Once again I’m writing the blog on Word as there has been no WIFI access at either the hotel or the house where we are holding the clinic. Luis spent a lot of time tracking down the owner of the house who had the authority to turn on the WIFI signal. That accomplished, Luis had to drive to the town center to buy a card with an access code and password. In the end, the little plug-in router only worked on the ancient house laptop and none of us could get online even to access our email. My wonderful world-traveling brother researched pocket hotspots for me, even sent me the links for the two best ones for Guatemala. In the pre-trip chaos, it slipped off my list, and I can hear him laughing, (in disgust.) I’m keeping my fingers crossed that our hotel in Tacaná will be WIFI equipped, but more likely it will be Thursday evening in San Marcos before I am able to reconnect.
Today was a culture shock day for me on various levels. At various times and places, I’ve experienced things that jolt me into remembering that people from other countries are from other countries. There are some variations on the reasons for the differences; some are simply due to poverty and others seem more country or region specific. Some things are completely trivial and others are heart rending and impossible for me to really “accept.” A couple examples of each follow.
First, there was today’s breakfast, spaghetti with hot salsa, black beans with jalapeños and tortillas. Though Luis and the Cuban doctors were delighted and asked for more, it was a real challenge for Bette and me to start our day with a meal that sets your tongue on fire and makes you break out in a sweat. Luckily there was also atole, a hot, sweet, thick drink made from cornmeal, and chamomile tea.
The second trivial culture “shock” or perhaps jolt or bump are more appropriate words here, is seeing how women are portrayed in advertisements and clothing stores. The shops that sell women’s clothing all have half-mannequins, only the lower half is important, dressed in skin-tight pants. These are displayed at the edge of the sidewalk in a posture maximizing the tight fit of the pants over the buttocks. Bill boards and ads for everything rely on beautiful, flirtatious, scantily clad women to do the selling. It must be incredibly frustrating to be a serious woman here.
The more difficult side of my cultural conflict concerns two patients. At breakfast
Luis and I were discussing how to arrange an evaluation for the boy I saw yesterday who came from the very remote village and couldn’t walk unsupported or speak. I was telling Luis that the aunt was literate and could, perhaps help the boy learn how to read. Luis said that this was very unlikely. Even though the aunt clearly was invested in her nephew, having traveled over a week to bring him for an evaluation, tutoring him would mean seeing him as an intelligent person, and Luis felt this was very unlikely to occur. He went on to explain that once a person is labeled as handicapped in rural Guatemala, the family puts him in a different category, still in the family but more in a boarder role. The person is taken care of, as one would a beloved pet, he explained, but it would be very unusual to spend time on educating such a child. Some of this attitude is practical. Everyone in the family, including the children work hard in this agrarian society, and there is no time or money to spend on special services for a handicapped family member. The parents still love the child, but he is not productive. They make sure he’s fed and clothed and secure and then they go about their work for the day. No one has the luxury of sitting with the child and teaching him his letters. Though there are government programs in place that would provide free physical and speech therapy and free special educational services to this boy, none of those are available in the rural parts of the country. Being an educated city-dweller, Luis knows things could be different for the boy, but he also is Guatemalan and he accepts that this is the reality in his country. Being who I am, a pediatrician and therefore a child-advocate from the US, I have a much harder time accepting that this boy’s life is determined by where he lives. I can envision an alternate life for him, physical and speech therapy, an education leading to eventual employment, rather than the life he’s likely headed for, sitting on the side of the road with a cup, begging. Unfortunately, my alternative vision is just fantasy as I can’t fix the world. Usually I understand this, but today, as you’ll see from the second story, I’m finding it a bit harder.
