Thalassemia: Shadow of Death

Culture, Update & News

©KarzanKardoziI have seen many houses in my time, traveled many places, many cities, towns and villages since my childhood, and each time revisiting the places, I had noticed many changes in them, from tragic to that of joy, but one of the houses that had always kept a vivid memory in me, the changes in that  house, of the people in the house, has been so tragic, that just thinking of it make my heart heavy.

The house, or rather, the mud house that once were, is located in the upper northern part of the Shadala village, a 45 minute care ride from the city of Suliaimani now, but in the old days, it took half a day to reach it; the house with its mud roof, gray walls and big rooms looks upon the whole village as towering figure. The first time I visited the house was many years ago, I was a little kid of seven, I remember vividly playing Football on the roof of the house with other kids, every few minutes the ball would roll down into the ground, down into the village, across the streets, one of the us had to make the long journey of bringing the ball back.

Every summer, with my father, we would make a journey to Shadala village, for my grandmother was from the village, and most of my Father’s distance relative reside there. The house belonged to kak Ahmed, he was a distance cousin of my father. It was my first visit to the house, and I remembers it very distinctly.

©KarzanKardoziWhen we got to the house, my Father left me alone in a little room, as he went with kak Ahmed to visit the village, I sat in a corner, shy, not knowing what to do, until a little woman of forty, the wife of kaka Ahmed walked into the room, seeing me sitting alone, she shouted to his little son, who was playing outside, “Come and play with Haji Sharif’s son”. Everyone in the village, then, and even know, referred to me as “Haji Sharif’s Son”, for my father is almost like a cult figure among the people of the village.

Her son, Rejan, was of the same age as me, skinny with green eyes, he seemed fragile and pale, we became friend right away. He told me about a beehive they had, and being mischief of a boy, I wanted to see the hive, he took me to it, all the time telling me on the way not to touch it. I picked up a stick, into the hive, suddenly, bees everywhere, attacking, a few bite here and there, I started to cry as loud as possible, all the time, Rejan trying his best to comfort me, “It is nothing, look, I got bitten many times”, he took a handful of mud and put it on the places where I was bitten, comforting me, “It is nothing”

Five minute later I was sitting on a big soft carpet, eating lunch with the family. There were smell of freshly baked bread, goat milk and chess, sweet honey and hot tea. On the mud walls, hang three portraits; two young boys and a little girl, on the corner of the room, the mother was sewing little socks for Rejan, now and them, she would look at us with a smile.

After dinner, I could not help but whisper to my Father; as to whom the people in the pictures were? “They were the children of kaka Ahmed”, but as I looked across the room, there were only Rejan, his older brother, Ibrahim and younger sister, Sazan, and the pictures on the wall were not of them, “Where are they now”?, I whispered again to my father, “They are dead”, he whispered back to me.

On the way back home, my Father explained to me the tragic story of kak Ahmed; As a young man, he had married his cousin, and living in the countryside, the place lacked medical facility, and even in the cities back then, there were no such things as “screening tests” or “blood testing” nor “genetic testing” for newly weeded couple. The tragedy is that their blood did not match, whenever they had children, they’ll have thalassemia, an inherited disease occurring primarily among people of Mediterranean descent, that is caused by defective formation of part of the hemoglobin molecule, it cause in increasing numbers of red blood cells, the only cure is to have blood transfusions every month in order to keep the children alive. They had three children, and each of them died when they reached the age of 18, a painful slow death, for the multiple transfusions needed to sustain life lead to an iron overload throughout the tissues of the body and eventual destruction of the heart and other organs. But, they kept having children, hoping; at least one of them would be born healthy, but none were. Each month they had to have blood transfusion for the children, but even that was helpless, for by the time they reach the age of 18, they would die a slow painful death. “Will Rejan die when he is 18?”, I asked my father, he was silent for a while, then in a whisper, “God only knows”.  I felt desperate and sad, knowing that the young boy whom I had just become friend, so full of life, will die when he is 18, and no one could do anything about it.

