Tuesday, September 16, 2014
Chapter 19: Nomsa is dead. The rest is history.
Last night Nomsa left this life of pain and suffering. Her work was complete and she went to be with Jesus, no doubt receiving a “well done, good and faithful servant.” I am posting this blog a day early so that you will all know. She leaves behind five children including a 7-year old son and two sets of twins.
I first met Nomsa (her real name is Gcebile Mabuza) on December 13, 2012. The story is recounted in my blog called wednesdayswithnomsa.blogspot.com. Her second set of twin girls, Rachel and Leah, live at the toddler home on Project Canaan. They were born on my birthday, November 19, 2012.
Nomsa’s struggle with Drug Resistant TB has been a long one, years in fact. She has lived longer than anyone would have expected. In the middle of 2013 she put on weight and it looked like she was getting better, but the test results never reflected our hopes and dreams.
In August 2013 she got the news that her resistance to the drugs had increased and, as seen in the “must see” PBS/BBC Documentary film called “TB The Silent Killer,” Nomsa learned that her MDR-TB had become XDR-TB. Very few people have survived XDR-TB and with her HIV positive status, the likelihood that she would survive was low, but we still prayed for a miracle.
In April 2014 I was told by the doctor that they almost lost her, but again she rallied and the desire to live kept her alive. In June 2014 she couldn’t take it any more at the hospital and begged me to take her out so that she could die at “home” – meaning Project Canaan. And we did.
It was a difficult decision because she was suffering from a deadly and highly infectious disease, but we put precautions in place and brought her in the back of an open truck to the room that had been built for her. Chloe and Nomsa became very close over the past 18-months and it was so timely to have her home while Chloe was off on summer break. They got to visit, talk about “boys,” eat snacks together, and Chloe even got to help her choose her clothes, hair and jewelry for her big speech at the opening of the El Rofi Medical Center. If you haven’t read her speech from that memorable day please go to: http://janinemaxwell.blogspot.com/2014/07/nomsa-addresses-nation-and-her-voice-is.html.
Funnily, she was quite a difficult and demanding patient. For someone who is so sick and comes from abject poverty, her demands have been high and often unreasonable. The entire team of caregivers did their best to be patient, gracious and loving through it all.
One day not too long ago, Nomsa's brother dropped off 400 Rand at the front gate for us to give her ($40 US). Up until that point he had never come to visit or care for her, but that day he dropped off cash. It is literally the only cash she had in years, since she had been in the hospital for almost three years. Do you know what she did with it? She quietly tucked it into my hand and asked me to buy Chloe an 18th birthday gift. She had me lean in close to her and she looked me straight in the eye and said, "Janine, it must be something very beautiful. Very beautiful." Can you even imagine that? Needless to say I bought a very beautiful necklace and returned lots of change.
On a daily basis, Nomsa struggled taking her medication. She was supposed to take dozens of pills each day and get an injection three times each week. All day she worked to get the pills down her throat, but she never finished them. Some days she would take the yellow ones and other days she would only get the red ones down. On top of that, she would not eat or rarely ate (unless we brought her “goodies” … KFC or pork ribs). In addition to that, she was very stressed all day long about taking her pills. We learned that only four of the pills were actually for her Tuberculosis, the rest were to ward off the side effects of those four pills. So a week or two ago we had a difficult conversation and she decided to stop taking her pills. She said, "Janine, the Lord has numbered my days, and only HE knows when I will die. These pills are not helping me anymore. Only God can help me." I supported the decision because it was easy to see that she was not improving by taking them and she was suffering physically and emotionally by taking them.
On Thursday, August 21st we had an urgent call to go and visit her. She was in respiratory distress and was afraid. Ian and I rushed to her side and prayed with her to calm her down. The next day some new friends from Medecins Sans Frontieres (MSF - Doctors Without Borders) visited to do some further training on dealing with infectious diseases and to counsel us through the days ahead with Nomsa. They recommended that we take her back to the hospital for her final days as it would potentially be a terrible death and they wanted to spare us the heartbreak, pain and memories of her death. I was almost sold on the idea until I spoke with the other girls who live at the Sicala Lesisha Kibbutz. When I told them that we might take her back to the hospital, they were shocked and begged me not to. They said, “Janine, she is our sister now and she must die at home.” I was stunned. I told them that it could be a terrible death, and did they really want to see that and have their children see it too? They would never forget it.
