Well, I got my wish. I have certainly been rattled. Now I wish the incessant shaking could stop. It has been over two months since I first arrived in Uganda, and the thoughts and images of my first 3 weeks still haunt me. Being in counseling for those first few weeks I saw and heard things that I will never forget, things I will never let myself forget. I may shock some people by saying this, but I actually liked hearing people’s sad stories. I thrived, being able to listen in without having the stress of counseling. I left that for the professionals (even though they tried to push me to do so). I was petrified. Although I was taught the procedure of counseling, how to probe to bring hidden motives to the surface, I have never been good at comfortably talking to people I just met (just ask Joanne), especially in a professional setting, so I felt inadequate to the task at hand. Instead, I sat like a little creep in my corner, said: “My name is Natalia, and I am a volunteer counselor here at Reach Out”, and devoured all the details I could manage to digest in silence. Sometimes it makes me sad to think that I made the decision to leave counseling, because my decision was not founded on dislike of the program –I left because with a lack of English speaking clients, I would spend 6 hours most days, reading books or sitting idle. I did not come to Africa to be unproductive; I wanted to feel useful, at least for my own sake. But now thinking back, those few moments spent behind locked doors were worth the 6 hours spent idle. They made me furious with the world, with women and men, with the God they believe in; they made my thoughts more murky than usual, made me sad to the point of tears sometimes. But what I valued is exactly that pain—the ability to feel profusely something beyond my own selfish thoughts and feelings.
Some people wonder why I listen to depressing music (or what they believe to be ‘depressing’), and it is not because I enjoy being depressed, it is because those emotions are more real to me than any other. They tug at the very core of all that I know, all that others seem to experience at some point in time. I cling to their words because they resonate, they make me think, they make me long. Just like with music, I cling to the melancholy drone of peoples’ stories. I cannot escape it.
Case 1: To Die Beautiful
When I first met her, she seemed so young in my eyes. It was something about the shy way she acted, giggling or turning her head every time a slightly invasive question was asked. She, like many others, pretended she could not hear the question “when was the last time you had sex?” Maybe it was my presence, but from what I have learned over the years, it is easier to do the act then talk about it. That is not a distinctly Ugandan phenomena, it happens everywhere. That is also where a lot of the problems lie. From what I have heard, women are not respected if they talk about their sexual desires or preference to men here. As one can imagine, this puts woman in an inferior position where men can do as they please, and women reap what their men sew –including HIV/AIDS.
They are not allowed to be assertive so their insecurities surface. This is exactly what I saw in her, the insecurity and low self-esteem. Despite the fact that she is being educated at a University level, she still abides by the hush-hush practices of an older, more taboo generation. A friend told me a while back that women are in a constant competition for male affection, simply because there is a higher female to male ratio in Uganda. So in order to secure their man, women often do anything he desires. They will bear children if he so pleases, avoid using condoms if he so pleases, and in the end, if his eyes (and other body parts) stray, they will be hung out to dry like a used rag, with children and possibly the diseases he brought home.
When asked what she will do if she is found to be positive, she responded with: “I will kill myself”. Although at the time this grappled me, now it really does not shock me that much. Many people respond that way to the disease, mainly because of the stigma involved in having it. Knowledge of her status would be like walking the plank –she would rather jump and drown then face the searing eyes of judgment in her community. While the counselor explained that HIV/AIDS is not a death sentence, that people live long lives, marry, and even have children while harbouring the disease, the girl could not see it that way. It is a hard idea to grasp; that life will be normal after the monster awakes in one’s blood. In all honestly, I do not think I would be able to see it her way either.
What shocked me the most about her case was when we gave her information about ARV treatment. She professed that if she was found to be positive, she would refuse treatment like her 5 other friends who died of the disease, not because her noose had already been tied when her results were given, but because she heard that ARV’s can cause weight gain! I was baffled. So self-image does follow you to the grave. However, when I think about it, a lot of sexually active women and teenagers in North America refuse to take birth control for exactly the same reason –the prospect of gaining a few extra pounds. Granted, having a baby is a little less extreme then dying but the similarity between stigma and self-image in Uganda and Canada is striking.
This girl, let us call her ‘R’, was HIV negative.
Case 2: This Disease Is Killing Our Country
The story of this 29 year old woman devastated me because of the circumstances that surrounded it. She came in with complaints of extreme stomach and head pain, and with rashes on her arms, and left with the knowledge that the disease had taken over her body. Prior to her divorce, her husband was very verbally abusive to her and his sexual practices were not all that trust-worthy since he would spend many nights outside of their home. When he saw she was sick he blamed her for her illness, and took her 3 children away from her. The thing that makes this case even more heart wrenching is that her youngest boy has been feeling sick since before their divorce, without diagnosis or treatment. You could see it in her eyes, in the fidget of her hands; she feared disclosing her status to her husband because with his history of abuse, she did not know what he would do. But she knew that telling him would be the only possible way to get her son treatment.
