I had originally planned to post earlier this week but various issues with my project and work managed to get in the way.
I did want to tell you about what happened at work because I am still trying to wrap my head around it myself. The first few weeks working at the center felt like a blur. There was the obvious language barrier to contend with as many of the patients use expressions that I don’t encounter on a daily basis. They was also the crash course in learning about the patients’ lives that led up to the point that they were sitting in the chair in front of us.
One of those patients was Sylvia. When I first met Sylvia, she had her four year old son with her. It was a rather typical visit; Jorge checked her analysis results and asked how things were going. Her son is pretty gregarious so he would inject at various points. The next time I saw Sylvia was at the weekly group support group that the center offers every Friday. There are two psychologists and a psychiatrist on staff, so patients have ample access to both physical and mental support.
This particular Friday, Sylvia was the only patient and it was also my first time to observe the Friday session. Sylvia’s son was in the room also as she spoke about what had been going on in her life.
Sylvia is a good person that has been born into bad circumstances. Her entire family is addicted to drugs, and she was as well until a few years ago. She lives with her husband, his brothers, and their mother who also all are addicted to drugs. Unfortunately, she doesn’t have enough money to live elsewhere to distance herself from the temptation of the drugs and from the verbal abuse she suffers from her family. Her husband, who she has three kids with, has beaten her in the past. Sylvia also has HIV and hepatitis C.
Until about 6-8 months ago, Sylvia didn’t have custody of her three children. It took months of efforts on her part. While the initial removal of her children from the home was to protect them, Sylvia is a successfully recovering drug addict. (I say recovering because addicts don’t ever stop being addicts; they stop using the substance that they were using.) She has been sober for over 2 years and faithfully takes treatment for HIV and hepatitis C in spite the complete lack of social support from her family. She works whenever she find work. She comes the weekly group support session every Friday. For the two times that she has missed the session, she called to tell the psychologist before the session started.
Despite all of the positive steps that Sylvia had taken, the one obstacle that she faced in regaining custody was the judge assigned to the case. The judge refused to grant custody solely because she had HIV. The judge assumed that HIV was so deadly that Sylvia would die shortly after receiving custody of her children. Legal protection against discrimination due to HIV is fairly robust; however, people living with HIV face challenges in many levels of society and institutions in Argentina.
Now that she has all three of her children back, Sylvia has been taking concrete steps to further improve her life and the life of her children. Her youngest son almost never leaves her side because he is so happy to be with his mother. She has begun legal proceedings to revoke the custodial rights of her husband and initiated divorce proceedings. Once Sylvia is legally independent, she can receive additional benefits from the government so that she will be able to move out of the highly negative environment that she is in.
All of this virtually does not matter because Sylvia is dying. She came to the center on Monday, bringing her latest test results. Her HIV is under control; the hepatitis C is taking its toll and her liver is failing. You could see the jaundice had begun in her eyes that would only get worse. She can be placed on the organ transplant list. Given her medical history, it remains highly unlikely that she would be selected should a matching liver even become available.
This information is hard to reconcile with what I know about Sylvia. She has overcome so much in her life, largely through sheer willpower. On Monday, she behaved as though she knew what was coming, even though Jorge hadn’t said it directly. I am sure that Sylvia will handle it as she has managed every other major burden in her life. She will come to the weekly session this Friday with her youngest son to talk about what she can do to help her children.