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.

I am angry

On Monday, an infant dies from tetanus.

On Tuesday, a pregnant woman passes away and her twenty-two weeks old foetus too. For unknown reasons.

On Wednesday, a five year old boy dies while being transported from the emergency department to the ward.

On Thursday morning, I hear a woman wailing for her husband, who breathes his last, before being seen by a doctor.

And on Friday afternoon I confirm the death of a twenty-four year old lad, speechlessly, after he suffered fevers for a number of days.

No, this is not going to be another pitiful story from Africa. I have long passed the stations of grief and pity. This is an angry letter.

I am angry because this is a random choice out of many needless deaths, all related to poverty. I am angry because this isn’t any news, but of old. A j’accuse needs a momentum, but my Dreyfus will never come. The injustice of global inequity is an everyday actuality.

I am angry because a befriended teacher receives a salary of twenty-seven thousand kwacha a month, which converts to roughly one pound per day. Just enough to survive if you cultivate your own maize and crops, as long as you don’t face any misfortune. How can he dedicate himself sufficiently to his job and safeguard the perspectives of his pupils?

People living in rural areas are particularly vulnerable. It’s hard to find money for transport to the hospital and the fields can’t do without their peasants. The disease may be in an irreversible state once a patient seeks medical care. By then it’s too late, in medical terms, but for many people it would be too early to seek care as long as there’s chance of improvement without intervention.

I am angry because the misery is caused by basic problems that would have been solved ages ago if there would have been the right will. Problems with education, infrastructure, a safe environment and basic health care. We hide the reality of countries like Malawi somewhere in the back of our mind. Where are the boundaries of our society? How big is our community, and how far do the responsibilities of a wealthy country reach?

I am angry because an average African peasant will never be invited to our major talk shows, and because opinion makers rather scuffle over trivial issues than over what may be the greatest injustice of our era. When a group of European doctors recently visited our hospital, I could read from their shocked faces that never before they had fully understood what world they were living in. By writing this letter my angriness subsides, and that’s just fine, because a good doctor is hard on the inside and soft on the outside. So good bye angriness, but will I ever comprehend?

(een Nederlandse versie van dit stuk verscheen op Joop.nl)

Sustainable happiness

I direct my penlight at Catherine’s eyes. There isn’t any reaction detectable in the black pinheads. I open the upper button on her shirt carefully and lay my stethoscope on her shining skin. The soft murmur of her breath reminds me of the sea touching the shore, but it repeats itself faster, much faster, and has a higher pitch. The muscle reflexes are absent in her arms and legs. Underneath her left breast, in which mammary glands are developing, there’s her heart pounding more than a hundred times a minute.

A co-worker applies gel to the skin of her lower abdomen and finds out that the heart of the little one is happily beating. There are no foetal abnormalities on the ultrasound, the findings are consistent with an uncomplicated pregnancy of around twenty-two weeks.

An uncomplicated pregnancy, except for the facts that Catherine has high fever and that she’s unconscious. She’s in coma and we don’t know why. We have no further diagnostic investigations to offer in our hospital, and referral to the university hospital has been refused. This woman of merely twenty years old will die soon, and her unborn child too. All hopes are faded, no one believes in a happy ending.

This is the story of a woman with HIV and epilepsy, who was found laying unconsciously out in the field. But more specifically, this is the story of a woman in Malawi, one of the poorest countries in the world. ‘Diagnostic interventions’ is an euphemism for a few standard laboratory tests, including one for malaria, and the ultrasound that was already mentioned. No scan of the brain, not even a chest X-ray nor a blood culture.

Many things have changed since I visited Malawi for the first time ten years ago, back then as a medical student. The number of people dying from malaria has dramatically declined, the country seems to gain control over the HIV-epidemic and also child mortality has declined. But there are still many people for whom nothing has changed, people who don’t have money to get to the hospital (where care is free of charge) or whose disease remains unclear or doesn’t respond to treatment. Far too many people die needlessly.

At night I see a pattern of green and red twisting lines and I hear voices. Faithless whispers on my right side that he can’t get no sleep, and to my left there’s a woman crying for help. Is this a dream, or are these hallucinations caused by the malaria prophylaxis? The pictures and voices fade like a candle in the wind that smashes heavy rains to the aluminium sheets on the roof. I feel empty. I am the middle of the night, a damp night caught in a mosquito net.

What is my role here, in this particular hospital, in this country? Do I do the right thing? Is the work I do effective and sustainable? And do I bear responsibility for the poverty that I see everywhere around me? Any westerner coming to Africa will encounter those questions. If not asking them yourself, others will pose them to you. But are these more important than the question whether you are happy?

I pull the sheets away from my body and stare at the point where the net is connected to the roof, centrally above the bed. This is my polar star on the southern hemisphere. Suddenly I realise that the self-critical questions arise from the perception that we belong to the country where we are born. Being home means that you don’t need to justify your presence. But does that also apply to me? Anywhere in the world it’s easier for me to feel at home than in the country where I was born.

