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.
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