I fought back tears in silence as I listened to her last statement and the strong composure she adourned when saying it. Although she accepted her status without a tear, the look on her face when she said “this disease is killing our country,” could be felt to the core of every bone in my body. Sometimes, when thoughts of HIV/AIDS are at the forefront of my mind, I hear it echo to me before I drift off into sleep at night.
About a month ago this same woman sat beside me on a taxi, and I could not even muster a hello. I wanted to question her, ask her how she is doing, and ask her if she ever got her son back, but I was tongue tied. I searched her eyes to see if she remembered me, the little creep in the corner that listened as she poured her heart out, and a part of me thinks she did. But taxi’s are not exactly like counseling rooms and HIV/AIDS is not on the top of the list for casual public transit conversation.
Case 3: Three Big Blows
I honestly do not understand how many hits a person can take before they start to lose all sense of dignity, faith, and joy. “A” made me contemplate this thought. This meek girl with kind eyes sat next to me in the counseling room; she had been there before. This is her story:
At the age of 10 she was raped by her stepfather on numerous occasions. At the age of 14 she discovered that she had skin cancer due to the visible abrasions forming on her arm. This discovery was a double-edged sword because when the doctors did her blood work for cancer, they also discovered that she was HIV positive. Now, at the tender age of 15, she must deal with the trauma of being raped by a man that was supposed to care for her, she must deal with the treatment of her cancer, and she must deal with a disease that should never have happened to her.
I hated the world that day, the day I met her as she was being prepped for ARV treatment. I could not understand it, how someone could be so disgusting, so cruel. I distinctly remember having the urge to sever her stepfather’s penis. He had taken away her childhood, her sense of innocence, and I wanted to take away the thing that made him think he had the right.
Sitting there in that room with her, I noticed how beautiful and gentle she was; she would not hurt a fly. What shocked me the most was just how strong and courageous she was. I have never met a 15 year old who has been through so much, yet still has the capacity to smile with warmth and trust the hand she shakes. She had accepted the disease a year back, but you could see the tremble on her lips, hear it in the crack of her voice—committing to a life of stringent drug adherence, twice a day at specific times, without fail—life is never going to be the same.
Case 4: I Spy, With My Little Eye –Injustice
How desperate does someone have to be to get any sort of help? Do they have to be cringing on the floor as their insides pour out? These are the questions that ran through my mind as I heard the woman’s story. One month ago she gave birth to her baby. One week ago her husband died. She is malnourished herself but thanks to the kindness of a wonderful friend, she has a roof over her head and a little bit of food if her friend can produce it. However, this friend is also poor and her mud house perpetuates disease and danger every time her house floods, which is quite often (being rainy season and all).
While this is devastating and her circumstances are grim, that is not the worst of it. When her eye started itching terribly she went to Mulago Hospital to get it checked out. They turned her away without even glancing at it because she had no money to pay for a check-up. She went back 3 times, all with the same result. Fast-forward a couple of weeks and she is sitting before me; with a concaved eye, barely visible, with what looks like a large spider imbedded under the skin leading away from her eye, on her nose. It looks as if some kind of poison has been injected in her skin, protruding the grotesque insect-like formation. This is what HIV/AIDS does—it finds any spot it likes in your body, a place it feels at home, and strikes.
I was surprised because usually the clients I see do not have any visible signs of infection, so my curiosity drove me to look up the stages HIV/AIDS can progress to. From what I could decipher, this woman was in the third stage: Symptomatic HIV Infection. She has what professionals call “An Opportunistic Infection”. This is where the disease has damaged the immune system so severely that the T-helper cells normally in charge of protecting the body against infections become worn out and die. Without these cells, lymph nodes and tissues begin to disintegrate, and the virus takes its opportunity to infect any body system it chooses, including the nervous system.
It makes me furious to think about the ifs. If only she had an education, she might have had a job that provided income and food for her malnourished family. If only she had money, she might have been diagnosed and treated before the disease took her sight. If only. Another thing that made me mad was Reach Out’s response to getting her food support—rejection. Let me take you back to my first question: How desperate does someone have to be to get any sort of help? Now you tell me, is her case not dire enough?
http://www.avert.org/stages-hiv-aids.htm
Case 5: From the Rubble, She Rebuilt
They say AIDS does not have a face, well in her case they were right. I worked with a chipper old woman who has the cutest fashion sense in the whole counseling department. She is like a dinosaur in the history of Reach Out—there since day one.
