Children undergoing dialysis therapy do not have the ability to live as normal children do. Recovery from their disease mean they would be able to go to school, take walks in the park, and meet other children their age without worrying about the future, as I saw them doing during a visit several of us from We Are Not Numbers recently made to Rantisi Hospital. Their lives depend on dialysis machines to keep them alive, and I wonder how children can bear all this! I know that their psyches are tired yet still retain hope, but I found it hard to bear to witness the suffering of these children. I tried to be as coherent as possible in front of them, and to draw smiles to their innocent and kind faces.
The apparatus of life
The children come to the hospital four times a week for dialysis. I was shocked by the shape of the hemodialysis devices, which I had only seen before in a biology textbook in high school. In the hemodialysis department, I sat next to one child’s aunt while I waited for the other members of the WANN team to arrive. She explained that the kidneys of these children cannot excrete toxins from their bodies in a natural way, which is why they need these devices to do it for them. She also explained to me how the machines work: they calculate the weight of the child to determine the number of hours he or she needs to be hooked up for treatment. “They implant a catheter inside each child’s body, directly into a vein in the chest, or in the neck, so they can use this apparatus of life,” she added.
I sat silently to catch my breath. My gaze landed on the tubes connecting the children to the devices. The child’s aunt noticed and told me that these hoses are changed out after use on one child and thrown into a hazardous waste container. The life devices rely on sterile water supplied by the Ministry of Health that come sealed in special cylinders, and these are also discarded after use. The doctors don’t leave the children alone – if the kids need help, they come.
All the pain and boredom I witnessed on the faces of the children, and how much their cries stabbed my heart, made me thank God for all the blessings that we healthy people do not pay attention to. I was grateful that my faith in God would help me forget some of the painful scenes of the day, and remember the children’s smiles instead of their cries.
A hospital hallucination
After our conversation, I took a rest, and my mind entered a strange hallucination. I saw my soul flying through the Rantisi Hospital, roaming through all the departments, wandering its corridors, and seeing the doctors treating their patients, before it traveled back to the hemodialysis department. There, the children had become Smurfs that lie on the bed tied to odd devices. I saw in front of me a Smurfette who resembled a little girl I had seen in the hospital earlier called Malak, full of innocent beauty and cuteness. I saw a thoughtful Smurf who resembled another child named Yahya, who had a sullen, quiet expression and always appeared immersed in thinking about everything around him. I saw a dreamer Smurf who reminded me of the child Mohamed, floating in rosy daydreams.
When I tried to approach the Smurfs to touch their heads and sing songs so that I might relieve their pain, I saw their lives were tied to big, long strings the height of buildings. I climbed these strings cautiously and, when I reached the top, I saw a shadow of a suspicious-looking person partly hidden in a black mist controlling the lives of the Smurfs, either by cutting them off from the devices or by preventing them from traveling abroad for treatment — a villain indifferent to the pain and sadness in the Smurfs’ eyes.
My eyes opened wide, my heart rate increased, and my face turned yellow. I rushed back to the little Smurfs to ask with a trembling heart, How can you bear this cruelty? but I could not talk to them. The Smurfette noticed and said to me: Haven’t you heard the legend of Rinox, concerning suffering, which says that from the depth of darkness a glimmer of hope will emerge that will allow us to achieve anything we wish, and to break free from the occupier who is trying to hurt us in numerous ways? So do not give up! And don’t forget to hope, because it is the basis of healing.
These words brought a beautiful smile to my face.
Back to hospital reality
I returned to reality and saw that my team had arrived. We started our activities with the children, under the supervision of Enas Gnam, WANN’s project manager, and Walaa Sabah, community outreach and partnership manager – singing songs about Babar the elephant and playing guessing games. We tried to bring smiles to the little faces, which were tired and pained in an atmosphere full of heaviness. We gave them gifts and colorful balloons with pictures of smiling cartoon characters on them, which drew smiles to the children’s faces.
But the future is blurry before their eyes, and when we asked about their hopes and dreams, some of them could not think of an answer. Some wished for recovery, and we gave hints and suggestions during an activity called “The Wishing Board.” Through this game they remembered that the future is still ahead of them, and it gave them hope for recovery. Especially here in Gaza, hope is the key to recovery. If we lose it, our morale will drop and disease will likely consume us, due to the lack of medical resources.
Talking with the parents
While entertaining the children, we also took turns interviewing their parents. I went with my WANN colleague Ahmad Al-Wahidi, and at first I had to ask him to conduct the interview by himself, because I was experiencing a psychological struggle similar to shock. With every word I heard from the subject of our interview – the mother of one of the children – I felt as if a sword was being stabbed into my heart.
This mother’s child was named Mohamed Diab, and he was 13 years old. His family discovered the disease when Mohamed was just five. His mother explained that the family discovered what looked like pebbles coming from his body, so they arranged for Mohamed to be tested and learned that both his kidneys were full of kidney stones. They had tried treating him with medication, and were now following up with further treatment at the hospital. They also discovered that their second son had the same problem – kidney stones that lead to kidney failure. Both sons had enlarged livers and kidney atrophy and had to start dialysis. A third son, thank God, did not need dialysis, though he had the same condition as his brothers.
We asked about available treatments and their mother informed us that many of the effective treatments are not available in Gaza at all. Some can be purchased from commercial pharmacies, but important treatments such as ibuprofin, kermin and zamler needles are unavailable at the hospital, due to being very expensive, so they have to buy them, especially the kermin needle which her child needs every time he does a dialysis which costs about $30 apiece. She told us that there were some medications that they can obtain for free, but the best treatments are not available at this hospital or any nearby one. When we asked if traveling abroad to get medicine for her sons was an option, she explained that it was difficult. They only went abroad once to install a cuffed catheter for Mohammed’s kidney and liver problems. He needs to travel to Turkey where he can be treated, but they can’t get permission to travel. Meanwhile, he is still in a wheelchair, unable to walk because of his illness. Finally, we asked how all of this has affected the boys’ lives and the family unit as a whole. “The disease makes a big impact,” she told us, “[especially] because we have not only one child in this situation, but three.”
I hope the people of my homeland, Gaza, Palestine, will be free tomorrow of this suffering and that we will be able to live our lives. Traveling for medical treatment is – or should be – a basic human right, and the occupier is violating our most basic rights; so what next? Do we wait to die slowly? There are no clear answers to my questions, except that our faith in Allah will continue to give us hope, and, as the Rinox legend says, that we will win by continuing to hope for a brand new day – a day of victory, without suffering, without tears, only peace.