Shadala in 2005

Shadala in 2005

I left for America few years later, forgetting all about Rejan. 11 years later after my first visit, I returned to the house again with my father, the same mud house, with the roof looking down on the village, as I entered the house I heard the same “Haji Sharif’s Son” echo through it, they recognized me at once, the mother kept looking at me, “You are grown so tall”, sadness in her voice, her green eyes full of sorrow, her hair was already getting grey. There was the same smell of freshly baked bread, goat milk and chess, sweet honey and hot tea, but yet, there was a change; beside the portrait of three children, hung a portrait of little Rejan, his death had occurred a year before. Reminiscences began, as I looked at the portrait; I recalled Rejan’s smiling face, and his ringing voice, comforting me when I was bitten by the bees, “It is nothing”. I had to walk out of the room, as I knew if I had stayed any longer, I would burst into tears. Maybe I reminded the mother of Rojan, or maybe she knew about my grief, for as I left the room, she began to shed tears, I could hear her crying.

At dinner, I sat beside Ibrahim, despite being older than Rojan, he had outlived him, he was 23, but he already looked like an old man; his face wrinkled, yellowish, with no color in his skin, yet, he was as cheerful as Rojan, laughing all the time in a ringing voice that reminded me of Rejan. His younger sister, Sazan also looked much older than her age; she also had beautiful green eyes, just like Rejan and her mother. Each month, they both needed new blood transfusion.  I looked at the mother on the corner, she was breast feeding a new baby, a new girl, kaka Ahmed kept saying that the Doctor had told them that his new girl needed no blood transfusion, was healthy to live a long life, but the doctor was not sure nor was kak Ahmed. When we drove home this time, I did not ask my father any question, we both kept silent.

Shadala in 2012

Shadala in 2012

A few days ago, once again, I visited the little house, alone this time; it was for the wedding of kaka Ahmed’s nephew, I had promised the groom to take picture at his wedding, and as I was busy taking pictures, a beautiful, green eyed little girl of 7 ran up to me, with her ringing voice, she shouted to me, “Are you Haji Sharif’s son?”, “Yes, I’m, and who you might be?”, “I’m Suzan”, “Well, Suzan khan, who is your father?”, “My Father is Ahmed?”. There it was, little Suzan, she had the same green eyes as that of Rejan, the same cheerful smile. “Can you take some picture of me? Please”. I took more than a dozen pictures of little Suzan, all the time a dreadful though in me kept growing, is she also sick? That evening, I went back to the house, no longer a mud house; a two story modern brick house, with all the modern convenience furniture decorating the place. Walking to the room, I saw the mother, she was sitting on a sofa sewing, the television was on, little Suzan was watching a cartoon of Tom and Jerry, on seeing me, the mother stood, “Haji Sharif’s Son”, her hairs all gray now, she was already an old woman.

©KarzaKardoziI sat beside kaka Ahmed at dinner, the room was crowded, many people from the wedding party coming in and going out of the room, laughter and cheerful smiles. I had the burning desire to ask kak Ahmed about little Suzan, was she was sick or not? but I dared not too. Looking at the portraits on the wall, there were now seven pictures, beside Rejan, there were also Ibrahim and Sazan and another little girl that I did not recognize. Seeing me observing the pictures, kaka Ahmed asked, “You were friend with Rejan and Ibrahim?”, “Yes, I was”

 I felt uncomfortable, and trying to change the subject, I asked him, “I didn’t know Suzan was your daughter, I took some great pictures of her at the weeding, from whom did she get such beautiful eyes?”, “From her Mother’s side of the family”, kaka Ahmed said with a smile, looking at her wife.

