Post-script: Wendy

It is a little sureal to be sitting here now blogging a full year after leaving San Lucas. Time and again since I returned to the States, I have thought about writing a new post. In some ways, it seems my reflections following my return have been more profound - or at least equally so - as my reflections when I was there. But, it seemed to me a little presumptuous to continue the blog, as if people really would want to hear my continued musings after I had resumed my prior life.

But there are some themes that have remained constants this year, one of which really has continued to teach me valuable lessons - or at least made me want to document so that maybe a lesson would appear to me and others over time. And that is my continued relationship with Wendy and her mother, Ismelda. You will recall that Wendy is the little girl, then 5, with polyarticular juvenile rheumatoid arthritis. I met her just a few months before leaving San Lucas and started her on methotrexate just a month before leaving after performing many studies - all under the guidance of a pediatric rheumatologist friend of mine here, Jenny F.

Well, since leaving, I have tried my best to support Ismelda in continuing Wendy's care (and support Rafael in doing the same). It's the saga of this attempt that I wish I had documented week by week (mostly because I think it would reveal the challenges even a dedicated mother faces in advocating for her child when she is poor, disenfranchised, and poorly educated). I typically talk to Ismelda twice per month and just got off the phone with her. In short, if there is such a way to summarize Wendy and Ismelda's year, Wendy came for her weekly MTX shots for about 6 weeks after I left. We reviewed her other meds weekly over the phone. She wasn't improving. She was anorectic, often couldn't walk, cried a lot. Mom missed a few appointments at the clinic for various reasons (I think, mainly, because she didn't believe in the therapy) and felt the disdain of the nurses there. She looked into all sorts of alternative therapies. She tried prayer groups and "witch doctors". One of whom sucked metal right out of Wendy's neck while mom was praying. Wendy improved briefly in response to each of these measures. She also tried several other doctors. She was given lots of vitamins and herbals. Some even declined to treat Wendy, saying she really needed a specialist (I really respected these doctors). Mom kept asking me to please just tell Rafael to admit her to the hospital for fluids. She felt that would help. I tried to connect Wendy to a gringo visiting Rheumatologist who gave her a steroid shot but didn't speak to mom. It didn't help and mom felt bad about the visit because no one spoke to her. I also tried to connect her to a long-term gringo volunteer there whose wife was a PT. Ismelda liked the PT for a while but then said the wife stopped visiting for the PT. And the gringo left. I asked Xom to visit Ismelda when he was in town and he said much of the meds weren't being taken.

Every conversation I had with Ismelda broke my heart. I didn't know the right role to play. How should I respond when she told me about the success of the alternative therapies that I just couldn't believe in and were draining her money? I didn't want to manipulate her. I wanted her to know I would support her no matter what. But I also knew Wendy was going to die without treatment. It was so hard for me to call her. I'd dread the conversation all day. Then I'd feel awful afterward. And Ismelda was very depressed. She told me about being suicidal, about chronic headaches, and sleeplessness, and lack of appetite. Her husband in the States would rarely call and was often drunk. Her teen sons wouldn't work to support the family. Her in-laws didn't treat her well. She was struggling to pay the loan on her land.

Finally, around May or so she agreed to return to Rafael for a referral to a rheumatologist in the City. I had come to feel that was her only hope (a Guatemalan, rather than a gringo; someone who would always be there - albeit 3-4 hrs away by chicken bus). She went to the clinic and the administrator gave her a number for a rheumatologist. I sent her money for the trip (the first time I've sent any money - about $150), including transportation, consulta fee, medication fee, food money, and transport for her sister (Ismelda doesn't read and couldn't have gone safely on her own). They went to the public hospital, Roosevelt, on the day of the appointment only to find out that they were in the wrong place. The clinic had referred her to a PRIVATE rheumatologist. (This makes me so ANGRY - this is like sending someone here with no insurance -and no income- to a private doctor; it shows the clinic just didn't care whether she actually got care or didn't think she'd even get as far as an appointment to find out what they'd done). (Oh, and I forgot to mention, on an earlier visit to Rafael, the administrator told Ismelda that she shouldn't seek any more medical care and should just leave the fate of Wendy in God's Hands - I'm not sure where he got the nerve to tell mom to stop seeking care). After a good 8 hrs or so of travel for the appointment - between the chicken bus and three cabs -, she made it to the office just before close. The doctor saw her and gave her steroids, MTX, and folate. I was so thrilled to hear that he actually let her in the door. He did explain that there was no way she would be able to afford his fees and meds. He asked how it was she even got there. She told him about the gringo doctor who was trying to help. He waived the consultation fee and just charged her for meds. Wow.

