saw the baby with the big head that i'd seen last week.  it was a little bit bigger, she hadn't been to the neuro clinic and said she had transport problems so the dad had taken her to the 'local clinic' where they had not measured her head or examined her, and were told they'd just have to wait and see.

probably the same 'local clinic' that has been "treating" the next lady i saw, with a massive, fungating, vulvar lesion, that was clearly super-infected, most likely malignant and oozing with malodorous pus and blood as she lay sweating and paining on the table.  i asked her how long this had been going on - 5 months- she'd been going there for 5 months, with no referral, no biopsy, but getting 'shots' of some kind or another.  i wanted to cry.  i gave her transport money and wrote another letter to a doctor at mulago - imploring them to see her, examine her, admit her and treat her.

i'm just done with hearing TIA (this is africa).  where are the standards? who is running these clinics that seem to be on every corner?  it reminds me of that line in an adam sandler movie, "we are all stupider now after hearing that speech."  people might actually be worse off having been to a health clinic.

so now i'm ready.  i need to know what is happening at mulago- how they do things.  i'm ready to know if they admitted the lady with the lesion, if she was examined, or sent out with an appointment somewhere, at sometime, at best.  i'm afraid, but ready, to face that guy with the lung infection and go to bat for him, if he's lying in a hallway - getting more antibiotics without any diagnosis or drainage of the pus.

on the way home from clinic i was surprisingly full of hope.  i had that excited feeling like, 'there is so much good to be done'.  there is so much room for change or growth or improvement and it needs to start with me.  me not being overwhelmed or sad to the point of stagnation or avoidance, but me doing the best i can for each person i see.  me caring, following through, not giving up, letting people feel loved, valued, and attended to- and teaching these things, that this is good medicine.


instead of crying about it, or complaining about it, or running from it; i need to be in it, see it, learn about it, work with it. i need to “Be the change that you wish to see in the world.” (Gandhi)
otherwise i should pack my bags and go home. 



“For what it’s worth: it’s never too late or, in my case, too early to be whoever you want to be. There’s no time limit, stop whenever you want. You can change or stay the same, there are no rules to this thing. We can make the best or the worst of it. I hope you make the best of it. And I hope you see things that startle you. I hope you feel things you never felt before. I hope you meet people with a different point of view. I hope you live a life you’re proud of. If you find that you’re not, I hope you have the strength to start all over again.”
― F. Scott Fitzgerald

let your light shine

i don't think you can know rich, until you know poor.
yes, i was at clinic today.
wealth has less to do with bank accounts and more to do with access and options.  i mean access to many things.  today i mean access to health care. 

access- the ability to approach, or enter or make use of.

this gets complicated. 

today i saw a baby. a cute, smiley, 7 week old little girl who i knew in once glance had something 'off'- more in the way a mom would know, than a doctor.  her mom explained that she was there for an HIV test- her first DNA PCR- to see if she'd contracted it from her mom.  but.  then she added - by the way, her head always flops back.  so i peeled away all the blankets- even thought it's so hot here now- and her head just kept on going.  it was too big, too long, measuring to the size of an adult head.  no wonder she couldn't manage it.  but the question becomes 'now what?'

in the US, primary care is a gateway to something.  here it's not.  this can lead to great dissatisfaction with ones job.  i had an easy time with the hypertensive cases, and the those needing antibiotics or not, even with diabetes we have some options, but this child?  i wanted neuro-imaging, a pediatric neurologist, and the availability of a pediatric neurosurgeon, and i wanted it to be affordable.  but she won't have any of these things. 

availability is a very different thing than access.  here we don't always even have availability, but when we do, the people very often don't have access- they can't 'make use of' because of poverty.

what shape does reassurance take in this situation- what shape does hope take?  what is the point of knowing the problem if you can't fix it?  or perhaps worse, if it's fixable, but just not for her. 

i promised myself i wouldn't cry in clinic- i even prayed that i wouldn't.  i didn't ugly cry, but my eyes got pretty wet. this is why i never wanted to do pediatrics- i can't deal with sick kids- it breaks my heart in little pieces.  or is not the age, but the absolute lack of real access?  what good is knowledge if it won't help.

the mom was looking at me- but her head is fine right? she said.
no.  her head isn't fine.  it's too big. 
and i get it, because i've been there. right there. i've been there with my baby. holding my boy with his big head.  but when i asked her what she was most worried about, she said 'money'.  and money was the farthest thing from my mind when i held my baby and his head. and i knew in that second, how truly rich i am and have always been and always will be.  i have options.  i have availability and i have access.  and i have people that would work extra shifts to pay for access if i couldn't. 

poverty steals something from people that i might not have thought about before- it steals the little bits of control that we have over things that we ultimately have no control over. 

