Chapter 1: Who is Nomsa?

This is the beginning of a new blog series called “Wednesdays with Nomsa”.  My hope is to be able to post every second Wednesday as I spend time with Nomsa each week and ask her questions, gather answers and go on a journey together.  I believe this is a journey of life, not death and so does Nomsa, which is why she has agreed to share her life we me, and with you.

I first met Nomsa in December 2012.  She was sitting in the back of an ambulance with a facemask on that covered everything except her beautiful, tear-filled eyes.  She was rail thin and her cheekbones pushed out on the sides of the mask.  But even just seeing her eyes and hair I knew she was a beautiful young woman.  As I have gotten to know her I know that she is beautiful both inside and out.

Nomsa is 24-years old and has had five children including two sets of twins.  On November 19^th (which happens to be my birthday) she gave birth via C-section to twin girls whom we call Leah and Rachel.  Nomsa was very sick and was sent home to her mud hut to care for her newborn babies, but she could not care for them.  Nomsa was “co-infected”, a term that I hear a lot now, but had never heard six short months ago.

Co-infected means you have two nasty infections at the same time and usually those two infections go hand in hand.  Nomsa is living with HIV/AIDS and now has Multiple-Drug Resistant Tuberculosis.  A deadly combination which is also highly infectious.  There is a saying here that goes, “HIV and TB are best friends. You always see them hanging out together”. 

Nomsa had no strength to care for her babies, no milk to feed them because she was so sick and she didn’t want to take the chance of passing on her HIV to her babies through her breast milk.  She had no money to buy formula and no way to even get to a store.  Worse than that, she was worried about passing her Tuberculosis (TB) on to her babies.  Those sweet little babies girls were at HIGH risk of getting sick and dying. 

It is said that 70% of all people living in Swaziland have active or inactive TB.  It is estimated (but not confirmed) that 30% of all Swazi’s have Multi-Drug Resistant TB.  What is that you ask?  Drug Resistant TB is a type of TB that does not respond to the “normal” drugs given to TB patients.  A resistance usually comes from the patient not finishing the full TB treatment because they couldn't afford it, couldn’t get back to the clinic regularly or just decided to give up.  When they go back on TB medication they may have to try different ones (maybe less effective, more side effects etc) to get well.  Multi-Drug Resistant TB is when you are resistant to multiple TB drugs, which is very serious and it is hard to be treated. Because the TB problem is so big in Swaziland (also the country with the highest HIV rate in the world) there is an extensive program through the Ministry of Health to help TB patients through Home-Based Care. The Home-based Care worker is the one who notified the Social Welfare office to say that the twins had to find a home while the mother went to the hospital to live… or die.

Nomsa is now in a special hospital and will be there for a minimum of seven months and could be there for two years.  She gets a large and painful injection in her hip every morning as well as 18 pills at 10AM.  Then she gets more pills at 10PM. She is also on anti-retroviral medication for HIV/AIDS and her body is fighting hard to live.

The first night Leah and Rachel came to El Roi I got a call from Nomsa to see how there were doing.  I told her that they were in isolation for a month while we waited to see if their TB tests came back negative.  We also had them tested for HIV and would find out in a couple of weeks what both results were.  She seemed happy to know that we were taking good care of them, thanked me and told me that she loved me.  I was a bit stunned.  We don’t usually know or have further interaction with mothers after the baby comes to us so this was new to me.  My interest was tweaked and I decided to go and visit this young woman. 

A short time after I decided to go and visit Nomsa and see how she was doing.  That first visit kicked off a friendship that I believe is divinely designed.  I am learning so much from this young woman and from the doctors and medical professionals who are caring for her. 

I met 10 women living in the ward with Nomsa.  One of them was a young girl, maybe 13-years old.  In the two months that I have been visiting Nomsa, seven of the women have died, right there in front of her eyes, and the eyes of the 13-year old girl.  There is one other woman who is still alive, but may not be by the time I post this.  She has been moved into a single isolation room and is fading quickly.  The ward is almost empty now, but a few other women have come and filled the beds that laid empty for a few days. 

Each week when I visit Nomsa I take her food. While they feed her, the food is not tasty (hospital food) and she requires a LOT of protein to help her body fight.  She has no access to a refrigerator so I have to be creative and take protein that is sort of shelf stable. She has also asked for mayonnaise, Aromat, chilli sauce and other things that will help her food taste better. 

Nomsa is a real character and is a fighter at heart. She makes me laugh, she makes me cry and she brings me great joy.  I look forward to our visits each week and we send text messages on the days we aren’t together. 

The reason I want to write this blog is to encourage her while I get more educated on TB, HIV and how we got in to this mess in the first place.  Nomsa represents millions of young, beautiful African women who are suffering in silence and dying invisibly.  I want to put a name and maybe a face one day (with her permission) to all of this. 

Before I left for Asia a few weeks ago I gave Nomsa a notebook to start journaling in.  She has written 15 pages of her life story for me to read. It is heartbreaking to read, but she also makes me laugh and cheer at her own determination to live.  With her permission I will also work some of her own writings in to this blog.

I am excited and thankful to have the opportunity to tell Nomsa’s story and the story of so many who don't have a voice.  Let us all listen together.

Janine

PS – today is Nomsa’s 25^th birthday and she received her first ever birthday cake.  I wasn’t sure if she would prefer chocolate or vanilla, so I did the only reasonable thing I could think of … I took one of each.