Wendy improved all month. Ismelda said she's now walking, she gained 2 pounds, the swellings at her elbows and wrists are down; knees, too. She plays. She even went to a child's parade 2 weeks ago. Last week she had another appointment. I called her tonight to see how it went. The doctor hugged Wendy and his wife said next time they'll have a present for her. He gave her a flu shot. I suppose he gave her more of the other meds but I didn't run through those with her tonight (she has to get one of her older kids to read the med names for me letter-by-letter). He gave her a card and asked her to have me call him. She lost the card.

I was telling her how thrilled I was that she found a big-hearted doctor and that Wendy was getting better, finally. She then told me about the mean things the doctor has been saying to her. She describes his language as "muy pesado", meaning "heavy". He told her in front of Wendy that Wendy was clearly smarter than Ismelda and that Ismelda was a "tonta". There were other things. She said it has really hurt her even though she imagines he was joking. And she is willing to take it for Wendy. WHY does it have to be this way? WHY would any otherwise seemingly generous, kind doctor have to add such mean-ness to his goodness? I told her how sorry I was that he was treating her this way.

I told her we'd talk in 2 weeks when the doctor is supposed to call her about possible donated medications from the States (he said she will likely need a medication that costs about $25K per dose - I'm not surprised; I sure that's one of the newer generation rheum meds we use here like etanercept). If she needs that, I realize we will have hit a road-block.

Then Ismelda told me she may call me later this week. She started crying. She told me she just needed a friend. She is so lonely and so sad. And wanted to be sure it was ok if she called just so we could talk. It's very hard for me to play this role because her life truly is devastating and I have nothing to say. But then I remind myself that it isn't what I say but that I'm willing to listen. And I have to add - lest anyone think Ismelda has a financial motive behind our continued communications - that only ONE time in this whole year has she ever asked me for money. It was when she was given an appointment with a doctor in Panajachel and she wondered if the doctor would ask for lab tests that she clearly couldn't afford. I told her I wouldn't be able to help her with money because I really couldn't know that the tests were necessary. And that was it. Never before or since then has she ever asked me for help - except to call the clinic to talk to a doctor or an adminstrator. It amazes me that she doesn't ask for money.

I really don't know what is the right or wrong way for me to approach Wendy's situation. I wrestle with it a great deal. I just feel that it would be wrong for me to disappear and walk away, it would be wrong for me to force Ismelda to seek care she doesn't believe in. And it's right for me to listen to Ismelda and treat her as I would treat a friend.

Saying Goodbye

This week - and last - was filled with goodbyes. It was sad to have everyday filled with "last this" and "last that" and with the recognition that it will definitely be a while before I can make it back to SLT. Maybe a few years. But it was also a wonderful way to wrap up a challenging year with a review of the most important moments: the accomplishments, the laughable times, the friendships I'd developed, the patients I'd bonded with, the family that treated me like one of their own, the projects, the developments, and the good times. First, it was goodbye to Shom and Elena. Shom had become known as Xom and the pair had become known as "Elena" for some unclear reason (we are assuming it's just because Elena's so lovable...but, then, so is Xom). That was a tearful goodbye, hosted by Dominga and her husband. Dominga and Vicente gave us each a present of printed pictures from the year and their sentimental words. It was the best present they could have gotten us. The lunchtime goodbye ended with a million pictures with each of Dominga's nine children in all sorts of combinations, really just a formality I'm thinking since the main objective was clear: the teenage girls wanted solo shots with Xom. Actually, Shom and Elena and I did have our own goodbye and, in acknowledged gringo fashion, we wrote our sentiments rather than said them (or a little of both). They gave me a beautiful pen and ink of the entire process of making the corn, set in Santiago Atitlan and capturing the lake and volcanos. After Shom and Elena left (2 weeks before me), Vicente hosted a goodbye lunch for me with Dominga. We had that conversation I'd been wanting to have with Dominga all year, triggered by two pornographic pictures we happened across as I was giving Vicente his final computer lesson (he just got the computer as a donation and evidently it came with a couple of illicit clips that must have tagged along with some legitimate photo downloads). The conversation topic: how do they have sex given that the whole family sleeps in one bed. You'll have to treat me to a beer to get the answer. All other goodbyes were far more formal!

