Wednesday, March 27, 2013

Chapter 5: What are those girls doing?

Chloe reading Chapter 4 to Nomsa under the tree at the hospital.

Last week when I met with Nomsa she told me a story that made me physically nauseous.  I went home and told Ian about what she said and he was speechless, then he said, “What kind of a man would do that?”   I spent the week thinking and processing what Nomsa told me, and today when we met again I asked her to confirm her story. Then I asked her permission for me to share it with you, our reader.  Nomsa reads every word that I write and she has allowed me to tell very private stories of her life, but this one was different. I didn’t want to get her in trouble, on the off chance that someone she knows reads my blog.  She is a brave young woman and said, “YES!  Tell them. It is the truth!”  And so I will.

As we sat under the tree outside the hospital told me this story.

“Janine, you know, not everyone has family or friends who will come and visit them.  Many people here never get a visitor. I think people are scared to come and visit in case they too become infected.  The lucky people, like me, have a visitor who will come to encourage them, but also bring good food to eat. They feed us here, but we need more protein.  We need more food because of all the medication we take and because we are so sick.  Some of the girls don’t get extra food so they become more vulnerable to “predators”.”

I thought to myself, more vulnerable? These women are all in advanced stages of HIV/AIDS AND they have Multi-Drug Resistant Tuberculosis AND they are in a remote hospital that no one wants to visit AND they are there for 8-24 months. Vulnerable to predators?

“Some of the men who are sick here will tell their friends on the outside that there are women here who need food.  Just the other day a man came with some fresh fruit and gave it to my friends. They disappeared for a while and then came back.  I wondered ‘what are those girls doing?’  Janine, they had sex with that man!  For fruit!

“Hey Janine, it happens a lot, but the girls don’t have much choice. They want to live.  The best price that is paid is KFC Chicken.  That one is the best I am told.  Can you believe it?  They have no hope.  They have lost all hope for their future and it makes me so sad.”

Nomsa shook her head and looked down to the ground.  While she could understand the desperation of young women, she really couldn’t get her head around how desperate they really were. And what about the men?  What kind of man would bring chicken or fruit to a patient who is dying of HIV/AIDS and highly infectious Multi-Drug Resistant Tuberculosis to have sex with them? Really??  Stop for a moment and think about that one if you would.

I am thankful for Nomsa and her courage to speak the truth even when she doesn’t want to speak it and I don’t want to hear it.  I said goodbye to her today, as I won’t see her for the next month because of my upcoming trip to the US. Her tears brought tears to my eyes and we hugged and committed to pray for each other. Imagine?  She is praying for me as I travel back to the United States of America to share with people who have ears to hear what is really happening here in Swaziland. I will stay in nice accommodations, eat nice meals, ride in nice cars and laugh with friends and family.  Meanwhile Nomsa sits in a hospital alone, with people dying all around her and waits to get her most recent TB Culture test back.   If it is NEGATIVE she can leave the hospital when I get back at the end of April. If it is POSITIVE she starts back at the beginning of a two-year treatment for a disease that wants her dead.   

We are committed to praying for each other. I can’t honestly say that if I were in her shoes that I would pray for my friend who was going off to the “land of the free, home of the brave”.  I think I would be selfishly be praying for myself.   But that is what makes Nomsa different than anyone else I know. She cares about others.  She wants to change her future and she knows that it starts by her actions in the present. 

Nomsa inspires me and challenges me.  I look forward to being back in Swaziland at the end of April to see her again, and hopefully to bring her “home”.


Wednesday, March 20, 2013

Chapter 4: I want to leave the hospital.

I can’t imagine living in a hospital for many months for years.  It seems that I might die of depression long before a disease killed me.  Maybe that is true of many of the people who have died of MultiDrug-Resistant TB here in Swaziland. It was just too much and they gave up. Too much pain, too many pills, too many injections, too much death, too many side effects, too much loneliness and so they give up hope and die quickly thereafter. 

TB treatment typically lasts from eight months to two years here in Swaziland, but if you become Drug Resistant you have to start the treatment all over again.  You start back at DAY ONE, with new drugs to see if they can win the war against the disease that is trying to take your breath and life away.

Nomsa was diagnosed with TB in 2007 and has been in and out of hospitals since that time.  This last time she was admitted in December 2012 and her expected stay would be until as early as September 2013, but could be many months past that.  In January 2013 Nomsa was unable to walk down the stairs by herself and often found herself crawling to the toilets.  She was really really sick.  But in February she seemed to be getting better very fast. She was putting on weight, laughed more, ate better and could walk without assistance or wheezing.  In March we started talking about what she would do when she left the hospital.  I knew it was many months away, but it might give her hope to think about the possibilities.

