Getting to know you...

In the last couple weeks I have been gradually learning how to do more and more things at my job. For better or for worse, I now know how to enter the data we collect from the survey into the database. A lot of that is just mindless and repetitive work, but parts of it are actually pretty interesting. The questions that Emily and I ask patients are only part of the survey-- each time a patient comes for a visit to us, they also spend some time talking with the doctor, whose name is Rita. Rita fills out a few more pages of forms having to do with more intimate social issues, illnesses and symptoms. At the end of the visit, Rita and Emily (and sometimes me) collaborate to write down a few general observations about the patient, their adherence to the antiretroviral regimen if they're already on meds, and other social and medical issues. So by entering this along with the medical-related data into the computer, I develop a bit more of a profile of the person and feel like I get to know them a little better (albeit a strange way of getting to know a person).

One thing that appears to be no different here than in the U.S. is the universally bad handwriting of doctors. One of the hardest things about the data entry is interpreting Rita's handwriting, and this is obviously more difficult for someone with little knowledge of HIV-related afflictions in English let alone in Spanish. But I'm learning bit by bit. What is most striking is not so much the symptoms people have in and of themselves (and I will spare the details), but the sheer quantity of things these people have to deal with all at once. In the United States, HIV patients generally start antiretroviral treatment when their CD4 count (# of a certain kind of white blood cells) hits 350. Here, because of lack of resources, they don't start the patients on the meds until their CD4 is 250, and usually even lower. Needless to say, the fewer white blood cells you have, generally the sicker you are. It's horrifying to me to think about what that would be like-- knowing that your body's defenses are growing steadily weaker, observing the onset of more and more symptoms, including illnesses virtually no one gets who doesn't have AIDS, and knowing that if you don't start receiving treatment at some point, you will most certainly die. I think it is mainly for that reason that so many people are so willing to participate in the study. Even though we are not providing people with additional treatment, the patients are happy to have people paying attention to them, people to talk to, people working to improve the lives of HIV patients in general. Not to mention how relieved these patients are when they finally start their treatment. It is like being on the verge of drowning, and having someone throw you a life preserver. To continue with that analogy, I guess Estudio SeR might be like getting a big hug from a stranger after you've just been saved from drowning. It may not seem like we're doing much for the patients individually, but they do appreciate it, and most understand that our ultimate goal is to improve treatment for patients with HIV in general.

Yesterday I went through a whole questionnaire with a patient by myself for the first time. Emily was downstairs attending to a different patient, so I was left in the office, one-on-one with another guy. It was a little scary, but a welcome challenge. Fortunately, I could understand the majority of what he was saying, which is more than I could say about some Dominicans. And fortunately, he was much more talkative and open than many of the other patients. Speaking of which, it's also fascinating to see how different patients cope with their situation. Of all the patients who have set foot in the office in the last few weeks, I honestly don't think I could group any two in a certain "type" category. They are male and female, older and younger, straight or gay, outspoken or shy, dejected or animated. Some (more often men) have had countless sexual partners in their lives, while others report to having just one, and sadly, some people even contract HIV from blood transfusions. With some people it's hard to get a word out of them other than just blunt and/or reluctant answers to the survey questions, and with others, even a simple question like "What is your birth date?" will set them off on a long tangent.

So anyway, this guy was not one of those that we'd call a "talker", but for whatever reason, he did open up to me a little. He expressed a significant amount of regret about his carelessness in having contracted HIV, and kept saying that if only he had been more aware of the risks of unprotected sex when he was younger, he would never have behaved the way he did. He was married (many of the patients are) and also expressed a lot of guilt about having spread the infection to his wife. His wife is also the only person who knows he has HIV, besides us, and he seemed worried about how other people would treat him if they knew. At one point he said that he couldn't complain about his suffering because of the disease, but he only hoped that God would forgive him for it.

At this point I was a little at a loss for the right thing to say. In the first place, what exactly did he hope to be forgiven for? Promiscuity? Ignorance? Passing the disease to another person? Or just merely the fact of being contaminated with HIV? And in the second place, being a non-religious person, I simply have no idea how to talk about religion. I could and maybe should have said, "I'm sure God will forgive you," but on the other hand, how would I know? And should I pretend to agree that he even needs God's forgiveness? My utter secular-ness makes it hard for me to even imagine how a religious person thinks, and I'm always afraid that anything I say implying any degree of religious devotion would give me away as a fraud. So instead of saying anything I just sat there nodding sympathetically.

When I came to the question about whether or not the patient had traveled, he replied that no, he regrettably had never been out of the country, but that he hoped to travel someday. He hoped that his illness wouldn't prevent him from getting a visa, to go to the United States for example. His dream, he said, was to see at least one of the seven wonders of the world, like the statue of liberty for example. I was surprised and asked incredulously, "Is the statue of liberty one of the wonders of the world?" The patient seemed pretty sure that it was, so I didn't argue. Later I asked Juan, the taxi driver, if he thought that the statue of liberty was one of the 7 wonders of the world. He agreed that it was. "And another one of the 7 wonders of the world is the Dominican Republic," he said. (Note: Upon performing a Wikipedia fact check, I have found that neither the statue of liberty or the Dominican Republic is listed as one of the 7 wonders of the world, either ancient or modern.)

The patient, despite his regrets, also had a great sense of humor. When I asked him if he had a nickname, he told me it-- something simple, the equivalent of "Joe" or "Rob". He followed that up with, "That's what they call me by day."

I smiled. "And what do they call you by night, then?"

"That I can't tell you." And he laughed, as if he'd been waiting all day to tell me that joke.