Real Time: 8am, Tuesday July 21st
Setting: TASO Headquarters, alone for the 5th working day in a row. My supervisor was suppose to be in office yesterday, but travel plans changed - which he neglected to tell me about until I called him yesterday morning wondering about his absence - and so I'm making use of the free computer and internet while I can. The only problem is that I already have a headache…
Let's jump back in time a bit…..
Thursday June 11th - TASO Home Visits; Mukono, Kampala
Once a client has become registered with TASO, if they are for one reason or another unable to travel back to the nearest TASO centre, they can be eligible for home visits. In this case, a TASO team piles into a 4x4 land cruiser and go to follow up on their cases and provide them with treatment and/or referrals as need be. Clients are asked to provide directions to their home, but keeping in mind that there are no street signs, people make use of landmarks and give several contact people. If the person does not have a phone, you just hope you'll find the place based on the information you have and that the person is there!
Led by Dr. Mariam, we visited 4 clients and a community health centre, which might not sound like a lot given the 9 + hour day that was put in, but it's a lot of driving deep deep into the village and the roads are far from roads; but rather uneven mounds of dirt or as a TASO staff pointed out, "…it's like driving through a potato patch…" ie. buuuummmpy!
So I guess I'll give a brief synopsis of each of the clients we visited and then conclude. And even though I don't have last names and it would be virtually impossible for these people to be tracked down, I have still chosen to change the names of the clients out of respect and privacy.
Joan's last home visit from TASO was 6 months ago, the same time at which she stopped using antiretroviral drugs (ARVs) and so when we came, she had more or less given up all hope. Her husband is dead and she is HIV+. Since 2001, she has had weakness on the left side of her body. She has seizures basically every month and can no longer control her stool or urine. Dr. Mariam says Joan needs surgery; she probably has paralysis and needs reflexology to get the feeling back in her body as well as a CAT scan to determine the cause of the seizures; however, Joan does not have the financial needs for transport or for the services…
Summer is also HIV + and has one son. She has very low iron (anemic) and from the acetone smell on her breath, is it suspected she is diabetic. She has been on ARVs for some time, but it is recommended she receive a blood transfusion and stop taking septrin as this is probably affecting her low iron level.
Florence - oh I felt for this woman. She has cancer in addition to her HIV+ and a red cist coming out of her eye. Her gums have deteriorated to the extent that her teeth are literally hanging from what's left. In my notes, I don't see any jottings on what Dr. Mariam suggested for treatment - I guess that means she didn't really have the answer to her problems…
Lastly, there is Joshua. Joshua is HIV+, with a wife and three children. Did you note that? He has a family; he still has a wife and children to carry his name. Take note of the fact that the past 3 clients were woman; and, during our visits, there was no indication of a living male figure, husband or otherwise. The fact that Joshua and his family are still together and so strong and supportive of this most unfortunate situation is seriously something of a testimony; it doesn't happen to often, but when it does, you make sure not to take it for granted.
Ok, so Joshua. In addition to his HIV+ status, he had a very very bad skin reaction. At one point, he was literally white; flaky ashes would fall from his body, and it was embarrassing to even try and take him to a doctor because to travel he would have to take a taxi and people would stare - stigmatize and discrimination against something uncontrollable by any means. When he finally did manage to get to hospital, the doctors almost immediately stopped what they were doing and brought him to the front of the cue; he case was so…jaw-dropping and serious that the doctors so no reason as to why he should wait to receive treatment. The rash has reduced to only minor patches on his chest, but he still has so many problems….
Joshua also has an infection in his left eye. Every morning, tears are discharged and it's very very itchy. This could be in connection with this skin rash he has, but Dr. Mariam was unable to confirm for sure. Moreover, the left side of Joshua's body is in pain and sometimes his arm and other parts become paralyzed.
Joshua's CD4 count is 11 which is considerably low; clients are meant to be on ARVS when their CD4 count drops below 250, so Joshua needs to come to TASO Mulago very soon to receive treatment for both his eye and to be started on ARVs, but as is common with so many other patients, at the moment, he just does not have the money or the means of transport. As the travel is quite a distance, he children would stay behind while the wife traveled with him, meaning they would have to find someone to care for the children during their absence.
