Hospice Visits

Thursday, June 2nd

I find myself feeling nauseous once again during my experiences in Guguletu.  We visited the home of a woman who is HIV positive and currently a hospice patient.  Her living conditions were horrible; she lives in a shack full of holes about the size of a small college dorm room with her child.  When we walked in, she could not even focus her eyes and would grimace in pain constantly.  The air was thick, uncomfortable and smelled of sewage, as the large population of flies flew around the small room.  Seeing someone in such discomfort in those living conditions was so hard to digest that I just became numb and didn’t know if I should cry, leave the room or stay and hear what she had to say.

I decided to stay and hear her speak, as she muttered very unclear sentences, she said something that created even more discomfort in the room.  She said, “I’m sick of American tourists coming to see me and making broken promises”.  I began to feel dizziness and shame at the same time after those words were spoken.  Her lack of awareness made me wondering if she ever even understood that Americans were coming to visit or if she ever even gave consent for us to come see her.  I felt stupid to be standing in someone’s personal space while they were in hospice and unable to articulate or help themselves.  The nurse then explained that the patient and her child could go days without eating due to lack of funds and therefore her ARV meds do not work properly.  The extent of what the hospice care includes is cleaning the patients and checking to see what else they can do, but rarely do they provide meals.  This specific patient had not eaten for one day along with the rest of her family.

  

I was numb with emotion, but soon began to cry hysterically (yes, again) as we left and headed to the car.  It took me a good ten minutes to calm myself and even articulate what I had just seen and experienced.  All I could say to the car full of faces starring back at me for a response was that I felt stupid.  I don’t know why those were my first words, but I felt as though I had just entered an area where I was not welcomed and completely unable to help, all I could do was watch.  But I was sick of watching, I felt as though I was treating these people like an exhibit in a museum by invading their space and studying their situation.  But most of all, I felt stupid because I went in there feeling as though I understood the face and pandemic of HIV and AIDS.  That is when I realized there are too many faces of HIV and AIDS for me to even come close to truly understanding.

I didn’t have enough strength mentally or emotionally at that point to enter the next hospice home.  I waited in the car with Brian and Suzie, who were at the time battling with the experience internally as well.  The group returned to the car in tears.  I remember seeing Chelsey’s tear streaked face as she walked in, she couldn’t look at me or anyone else and just went straight to sit down.  The group told us that the second visit was worse that the first.  It was an older man in an even smaller one bedroom run down shack.  He had open bedsores and needed to be changed like a young child.

We’ve been put in this situation to look through their lens, but soon the nurses returned laughing about our level of discomfort and emotion and did not seek to understand the experience through our lens.  The experience for us at the time was absolutely traumatizing.  The majority of us felt as though we were treating the hospice patients as an exhibit, one to which we were unwelcomed.  I felt like I was watching a holocaust movie from the sickness I was seeing and from the sick feeling in my stomach that was occurring.  I can see numerous sick faces and I understand the seriousness, but what can I do?  I am stuck with no tools to help.  I am frustrated.  I am emotionally numb.  I wonder why I was born into such a fortunate home while others are born into poverty.  I feel lost.

I can never really accurately describe the extent of what I saw to those of you reading the blog, but all I know is that an experience that took ten minutes is something that will stay with me forever.

Today was a roller coaster of emotions.  I end the day overall exhausted physically, mentally and emotionally.  After lunch at JL Zwane with a mission group of students from Georgia, both of our groups attended the Siyaya musical education group.  It was a refreshing event for the day after such a traumatic experience earlier with the hospice visits.  The director said something that really calmed me at the time.  He said, “tourists come here and have sad looks on their faces as they stare onto our streets, but look at the streets closely and you will see that we all have smiles”.  This seemed to really ring true to my own experience.  Because so often I look with sadness at the citizens of the townships but they do not look back at me with sadness.  Instead they enjoy life and enrich their lives with a passion for food, music and community.

After reflecting on this journal entry and experience a lot has changed.  It has become easier for me to view the hospice visit through a different lens.  The woman who spoke of Americans in such a negative connotation was discussed later between our group and Reverend Spiwo.  We asked why she spoke so negatively and claimed that the church did not assist her.  We were informed that the church does assist her regularly and that due to her mindset from the lack of food and use of ARV’s she may have chosen to take out her anger on those who she felt had the power to change things.  Therefore, since we were white Americans she inferred that we were there to help, instead of visit and observe.  In the culture of Gugs visiting someone who is on hospice is not invasive, instead it is the way that they educate others about HIV and AIDS within the township.  This experience was a good example of how reflection can really change the perspective of an experience.  However, I have learned that my feelings are anger and frustration at the time were valid and something that helped me reflect.