that is the difference.  i am rich- we all are. 

today a group of students from the US are coming to our house to talk to us about why we moved our lives to africa - why we took small children and sold things and ended up here.  we'll give them cookies and tea and fresh juice and then we'll sit down and tell them.  a long time ago we fell in love with east africa.  we knew there was a need and we knew we had some tools that might help. because it pulled and pushed and called out.  because life isn't about being comfortable, it isn't even about being happy all the time.  life is about giving of yourself where you can- where you feel you are supposed to be.  because in life, you do the best you can.  you try to break enough so that you care even more, but not so much you fall apart.  you work and you learn where the systems break down and where you can plug the holes.  you pray every morning that you'll be given the wisdom to know when to make it fixable for one- and for which one.  you allow yourself to cry and you can get up and do it again.

and maybe we do it because we are so very rich in so very many ways.  maybe we do it because my baby boy, who i held in my arms as this woman held her child, just ran across the yard; my healthy, happy, smart almost 7 year old with his no longer big head.  maybe we do it because of a small church in mbale who prayed for that boy- because that is what they could do. maybe because we serve a great big God who answered those prayers and who loves us so dearly and asks us to be lights in this world.  because sometimes being lights takes the form of trying and working in a broken system.  sometimes being lights takes the form of telling that woman my story- to give her hope- in a God who is bigger than the broken system- bigger than her poverty.  sometimes being a light is just being with someone who is standing in darkness.

for elizabeth who i get..

the last day of the year. i'm outside enjoying this early morning light and near quiet and time to think over this year, to think about being here- really being here-and what that means.  the other day i saw a picture of my nephews on facebook. they were at the airport going from their grandmas house back home to chicago.  i couldn't see their faces but just the tops of their heads was enough, for me to feel very far away.  i had a pang of homesick.  i had that longing for family.  i had that sadness that is part of my reality- we live deep in the heart of africa- my kids will not grow up with their cousins- they are a minority- a few blonde tops in the middle of black and brown- it's not a quick flight anywhere.

i have a modern world friend, a woman i've connected with online through mutual friends, who is living a parallel life in malawi.  she's a doctor and a mama and a writer and moved to africa about the same time as i did. http://voyagetoafrica.blogspot.com/2011/12/bearing-witness.html?spref=fb  today she'd written some stories that needed to come out- that needed to be shared- that needed to be told- because what else do you do with them?  what else do you do when you can't fix it?  sometimes all you can do is tell the story, raise awareness of the disparity, the poverty, the injustice that is life here.  but sitting in it, choosing to be here, to work here, to serve here- brings up for me the ideas of sustainability and capacity and consumption.  what is our capacity?  how do we avoid being consumed?  how do we maintain sustainability?

for me, i sit under the wing of God.  i lean on this.  this promise. this old hymn by annie flint-

He giveth more grace as our burdens grow greater,
He sendeth more strength as our labors increase;
To added afflictions He addeth His mercy,
To multiplied trials He multiplies peace.

this song we used to sing in church and i would cry as i sang because my life at home, in atlanta, where people were healthy and injustice is more hidden, even there my stores were empty as i struggled with zoe, even there i felt the weight of my burden.  and i would cry and beg, beg for some more strength and some peace. so this i hold on to here too.

and i think of writers who remind me of a God who is present in suffering.  buechner (alphabet of grace), annie dillard (holy the firm) anne lamott (traveling mercies)- writers who aren't afraid of reminding God of the ugly in the world and not afraid to ask why.  because there is a lot of ugly.  there is a lot of unfair and uneven and not right and never going to be right.


the promise is not to be consumed.  the promise is a God who gets it, who provides the grace.  and, even, the joy.  a God whose heart breaks with you elizabeth as you watch the dying child, whose heart breaks even more with the mom who watches her child die, and who opens his arms to embrace all three of you.


it's hard.  really very hard when you chose to sit in the yuck of life.  when you go to the ends of the earth where you don't have to be; to be and to try.

so we will try.  stay.  choose. lean. pray. rest.
don't forget to rest.  allow the sabbath in your life.
rest so you can be the hands of God here- in the corners where not everyone will go or even ever see.