From the beginning TASO has strived to reach out and provide home care to people living with HIV and AIDS, and it truly does make a tremendous difference in these people's lives, but even when we spend only 7 minutes there, it's difficult not to become attached or emotionally involved with the clients. How badly I wanted to put Joshua in our car and take him back to Mulago with us and give him my bed to sleep in until he could go to TASO the next. Why couldn't we do that? We're going there anyway…. You tell the clients they need to go and get treatment, but they have so little - of course if they had money, a car, time; they would go - but it's just not that easy. Particularly, as a non-governmental organization, they themselves rely on funds from outside to sustain them, so it's not as though there is money just sitting around doing nothing. And besides, there are so many people who need support; you can't help them all - how do you choose?
Thursday July 2nd thru to Saturday July 4th - Central Region Music, Dance and Drama Festival; Iganga, Kampala
Ok, so even in the midst of all the confusion/lack of a legit internship, there are serious perks to your supervisor working at TASO headquarters. One of which includes attending TASO's Annual Central Region Music, Dance and Drama (MDD) Festival; one of TASO's major outreach events on HIV prevention.
Some background on this concept:
Since 2003, TASO MDD Festivals have been in existence since 2003. MDD groups are present at each of the 11 TASO service centers, together with those of partner health centers known as mini-TASOS where they compete amongst themselves within their respective region to showcase the work they are doing in communities, as well as educate the surrounding population on HIV/AIDS messages based on the theme of the year. The TASO MDD groups are composed of between 20-25 people living with HIV/AIDS who have decided to go public about their sero-status and freely share their experiences with others. In addition to these festivals, they also visit schools, markets, and other communities to educate people through personal testimonies, music, dance, and drama.
Now, even though the majority of it was in Luganda, I enjoyed myself very very much. Some choirs were better than others and I was reminded of my Caledonias love, how I haven't touched a guitar in three months and that this poses a very huge problem in conjunction with my love of music. The dramas were equally hilarious in what I think were their attempts to keep in line with TASO's theme "scaling up prevention among adolescents" which funny possible anecdotes about youth such as sneaking out in the middle of the night to go to a party or meet a "friend" and a crazy father "overreacting" when you return to late.
The company I traveled with, the adjudicators (ummm… I mean, judges; I realize that since I've been in Uganda so long I'm starting to use different words that people don't always understand :p) were equally hilarious: my supervisor Joseph, an adjudicator from the National Theatre named Rose, who being the only other female traveling with us was deemed my aunt, and another TASO staff Joshua. When traveling you get a driver and for this trip we got a man named Yahaya who I have a personal bias for and just have to say is simply my favourite. Memorable moments include the fact that my supervisor decided it was unnecessary for us to book a hotel beforehand, and so of course upon arrival in Iganga, almost every place was full because of the festival as well as the local university (Busoga) that was holding convocation ceremonies that same weekend. This turned into almost an hour of us driving around town from hotel to hotel trying to find a place to stay. And of course, we're big shots right, so we require only the best: Hostels were immediately ruled out ("we can't be staying in the same place as the youth - we'll never sleep; they play their music too loud and too late into the night…and always drinking" me: :uuuhhh….yaaa…of course…") and our rooms (individual rooms please) had to be self contained - ie. have a toilet and shower in them ("I can't be taking a boda-boda just to go to the toilet"). Meals were equally laughable - breakfast didn't exist at our hotel to meet our 7am demand and so we made various attempts trying to find a place that was open at such an hour, which usually turned out to be another hotel, which I didn't point out, but that we could have stayed at, had we booked in advance…
And so, overall the festival was of course amazing; it was such a positive atmosphere filled with sincerity, not just at the hope of getting on the podium, but reaching out to others - living with HIV/AIDS or not - along with a pretty fun(ny) company of people all thrown into the mix.
Next up: Gulu….!
Time for lunch…!