HUSM: A Debt to be Paid: “My Malaysia” Photo Series (9)

“Pain is an unexpected presence that decides for us.”  (Franscisco Mele)

Nur Huda. HUSM, Kota Bharu. Kelantan, 16 June 2019

I had already decided the theme of this penultimate story, I wanted to talk about the markets, which are among the places I love most on a human and photographic level, I also had already chosen the photographs.

But I felt I had a debt. For several reasons. A debt to a person who is no longer there.

To do this I have to go back to Kelantan.

This story is linked to my work in Malaysia, or rather the making of the photographic book for the 50 years of the USM University and, having to document all their activities, I was sent to Kota Bharu, twice, where there is the hospital of university property: HUSM.

I was there in 2018 just arrived in Malaysia and then in 2019.

 

I usually don't enter hospitals with pleasure, but who does? Not only for the place itself, but because I spent many years in it, especially as a child.

As soon as I was born I had to undergo a heart operation by a “souffle”, a hole in the heart, which made my skin yellow, mistaken by all the doctors for jaundice; but under the insistence of my mother, who felt that it was something else, a doctor made other more detailed analyzes to find out that my mother was right: I was pulled by the hair to life.

Every time I asked my mother how she understood that it was something more serious, she replied: “Only a mother knows.”

Since that time, I have never stopped trying to investigate this magical and mysterious bond between mother and child that no man will ever understand.

Then, at the age of ten, there was another heart operation, for the restriction of the aorta, and appendicitis. In short, my childhood was an entering and leaving of hospitals, including surgical interventions, check-ups, blood tests.

And my body added scars to scars.

 

The impossibility of having a social and physical life like all other children (I played football as a goalkeeper because I could not run), I fell back on studying, reading and drawing. I read and wrote a lot.

The end of my university career, at the faculty of  Letters and Philosophy, was also the symbolic end of that first part of my life: my degree thesis bore the title “The philosophical-psychological reflection on the body”, in 2000, and I dedicated to my parents, for all that they had suffered for me.

In this thesis I put all my passions and years of reading into it, from psychology to philosophy. Mainly, it was my personal way of investigating what I had experienced in the hospital years; I wanted to name the pain.

Because one of the certainties on which psychology and psychoanalysis is based is precisely that for which the first step to combat our fears and neuroses is to give it a name. Giving a name means knowing what is inside us and therefore starting to fight it; what has no name remains in the shadows and defeats us – not surprisingly the term madness derives from the Latin “follis” which means bellows, wineskins, empty container and refers to the idea of a head full of air (precisely with nothing inside that can be named).

So, I wrote about psychosomatic illnesses, about how the body becomes our form of expression and language of pain when our mind, for some reason, is blocked or unable to do so. There are many books on this topic, and it is studied from different points of view: medical, anthropological, psychological, philosophical and aesthetic.

In fact, more than a degree thesis, it was a kind of private diary.

 

The fulcrum of everything was and remains our body, with which we interact with the world, with which we dialogue and express our being.

And the disease is the attack on the body, and represents a challenge to the power of medicine and rationality, because it declares their failure with pain and death.

“In the world of medicine, the body is built from scratch as a ‘medical body’ which is something else from the bodies with which we interact every day.” (B. J. Good)

Medicine, in modern times, has partially replaced the power of religion and its ability to relieve pain. The philosopher Gadamer quotes, in this regard, the myth of Prometheus, for which its greatness is not so much in the gift of fire to humanity rather in having taken away from man the knowledge of the hour of death: “The removal of death is the will to live” (H.G. Gadamer).

This has always been the challenge of disease to humanity. Through pain our presence withdraws, defends and closes in on itself.

The patient “dwells in himself”, away from the world, attentive to the reasons for his own sore body, moreover, the body becomes, for the suffering person, the world, but a foreign world.

 

With my degree thesis I put a point to all my past, abandoning writing and scars. What in classical Greek religion is called catharsis, or the magical ritual of purification of the soul and body, and which psychoanalysis will resume later to define the process of liberation from traumatizing or conflicting experiences of the past.

