She made the decision, knowing what the consequences were.
I am a nurse practitioner. For two years, I worked for an NGO in Southern Africa. With referrals from hospitals, clinics, private doctors, lay care workers [carers], and other individuals, we visited people in their homes when they were ill. Every day was a challenge, because I never knew what I would have to deal with. The goal of our team was to provide palliative, holistic care to everyone we visited, which meant we tried to relieve suffering, whether psychosocial, environmental, physical, or spiritual.
Many of the people I visited did not have the wherewithal to write their own stories, so I will be their voice. These people and their families deeply touched me and remain etched in my mind. As a candle-lit Turkish lantern illuminated an uncertain pathway for Florence Nightingale, I offer these narratives to help light the way for others who have also chosen the noble profession of nursing.
I am reminded each day to be thankful for the privileged life I have had. Yes, we all have obstacles—turbulent waters we must swim through. Some have it harder than others and go unheard. My work tends to flash these facts directly into my face—sometimes gently, but other times, like a blinding bolt of lightning.
An enormous, old tree stands in front of the house where I first met her. If you listen carefully, it whispers of secrets that the wind blows away. Its leaves tremble with knowledge of the young woman who has stood beneath its boughs. The tree has heard her words of loneliness and anguish and, sometimes, when I close my eyes, I see its leafy, lush, comforting branches wrap around her body, embracing her, making her feel safe and calm, and giving her a sense of belonging.
Whispers of a different kind have slapped her ears since she was tiny. Stigma is a cruel thing. Thandi has walked with sharp stones in her shoes ever since she was born infected with human immunodeficiency virus (HIV). She is now 19 years old.
The carer, Jackie, has known Thandi for years. Jackie called me and said she needed me to come and see Thandi, as she was worried about her. I trust the instinct and knowledge of the carers; they truly know the people in their communities.
When I arrived, I noticed the tall tree first and then the walls of the house. Its paint was worn and peeling off in many places. Rust was greedily eating into the handle of the front door. An old lady came out to greet us and took us inside. The house had one room and, at the back of it, an old curtain was held up by a piece of wire. The curtain fluttered, and I saw Thandi for the first time.
Vulnerability is a word that comes to mind. Big eyes, a beautiful smile, a teenager hidden behind a mask of red, angry pustules.
She is very ill. She has been on treatment since birth and has to take it daily to keep the viral cells from multiplying, but she has stopped taking the medication—thrice! And the regimen is more toxic each time she restarts treatment. Why has she stopped taking this lifesaving medicine?
Her body is shivering, and she has a hacking cough. I ask the woman looking after her to open the window and door, and we put on N50 masks, as she may have tuberculosis again. Thandi’s face remains passive, and I wonder if our masked faces add to her feelings of discomfort and isolation.
Taking her history, I am gripped with empathy. Her mother, father, and siblings have all been taken by this virus, and the illness has also robbed her of friends. The old lady who met me and comes to check on her during the day is a longtime family friend, but Thandi is alone at night. She wants to go to parties, have a boyfriend, have fun, and fit in. “Will this ever happen?” she asks me. “Can we stop the pain?” She is hurting all over. Her legs are swollen, the rash is all over her body, and she has a fever.
On auscultation, her chest sounds like a boiling kettle. She is short of breath, has no appetite and terrible diarrhea, and is dehydrated. She doesn’t want to go to hospital and start treatment again because she’s so tired. Jackie holds her hand, and I try to compose myself as I think of my own children. I walk to the door and look out on the road. Yes, life is normal outside this house. People walk by chattering, children play a game, a car passes by.
I explain to Thandi that she is very ill and needs to be taken to hospital. She needs to be put on a drip, as she is dehydrated, and she needs to be tested for TB. Finally, she reluctantly agrees, and we help her get dressed and put sandals on.
As we drive slowly to the clinic, Jackie and I still have our masks on. We put one on Thandi, too, and open all the windows. The physician at the clinic examines her and sends her immediately to the district hospital. I feel an emptiness, a sadness, and yes, anger that she stopped treatment. Perhaps she will recover quickly now and carry on with the prescribed therapy?
Later, upon phoning the hospital and speaking to the doctor, I find she has been started on TB treatment, is on intravenous therapy, and will be sent to the respite unit when she is discharged. The highly active antiretroviral therapy (HAART) will recommence after two weeks.
After discharge from respite care, Thandi moves to another area and immune reconstitution inflammatory syndrome (IRIS) takes over. Everybody rallies around and tries to help her. Direct observation of therapy (DOTs) are done daily to ensure that she drinks her medication. Thandi has a different plan.
After some time, it was discovered she wasn’t swallowing the medication, but putting it under her bed when no one was watching. She made the decision, knowing what the consequences were. Everyone—our team, social workers, physicians, and counselors—had explained it to her, trying to motivate her, but she was paddling her own canoe in the direction she wanted to go. I take hesitant solace in knowing we did all we could.
The large, old tree that stands in front of her house shivers in the wind, its leaves swaying violently. Mother Nature howls, and a lion somewhere in the wild raises its face to the moon and roars.
Cindy Hatchett, MSc, RN, RM, was born in Liverpool, England, and has also lived in Australia, Borneo, and South Africa. She has been a member of the Honor Society of Nursing, Sigma Theta Tau International since 2007.