During my last full week of work, the clinic threw me a surprise party. My first surprise party ever! They had invited me up for a group picture after work. It turns out they had planned an evening of team-building games, a presentation on the history of the healthcare efforts in San Lucas, some words from the doctor, nurses, and other workers at the hospital about the year, a gift of a BEAUTIFUL San Lucas-style table cloth, and a signed certificate for my work this year. We took lots of pictures and then they said there was one last surprise and they led me in to a beautifully decorated room with white table clothes and fresh flowers for a final meal of churasco, my favorite!

My last week and weekend, I spent all the time I could visiting families and patients in their homes to let them know I was leaving and get a final chance to say "goodbye". The rain wasn't any help: it rained for 8 days without stopping. I finally decided to get a tuk-tuk and just get wet. Angel came with me on all my visits. He did that a lot this year: accompany me to visit patients. It was so great of him. He not only helped me find small huts in confusing tangles of similar-looking paths. But he also gave me strength on the few visits that were especially hard to make, like when patients had serious conditions with little hope for cure or when they had passed away. My two hardest visits were on my last day. One was to a family whose baby I was sure had kernicterus (he'd come in February with a bili of 36 and sepsis ... we didn't have phototherapy and they wouldn't let us send him to another hospital so his bili just fell gradually over 10 days to below 20). I'd promised to give them a summary of his history (something unheard of in Guatemala, even at the National Hospitals) and a description of kernicterus so they could show doctors who cared for him in the future that they might better understand any problems he developed. As it turned out, after Angel and I sat down in their main room and I started to pull out the summary, the mother told me Luis had passed away 2 months ago. She cried and cried. It was so hard to be there and even harder to leave with nothing to do for her (her first son had also died -- of hyperbili and sepsis). But, it was much better for Angel having been there to help me support the mom and say things the way they should be said (I still struggle with my Spanish when it comes to consoling families; I guess I struggle with my English in those situations, too).

Back to happier goodbyes....The family held a combined goodbye and early birthday party (for Francisco) on my last weekend. It was a nice chance to see all the relatives and thank them for their friendships.

Monday was my last clinic day and Wendy came for her final MTX shot with me. I had wanted to give her a present when I left and had planned for it to be a doll as her mom told me on one of her visits that when she was stronger Wendy carried a water bottle on her back in a sling, pretending it was a baby. I couldn't find any nice dolls in San Lucas so I had to make due with a sweater. I think she was not super excited about it! She gave me a great present. She'd never smiled for me when I taken a picture of her (I'd seen 2 or 3 smiles off-film). She pulled out a great big smile for that last shot. What a great way to remember her.

Tuesday was my last day of work and Vicente, Dominga, and I taught the second-years about skin conditions. It was a good class and we followed it with lots of pictures and some recounting of good memories.

And Wednesday, I took off for Guate City and my trip to Belize. Jim, a gringo friend from Idaho who lives in Guate, took me to a nice restaurant in the City where I had salad and savored every last bite of it!

Hasta pronto, San Lucas Friends!

Benita (second-year promoter), Kate, and Dominga
Second-year promoters

Francisco's B-day with Emilse, Jenny, and Cousin
7 months after Francisco's cleft repair ... what a good looking boy!
Julajuj family
"The Aunts": Esteban ("Canche"), Kate ("Cotora"), Emilse, Maria Jose, Panchita, Flori, David ("Mimo"), Ana, Francisco Gabriel, Estuardo ("Tacu"), and Jenny
Aura, Erikson, Alma, and Luis (family with HIV)
Wendy and her BIG smile!

Hosptial staff at the surprise party
Presentation on history of health care in San Lucas
My gift

Games

Cesar, the lab technician More games

Clara and me

Don Martin (janitor) and me Floridalma (head nurse) and me The final surprise
Don Pablo Benedicto, Rafael Tun, and me
Eric (pharmacist) and me
Rafael and me

Minga's daughter and me
Minga's daughters and me
Minga and her husband and me

Rosa (graduated health promoter), Xom, me, Vicente, Dominga, Elena, and Abelino (graduated promoter)

Garden Project

Angel and I had talked casually during our runs early this year about doing a little gardening around the house. There were some "flower beds" lining the kitchen that had grown over with weeds and mint and I thought it would be nice to try to get them back to looking nice and maybe even plant some herbs we could use for cooking. Finally, one Saturday, he got busy working on clearing out garbage, rocks, and tree trunks from a plot of land just behind the kitchen. I hadn't even realized it existed. It was huge and I got really excited at the idea of planting the thing. When I walked back there, though, it quickly became clear that there would be a lot of work in store getting rid of garbage that littered the area. I didn't realize that was only the surface of the problem, literally. As I picked up shards of glass and old batteries, I realized every time I turned over soil there were handfuls of additional debris.

