by Hamed Amiri
‘How do you do it?’ I asked.
He thought. ‘Well, when someone’s going through a tough time, you have to hold on to any bit of hope there is. I don’t mean saying that everything’s going to be okay when it’s not – that’s just a lie. It’s about knowing that things aren’t good but being happy with them anyway. That’s what you have to do.’
I didn’t really get it. I was a natural worrier, and although I pretended I was okay I found it hard to be positive. Hussein shrugged. ‘All I know is that I made this old lady feel better, just by talking to her. It felt kind of good.’ Then he said that that was what he was going to do from now on – make people feel better. It would be his life’s mission. I punched him gently on the arm, and thought how lucky that old lady had been to meet Hussein.
CHAPTER 20
Fourteen hours
After the conversation with the old lady, something seemed to change in Hussein. He really did seem to have a new focus – helping other people. It became his job. Even though he was struggling with the side effects of his medication, and he still had the occasional bad episode where his heart rate would skyrocket, he concentrated on doing everything he could for other people.
It was an odd thought, but I started to think that perhaps we’d been brought here for a reason. We nearly didn’t make it to the UK. Was it luck that had allowed us to? Or something else? I didn’t know if I believed in fate, but I did know that Hussein was a pretty special brother.
The day after Hussein told me about the old lady in the hospital was a Saturday, and we’d been in Cardiff for a few months. The volunteers were rushing around, making preparations for a new batch of refugees who’d be arriving at lunchtime. I couldn’t believe how much work went into it. Not long ago this had been happening for us.
We were all quite excited. New refugees meant new people to play with, and we were always looking for kids our own age. We watched out of the window every hour to see if the minibus was arriving. Finally it did. Inside the bus I could see a couple of families, their eyes glued to their new surroundings. I realised we must have looked just as scared.
Hussein said he wanted to go out and talk to them, to tell them it would all be alright. I agreed it would be nice, but then I realised that he was serious. He wanted to be a welcoming committee!
‘C’mon bro, let’s meet our new friends,’ he grinned, and pulled me towards the door. We went downstairs and out into the courtyard. The families were hanging around, probably waiting to be told what to do next. I was a bit embarrassed, but Hussein went straight up to them and started to chat in broken English.
As Hussein prattled on I noticed that the group was mostly looking at him in silence. I tugged at his arm. ‘Let’s go,’ I whispered. He pushed me away. I could have walked away by myself of course, but there was something about Hussein that made me always tag along. When the volunteers came to show people to their accommodation, Hussein made me help with their bags.
After that day Hussein started regularly helping the volunteers with new refugees whenever he could. At first it was simple tasks like translating, as unlike Hessam and me, he’d finally picked up a good level of English. Then as time went on he also helped with the little kids, making sure they felt at home and keeping them occupied while their parents sorted their stuff. He was like everyone’s big brother now, not just mine. When a local programme for fixing bikes started, Hussein got his hands dirty and even got some of the kids riding. I wanted to tell everyone that Hussein was secretly fighting his own battle, that everything he did made him tired and weak. But I knew he’d kill me if I did that. He just wanted two things: to be normal and to help.
It always annoyed me that people didn’t seem to appreciate what Hussein did. He just got on with it, day after day, helping people in any way he could, but no one seemed to notice the lengths he went to. Then one day, three years since we had first arrived in Cardiff, Mum told us that Hussein was going to win an award. ‘You’re looking at Volunteer of the Year 2004,’ she said proudly. I was proud too! Finally, people knew how big Hussein’s real heart was. He got a silver trophy for the award, and Mum put it on the mantel piece in the apartment. Hussein said he didn’t care about the trophy too much, but he was glad Mum and Dad were proud.
In between school and the things that kept him busy with our neighbours, Hussein was still spending a lot of time in hospital. The worst times were when the arrhythmia in his heart would get out of control, and we had to rush to the hospital because his heart rate wouldn’t regulate. They had to shock him, placing pads either side of his chest before resetting his heart. Each time they did this I thought he was going to die.
