Working at TASO has been good so far, nothing too spectacular but at least it’s something. I have been assigned to follow a counselor named Moses. My first day was spent sitting in his stuffy 8x10 office listening to him counsel clients in Luganda only to receive a brief summary of the conversation at the end of the session. He’s a nice guy, but my frustration with the language barrier continues to grow as I feel it’s a MAJOR stopping block in achieving anything of worthwhile while I am here. I know, I know, something will happen, even if it’s not what I expect. It is just hard wanting to do so much or learn so much and I feel like my potential is limited by someone’s willingness and ability to accurately translate. I realize mentoring someone or having someone shadow you is extremely time consuming as there are many questions that often bog down the individuals daily work routine, but sitting silent hoping an opportunity drops in my lap is not an option either.
Prior to coming to Africa I knew little about AIDS, I still know very little. The past two days I spent in counseling sessions, one in the office, one in the field, a refrain played in my head…The face of AIDS takes many shapes. I have found myself wrestling through a number of emotions and judgments that take me by surprise. I am ashamed by some and confident in others.
In the clinic, Day 1.
The first client today, a male, 47 but looked 60 with salt and pepper hair, a dirty dress shirt, a maroon blazer 2 sizes too large, and a scruffy beard. He seemed complacent of his plight, uncaring, apathetic. His CD4 level has dropped below the 250 threshold required, allowing him to qualify for free Anti-retroviral (ARV) treatment from TASO. His CD4 count, 164 (click here to learn more about CD4 since I'm unable to break it down clearly). Fiddling with an empty mug, the man gazed out the window, eyes following anything that passed by, while Moses explained the side effects of the ARV's. Part of me was angered watching him. I perceived him to view the session as a waste of time... perhaps it was for him... and maybe for us... but Moses pressed on.
The second client, a woman, age 56, full of grace and poise. She looked very dignified sitting on the other side of the desk in her traditional garb and head wrap. She was frail, but the puffy shoulders of her dress hid her bones well and if she hadn't moved once to adjust her wrap I would not have seen her protruding bones in her chest and neck. It was unclear whether the woman's partner had died or left her, either way she was alone, moving through the process of living a positive life alone.
Next, a mother and child, the boy, 11 years old. From a distance he appeared to have a pigment disorder on every part of his exposed body – yet, upon a closer examination they were sores, pink in color and I’m left to conclude they cover his entire body. I’ve seen a number of clients with similar bumps/sores. I’m told this is a common attribute of positive patients. The mothers’ eyes welled, though refusing to shed a tear as she told of the torment the boy faces at school every day as the kids make fun of him because he is positive… the pink dots confirm this. The mother said she hasn’t found the strength to tell her son of his status so she has not. Exiting the room, she shut the door behind her, the silence was thick as the boy hung his head and spoke softly, hiding the plethora of pink dots covering his face. The boy told Moses that while his mother had not told him his confirmed status, he knows. Inside, in his heart he knows of his fate. My heart sank.
The face of AIDS takes many shapes and is unjust.
In the nursery a girl laid crying making no sound or shedding a tear. Only once before have I witnessed such a site. When in Sierra Leone I saw a terribly malnourished child who physically was screaming and crying hysterically, yet her body was too weak to produce a sound or shed a tear. And here in the clinic, another; she was so small. Not small like a newborn but smaller in a different way. She had only flesh covering her bones and the skeletal structure of her head and face were visible through her tight skin. From her length I would guess she was about one or two, but I would be hard pressed to bet she weighed more than 9 pounds. The woman tending to her appeared to be her grandmother; I suspect her mothers’ life had been claimed by this disease.
I struggle understanding the mentality here surrounding the disease. Perhaps culturally there is a lack of emotion, or people really feel as they appear… to not care and thus, I have yet to find empathy looking at a life wasting away to a disease that in most cases could have been avoided by life choices. I fear writing this statement and sending it out as I don’t want to affirm some people’s notion that AIDS is a disease of choice and “these people” are choosing to be ignorant so let them die… but as I have tried to do all along, I want to be real in sharing my thoughts and emotions as the journey continues here in Uganda.
Looking at the kids, the ones who have made no choice and had no voice, my heart fills with bitter sorrow and rage. Perhaps this is when people say life is not fair, but I fail to see the point in living a life of agony, pain and suffering, but, not being the giver of life this is not a determination for me to make.
In the field, Day 2:
I traveled to Kiwangala (pronounced Chawangela) village today. It is about an hour out of Masaka, down a bumpy dirt road. Shortly after arriving I found myself surrounded by snot nosed, phlegm coughing kids. The counselor was leading a session for the kids while their parents participated in the adult sessions.
Counselor: What does AIDS do?
Kids: Kills
C: How did you get it?
K: From your parents.
The counselor moved on talking about the importance of healthy food and taking their medicine. A mother made her way down the hill to drop off her little girl, then turned and walked back up the hill for her counseling session. Squatting as if perched like a bird, the young girl, in a torn and dirty yellow satin dress refused to consider the stuffed animals and snacks, but instead, stared up the hill, eyes fixed on her mother as a steady stream of tears fell. She made no sound, just longingly cried. I tried to console the small girl in the torn dress, lace all affray but no comfort was found. My mind wondered and heart sank low recalling the same longing look and cascade of silent tears as my mother’s casket was lowered into the ground.
I cannot imagine a life where death is such a common occurrence, is accepted and simply part of daily existence. I am not naive and certainly understand the course of life, but having seen the two sides of death I am perplexed with the delicacy surrounding death in the U.S. verses the “deal with it and move on” mentality I have witnessed in Sierra Leone and now here.
Are we too sheltered in the U.S. from the many realities of the world, or are we afforded the luxury of fearing death, morning the dead and fighting for life when the doctor spends 20 minutes beating around the bush only to tell us we’re dying? Here, plain faced, in 2 seconds flat I’ve seen people learn their HIV status is positive, options are laid out, they are told they will most certainly die from the disease and that’s that, the individual walks away, showing no emotion, knowing of their impending death to return to their unfinished chores and tasks bidding for their attention before sunset.
Two people at outreach were too weak to stand or walk on their own. I fought not to stare as my mind raced, if I give them a drink of my water or a bite of my lunch would the nutrients sustain them through their visit? Few locals paid much attention to the weak and the medical professionals paid no attention at all…back to the question… is my reaction due to a sheltering, a luxury of not being surrounded by death daily.
Perhaps my inquisitive nature is getting the best of me as I wonder what it is like to have sex and wonder if this will be the time you become infected with the disease. How can one find pleasure in something intended to be such a beautiful exchange when such a disease is lurking in the midst? Perhaps it never crosses their minds, or maybe no one cares since AIDS seems to be unavoidable when you’re surrounded by it… like a great rain cloud moving in. You know the rains are about to begin, it’s simply a matter of when.
Tomorrow is my birthday, the big 28. I have been given many luxuries and blessings in life... for this I am grateful. However, this awareness won't change the reality that luxuries are afforded to those born in certain locations by no choice of their own. What can I do to make change for all those born into a world of pain and death?
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