Norma is a now 19 year old young woman whom I met in February of this year. She had what turned out to be severe rapid onset rheumatoid arthritis that had begun three years previously and had virtually destroyed most of her large and small joints. She was seen shortly after our clinic by a rheumatologist in Guatemala City and started on medications, and arrangements were made for a therapist to come to her home. Unfortunately, she has had very little improvement and spends most of her days in bed. She and the family are extremely disappointed as they had expected a dramatic recovery. Luis has spent a tremendous amount of time transporting Norma to and from appointments and picking up medications. He also has been trying to arrange for Norma to receive free intensive care through a team approach at a rehabilitation center in the city. Norma’s parents have rejected this idea and have elected to not refill her prescriptions as they run out. We visited Norma and her family today, and found her in her bed, the wheelchair Luis purchased for her stashed in the corner. She barely reacted to our visit and seemed very depressed. Luis’ take is that the family expected that Norma would stand up and walk after the specialist saw her and they now feel that further treatment is not worth the effort. In addition, Norma is now in that “boarder” category, and therefore spending time doing range of motion exercises and getting her into the wheelchair, and spending money on medications no longer makes sense. My take is that in addition to the cultural differences, a medical bomb hit this family three years ago and they are all still in shock. Norma barely reacted to our visit, just lay in bed looking at the ceiling, and only making eye contact when I asked her a direct question two or three times. I had brought some devices to assist her in holding utensils and cups, but she had no interest in them, allowing me to try them on her hand, but looking away, not commenting. Norma was a normal 16 year old girl three years ago and now is bedridden. Her parents have accepted that this is now her future and they are trying to get on with their lives with her two younger siblings. Culturally, what’s happening to Norma is normal here. Looking at a life outside of the village where you are born is very rare, so when Luis talks to the parents about a big opportunity for Norma in the city, the parents automatically reject it. They can’t envision a future for Normal outside their home.
When we left Norma’s house, I was close to tears, and even now, as I write this, I find it hard to find that rational culture acceptance that I am usually able to call up. For this particular girl, I know, medically, that there are basically two choices. If the family chooses to do nothing more, Norma will live the rest of her life in her bed. She may die young from complications of being bedridden or she may live long enough that her care will be transferred to her siblings when her parents get too old to care for her. If instead they choose to let her go to the rehabilitation center, she can receive an evaluation by a coordinated team of specialists and have the intensive rehabilitation she needs to maximize her physical potential. She can complete her education and receive counseling and job placement assistance. It’s possible that she would have friends and a semi-independent life. That’s my fantasy for Norma, but because there actually is a government sponsored rehab center in Guatemala City with a space for her, all services free to the patient, this fantasy could be Norma’s alternate reality if her parents were able to step outside their culture and let her go.
Okay, enough angst for one posting. The room where I see kids in Sibinal is on the second floor of a large house. There are windows on three sides so I can see all around the village. One thing that struck me today is that the kids in the village are running around playing all day long. Nobody needs to prescribe 60 minutes of activity a day to these kids. Nobody has a scheduled soccer game, dance lesson or music lesson. The kids run in packs of all ages, the larger one helping the smaller ones up the hills or over boulders. No adults are involved. Sometimes a game is organized with sticks or rocks or caves made out of old cornstalks, but mainly there’s a lot of running and climbing. Cleanliness is not highly valued. Faces and hands get washed but most kids wear the same clothes for at least a week at a time and socks and underwear aren’t part of the outfit. Shoes are hit or miss and the kids’ feet are thickly calloused. Most of the kids born here will live their lives here. Again, I struggle with my educated expectations for children. These kids have no expectations of college or even high school. Most will top out at 2nd or 3rd grade though the grade school here does go through 6th. The parents don’t see the need for education, and the kids are needed to help with the farming. I find myself feeling sad for the kids, for their lack of opportunity to “have a better life,” or to have a choice to be something other than a farmer or farmer’s wife in a rural village. It’s such a hard life. And then I have my self-to-self discussion about me imposing my values on theirs and questioning whether the majority of youth of the developed world have it that much better than these kids. The family structure here is strong, the kids are safe and secure, and with the agriculture projects in these three areas, malnutrition is decreasing dramatically. Who’s to say what’s best?
On a final, “however” note, I saw a 15 year old girl who had been seen at the government clinic for a pain in her lower abdomen two weeks ago. An ultrasound showed an ovarian cyst and surgery was recommended. Her parents haven’t made the appointment for surgery because they’re scared and they don’t have the money to pay for the surgery. They asked me my opinion. I didn’t have the paper that showed the size of the cyst, so I had to give them an explanation based on scenarios – a small cyst might go away on its own but a larger cyst could twist and could cause the ovary to lose its blood supply. Not being able to afford needed medical care is a huge issue in Guatemala. There is a big shortage of doctors here which is why the two Cuban doctors are in Guatemala. A couple of years ago, the Guatemalan president made a deal with Cuba. Guatemala pays Cuba to send doctors here for two years. After that, the doctors get two years to go work in any country they like and Guatemala pays their salary. It’s a great deal for the doctors; many go to Africa or other Central or South American Countries, and Guatemala, though paying a lot of money, gets high quality doctors to fill the empty spots. Also many of the Cuban doctors like Guatemala and end up staying.
Well, off to Tacaná and crossed fingers for WIFI.
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