“I am a frayed and nibbled survivor in a fallen world, and I am getting along. I am aging and eaten and have done my share of eating too. I am not washed and beautiful, in control of a shining world in which everything fits, but instead am wondering awed about on a splintered wreck I've come to care for, whose gnawed trees breathe a delicate air, whose bloodied and scarred creatures are my dearest companions, and whose beauty bats and shines not in its imperfections but overwhelmingly in spite of them...”
― Annie Dillard

the camel and the night sky

the moon held on today, still bright in the morning sky, not ready to leave the night behind.
i was glad. 
last night the sky was so beautiful. so stable. so consistent.  a reminder that your day can be hard or bad, but it's just a day.  that wide open night sky makes me feel small in a good way, it expands my perspective.  there was one star last night that was so bright and so big and high up- it called me back to bethlehem.  it reminded me of Christmas. 

right now i'm sick of sick.  everyone at clinic is sick, my family is sick, my friends and neighbors are sick and even i'm a little sick. today was full of sad stories and lots of remembering to compartmentalize.  to do the best i could for each person i saw. 

the 15 year old girl with AIDS, on second line therapy with a CD4 count of 37, missing an eye and a cheek from cancer.
"when did that happen?"
"the year my parents died, when i was five."
"did you know you had HIV then?"
"yes"
 imagine loosing your parents, your sight, your hope; and gaining a deformity and a place in your aunts house as the only one with HIV, when you're only five.
it's not right is it?  it's not fair.

the 30 year old man with AIDS, fever, cough and shortness of breath, on exam and chest x-ray a lung full of fluid or pus, lying on a mat, shallow rapid breaths and heart rate, refusing a ride to the hospital saying he'd wait until tomorrow when his brother would take him.  me wondering if he'll even go tomorrow and wondering what good it will do anyway.  will they read the referral? will they tap his lung and culture the fluid and make a diagnosis? or will they just slap some antibiotics on him and hope for the best.  me wondering if 'doing the best i could do for him' included driving him to the hospital emergency room, waiting with him, talking to the doctor on his behalf, making sure they did what needed to be done.  but fearing that i'd be so mad or so sad that it might do more harm than good.  me wondering where the boundaries are and where the line is between making a difference and achieving sustainability. because i don't want to burn out.  i don't want to become bitter or hopeless.  today i just wasn't ready to see mulago (the big city hospital).

on the way, i was given another reminder of that starry night in bethlehem.  drawing me back to Christmas time. 

a camel walking down the side of the road. and i stopped in the middle of traffic and took this picture.  if i hadn't given a friend a ride i wouldn't have seen it. subtle orchestration not an accident.  it was saying: don't forget. drawing me back to this season of hope.  reminding me of redemption.  telling me to hold on.  to be patient. to be gentle in my thoughts and my fears and with my expectations.  to choose to be joyful.

so i'm remembering the joy and the peace,  the hope and the redemption, the love and the gentleness.

omusujja

one of the hardest things about being a doctor is having to say to your kids "mommy has to go to work now to take care of sick people."  and have them look confused and say,  "but I'M sick today!"
yes, that was today.  i had to leave two boys with bad coughs and fevers and go see many more patients with bad coughs and fevers who also had HIV and poverty to deal with.

it's also hard to be a doctor and have sick kids because i just can't think logically about my own children. i tend to under do it or over do it.  today before i left i examined them, gave them some symptom medications and told them to drink fluid and try to sleep. then i came home to find jude moaning on the couch with 103 degrees of fever, 30 minutes after taking ibuprofen.  and i started convincing myself he had malaria (ps he's on malaria prophylaxis, has no mosquito bites, sleeps under a net, and has a horrible cough and mild tachypnea- if it looks like a horse, acts like a horse, it's probably a horse, not a zebra)  and i love his super mature, 6 year old going on 25 year old med student, response, "mom! i don't have malaria! this doesn't feel any like malaria would!" (as if he's ever had it- but his gut reaction was correct- it's highly unlikely to be malaria).  apparently i've been in uganda too long. 

being a doctor here is different.  there are so few tests, and if they are available, no one can pay for them.  if they do have the medicine no one can pay for it.  and everyone thinks they need medicine for everything, preferably in the form of antibiotics.  it's not there fault this is what doctors give them.

i saw a man last week with the symptoms of a stroke who treated  antibiotics at the local clinic.
every 3 day history of cough is treated with antibiotics, as is every patient with epigastric pain. 
because of language and culture, it's hard to explain that they don't need antibiotics for their one day of symptoms.  part of the problem is the language issue.  the word omusujja means fever.  it also means malaria, they are interchangeable.  this is a problem.

i'm remembering how much of doctoring is about relationship and communication and how hard it is to connect with people when english is their second or third language and their beliefs are so different.  someone told me today that she'd was sure she was sick because in the village last week her brother was murdered outside the hut in a dispute,  either that or she 'd been poisoned by her husbands second wife in the village which resulted in her oral ulcers, but either way, could i please give her some flagyl.  i so badly want to communicate better, to understand and speak the language, to know the background on the beliefs. 