©KarzanKardoziI found him a cheerful man, always smiling, despite the fact that he had to live with  the agony of losing seven children. “You know, my little Rejan had the same eyes as hers, he was beautiful like her, and he was so smart, he had the brain of a grownup man. One time I took him to the city to get a blood transfusion, it was during the time of Iraq-Iran war, we went to all the civilian hospital in the city, none had any blood, and my little Rejan was already weak, he couldn’t walk, I had to carry him on my back, I feared for his life, and I became desperate, searching from one hospital to another, but he kept comforting me, ‘”we will find it daddy”’, he kept saying. I managed to get a piece of paper from a Doctor, allowing me to get blood from the military hospital in the city, back them, the Azadi park was an Iraqi military hospital. We had to walk an hour to get there, all the time carrying Rejan on my back, and he kept kissing me on the neck, ‘”we will find it daddy’”. When we got to the hospital, the place was like hell on earth, Iraqi choppers flying in and out, brining in the wounded and carrying out the dead, the road leading to the hospital was like a bloody river, red from blood of wounded and dead soldiers laying around. When I saw that, my knee gave in, I told Rejan that they will never give us blood with all the  wounded soldiers laying around, but he kept saying with a smile, ‘”we will find it daddy”’. I went to the head doctor in the hospital, at first he refused to give us the blood, but when he saw Rejan, his heart got soften, he took us to a refrigerated room, and gave us two bags of blood. When he gave me the bags, I shed tears of joy, knowing my little Rejan will live another month. He was so full of life, always happy and smiling. He liked chocolate candies, and there was a shop in the village that sold it. One day he told me to buy him some chocolate candies, I took him to the shop, there were a group of Iranian Peshmerga forces stationed around the village back then, one of them was in the shop, when he saw Rejan, he started to hug him and kiss him, “I have a little son just like him in Iran”, Rejan reminded him of his son, he took him to the shop and told him to get anything he wanted, “I will pay for it”, but Rejan would not pick anything, he did not want him to pay, when he left the shop, then he picked the chocolate candies, and I paid for it. That is how he was; he always cared for others more than himself. A week after he died, when the same Peshmerga heard about his death, he came to our house, before he reached the front door, he went down on his knee, in the mud, shouting and crying, hitting his fist to the ground, I had to go and comfort him, “Come on now, you should be comforting me, I’m the one who have lost a son, but instead, I’m comforting you.” He was crying all day, telling me that he had seen many of his friend die in battle, but never cried like he did for Rejan, “Why did God take him away, he was so innocent, so full of life”, but God’s will is God’s will. Every Friday until the day he left back to Iran he visited his grave, I wish to know where he is now, he was a gentleman, Rejan reminded him of his son, that is why he was so taken by his death”

As I looked at Suzan, with her beautiful green eyes watching the television, I could not help but ask kak Ahmed the burning question, “Does Suzan also needs blood transfusion every month?”, “No, thanks God, she is healthy. God gave her to us healthy”. Just then, little Suzan, knowing we were talking about her, ran to his father, gave him a big hug, her little arms around his nick, I could see kak Ahmed’s eyes smiling with joy, “Do you know who this young man is who has come to our house?”, he asked her, pointing to me, “Yes, he is Haji Sharif’s son”, she whispered into his ear, they both laughed.

I could not bear it anymore, at that second, the tragedy and the joy of life combined were too much to bear, I picked up my camera and walked out of the room; into the cold, windy, dark night, and my heart was heavy.


8 thoughts on “Thalassemia: Shadow of Death

  1. I cannot imagine the pain that family felt. Heartbreaking to say the least. Thank you for the glimpse into their world. My heart aches for them and my prayers for the family. Thank you again.

  2. Your story is breaking my heart with tears…I have been reading you for the last hour…You are so gifted in your writing. Karzan, you write with your heart…it is beautiful! The story of this family–the loss the Mother experienced–her courage to continue each day…the bravery of the Father. I am still crying…
    Your stories should be read the world over…we would see how much possibility there is in love…your sensitive heart will open the eyes of our hearts…

  3. How terribly sad. I lost my only child exactly 5 months ago today. The pain is unbearable. I cannot imagine losing seven children! Thank you for sharing this beautiful, poignant story.

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