I quickly realized that Nomsa had no possibilities other than life itself.  I asked her to tell me step by step what would happen when she was discharged from the hospital. At first she had no idea what I was talking about, but I asked her tot ell me what it “looked like”. I am a visual person, which helps me with my writing, so I wanted to know what she was seeing as her first steps when she left the hospital after she was no longer infectious.  Here is what she said:

I will pack up my things in a plastic bag and walk to the front door.  The hospital will give me a ride home. They always give you a ride.  I am told that someone lost the key to my front door, but then it doesn’t matter because I think the door has lock has been broken for a long time. My home is a round building made of mud with a grass roof. The building has not been repaired in many years and it was really dirty when I visited last. A TB lady will come to my home every day to give me my injection until I don’t need that drug anymore – probably many months. I won’t be able to work until I get healthy again.”

I asked her how she would get food and she said, “I will go to my neighbors and ask them forsome food.  If I go with my bowl they will give me some if they have some.” 

I asked how long she thought she could do that and she wasn’t sure about the question or the answer. How could she plan? How could she know?  Why would she want to walk down that road in her mind, knowing that there was no job, no money, no one to provide any care for her, no way for her to get her children back with out any of the aforementioned things.  Why look to the future and think about it when there are no options. 

Nomsa represents thousand of young girls here in Swaziland who have the same problem.  Poverty eliminates options. With no options people lose hope.  When we lose hope we die, and sometimes we die a slow and horrific death because of the choices we make.

I like options and I like plans and so I tried to get her to dream.  Maybe this was not a fair or kind thing to do because how do you dream if you can’t think beyond how you will get your next meal. If you have no options, NONE, how do you “weigh your options”? The conversation didn’t get far so I tried a different tact.  I pulled out a map of Project Canaan and started to tell her about the farm and the agriculture and the vision for the future of the children and the women’s centers etc.  After I talked for a long time I asked her if there was anything there that she might like to do.  Again, it was a very unfair question.  Her answer was, “Yes, I would like to do anything!  Janine,I will do anything”. 

As we talked further I learned that she likes to cook. We both laughed when I told her that I like to cook too, but I don’t consider boiling dry maize in a large pot over burning wood to be “cooking”.  She would like to learn to cook. Maybe she would even be the cook at the Toddler Home one day. Imagine?  An idea?  A possibility? It is a dream that could very well come true, if only she could get healthy again.

This week is a week of waiting.  Minutes pass like hours. Hours pass like days.  We are waiting to get the results of Nomsa’s TB Culture that will tell us if she is still infectious or not.  If the test comes back NEGATIVE then she is no longer infectious and can potentially leave the hospital. If it is POSITIVE we have a whole different problem to face.  

If she is non-infectious my hope and prayer is that she will be able to come to Project Canaan and live here in temporary housing until we get the Sicala Lesisha Kibbutz for women built.  She can focus on regaining her strength and health while doing some work here.  Nomsa would still get an injection daily for her TB (given to her by our nurse on site) and that would continue until she gets a second NEGATIVE Culture. At that time she no longer gets an injection, but still takes her cocktail of pills for the balance of the two-year period.

If her test comes back POSITIVE and she is still infectious we must regroup.  Her last test came back positive, which was bad news because the drugs she was taking should have been effective in making her well. The POSITIVE result means that she has become resistant to more of the drugs she is taking and it is a very bad sign.  Sadly they donot have a way to know which drugs she is resistant to here in Swaziland.  The next step is that she goes back to DAY ONE and not only starts treatment all over again, but they “throw everything at her” as her Doctor said. They will give her every drug that they have to treat TB here in Swaziland.  It will mean two injections in her hip muscle each day, more pills added to the cocktail and more chance of side effects and the two year count down starts again.  She will have to stay in the hospital because the POSITIVE test also means that she is still infectious.  Our fingers are crossed and prayers being said that her test results are negative and that she can come home soon.

There is no doubt that Nomsa is very scared.  After our meeting with the Doctor she said, “I want to leave the hospital. I just want to go home.”

I can’t blame her. Living in the hospital with people going crazy and dying all around you is like living in hell.  But going home for her is certain death, and she is smart enough to know it.

“I was diagnosed with TB in 2007 and from then until now I have been in and out of hospitals and am still being treated for TB.  But I am happy that I am still alive, I can talk, I can hear, I can see and I can walk – isn’t that great?  And I am the mother of five healthy and beautiful people.  Isn’t that mercy from The One above?  God is great and He does not count our sins, but gives back life to those who are sorry for their sins.  Isaiah 57:15 says, ‘I live in a high and Holy place, but also live with people who are humble and sorry for their sins’.  I think that has been keeping me going since I was a young kid. I knew that God would forgive all my sins if I asked for forgiveness.”