a lot of times it can feel like a drop in the bucket.  i'm left wondering why i'm leaving my sick kids at home, to volunteer in a medical clinic/culture where many people are mistreated because of bad practice or limited resources. but i have to go back to the individual.  did i do the right thing today for the people that i saw? if yes, than i've made a difference, small, but still a difference.  maybe mpola mpola, slowly by slowly,  those drops will collect into a cup of water, a cup of clean drinking water.  and hopefully in the meantime my children will rid themselves of their omusujja :)

is it possible

this was the billboard i passed on the way to town today.

i'm not sure. 


today i got mad at the many things that are broken around here and the lack of fixing. i was driving home from clinic, on some back, barely paved road with a slow*** tanker truck in front of me.  it was spewing black diesel smoke from one side and pouring what i hope was water, from it's tank which had stenciled in small letters H2O.  it was like the little engine that couldn't.  the thing could barely get up the small hills.  i really wanted to get away from it- for all the obvious reasons especially that who knows what was really in that tank.  the thing wouldn't let me pass- every time i tried he moved over into the middle of the road.  now i usually have road zen here- it's not worth getting mad- but today i was mad.  swearing out loud mad.  thankfully i was driving alone. 


then i came to a place where i knew they were doing some road work but it was in a dead stand still. like, put your car in park, stand still.  in typical fashion all the cars behind me began pouring onto the other side of the road and forming another lane going in the same direction.  this infuriates me, because of course it creates a bottle neck and we're stuck longer.  when we finally move a little i see that they'd begun to do more road work and had some how created a  lot of mud and the road was now two levels that an ordinary car couldn't go between, but several had tried and were stuck laterally - as in across both lanes stuck.  as had a matatu and that stinking H2O truck.  of course there is no signage and no police helping to direct traffic.  instead there are several road workers in hard hats pointing and commenting to each other about which car would make it out of the mud first. 

i began to reflect on why i was so annoyed and i realized it was about much more than the leaking, broken down old truck and the bad road work.  it's being constantly faced with the broken systems all around me.

today at clinic i saw a woman for the second time.  the first time is saw her she came in for her regular visit and thought she had malaria which i tested her for but she didn't have.  i happened to also take the time to look through her chart and saw that she'd been sent for a work up over the summer for dysfunctional uterine bleeding, lots of it, enough so that her hemoglobin was 4 (less than half normal).  when i asked about what had happened, in typical fashion, she wasn't sure- she may have had surgery, she did have some lab tests done, and maybe a biopsy.  no follow up had happened.  i rechecked her blood, put her on iron supplements and told her to go get her records, her results, all of it from the hospital.  i gave her my phone number and wrote a note to the doctor who was 'treating' her with the questions we needed answered. 


today she showed up looking pale again, and with her results.  a cervical biopsy had been taken, it showed severe dysplasia- it was from 4 months ago.  no one had followed up- not the person who had ordered it- nor the pathologist reading it.  i know this situation can and does happen in the states- but somehow it seems almost the norm here.  as i'm discussing with her the need for treatment and that likely it will be more aggressive given her HIV status, i realize that i can't fall back on the promises i'm used to giving.  i can't promise that she will have very little post operative pain- i can't promise that this is a routine surgery that will go perfectly smoothly with very little chance of a bad outcome.  i don't think either are true! this is a country where women die in childbirth while in a hospital from lack of blood or sutures!  a place where you pay first and if you don't have money you lose.  a place where the drug you need may not be available- or where there might not be enough nurses to get your pain medicine.  i sat there trying to explain why it was so necessary for her to go back to the gynecologist and get treatment but i just kept thinking about trust.  how can she trust this system to not fail her?  how can she trust a doctor to cut her belly open if the same doctor didn't even follow up on the tests ordered in the summer?  how can she be sure she'll not have intense pain, or that she'll even survive the surgery?  it made me sad and mad and feel quiet helpless.

after that i saw a man about 60 years old who had been on ARVs for over 2 years.  i looked as his CD4 count it was 30.  we put people on ARV's when there count drops below 350, he'd been put on ARVs when his was 25, but over two years ago.  it was now only 30.  i couldn't find any work up about why this was and what we were going to do about it.

while i was talking to him about adherence, the woman who had the baby with the seizures stopped over to give me an update.  i'd given her money last week and she'd taken him to get a work up with a CT scan of his head and an EEG, but was told she was supposed have come on a monday not a thursday and sent away.  he'd had another seizure that night (although not sick) and she'd had to bring him to a small local hospital where they treated him for guess what..... malaria as usual- and then IV antibiotics because they needed to 'treat his infection' (although they couldn't tell what or why or even if he was infected) before any scans or further work up could be done.  so all the money for the work up was now spent on probably a lot of unnecessary medical 'care'.