So, while Angel gathered the stones together to form a wall, I dug a couple of feet deep along the whole of the plot and pulled out old liquor bottles, shoes, shirts, dolls, batteries, dishes, nails, bones, plastic bags, and more. This must have been the household dump used by the last few generations.
Pulling out debris took about four weekends, each time producing 4-or-so large boxes of trash.
During one of our health promoter trainings, I got to talking to Genaro about his work (health promoting is volunteer, on-the-side work). He told me about working for IMAP, the Central American Institute of Permaculture. He works at helping families with little or no land make the most of the space they have for growing food, medicine, and spices. I asked him if he'd be willing to give us a "consult". Angel was worried that his plot was too small and that the soil was too sandy and I didn't have the first idea of how to garden here in Guatemala (when to plant what, etc).
This is us on Genaro's second visit to the house. The first day he checked out our plot and our soil. He was really encouraging. He loved the mix of sun and shade we had and talked about micro-climates within our little space. He said the soil was of good quality, too, and we could just mix some manure with it to enrich it a bit. He was also willing to help us with the physical labor as lifting the heavy rocks was often two-person job (and I was more inclined towards pulling out garbage). Once we got the plot pretty well debrided, we took a trip to IHATZ, another permaculture site where Genero works, to get "tierra mejorada" or compost. We mixed it in and Genaro helped us make the design of a raised bed with the soil. He taught us about the benefit of the circular design for ease of harvesting. And he taught us how to make extra space in the garden area by making a raised "caricol", or spiral, garden bed around a nearby avocado tree. We planned to make that bed our medicinal garden (something that is sure to be used routinely here).

Angel had some old bamboo logs lying around so we cut them into stakes to support the borders of our beds and the kids helped us hammer them in (this is about week 6). We used some plastic that was sitting around in the back to fill in the gaps.
When my mom visited, we took a trip to IMAP to see Genero. This is him showing us their seed storage. We were both very inspired.

Genaro brought us $4 worth of little plants and seeds and we planted them all on one day. I didn't have a lot of faith that they would grow because, unlike the way plants come back home in a nice portion of dirt with a good root network, these were literally just the stem, one wimpy little root and no dirt. It was as if someone had pulled them from another garden like you pull a weed. It was hard to even get them to stand up in the soil.
But just 4 weeks or so later, we had some great growth and about 8 weeks later it was amazing. We planted another round of things: strawberry, radish, tomato, zuchini, beans (and lots of things that I still don't know what are; this project was quite a test of my Spanish vocabulary). The second round of plants was just about $5 more.

This last weekend, Genaro brought the plants for our medicinal garden. They came in the form I'm used to: soil and roots and all! This is alcachofa (artichoke), used for liver diseases.

This is amargon, good for stomach ache and intestinal infections
Pericon is used for fever, nasal congestion, and muscle aches

Ruda is good for colic and to ward off spirits who come to bother babies before they leave the earth for heaven (or some other destination)

This is our medicine cabinet planted in the caricol around the avocado tree
In full bloom last month

Genaro re-orienting us this weekend. We were so new to all this, we couldn't tell what was weed and what was crop. Also, there was so much food, we couldn't harvest it quickly enough. We were pretty good with the radishes but not so great with the lettuce. Most of it went to seed.Lettuce (not popular at the Julajuj house) but good for use with tostadasFlowering zuchini (they don't know what this is so I'm wondering what will become of the 20 or 30 zuchini's it looks like it will produce over the next few months) Romaine, endive, arugula, citantro, parsley, and celery
Radish. I never thought these were more than decorations on Thai dishes but I have a new appreciation for the radish. And the kids get so excited when you let them pull one out.

Angel, harvesting radish

Green beans
ZuchiniWeeds that will go in our compost Carrots we planted this weekend

Happy gardener!