Although I sometimes find myself wondering who at Reach Out is HIV positive, I could not really picture her with the disease. She is so strong and powerful, so humorous. After one of our counseling sessions she let me in on a little secret—after her diagnosis 10 years ago, she seriously contemplated killing herself. Even though she devoted her life to caring for those with HIV/AIDS, the thought of having what they had tormented her. She was a nurse when she contracted the disease from a sick patient she was taking care of. I do not know if they used gloves or anything then, but it definitely makes the prevention methods I learned more real. This friend explained to me that it was because of the phenomenal counseling she received after her diagnosis, that her mind was changed. She became a counselor because she wanted to work with people like herself, who were struggling to find hope in their lives after finding out the news that they have been infected with the virus. She saw the flaws in nursing, how many nurses came into the profession with the ideal of making a difference in people’s lives, but somewhere along the line they stopped caring. They became like machines, programmed to meticulously do their jobs without a sense of joy or attachment. She no longer wanted to be a part of that sphere –she wanted to connect to people and help them overcome the obstacle that changed her life. She is one of the most inspirational people I have met here in Uganda.
Case 6: Teddy
Like most days in counseling, my day started out painfully uneventful; and then came “Teddy”. I call her Teddy because she wore this funny little beige sweater with brown teddy bears scattered on it –it was endearing, even on a 19 year old. It painfully reminded me that she was just a child. The stress in the room when she walked in could be cut with a knife; she was so stiff and skittish. The regular questioning began and my counselor friend, sensing Teddy’s agitation, could not help but ask her why she looked so nervous. As soon as she did so, Teddy burst out into tears and said she was scared. She hesitantly told us her story.
She came to the clinic because her boyfriend’s mother forced her to come in an effort to find some dirt on her; she dislikes Teddy and does not trust her or think she is good enough for her son. Teddy was scared of what the mother would do to their relationship if she did not do as she asked, so she obliged. It is crazy, the control some people can have over others. I understand the mothers desire to ensure her sons happiness, but there is a line that seemed to be crossed somewhere. To instill fear in someone to the point of tears and forcing her to get tested is a little going overboard. I had high hopes for her because she claimed that her and her boyfriend always used condoms when having sex, and the last time she tested, 6 months prior, she was negative.
It is crazy how one word can hold so much power over a person: positive. And then the floor cracks and crumbles under one’s feet. I looked at her as she got her results, this 19 year old girl in her teddy bear sweater, and her reaction terrified me. There was silence for about 3 seconds, before the sound of excruciating hyperventilation came projecting from her, what seemed like, collapsed lungs. I thought she was going to faint as she dropped her head back and stared off into space, but instead, she began to wail. Fits and fits of tears streamed down her face like a violent waterfall colliding with the rocks below. It was as if, at that very moment, her whole world crashed and came tumbling down in a torrent of violent shards. Nothing remained but the emptiness and the fear. I saw her slide off her chair and fall to her knees, in an effort to simply feel grounded. I struggled to fight back the tears as they began to well in my eye sockets, and saw that the counselor to my left was trying to do the same. In counseling you are supposed to know how to control your emotions, but seeing and hearing Teddy made it difficult. Seeing someone so devastated by grief made every fiber of my being detest the injustice of it all.
As I looked at her face down on the floor in childs pose, I thought about how I would react to such news if I were in her position. I pictured myself sitting in the room in silence with tears pulsing from my eyes, not speaking or looking at anyone or anything; feeling empty and alone. Inside, the silence would erupt into a monstrous flame –blazing and destroying every good thought in its wake. My mind would crumble, even before the virus had the chance to take over. The counselor would say “you will see, it will be okay, you will live life normally”, but her words would mean nothing to me because everything I knew inside myself had died already. Normal was going out care-free into the world; dancing, drinking, living life like a theme park; not pumping my body with pills twice a day for the rest of my life, knowing that the virus that had filled my blood has no cure. I would feel parasitic, not normal.
I did not know how to comfort this girl while these thoughts were running through my head. How can you comfort someone when you feel like you are them? I listened to her eyes speak as they flickered, and I knew exactly what they were saying –“why me lord, why me?” My mind worked alongside hers, as we both struggled to make sense of it all. It is times like these where my faith dwindles. How can I have faith in a God –governor of all things-- when this scared 19 year old girl, who has so much to live for, has just been struck with the news that she is HIV positive? I know that plenty of people in Uganda are HIV positive and are able to live their lives positively, and I know there is treatment to help the virus remain dormant, but it is hard for me to envision a larger plan at work here.
As I sat by the TV later that night –listening to my IPod and trying to drown out the news being transmitted –I wondered how her future would look like. I looked over at Collins sleeping on the couch and prayed to some unknown force, to protect his generation from ever going through what Teddy must now go through.
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