so driving home i passed the sign again. "is it possible?"  it stood there looming over me- asking an ambiguous but hard question.  and after my day, i wrestled with my answer.   is it possible?  i don't know, but i have to believe yes.  something is possible on some level.  some things must be possible- over time things are possible.  and then a matatu sped by and i remembered all the wise old sayings that i pass numerous times each day written on their rear windows.  they are expressions of hope- reminders of our place in the universe, phrases of encouragement and i'm beginning to see why they are so prevalent.  i'm not the only one in the country wondering 'is it possible?'  so it's good to read - 'God is able', and maybe tomorrow i'll see my new favorite, 'with God, it's possible'.

the long ride home

i love coming home to this.  this face.  the humor of a 4 years old.  it makes me laugh even after 10 hours of driving, and patients, and poverty, and awareness of my wealth, and injustice, and even more driving.   

today was good- but i think i need to sit with it.  tomorrow i'll be back to see more and hear more.  i will continue to pause and reflect.  right now i'm just tired and trying to process the differences.  i'm amazed that people whose newborn babies are having seizures, are unable to have them worked up because of a lack of money.  people who have unexplained weight lost of 15# in 2 months, people who's upper arm diameter can fit in the circle between my thumb and first finger, people who are unable to get up and would be admitted in a heartbeat in the US, go home with a proton pump inhibitor.  

i'm trying to wrap my heart around where i end and begin in all of it.  i can do somethings- i can give to some- but i can't do it all.  how do i make these choices? 

i remember during my residency training in san francisco i was taking care of a homeless man with HIV and some bad infection requiring IV antibiotics.  he had no home, no job, no family, and no insurance, but being in the US, in a public hospital he would be treated fully, and it would be free.  he would be fed, medicined, given a bed and generally provided for. but.  the TV didn't work in his room.  i was paged multiple times in the middle of the night by the nurses saying that he was threatening to leave AMA (against medical advice) unless he was switched to another room or his TV was fixed.  i went the speak with him, try to reason with him- but i was pretty mad.  i had other sick people i needed to see, other patients that needed to get admitted, and those who were not stable, and i was hoping to get a few minutes of sleep.  instead i was running back and forth to 5C to deal with some spoiled man who was trying to 'punish me' by not staying in the hospital to get better because of a television when normally he doesn't even have a bed?? what??  the hospital was full- there were no spare rooms- i think i managed to get him to stay the night and sleep with the hope that in the morning i could find a portable TV and wheel it in to him.  i remember thinking to myself that i needed to let it go- that i'd done my best but if he'd left it was his choice.  i thought about intense parenting and boundary setting with my child- but that at 40 something in the middle of the night when i was exhausted- teaching him better boundaries wasn't worth it.  

but really...

what is wrong with this world?  people dying because they don't have access and people walking away from good access because of inconvenience?  i know that it's complicated- i do.  i know that we are all complicated and choice itself is complex, as is illness.  

but these are the things i think about.

before i moved i was lucky enough to be a part of an amazing group of women who love to do what they can to make the world better.  we got together once a month for a 'giving circle'.  someone hosted, people brought food, and someone presented an organization or a non-profit that is working to make the world more fair, to right the wrong, to bring justice and peace in places where it's not- and we all gave some money to the cause.  it was a time of fun and good food and community and priority alignment.  a few months before i left i was able to set up a fund for people in uganda who have medical need and can't afford treatment.  these friends, these women have given to this fund and these women will continue to make a difference in the lives of many. 

so on the way home from work today i stopped at the bank to take out money, so that it can begin.  tomorrow i will be able to send that baby to get his seizures worked up and treated.  tomorrow we'll be able to give that mother peace of mind- because at last she'll know what's wrong- and that she's done all she can for him.   

tomorrow there will another person with another need.  there will be several.  and i will do the best i can for them, and i will pray for wisdom. and i will be so thankful for the generosity of others who have sacrificed for me to be here, and to provide care for people across the world that they have never met, but with whom they share the moon.  

and the world spins madly on.

clinic notes

this was my second week of clinic at Reach Out.  i love it. it's hard to explain, but this is why i became a doctor.  this is why i spent all those hours in labs and libraries and lecture halls.  it's why i stayed up night after night on call, drinking old coffee and eating vending machine snacks in florescent lit rooms, trying my best to put people back together again and not unravel myself, while my little blond zoe slept at home with her dad. not for the title.  not for the white coat. for the opportunity to take it and bring it here.

and here i begin again.  to re-think how to diagnose and manage illness with severely limited individual and system resources.  here i begin to trust myself again.  i need to rely on my hands and my eyes and my brain more than ever, because there isn't always a test to do, or a scan to fall back on.  here i begin to know a new community of people- people who are poor poor.  people who i always felt i was meant to serve.