I started a completely different job and then photography came.

But fate is not overlooked. I never imagined that those pages were not an account of my past but a prelude to my future, because in 2005 I fell ill with a malignant and aggressive tumor. Just because my mind was intent on suffering from sentimental issues without admitting it to myself. The body did it for me, almost killing me. But I stuck my nails and teeth to the life; it is not easy to eliminate me.

But the pain I felt was unimaginable, and in any case the pain I feel when I was born or at twelve cannot be remembered. At thirty yes.

For this reason, when in 2012 I was offered by the Oncological Pediatric ward of the Umberto I hospital in Rome to make a photographic reportage on the lives of families living in wards with children with cancer, I accepted.

I had to wash my soul.

But it was a mistake. It was one thing to talk to the parents and give them moral support or make the intubated children laugh, it was another thing to arrive one morning and know that your favorite child, the eight-year-old little Bethanie from Congo, had died the night before, without even been able to say “good-bye”.

I stopped going, and I never did anything about those photos. They're mine.

Me and Bethanie (R.I.P.). Rome, 18 November 2012

The first time I arrived at the hospital in Kelantan, it took me quite a while to visit it all, it's huge. On the top floors of a block there is the pediatric section and, on the top floor, the one closest to the sky, there is Pediatric Oncology. In these two floors I met very strong mothers, as always happens in these places, as was my mother.

HUSM, Kota Bharu. Kelantan, 7 August 2018

 

I will never stop thanking the fate of introducing me to Rashidah, a young mother from Kuala Besut, Terengganu, who has been assisting her son Muhammad Zulhilmi bin Zamri for eighteen years suffering from cerebral palsy, sleeping and living with him in the hospital room, with her husband who brings her the change of clothes every now and then, but always with a smile on her lips. The first time she told me her story she told me that he was her only son and that he was a gift. When I returned the last time she was still there, and I gave her a copy of the book in which there are also photographs of her and her son, and we still often hear each other.

Rashidah with her son. HUSM, Kota Bharu. Kelantan, 5 August 2018

Me with Aziane and Rashidah. HUSM, Kota Bharu. Kelantan, 24 June 2019

I met the little “Tarzan” and his mother Haslina, wild and very nice, Emy with the sweet Nur who loves drawing and unicorns, Sue, Nur Ayati, Ain...

 Tarzan, Haslina and me. HUSM, Kota Bharu. Kelantan, June 2019

Emy and Nur, with another mother and her son on a visit. HUSM, Kota Bharu. Kelantan, 18 June 2019

 

Me, Nur, Emy with another mother and her son. Kelantan, 21 June 2019

But I also photographed little Muhammad Aisy Iman, who died at 5 years and 7 months, on 2 August 2019, in the ward, after cycles of Ice chemotherapy that burns the skin and makes it black.

Muhammad Aisy Iman (R.I.P.). Kelantan, 19 June 2019

 

But this story is dedicated to someone else, to a photograph that is not there, or rather, she is there but you cannot see her face, only her eyes: Nur Huda, a 15-year-old girl from Kuala Besut with a beautiful face.

She was in bed next to Tarzan, and while I was joking with him, I looked at her. Every day I've been in that big room she never smiled. She was with her mother, always with the same expression lost in the void; whatever I did my eyes always looked for her, they were magnetized by her, I also caressed her face, I tried to talk to her but nothing, at the limit she looked at me for a moment and that's it, and she looked back in front of her. A heartbreak. The tumor was in the brain.

I was there for a week, every day I went in and looked for her immediately, with the terror and trauma of Bethanie. Every morning I breathed a sigh of relief. She was there.

Then I went back to Penang, I completed the book, choosing the photos and working on the editing.

You can't believe what I'm about to tell now, I don't care. I also confessed it to some people close to me, including Aziane, my dear friend and head of nurses in the pediatric ward, to whom I owe a lot, especially for her help during these days and in writing the caption book.

