She has to get better

She’s been here for some time. Hilda is twenty-five years old and she was admitted to the hospital with a strange neurological disorder. She had a fever, was confused, and couldn’t move properly. It turned out to be caused by a fungal brain infection, Cryptococcus neoformans, a complication of HIV. She is also infected with tuberculosis, and that’s why she’s in my tuberculosis department.

The fever has now gone, she can move her arms again, but Hilda doesn’t yet have strength in her legs. Only in her toes, yes, she can move them a little when trying hard. I am cautiously positive, the power in her limbs may return little by little – Pang’ono pang’ono – if she practices a lot. But probably she will always remain weak, her hearing may never fully improve, and her sight may remain limited.

Hilda’s husband has left her and her mother died years ago. It’s her aunt who takes care of her while Hilda is in the hospital, because patients depend on their loved ones for nursing – nurses are only involved in strictly medical care. And as long as Hilda isn’t able to take care of her two children at home, her grandmother, the great grandmother of her children, does.

Hilda’s aunt’s support is unconditional, and when I mention that, her aunt bursts into tears. ‘The rest of the family just have to help themselves for a while,’ she says. ‘Hilda has always been there for everyone. She was my support and refuge when my sister – her mother – died, and she always managed to find some money when we were in need. Hilda has to get better, that’s all that matters now.’

‘Tuberculosis is a disease of the poor,’ I explain to the students a little later. ‘Of course you and I can also get infected, but it’s against the odds. You will see that most people here were struggling to survive even before getting ill. The disease often has a catastrophic impact, not only on the patient himself, but also on his or her family.’ I warn my students that we may relate differently to the poorest people, our empathy might be at stake, simply because we cannot imagine their misfortune ever to happen to us. We sometimes unconsciously divide people into ‘them’ and ‘us’, and we should beware of doing so. It’s important to realize that we all feel the same pain and sadness, even though some of us are dressed in dirty duds.’

After interviewing four patients, we discuss what they told us. The students are upset. Themselves being from the city, the students now get to know a completely different side of their country, during the few weeks in the district hospital of Mangochi. In the Malawi countryside, people are fishermen or farmers, they depend on the bits that mother Nature provides them with. ‘We’ve learned about tuberculosis from books,’ says Hilary. ‘That was about the bacillus, about a weakened immune system and about a chronic cough. But this… Now I understand that it is much bigger. The impact of the disease, and how much the people around them suffer too.’

I nod. The stories that we heard today were all shocking. Omar, for example, was a breadwinner. His wife takes care of him during the stay in the hospital. The six children, between five and sixteen, are at home. With no one to take care of them. ‘At least, we believe that they’re at home,’ adds Omar’s wife. Now that the rainy season starts, the eldest will hopefully be planting maize, without knowing if his parents will return, and when. On the bed opposite of Omar is Rachid, a young men who’s married to two women. He would have to support two families, but presently he cannot even stand up because of the Kaposi sarcoma in his groins. And I was able to fill several buckets with the orange fluid that had accumulated around his lungs.

‘Such conversations with patients are essential,’ I tell the students. ‘Not only do we, doctors, learn how we can better align healthcare with patient needs, but we also learn a lot about ourselves and the world.’

I watch the students as they leave the building. Many tuberculosis patients will not make it, I ponder. They tend to seek care too late, only when they are standing with one foot in their grave, simply because they can’t afford to be sick. They die not because there are no effective medicines, but because prosperity is unfairly distributed. I don’t know how effective it is what I do out here. I do sometimes have my doubts about it. But if the medicines don’t work, when another patient succumbs to a high fever, I am still there to register it, to testify of an injustice for which the world is apparently not too small.

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