this week i was asked to be the doctor at another site about 5 minutes from the main Reach Out campus. the neighborhood is kinawataka. there are more patients, they are poorer and speak less english.  some of the doctors are away on leave, this was a need that i could meet.

my luganda is not very good even though my class is finished.  i can say greetings and count and know some verbs and nouns- mostly vegetables, or educational  or religious words- like chalk and cross- not too handy in clinic.  so at this point i need either a translator or english speakers.  on monday i was given the chart of a lady who i supposedly could communicate with.  after introducing myself i asked if she spoke english to confirm.
"yes i speak english, but not muzungu."  great.

this sort of thing happened a few times.  i could over hear the triage person speaking rapidly in luganda to the waiting patient.  "blah blah blah blah muzungu blah blah blah" was all i understood,  followed by a glance in my direction, and a long size up  from the patient.  most of the time they agreed to be seen by the white lady.

today i saw a woman who was enrolled in the program in 2003- one of the first 25 patients.  i looked through her chart like a history lesson, archeology.   past the recent occasional computer note that might be entered and printed if the power is on, past the different evolution of forms recording her ARV (anti-retroviral) dose and history, her CD4 counts, her weights, and into the old pages of plain white paper SOAP notes.  pages before there were ARVs available. and there, buried in the inch of her chart was a note from me in 2004.  i went to 'pick' her from the line of waiting clients.  i was so excited.  i told her- i met you seven years ago- i saw you before you began your medicines- and here you are- you are working- you lost your husband- but you have 5 children who are HIV negative.  you are living- you are well.  it works! Katonda bulungi! God is good!

then i 'picked' a boy who spoke english.  his name was pius.  he had come early- his appointment wasn't until next week.  i asked him if he was sick (he looked sick- but chronically).  no, he has exams next week.  he is in vocational school. he's studying to be an electrician.  i began to go through my interview- the review of systems.  + cough for more than 3 weeks, non productive, no night sweats, but TB is so prevalent here that we check for it in any HIV+ person who has been coughing for more than 2 weeks.  skin rash for a year- not itchy, not painful, doesn't go away.  i look through his chart for his CD4 count- it's 19.  he is 17 years old.  he's been on ARVs for 2 years.  something is broken.  very broken.

his mother died of AIDS, his father died of AIDS.  his grandparents are dead.  he has not aunties, no uncles.  he is an AIDS orphan.  the clinic pays his school fees. he lives at school- he gets two meals a day.  no one has his back.  no one checks if he's taken his meds.  no one cares if he's been coughing for three weeks.  i asked him who at school knows he has HIV.  nobody.  nobody?  nobody.

you have no one to talk to about your life? about your dead parents? about your living with life threatening illness?  about the stigma of the disease you were born with- the disease gifted to you by parents who didn't even know they were sick? about the fact that you don't know what healthy feels like?  that you've had more loss than most people i know?  that you are terrified?  that you have no hope because you've only know this disease to steal from you- stole your mother, father, and is slowly stealing your life?

it broke my heart. 

'yet this i call to mind and therefore i have hope- because of the Lord's unfailing love we are not consumed'

i spent an hour with him.  my hand held his while we talked like i would my child, tears rolled down his rashed face.  i acknowledged his suffering.  i spoke of hope. i told him of my patient who i met 7 years ago- with a CD4 count so low then-  is alive and healthy.  i told him he was loved by God and his life was valuable.  then we spoke of  partnership and honesty and the desperate importance of taking his medicines and how in his school day he could find alone time to take them with out feeling the eyes of his classmates.  he went to the lab, i promised him a 'days of the week pillbox' to try to help with adherence, and we agreed he'd return in one month.  i have his cell number.  i told him i'd be praying for him. 

this is what speaks to me.  this is what even now, gets me out of bed at 5:40 in the morning.  to go to this church building turned clinic and find both the stories of redemption and healing and those in such need of restoration, those whose broken is badly broken. 

this week i didn't cry and hide behind my hair.  this week i began to own my ability to do something about it.  this week i feel a deep thanks for being able to give and to help.  this week i feel such gratitude for my own healing, for the ongoing mending of my brokenness. out of this comes the hope that is contagious.

tonight i tucked my three children in their beds. thankful.  tonight we prayed for pius, and we prayed for our friends who are sick, and we prayed that we'd be mindful of the needs of others.

may we always be mindful, and hopeful.  may we live into what we can do for each other today, or tomorrow.  good night.

silenced by it

silenced by it.

