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
Janine
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.
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