Of course it won’t do any harm to ask yourself whether you do the right thing. But if I may speak for myself: I cannot be sustainably happy without taking other people’s wellbeing into consideration. Taking care of each other is an essential part of taking care of yourself. I stare to the zenith of my mosquito net and at the same time I wander in my mind through the village, where life flourishes in all it’s sounds and colours, and then I wander through the western streets on Twitter, where despite of their wealth, people always find a reason to complain. Maybe an early death is still preferable to having never really lived, I think, and with that guilty thought I fall asleep.

The stars we see

The plane trees on both sides of the street bow towards each other high above me, as if to shelter us beneath. They are still green, although October is coming to its end. A bit further, a whitebeam’s autumn leaves flame in the morning sun. A beggar sits on a blanket underneath a streetlight, her face is expressionless as the face of a Romanian woman can be. I don’t carry cash with me and I mumble good morning, but the words are lost in the drum rolls of an awakening city. She sits there day in day out, from early morning to evening, when I leave for home.

What enables us to look the other way, I wonder during a lecture on malaria. Four hundred and fifty thousand deaths a year, mainly children, and completely unnecessarily. The disease is preventable and very well treatable. Four hundred and fifty thousand, that’s more than a thousand children every day.

How did we learn to look the other way, I wonder again in the evening, when I listen to Verónica’s voice by a campfire. Her words are like shards, sharpened by her Mexican accent. While the flames are licking the branches, she talks about a man somewhere in Africa who didn’t let his sons go when the army came to recruit them. He was shot dead in front of his boys, and they were taken away. Murdering and robbing became the only way for them to survive. At the age of eighteen one of them was able to leave the army due to a gunshot wound. Supported by a charity he was able to go to school and years later he graduated as a medical doctor. Presently he works with Médicins sans Frontières, as a colleague of Verónica’s.

She speaks of a mission in South Sudan, where she’d seen more misery and injustice than she could believe. While she talks, her fingers touch my arm, as if seeking comfort. She’s not the same person she used to be. According to her friends, her views on the world and her place in it have changed radically. After the mission in South Sudan, she felt depressed for several months. And still she cannot freely enjoy life; it upsets her to see people dump bread into the bin, the careless life in London is unreal to her. Verónica may be traumatised, but she’s also determined to continue her work.

What remains of our humanity after we’ve seen children die of hunger or malaria, problems that should have been solved by now? Is it less painful for an African mother than it is for a European mother? Is their problem also ours?

It gets cold. The branches in the fire have turned to little glowing bricks, the flames have faded. Is it justified to look the other way, I wonder, is it justified to pretend that misery doesn’t exist? How can I walk by a homeless woman in the street? It’s so tempting to believe in progression that stands alone, to think that we have no influence on misery and injustice, and that it will all just simply sort itself out. How else can we spend a few pounds in the pub, aware that a child’s life somewhere in Africa may cost the same. But when you’re out there, there’s no way to deny it.

For most of the people the black reality doesn’t even exist, I tell Verónica. People look away, or they think that it happens in a different world, a parallel universe. Only a small minority feels connected to it, still fewer are willing to give up something in order to reduce the misery of others. How can we ever make a difference?

Look, says Verónica, and she points up into the October night, what is it you see?

I follow her finger and there is nothing but darkness.

But then I become aware of a star, glittering somewhere to the north. And there’s another one!

Almost all of it is dark matter, she whispers. All the stars together don’t even make up a single percent of it. But still… the stars are all we see.

Connemara

When I was 18, I worked in a coffee shop in Cork and later in a little restaurant in Salthill, Galway. On the days that I was free from work, I cycled around the country. I loved to see and hear the ocean rocking and rolling against the cliffs. Galway, Mayo, Donegal. It was a magical experience to be there. Stories started coming up, stories of all kinds. Once I saw a mermaid. Months later, when I came home to my family in the Netherlands, I told my little sister about that mermaid. She must have been 5, back then (not the mermaid, but my sister). I showed her pictures of a rock by the shore, with on the background the sun setting in the ocean. There was no mermaid on the picture, but when I closed my eyes, I could see her, and I could hear the songs by which she tried to lure me into her world.

While most memories fade over time, my mermaid has become vivid and real. Still, I can see the shape of her body, half human and half fish, and her whispered words. I am thirty-six now, twice the age of the young man exploring the borders of his world, and I’m finally back in the country of the stories. Connemara is the site of my next novel. The country and landscapes play a certain role in the book, like in my previous works: nature mirrors the inner self. The main character is very different from me, so I have to get to know him by exploring his landscapes.

Last week, Ireland was in a state of emergency due to Storm Emma, the first blizzard in 35 years. However, to me it felt she never really came up. Surely, we had some snow and strong winds, but the blizzard arrived only in the late evening in Clifden, the town where I stayed, and the little bit of snow on the roads melted quickly the next day. Nothing compared to what I am used to in Lapland.