i was very conscious about my decision to not do pediatrics.  sick children break me.  but at Reach Out clinic, we see kids sometimes.  today i saw a boy who is 12 with AIDS and TB, coming for fever, cough, diarrhea, and vomiting.  he was diagnosed last year with HIV, his cd4 count was 11.  he's now on ARV (anti-retroviral meds), he's on TB treatment, but he has difficulty with adherence.  he is neglected at home.  his mother is also sick, and they are poor.  he walked 3km to clinic alone. sick and alone. 

as i talked with him i kept my hand on his back- his thin and wraspy back that rattled when he breathed or spoke.  i lifted his shirt to listen to his chest.  he was covered in the same rash that covered his face.  he also had shingles lesions crusted over all along the lower right side of his back, his body was old- old and sick. i moved the stethascope around to all the regions of his lungs, and his heart, my hair was loose and hung long over my face- thankfully- because i cried.  i stayed there hidden in my hair listening to his distended abdomen, holding his clubbed fingers.  somehow he symbolized everything that is wrong with the world- everything broken- a sick child born sick.  a sick child with a sick mother, a father who'd abandoned them, two dead grandmothers, two dead uncles and no one to just pick him up and hold him.

i so wanted to.  i wanted to take him on my lap and tell him he is loved.  that he is valuable.  i wanted to feed him a big meal and put his many pills in a neat pill box and make sure he took them.  i wanted to give him hot chocolate and tuck him in a bed at night under a mosquito net and help him to feel safe- to have hope- to see a future other than what he lives.


was that all i cried about under that shield of my hair? or was it for the woman who lives at someones house and does work for them so they will pay her sons school fee's- who has no income for herself- except the beans she is fed twice a day.  she hates beans- but is thankful that her son is learning- thankful that she is still here and able to work after 8 years on ARVs- after coming back from nearly dead.


or was it the woman with high-grade cervical dysplasia who didn't have enough money to get to the hospital for further evaluation and treatment.  i explained the importance, the necessity of going and she understood- but it would cost about a day's wage and she doesn't work.  i have a car, i drive by her neighborhood three times a week going into town- she has a need- she needs a ride.  we tried to figure out a time, a place, a way for me to pick her up and take her- but her english wasn't good and my luganda even worse.  she had a need, she didn't ask, but i could give her bus money, which i did- the price of a latte.
'thank you', she kept saying, 'thank you for helping me to live.'


or was it the skin and bones baby who tried to smile in the arms of his weeping mother.   the 4 months old boy- who is starving before her eyes- who eats and eats but is unable to gain weight.  this child who has been to two 'health centers' and turned away with out a diagnosis or treatment.  this broken child brought in by his broken mother- begging for an HIV test- because why else would her baby be dying?


i didn't mean to cry.  i didn't want to, i really didn't want anyone to know that under my curtain of hair- i broke.  but i did. 


i'm the only muzungu at Reach Out- well except for a kid from germany who volunteers in the lab. no one understands what i'm doing here.  they keep asking why we left the USA- why we moved to uganda.  they ask with concern about our children- are they in a good school?
i explain yes- they are. i explain that we came because we feel we are supposed to be here- because there is a need and we happen to have a desire and the ability to help meet the need- like a puzzle piece.  it's not a huge sacrifice because we fit- because this is where we want to be.  our great gladness, the worlds great need- they meet- for us, they meet here.


it's not that i think i can fix any of it really.  and it's not so much that i will run away.  but the need can scream so loud sometimes that it hurts.  the disparity, the discrepancy, the random injustice of who is born where.  someone born with a silver spoon, someone born with a sexually transmitted disease. someone working all day for food and her sons school fees, someone else able to send her kids to private international school and never have to eat beans because she doesn't like them either.  someone with an infant unable to thrive and no good access to care, someone else able to fly back to the US if we were sick in an instant.  someone unable to pay the bus fare to get treated for her possible cancer, someone else with 4 wheel drive complaining about an outdated tape deck.   i see my excess everywhere.  but i will try, and i will give, and i will remember, and i will impress upon my children as best i can- how fortunate we are- and to whom much is given, much is required. 

i drove quietly to the boys school biting my lip- so i wouldn't cry again.  it was pretty and each parent around me inquired genuinely about their little persons day.  such focus on each detail of the story, a kiss for each little bump, an ooh and ahhh over each letter formed or picture drawn.  i didn't just hug the boys when i got them- i clung to them. 



and i was silenced by it. 

skin deep

we celebrated expat halloween today. 

pirate, skeleton, power-ranger and two of three powerpuff girls- zoe as blossom and i'm buttercup.

we celebrated today because we can- and actual halloween, tomorrow,  is on a school night and following a school day.  today i was reminded that i also like m&m's and plain old hersey's bars, as well as the reeces and snickers. today i was reminded of how quick and fun the prep-time is and how long and slow is the clean up.  face paint. easy on, painful and slow to come off.