They looked at each other and said, “Yes, if we were in our homestead she would die there. Just like our other sisters, brothers, mother and father. This is our home now and she must stay. If you take her back to the hospital she will think we have abandoned her and that she is not loved. We will be with her until the end. Please allow her to stay.”
Wow. These young women who have come to us through very difficult situations and circumstances took my breath away. They were willing to suffer the pain of watching someone die, so that she would die knowing that she is loved. I agreed.
I explained this to our MSF friends and they were very moved by this bold and selfless decision. We then met with Nomsa to discuss what would happen as she became sicker. My concern was a question of resuscitation, or at what point DO we need to take her to the hospital? The only hospital that would accept her was the TB Hospital, and I know how much she hates being at that hospital. So, we had that conversation too with the nurses from MSF. I asked her under what conditions would she want to be taken back to hospital? Bleeding? Pain? Nomsa was very clear that under no circumstances would she want us to take here there.
On Sunday, August 25th Nomsa called me and begged me to take her to the TB Hospital. She said she didn’t believe that she was dying, but said when she got there they would put her on a potassium IV, she would get better and come back home. She could not walk anymore and was in a lot of abdominal pain. On Monday morning we met and again she begged and pleaded with me to take her to the hospital. The problem was that I wanted to honor the agreement I made last week with witnesses that I would not take her back. I tried to buy time by saying that I didn’t have an open-backed vehicle that I could take her in that day. But she was a determined young woman and called the doctor at the TB Hospital herself, and he sent an ambulance to pick her up. The decision was taken of my hands, and for that I was thankful.
When they lifted her up into the back of the ambulance, I immediately recalled the day I first met her. It was December 13, 2012, and she was in the back of the same ambulance heading to the TB Hospital, just as she was this day. Not knowing how infectious her disease was back then, I climbed up into the back of it and gave her a big hug as she handed me her twin girls who were almost a month old. They had been living and dying with her in her mud hut until someone reported her to the hospital. I assured her that I would care for them as if they were my own. The doors were closed and off they drove.
Nomsa lived with us on Project Canaan for the last two and a half months of her life. As the ambulance drove past the toddler home we brought her twin girls, Rachel and Leah, out to wave to their mom. It would be the last time they would get to see her alive.
On Tuesday and Wednesday she called frequently to talk, tell me how badly she was feeling, and of course to ask me to bring her “goodies.” But this time it wasn’t KFC that she wanted, it was her Bible, disposable diapers and anti-diarrhea pills.
Late in the evening on Thursday she took a turn for the worst and the diarrhea was unstoppable. She went into respiratory distress around 10 PM and was given oxygen as well as medication to try to pull her back from deaths door. At midnight she took her final breath and was gone.
I didn’t know this was happening, but couldn’t sleep that night. I was awake thinking and praying from 2 PM until morning. At 6:17 AM I got a call from the young woman who was here caring for Nomsa on the farm, telling me that she got a call from one of the cleaners at the TB Hospital to say that Nomsa had died in the night. I didn’t want to believe her, so I called every doctor and nurse I had phone numbers for to get confirmation. At 7 AM I heard the news officially. She was gone.
No more pain. No more suffering. No more tears. No more fear.
“Blessed are those who mourn, for they will be comforted.” Matthew 5:4
PS – We have established a Nomsa Memorial Fund at Heart for Africa. If her life has touched you as it has touched mine I encourage you to make a contribution and leave a note in the comments box for her twins. All notes will be printed out and put in the girls special keepsakes boxes to read when they are older. All donations will be used to provide hospital/medical care to Nomsa’s children, and all the children who living on Project Canaan. We will put a plaque in her memory at the El Rofi Medical Centre. Click here.