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| Chloe and I taking Nomsa out of the hospital to the truck. |
For those of you who don’t know who Nomsa is you can catch
up by reading wednesdayswithnomsa.blogspot.com
Her real name is Gcebile Mabuza, but when I first started
blogging about her I called her Nomsa for two reasons; it provided privacy for
me to tell her story and it was an easy name for people who were reading the
blog. “Gcebile” has a front tooth
cluck to it and can be tricky for the untrained tongue.
On November 19th, 2012 (my birth day), Nomsa gave
birth to her fourth and fifth children at the age of 23 years. Her girls Rachel and Leah were her
second set of twins and in early December she was dying on the floor of her mud
hut from MDR-TB (Multiple Drug Resistant Tuberculosis). She was taken to the TB hospital
and I was called and asked if I could take the twins. The answer was “yes”.
And that is how Nomsa and I met.
In January 2013 I started visiting her once a week to take
her food, reading materials and to try to help her get healthy and well so that
one day she could care for her own babies and they would not become
orphans. For a year she seemed to
get better, gaining weight, taking her medicines and injections daily and
helping so many other dying women who needed help in the ward.
In the fall of 2013 she took a turn for the worst. She had left the hospital to take her
medication at home, but got very sick and ended up back at the TB
hospital. One day when
Chloe and I were at the hospital visiting we heard the news that we never
wanted to hear (but always suspected).
Nomsa had become Extremely Drug Resistant to her Tuberculosis medication
(XDR-TB). This life-altering
moment not only changed her life, but it changed ours. This
moment was captured live by film
makers Jezz Newman and Beckie Stewart in their incredible film called
“TB: Silent Killer - Return of the plague”, which is a PBS/BBC
documentary about MDR-TB. If you have not seen the film, I
encourage you to google it or go to www.pbs.com
and watch it today.
Since that day Nomsa’s health has been in decline. She was moved in to isolation and has
watched roommate after roommate succumb to this horrific “plague”, dying in
front of her eyes. Her weight has
dropped from 120 lbs to 83 lbs.
She is skin and bones, can’t walk on her own, is in terrible pain and is
not always lucid.
In 2013 we built a house for her (a single room) at the
kibbutz on Project Canaan with hope that she would one day be “culture
negative” (non-infectious) and could move. That day of “un-infectiousness” does not appear to be on the
horizon. In fact, we are told unofficially that only one person in Swaziland
has recovered from XDR-TB. We are
still praying for a miracle.
Last week I succumbed, not to the disease, but to her cries
to go home. She had given up hope
in the hospital and was failing quickly. The Doctor shared with me that they
almost lost her a couple of weeks ago while I was away, but she rallied one
more time and stabilized, with more medication.
Last week I could no longer bear her phone calls, begging
and tears. I sought council from
friends and experts as to the risks of bringing her here and surprisingly got
full support from everyone, including the other women at the Kibbutz and the
Aunties at the Children’s Campus.
Everyone said that I MUST go and get her and they would all help care
for her. The Kibbutz ladies would
help care for her and her room. The Aunties would send down food three times a
day. People from abroad have
offered to pay for her food, get her a cell phone with a radio and come and
visit her when they can. The
outpouring has been overwhelming to me.
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| Nomsa seeing her twins on the way to her house. She couldn't touch them, but saw them. |
She has been here for five days and I now realize this may
be the hardest thing I ever do.
Here are a few personal confessions from me. I am not good with sick people. I am not good with hospice. I would be a better emergency
room worker, but not a long-term care person. I hate to see people in pain. I avoid watching people
suffer. Nomsa is sick, she is in
hospice under my care, she has been in long-term care (hospital for two years),
she is in pain and she is suffering.
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| Janice Johnson with Nomsa in her new bed. |
I have gone to see her each day to count out and put in the
correct containers her 36 pills, for her XDR-TB, her HIV/AIDS and her potassium
and magnesium deficiency (which has lead to kidney failure). I (and everyone visiting her) must wear
a N95 mask and replace it every week to keep me/us safe when I/we see her.
The women at the Kibbutz have gone every day to wash her,
clean her room, bring her water and try to encourage her. They are simply
amazing.
I believe that Nomsa is suffering from depression and some
dementia, which is causing unusual conversations and demands (i.e. she only
likes white bread, doesn’t like boiled chicken, pizza isn’t real food, and she
wants a full time nurse to come and sit with her). We are all working together to sort this out and help get
each of us through this for the weeks or months to come. Three days a week a government nurse is
driven out to the farm to give Nomsa an injection in her hip. They are committed to doing this every
week, but have said that sometimes there is no gas for the vehicle and they
don’t always travel when it’s raining. Sigh. We will make a back up plan, because
we can, but what about all the other people who will miss out on their
injections?
I will admit, I am really struggling with this. I feel a huge burden of responsibility
and want her to get better, and I do believe in miracles. But I have to remember that if she is
not healed in this life, that we brought her here so that she can die with
dignity, surrounded by people who love her. I need to try to smile when I visit her (though the mask)
and not feel sick when I count out her pills. I need to remember to show her that I love her and not that
I am terrified of her death.
Thank you for reading this blog and for your prayers for
everyone here. Please pray for
protection for all and grace, joy and HIS peace that passes all understanding.
Janine
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