“I want to dance again”: Returning independence stolen by disease
Mariam Zakari was answering our questions about what trachoma felt like, when we noticed her eyes and nose start to stream. Her animated chatter stopped, her smile shut down and she stepped back to feel her way along the wall with her hands. We could hear her painful retching from behind her home.
The 75-year-old was suffering from an advanced form of the eye disease called trachomatous trichiasis, where eyelashes touch the eyeball. She couldn’t speak, she couldn’t see and the pain was overwhelming her. She was showing us what trachoma felt like. It was an agony which stopped her being able to function or get on with her life.
I met Mariam in July when, along with a team from BBC Africa, I witnessed the first round of trachoma surgeries in Benin, West Africa — delivered by the Ministry of Health and Sightsavers under the new Accelerate trachoma elimination programme. The surgeries were broadcast in the BBC flagship health show ‘La Vie’ on several West African TV channels.
Mariam was one of the patients we visited at home before the surgeries to hear how the disease affected their lives. We heard again and again how trachoma robs people of their independence — so their families and communities need to rally round them with support.
It was a key time in the farming year– the season of collecting shea nuts. We passed many women pounding them with a big stick, softening them to make butter to eat and sell. The trachoma patients told us they couldn’t join them. Firstly, because pain made it impossible and secondly, as Bona Woure Dafiya told us, no-one wants to buy food from someone with streaming eyes.
Bona, 50, and her daughter-in-law, Mannou, live next door to each other in Gbari village in the Nikki region. They featured in the BBC show and their touching tale showed the lengths families go to support those struggling with this devastating disease.
Bona said she would shout across to Mannou the moment her eyelashes touched her eyeball, and ask her to come running, and pluck the offending eyelashes out. She explained: “As soon as the eyelashes touch, the watering happens. Water comes from my eye and nostrils, and I cannot see. At that moment, I can’t do anything.”
Mannou, 22, had been running to save the day since she was a teenager, when she had the idea of using ash from the fire to help her. She said ash is used to clean fish by removing ‘stickiness’, and realised it could do similar for eyelashes. It helped separate lashes and increase grip, making it easier to ‘seize’ and pluck them out.
She said: “When my mother (in-law)’s eyes start watering I can feel the pain myself, in my body. I will be so happy when she can see again.”
Although there was an overwhelming sense of community in the villages we visited, not everyone had a Mannou. Some were more isolated, unable to get needed help. Others received it, but it was not enough.
Orou Baye Adama, 75, once a leading traditional dancer in the area, also featured in the BBC show. She had trachoma for 40 years and it was advanced. Despite support from loyal sons, she could not live the life she yearned for.
She told us: “When the pain starts I do not know what to do or how to behave as the headache is there. It is so painful I do not know where to put my head. Everything stops. I can’t see.”
The glare of the sun hurt her eyes, as did bending down to look for nuts — so she was forced to stay inside and lie down for hours. She told us how she longed for independence, to be able to walk in the sun, and dance again.
Which made the day of back-to-back surgeries in the rural health centre nearby so life changing. There was a buzz in the air as nine patients and their carers waited to be put into ‘scrubs’, given a pre-surgery check, and little white stickers around the eyes needing attention. Seven of those taken into the small operating room were women (commonly more affected by the disease *), one was the local king of the Biro district, and most were operated in both eyes.
Some seemed fearless, just eager to have surgery. Others were nervous from the mistaken fear that eyeballs might be removed, that they could be left without any vision, that they would need more recuperation than they had time for in a busy farming season.
But those who were nervous showed it by stoic silence, as the health team bustled, making everything sterile, getting everything ready. Each patient was taken in, one by one, then 30 minutes or so later helped out, with bandages over transformed eyes.
The next day was bandage removal day, after a night gave time to heal. Eyes looked fragile, but Bona assured us there was no pain, just anticipation at independence being returned. She said: “I am very happy about the surgeries. I am going to fry bean cakes for people to buy. To show how I can see forever. I will also have a feast with all my friends and family. It will be nice to be social again.”
Orou did a dance for the camera: “You can see I am smiling, even laughing. What happened was really easy and I am really happy.
“I am ready to dance. Now that everything is over even if the sun is brilliant I will be good to go out. I can now do my butter to make and sell and have money and not be waiting for the sons and the grandsons to give me money all the time. It is better. I am glad that from today I can start to do these things.”
by Katya Mira, Senior PR & Media Officer, Sightsavers
- Trachoma infections spread via hands, clothes or bedding; because of this, women are up to four times more likely than men to be blinded by trachoma.
The Accelerate programme is supported by: Children’s Investment Fund Foundation (CIFF), The ELMA Foundation UK, UK aid, Virgin Unite and The Bill & Melinda Gates Foundation.
BBC Africa’s La Vie can be viewed here: https://www.sightsavers.org/news/2019/09/bbc-africa-films-first-trachoma-operations-in-benin/