Emma, that’s how they called the storm that never came up. Emma, like my second sister. We rarely meet, due to a thousand miles and more. Emma, like one of my fellow students, a decade ago. She played cello and once she wore a dress that uncovered her shoulders and the ivory skin of her back. She was wonderful, but I never fell in love with her. There are many more of them, Emmas, and they must have something in common with the storm that never came up. 

Clifden Bay

Ruska

In Finland, the colourful phase of autumn is called ruska. In one month time, all nearly all leaves change colour. In Rovaniemi, a town located on the polar circle in Finnish Lapland, the onset is in early September, when birches  rapidly turn yellow. Simultaneously, poplars burst out in burning red flames, and soon also the rowans, already carrying bunches of blood red berries, change into orange and red.

Those who have walked through the forests and watched out over the hills during the vividly coloured phase of full blown ruska, will forever be enchanted by Lapland.

Tapio is the mythic keeper of the forest.

Rosebay willowherb can be found throughout the boreal forests. Because of her abundance, her beauty can easily be overlooked. But then, during ruska, the street girl shows her beauty!

As suddenly as they have come, the colors fade away at the end of the month. Most birches are naked and deprived, other still carry some golden coins. But the sadness of this phase of the autumn has its own beauty. In the next picture, I tried to catch the mood of October.

Loneliness

After an early cup of coffee in the Neste Oil filling station, where we were nicely welcomed by nearly a dozen villagers, Eeva left me alone in a rented 32 square meter apartment in the empty middle of Posio and she took off for the twelve hours drive back to South Finland (my publisher once told me that writers often don’t have a driving licence, so, Eeva, here’s my excuse).

I went for a walk as the clouds played with the sun, letting its light through but only rarely showing a glimpse of its weakened body. Although there have been many days with full sun and nights with stars and northern lights, I will always remember Posio as a place where clouds sweep low over the lakes and marshes, as in an attempt to erase everything, or to cover life in eternity. More than once I got the impression that the more north clouds drift, the heavier they become, just like thoughts and dreams and all that.

Last week’s snow had disappeared during the night. The path towards Kirintövaara was now covered by putrefying grasses, burning red like Lemminkäinen’s beard, and the half-light intensified all the colours of the marshes. I breathed an indistinct smell of wetness, scents of an eternal nowhere.

As I strolled through the wilderness, I did not meet any people, I saw no more animals than a couple of ravens that flew over the emptiness and cried for time to pass by. I didn’t really search for it, but I found an intense loneliness today. I think that I had expected it, but not yet on my first day of the months that I will spend here on my own. I did not fear this loneliness, because it was, in a way, the reason to be here. For a writer, loneliness can be the wellspring of creativity.

Still snowless skiing route on Kotivaara

I climbed the old ski-jump of Kotivaara that looks out to the north. The wooden tower has not been used for many years. Its stairs are nearly rotten, and as I reached its platform, I felt the wooden construction slowly moving by the force of the wind. There I stood, watching out over the desolate land behind God’s back, where Ultima Thule starts.

Soon, the loneliness started to work on me. Thoughts appeared silently but they disappeared before I could grab them. All I had to do was to listen to the wind and focus on the dancing moves of the ski-jump. New ideas arose, some of them merely touched me, but others shook my shoulders and took my breath. Were I to have a pen that could instantly write down the stream of thoughts, a book or two would have been produced today.

I pondered on how many great ideas must have risen in billions of minds, and how many of those have stayed there, in the mind, dead as thoughts are dead as long as they remain just thoughts. For a moment I thought that I understood why these thoughts and ideas remained dead – out of fear – but a minute later I rejected the hypothesis. A new breeze blew and pulled the wooden ski-jump tower and then I thought of other things. To whom do people relate themselves?, I thought. City men find friends among the similar; writers’ friends are writers, doctors spend their time with doctors, runners with other runners and the truck driver parks his truck between other trucks. In a village, the doctor’s neighbour can be an old and cheerless widow and on the other side of the street lives a farmer. In a village, the social sphere of influence includes everyone; villagers relate themselves to all other villagers.

Many more thoughts came up, but I will not reveal them – not yet. Just like a brook, a thought needs time and place to magnify, before it is great enough to debouch into the sea of all these other thoughts, ideas and confessions.

I went down the rotten steps of the ski-jump, down the snowless skiing route where wood chips muted my footstep and I turned to the road that took me home. In the 32 square meters apartment I played Einaudi and I burned a candle and in the midst of it, the loneliness suddenly turned into a grey sadness. There I sat, with melancholic wordless music that I had brought up north. Even the poetry that I had brought with me (Ted Hughes’s The Hawk in the Rain, Shakespeare’s Macbeth, T.S. Eliot’s The Waste Land and a couple of Dutch poets) did not include anything that could cheer me, as I had chosen them thematically: the few things that I had brought with me up North were all to promote loneliness.

lompolo