we also decided to have a first annual halloween party after the trick or treating.  it was our first time hosting a party here and it was good except for running out of drinking water and making the guests drink sprite despite being high on sugar from all the candy. 

the decor

so this morning, we needed to go into kampala to get the last items for the costumes, the food, and the party. our adopted weekend son cyrus, showed up early and ready to join us and we headed into town.  we got some gas, refilled the tires with air and were back on the road.  after about 30 minutes mike noticed the car was driving strangely.  everything was shakier than normal, noiser and we felt wobbly- especially on my side.  i rolled down the window and looked out at the tires- they looked fine but i agreed something wasn't right.

can you see the lopsided tire? it was like a tire aneurysm. the wall of that part of the tire had thinned out and enlarged- the next step would have been a blow out.  i was so thankful that we'd felt it, and that mike was driving, and is good at changing tires and knowing what to do.  seriously, another example of provision.  i pray every day as i head out on that road- for safety and protection- it was given again today.

i couldn't help but imagine what if this had happened on the way to school with the boys tomorrow in the early morning.  would i have pulled over?  what if the tire had blown?  what if we'd wrecked? do i remember how to change a tire? would i have known i needed too? damsel in distress. 

so much of life is like this- unknown.  so much of the time we are unprepared- or think we are.

about a month ago, i saw my first patient since arriving in africa.  it was one of those non-formal patients- the son of someone who works here.  someone called and asked if this guy could stop by with his son, if i would look at a rash.  a pediatric rash.  a pediatric rash with a fever.  now.  i'm not a dermatologist, and i'm not a pediatrician- so i felt a bit out of my league.  but i am a doctor and there are expectations and i think generally, i ought to know what to do.  but i was, nervous.  it felt like a test.  it felt like my first opportunity to show people that i knew something- that i could do something- that i had a contribution. but it could be my first opportunity to show them the true idiot i am, that i actually know very little and can't do much of anything for anyone.  so i wanted to get it right.  but why couldn't it have been an adult with chest pain?  or a bad cough, or diabetes or pain management?  really God?  my first patient, a pediatric rash?  thanks.

he showed up with his dad, his mom, his little sister and his twin brother.  it was late afternoon and the power was out so i had to meet with them on the front porch where the light was best for looking at rashes.  it was a nasty rash , in many places on his body, and the little guy looked sick- he was warm and scared.  i went through my questions- those ingrained questions that have walked me through years of medical investigation and always lead you through the process of ruling things out, and ruling other things in.  the medical history, the history of present illness, chronic medications, new medications, new foods, onset of rash, associated symptoms, sick contacts, treatments so far, efficacy, etc.

and while i'm listening to the mom answer these questions, i'm thinking that there must be 10 infectious diseases that this could be, that i don't know, that i should know since i now live in africa.  and i'm thinking of how sick they all could make him, and i'm thinking this isn't just some random kid i don't know, but this is the son of someone i see all the time, and i'm thinking about how different things can look on dark skin compared with pale white skin and i'm trying to remember what medicine i brought and if any of it will work and what i should do??  and as the time wore on- i felt indecisive and pressured and that hot under the collar feeling.  finally, i pulled it together.  i reminded myself that i probably did know what this was- that i needed to think clearly about what i thought, what was most likely, and to trust myself, even with a pediatric patient, even with darker skin, even in africa. 
i put my dollar down on impetigo- honey crusted lesions, infected, and i rambled through my luggage and dug out the antibiotics i'd brought for bryn (figuring the dose would be closest) and knowing it should cover staph and strep.  i handed them the medicine, wrote out how to take it, and the name of some topical medicines they could buy at the pharmacy, and my phone number and told them to call me the next day so i could follow up.  then i said a prayer that went something like this-
'please God, heal this little guy, and let me have done no harm."

the next day he was better- and it continued.

it's amazing how much a new situation can still throw me, almost 10 years out of medical school. it always takes getting used to.  it takes remembering that most of the time, we know it- it takes trusting yourself- trusting your knowledge, and experience and your ability to think.  but it also takes caring and follow up.

tomorrow i begin to be a doctor again formally.  tomorrow i start at Reach Out clinic.  tomorrow i'll be reminded of it all over again. why we came, why we are here, what we're doing, and probably that feeling of how little i think i know.  the 'transition' will be officially over.  this life here, will be more here than perhaps it has been.  

i have no idea what tomorrow will hold.  what crazy thing will walk through that door, or curtain, and how it will stretch me to learn more, to try harder, to understand in a new way.  but i'm ready- to jump in- to expand my days. and i'm thankful for the opportunity,  and for a replaced tire, and that the face paint is mostly off. thankful for a new day tomorrow and a goodnight of sleep right now.