Please join me in praying for Nomsa and all the other “Nomsa’s”who are suffering and feeling hopeless today.


Wednesday, March 13, 2013

Chapter 3: What does a young girl do when she is desperate and has no options?

From the age of 12 to 16 Nomsa moved from house to house, never feeling safe, never feeling loved.  She changed schools as often as she changed homesteads and was always wearing someone’s leftover school uniform from the last school she attended.  She was ostracized, laughed at and made fun of. Children all around the world can be so cruel.  After a long grueling period living alone with no food she found refuge in Manzini with her half-brother’s daughter.  Here is what she shared with me.

“My half-brother’s daughter was living with her friend in Manzini and neither of them worked, but they had beautiful clothes and shoes. They would always have food and new clothes and I was shocked and wondered where they get all that money from?  One day they took me out for breakfast and told me it was time to buy my own clothes and food and be a good looking lady.  Hey!  That next night they gave me some of their nice clothes to wear and took me out to the clubs in Manzini.  I was “recruited” and shown every trick in the book.  That night I became a “magician”.

“I met a guy who I think was a very good magician.  He was a soldier by profession and he impregnated me.  When I told him I was pregnant he gave me money and told me to get an abortion so that we could continue to enjoy ourselves freely. I told my friends and they agreed that I should get an abortion and said it was as easy as A-B-C, they had all done it before, not once, but several times.  I was really scared because I am from a family who knows God and I used to go to church and I knew very well that it was wrong and that God would not be happy.  I had already done so many things that I am ashamed of, and even though I was a sinner I decided NOT THIS TIME.  I decided that my only choice was to move back to my family homestead.  I didn’t know how to start life again, but at least I would sleep and wake up without anyone telling me to do more sins. I had had enough. Life was hard, but I had to make the right choice.

“Nine months later when it was time for me to give birth I went to the hospital, but I knew that had no money to pay the hospital bill after I gave birth. But they admitted me anyway because I was bleeding.  I had no labor pain, but the doctor told me I had to have a Cesarean Section, so they operated that morning and I gave birth to a beautiful baby boy. I called his father, but he made it clear that he was not willing to talk to me or care for me, or the baby. The hospital keeps you for a week after having a Cesarean Section so I was there and I remember being in terrible pain and crawling to and from the toilet one day. I can’t really remember what happened after that but I remember sleeping on my bed and thinking I had been thrown in to an iceland without clothes.  Hey, I was sweating like I was doing roadwork!  They sent me for a scan and they saw blood clots so they operated to remove the clots and then closed me up again, but things got worse. They took me back for another operation, but by then I was very sick and thin, but the nurses were very kind and helped me with the baby when I was too weak to hold him. 

“After a long time I started to feel strong and was ready to leave the hospital, but the bill was R950 (approximately $110 US) and I didn’t have that kind of money, not even a penny so there was no way to leave the hospital.  They sent me to another room to sleep on the floor with another woman who couldn’t pay her bill.  We had to stay there until we paid, but the Lord touched my half-brother and after a month he came and paid my bill and I was allowed to leave.  It was really an unforgettable moment.  I went back home with my baby, but there was nothing to eat, no candles to light and I was too weak to walk to the dam and fetch water with my baby on my back.  Life was difficult for us and I didn’t know if we would live or die.  After almost one year passed my brother came back home and told me he was going to send my son to “his people” to be cared for and he promised to pay for me to go back to school.  He took my baby away, but then refused to pay my school fees so I couldn’t go back to school. 

“I was alone again and didn’t know what to do other than go and get my baby back.  When I arrived at that homestead I found that my son was living with an old woman whom my brother had promised to pay monthly for the child’s care, but he had not paid her and so she refused to give me my baby until she had been paid.   There was nothing I could do, but go and look for a job.  I found a job and began working, but I only got enough money to buy a little food, not enough to get my son.

“Janine, my son is now six years old and I know for sure that this old woman is not taking good care of him and she is destroying him.  She takes him to Shebeens (illicit bar or club where excisable alcoholic beverages were sold without a licence) and I know that she now has him drinking illegally brewed alcohol. Janine, I must get better and I must get out of this hospital so that I can go back and get my son away from this woman before she totally destroyed.” 

