Today is the ninth of November. It has been exactly nine years since I last saw my father. The 10th of November 2011, I wrote in my diary: today is the first day the sun rises without you, Dad.
This is just a blog post, but about a person who deserves a book. My father was the bravest, the most generous and open-minded person I have ever met. As a girl and a young woman, there was nothing that I could not share with him, nothing that he was not ready to think about and understand. He was clear-sighted and while he could have been cynical, instead, he was warm, caring, and had a wicked sense of humour. The way he could always joke, even in the worst circumstances, is maybe what I miss most.
Today, I will not talk about the efforts he put to give me medical treatment, to see me walking, the dream he could never achieve. I will also not talk about his efforts and support that make it possible for me to complete my studies. One thing I want to mention, however, is how he shaped my path as an activist and human rights advocate. Not long after I started working with human rights and disability rights, I was offered a position in a political party. At that time, I was very young, and the idea of getting support for my work in a position of power was flattering and exciting. I told my father about the offer I had received. He asked me: “So, what have you answered them?” I said: “I have not accepted yet, but I think I will accept. I thought you would be pleased? You have been working with politics for so many years.” He said:” Yes, it is true I have been involved with politics for most of my life and have worked with many political parties. I do not regret this and believe in the causes I have worked for. But you have so much more to offer, do not waste it. Human rights are for everyone, not just for one ethnic group or a party.” So, I turned down the offer and continued to work independently, with no support. It was a very tough path to take, but I know my father was right. This is who I am to this day.
Soon after he was diagnosed, my father went in for surgery. They thought that the cancer had not spread, and that they could cure him by removing a part of his lung. But when they opened him up, they realized that there was nothing they could do, and they closed his chest again without touching anything. When my father woke up, they were afraid to tell him the truth. They said that they had carried out the procedure and that it would take time to see results. But my father understood that they were just avoiding the issue. So he asked me with a smile: “What happened exactly? Is it under control? Is it worth listening to them?” The expression on his face was like a person eager to hear the latest gossip. I answered: “What will be, will be. Enjoy your cigarette.” Before I entered the room, I had been crying a lot, but when I spoke with him, I was doing my best to smile and joke with him, just as he was joking with me. I will never know if he understood what I was feeling under that brave face.
My father suffered from cancer for almost a year. From the day he got his cancer diagnosis until the day he died, I was with him every day. I felt it was my responsibility to support him in this period, just as he had supported me through the difficult times when I needed him. The times he needed me the most was at night. He couldn’t sleep, he was in pain and had difficulty breathing. Everyone else was asleep, and he was alone. During the long hours at night when the house was quiet and calm, he had time to think. So, I decided to be with him at this time, pretending I couldn’t sleep, or pretending I had something to do on the computer. This time was the time when I got to know my father in ways that I had never been able to before. He told me about everything that had happened during his life, all his stories and all his secrets. And I also shared my secrets with him. To take his mind off the situation, each day I prepared a topic to discuss, or something I could teach him, which he didn’t know anything about. We discussed everything. We talked about the future, of the country and of the planet. The Arab Spring had started and things were moving in Syria too, and he was worried about the country and what would happen to me. At that time, I was very well known, and he was worried that I might be manipulated by parties to the Syrian conflict. As long as my father was alive, I had never had to think about getting a job. He said, I am leaving you some money, but if you need to work for a living, apply to the UN, don’t let any agenda take your name, you have worked hard to be respected. You should be impartial always. Whatever you do, your knowledge and integrity will be your most valuable asset.
And then the last night came. His illness started in March, so we had time to see the spring together, the summer, and then autumn. Two days earlier, we had the al-Adha celebration, and nine people from the family were there to keep him company during the daytime. Every day we had visitors. That night, we were both really tired. He had taken a lot of medication, so he was unable to sit and discuss. Instead, he wanted me to talk, so he could listen. He was in great pain. I don’t remember what I was talking about that night, but I remember that I was thinking either he needs a miracle cure, or to die very soon, to be free from so much suffering.
Usually, when morning came and it started to get light, I went to bed, because other people in the house were waking up and could sit beside him. That morning, after two hours in my bed, I saw him come into my room. He said: “it’s over.” I answered, “where are you going? we still have some stories to tell, who allowed you to go?” I was joking with him, but believed him, and knew that he would not be there the next day. The same day, at nine in the evening, he passed away. I sat beside him all night.
The next morning, at sunrise, they went to bury him. They took him, and I stayed home alone. I wrote a long letter to him. In that letter, I told him all the things I had not been able to say. That I had been joking and keeping a brave face so he would not worry, but how much it had hurt to understand that he had this incurable illness, to feel how much he was suffering. That night, I couldn’t sleep. They asked me to go to bed because he would not be needing me. I said, but I need him now. Since that night, I have had problems sleeping. I thought it would get easier with time, but the pain of losing him has not decreased. My father is with me every day. Anything that happens to me, I tell him. Always, I ask him for advice.
Not long ago, I had a dream. I was sitting in my wheelchair – the plain wheelchair I had before I got an electric one. My father was there, and I was feeling really low. My father asked, what has happened, why are you sad? I told him about all the daily frustrations that were weighing on me. He said, take it easy. You need to take a break, go out and enjoy yourself. He took some colourful balloons from his pocket and started to inflate them, then tied them to my wheelchair. I asked him what he was doing, and then realized that my wheelchair was starting to float in the air – I was drifting out of the room and upwards, my father following just behind me. I drifted higher and higher, up in the clouds, but my father kept walking behind me, saying don’t worry, it’s going to be OK. Just enjoy.