When I was in Penang I could not forget Nur Huda's gaze, her silent, composed suffering. And she came to me.

I felt her presence in my room; one day, while I was lying on the bed I felt my legs and feet touched, I knew it was her, even in my dreams she came. I was angry with her and afraid.

“Leave me alone! Go away!” I was screaming at her.

Then I talked to my publisher at USM, and with the one in Indonesia, who know me very well, and with Aziane. I started to understand that she didn't want to scare me, she didn't want anything. She just wanted me to remember her. Because after all I had been like her.

After a few days Tarzan's mother Haslina sent me a message: Nur Huda was gone on 27 July 2019.

I also asked Aziane for confirmation, it was true.

In agreement with the publisher Puan Awatif, I have dedicated the final section of our book to her, the one relating to the Department of Pediatric Oncology.

And now I dedicate this story to her.

Kelas Sekolah Rendah HUSM (Lesson in the Hospital School for sick children).
 HUSM, Kota Bharu. Kelantan, 19 June 2019

 

The problem of the disease is how to tell it, and I have studied for a long time that it's precisely the language that helps to relieve pain, the disease must be “narrated”. Yet, pain itself is impossible to tell, it is unspeakable: it destroys our world and our language.

There will never be a writer in the world who can describe pain, as well as death, it is not possible to tell it.

We can only experience pain to know it; death, however, cannot be narrated because we are only given knowledge of life.

Eyes lost in the void of Nur Huda, her lips open but silent, they were the expression of the suffering that has no words, of the body that has withdrawn from the world, it's alone with itself waiting for everything to end, because that pain has only one end, and she knew it . At 15 years old, she knew it; her eyes had an intensity difficult to sustain, which few mature women have, because they have never tried what it means to suffer in that way.

She reminded me of two things: the first is that I survived, also to her, I am damned still here while she is gone, and for this I am indebted to her. Second, it reminded me that you can pretend to ignore the pain you are experiencing, you can hide the scars with clothing so that no one sees them: but they are there, pain and scars.

HUSM, Kota Bharu. Kelantan, June 2019

And this is the teaching that applies to each of us, to live in her place, for all those who have gone away too soon like her. Every holy day, every morning that you open your eyes, live as best as you can: read, walk, look, breathe, smile, love.

Don't take anything for granted, every word you say or a finger you move, a blink of an eye... Whatever banality at this moment, for Nur Huda, in her last days, has been a continuous torment, a battle that she has lost.

Then you do as you want; life belongs to you.

I paid my debt, and if Nur Huda wants to return to visit me in my room I will be there, I am no longer afraid.

She is always with me, between my scars, next to Bethanie.

“Diseases are the shortest way for man to return to himself.” (Thomas Bernhard)

 

My biggest tribute and a heartfelt thanks to the fantastic nurses who work with dedication and love, every day. 
Thanks also from Nur Huda... HUSM, Kota Bharu. Kelantan, 24 June 2019

 

Luigi M. Lombardi Satriani, Mariela Boggio, Francisco mele: “Il volto dell'altro. Aids e immaginario” (Meltemi, 1995)
Byron J. Good: “Medicine, Rationality, and Experience: An Anthropological Perspective” (Cambridge University Press, 1994)
“Perché il corpo. Utopia, sofferenza, desiderio” a cura di Mariella Pandolfi (Meltemi, 1996)
Umberto Galimberti: “Il corpo” (Feltrinelli, 1997)
Giancarlo Trombini Franco Baldoni: “Psicosomatica” (Il Mulino, 1999)
Joyce McDougall: “Theaters of the Body” (Free Association Books, 1989)
Hans-Georg Gadamer: “Dove si nasconde la salute” (Raffaello Cortina Editore, 1994)
Thomas Bernhard: “Perturbamento” (Adelphi, 1999)

Suggested song: Sigur Ros “Svefn-g-englar”

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