Nomsa has Multipledrug-Resistant Tuberculosis and has been in the hospital since early December 2012.  I am currently reading an excellent book called “Mountains Beyond Mountains” where Dr. Paul Farmer explains, “A person with active TB of the lungs harbors of millions of bacteria, enough to ensure that a small number will be mutants impervious to anti-TB drugs.  In a patient who gets only one antibiotic or inadequate doses of several, or who takes the medicines erratically or for too short a time, the drug-susceptible bacilli may die off while the drug-resistant mutants flourish.  The patient becomes a site of rapid bacterial evolution, with drugs supplying the selective pressure. In the gravest cases, patients end up infected with bacilli that cant’ be killed by the two most powerful drugs.  Medical science reserves a special name for tuberculosis of that sort – Multidrug-Resistant TB, MDR by abbreviation.  It is a scary disease, and a serious problem wherever it appears, but worst, of course, in the places with the fewest resources to deal with it.”

All that being said, I will tell you today that Nomsa is getting healed in front of my very eyes.  During my Wednesday visit we sat out under a tree in the shade for almost an hour and we laughed and we cried as she shared her life story with Chloe and me.  She is putting on weight, she is able to walk down the stairs without assistance and she walked 50 feet to the tree without resting.  This young woman makes me laugh and I love spending time with her.  One minute she is so determined, and then the next minute so very sad, but I know that God is at work in her heart and in her life as He is at work in mine.

I stand in faith with Nomsa that she will be healed and leave the hospital long before the expected 8-12 months (which would be August – December 2013).  We started talking about where she would go and what she would do and while she didn’t have many ideas for her future, she now is starting to dream of a life and a future filled with love, joy, happiness, peace and purpose.  I bring her books, magazines and newspapers to read to keep her mind sharp and focused, and while she does read them, she always tells me that she prefers reading her bible.  Each week she asks me very politely if I could bring a bible for this patient or a bible for that patient and I laugh. Of course I will bring them, they are in storage ready to be shared.  Last week when she handed the bibles out to the patients they all cheered and then started reading. It was late in the afternoon and at midnight they got in trouble from the night nurses for still having their lights on so they could read.  LOL.  She brings me joy and I am so thankful for her life.


Wednesday, March 6, 2013

Chapter 2: Once upon a time Nomsa was a little girl

“I am from a big family.  My father had five wives and my mother was the youngest wife and because of that the other wives hated her.  Even though my father had five wives he was still was “hot as chillies” and was cheating on his wives with other women (even married women).  Each of his wives had 8-9 children and I have many brothers and sisters outside of the marriage family unit.  I know about 45 of my brothers and sisters, but I know that I have many more.”

When I asked Nomsa to write about her personal background, that was how her story began. It is not an unfamiliar tale and is common to many people here in Swaziland.  Swaziland is a polygamist society.  I am told by my Swazi friends, who remember the “good old days”, that the polygamist family structure seemed to work back then.  Women knew that there would be more than one wife and they learned to work together in the fields, cooking, cleaning and raising their collective children.  Each child would call each wife “mom” and all of the children belonged to all of the wives.  But in the past few generations things started to change and the moral fiber of the country started to decay.  Husbands left the homesteads to find work (sometimes to another country) and they started to be unfaithful to their wives, often bringing HIV/AIDS in to the homestead as a result.

Nomsa continued, “My mother gave birth to eight children.  Two boys died before I was born.  I have three brothers and two sisters that I know very well. Unfortunately my older sister died while she was trying to do an abortion. She was 18-years old and was doing 9th grade.  It was a really said moment for the family.  Fingers pointed at each other. You know, family issues.”

Nomsa lived with her mother and siblings in a typical Swazi Homestead where each wife had their own hut made of mud walls and grass thatch roof.  They shared a common kitchen and her father had his own home and would visit his wives as he chose.  There was no way for her father to properly care for all of his wives and children so some of the wives were forced to go and find manual labor. 

Nomsa’s mother went and got a job in the sugarcane fields and life changed for them all.  By working at in those fields Nomsa’s mother was able to move her children to the farm. They may have lived in one small room all together, but the walls were made of concrete block, there was electricity and a door that locked!  They shared running water, outdoor pit latrine and a cooking area with the other areas, but the children were clean and fed and went to a local school that was very good. Nomsa loved her mother and was so happy to be away from the other wives and her many siblings as they were very abusive to Nomsa and her family.

In the year 2000, not long after they moved to their new home, tragedy struck.  Nomsa’s mother was run over by a tractor in the sugarcane field and died.  Nomsa’s world came crashing down around her.  She was 12-years old and was forced to move back to the family Homestead with her brothers and sisters and hope that someone would help them with food. She told me, “I didn’t know how to do anything!  I didn’t know how to wash my clothes, how to grow food, how to cook food, nothing! It was terrible and I was terrified”.

No one helped them, and really the other wives had very little to give that could help. There were already too many hungry mouths to feed so the family was split up and it was “every child for themselves”.  Nomsa’s brothers and sisters headed off to find their own way and Nomsa moved in with an “Auntie” (defined as someone you are related to in some way – often distant).  The Auntie was very sick and died only three months later.  This happened again when she moved to the next home – the Auntie died.  The HIV/AIDS pandemic had hits its peak and it was wiping out Nomsa’s family in front of her own eyes.

Nomsa finally was offered space on the floor of a neighbor who had three sons (age 30, 24, 18) and four daughters all sleeping in a one room hut. 

Here is how she described her life at that time, “That was hell.  Every time when I was just left alone in the house when they have gone to fetch water the boys use to sneak in and ask me to sleep with them or try to force themselves on me until I would shout.  I was young and scared that they would say that I was telling lies.  I have kept this to myself, and Janine you are the first person to know this after 11 years of keeping it secret.  Hey, one day I was to fetch the water one day for the household when the 24-year old boy followed me as if he was also going to fetch water.  The water was a at a dam where there was tall bushes and while I reached for water he jumped on me and help me tight forcing his body to me.  I tried to shout but no one came to my rescue.  No one would have cared anyway. I was a young beautiful stranger living in their home.  It was painful. I saw blood on my legs and sat crying while he left me in my pain.  It was late and I was scared to go back to that place because they would scold me and the boy would deny it and bring me more pain so I decided to to and sleep at another homestead nearby.  Hey, you don’t want to know what troubles I brought on myself. The old lady from the first homestead came after me with a big stick.  She pulled back the blanket where I was sleeping and beat me very badly, then made me go back to her house again, back to hell.  I stayed there until my older brothers showed up some time later and took me away with him.  That is another painful memory that I will have to share at another time”.

This young woman is remarkable. She is a testament to the strength of the human spirit.  I love sitting with her each week and visiting, but I am often thankful for the TB mask that I wear to cover my face.  While it is hot and very hard to breathe in  it hides the pain my face muscles would surely give away as I listen to her share her life with me. 

Nomsa’s health is getting better and I am so thankful for that.  Patients on this heavy medication require a lot of protein, and while the hospital does their best they can’t possibly provide all that is needed.  So when I visit I use funds in my “Compassion Purse” (money given to me by supporters who want me to have cash available to buy food or other emergency items as necessary without being worried about not having the money) to buy her food – meat mostly.  There is no refrigerator so she gets sausage (she loves pork), fish and beef to eat over a 24 hour period.  Then I bring some combination of cereal (oatmeal/Cornflakes/Wheatabix) with dried milk powder that she can make in to mild.  The hospital doesn’t provide soap or lotion so those are items that I take her and she always shares with those around her.

Leah and Rachel - Nomsa's second set of twins - they live at the El Roi Baby Home.
Each time I visit Nomsa I go around and visit her friends in the ward. Phindile was Nomsa’s closest friend and she was the only woman of the original 10 women who was still alive (not including Nomsa and the 13-year old girl).  Phindile shared her cell phone with Nomsa and Nomsa shared her lotion with Phindile.  They would sit and read the bible together (Nomsa reading to Phindile as she couldn’t sit up any more).  They became good friends even in the face of death. 

Last week I visited Nomsa on her 25th birthday. She had never had a birthday cake before so I took a slab of chocolate and a slab of vanilla cake so she could enjoy and share with other patients.  I went over to Phindile’s bed, but she did not look good at all. She was emaciated and you could see all of her bones on her naked body. As she lay on her back her breasts slid down on both sides of her chest almost resting on the mattress.  She couldn't talk anymore and they had put her on oxygen.  Her mother was there, rubbing her arm and trying to provide her daughter with comfort, but there was little that could be done.  Unfortunately I have seen too many people whose bodies have been destroyed by HIV/AIDS and you get to a place where you know they will not return to health.  She was happy to see me, but her eyes darted around the room as she cried out for help. Her legs had swollen up many times their original size and her belly was started to bulge.  That night at 12:04 AM Phindile cried out, “Jesus take me!” and she was gone. 

Nomsa was with Phindile as bloody liquid from her stomach started to come out of her mouth and nostrils.  There were eight new patients in the ward and everyone else slept through the night.  Nomsa was alone and scared.

Please join me in praying for all of the Nomsa’s in Swaziland who are scared, in pain and have no options.  May we see them one by one and as our Pastor Andy Stanley says, “Do for one what you wish you could do for everyone”.