*
Hussein’s visits to Dr Masani, the cardiologist at the hospital, continued, and he had more ECGs, more echoes and more medication. Dr Masani had become like a member of the family over the months, and apart from the emergencies, I always quite liked going to see him with Hussein. During this time I noticed Hussein’s eyesight was getting worse and worse, and his liver was not functioning as it should. It was powerful medication to calm his heart rhythm, but the side effects were becoming a problem. The doctors just wanted Hussein to be older before they could work out what the best operation would be. Dad said maybe there’d be some new medication before then, but in the meantime we just had to wait.
At school, Hussein started his A levels, but he missed lots of classes because of the hospital visits. The doctors started talking about him having a heart transplant, but when they looked into it Mum and Dad said it was too dangerous. The other option was a pacemaker, which Dr Masani said was like a little electric heart that made your real heart beat properly. The problem was that Hussein needed more than a pacemaker. He needed a new heart valve as well, and a procedure to change the electrical activity in his heart. It would be a huge operation. Hussein said he just wanted to get on with his exams.
Miraculously, Hussein managed to attend school enough to finish his A levels. Not only that, but the grades he got were good enough for university. Graduating with a degree became Hussein’s ambition, however long it would take him. I hoped it would come true.
But Dr Masani wasn’t so sure that Hussein would ever go to university. On one visit he sat us all down in his office with the charts and diagrams on the wall. I couldn’t help but notice that he looked nervous.
‘The operation Hussein needs is pretty complicated,’ he said to Mum and Dad. ‘It carries quite a lot of risk. We also can’t do it here in Cardiff.’
‘I know,’ said Mum. ‘But they do it in Southampton.’ Dr Masani looked at her, surprised.
‘Yes, they do,’ he said. ‘How do you know that?’
Mum explained that after Hussein had his second operation when he was little they’d taken him to Iran. That was where they told him the operation he needed was only performed in two places in the world: the UK and the US.
‘This is why we came to the UK,’ she smiled.
Dr Masani looked at Hussein, and he spoke to him as if to a friend, rather than a patient. ‘It’s a risky operation, Hussein. We can’t guarantee its success. It’s not just about fitting a pacemaker. They’ll try to replace the valve that isn’t working, and attempt a MAZE procedure that regulates the heart’s electrical patterns. Then they’ll do a Fontan Revision, which creates an atrial tunnel. It’s four operations in one. It’s only been done a handful of times before.’
Mum looked worried. But Hussein grinned. ‘At least we don’t have to go to Chicago.’
Dr Masani smiled, but Dad looked serious. ‘What will happen if they don’t do it?’ he asked.
Dr Masani looked at him. ‘Well, we can keep Hussein on the medication, but the side effects might become too much. His liver won’t cope forever. He could deteriorate and then we’d need the operation as an emergency anyway.’
I looked at Hussein. He seemed to be weighing it up.
‘You don’t need to decide now,’ said Dr Masani. ‘I suggest you go to see the surgeon in Southa
mpton and discuss the options. He’d like to meet you anyway.’
We all trooped out of Dr Masani’s room. As soon as he had explained the risks of the operation, Mum had become stressed. Hussein took me to one side.
‘In Southampton,’ he said, ‘I don’t want Mum and Dad to be in the consulting room with me.’ He looked awkward, but I nodded. I understood: it was getting too much for them. Hussein was twenty years old now – a young man old enough to speak for himself. He just wanted to spare them the worry.
‘Will you come in with me instead, bro?’ he asked.
I did a tiny fist bump. ‘Of course,’ I said. ‘Musketeers.’
We went home and prepared for the trip to Southampton. As well as clothes and luggage, it felt like we had to pack up our worries and concerns. The only way we were going to get through this was by taking Hussein’s advice – to look on the bright side no matter what happens. I promised myself I’d support Hussein and take some of the burden from Mum and Dad.
It took hours to get to Southampton and we were all quiet in the car. When we got there we were shown to an apartment that the hospital lent out to families like us. Hussein had to fill in some forms, and then we were allowed to meet Dr Haw. He was the only doctor ever to have performed this operation successfully, and he was keen to see Hussein.
Hessam stayed with Mum and Dad in the waiting area while Hussein and I went in to see the doctor. I’d never concentrated so much in my life. My English was quite good by now (although not as good as Hussein’s) but there was so much to take in. Dr Haw described exactly what would happen in the operation and the difference it would make to Hussein’s arrhythmia. He talked about MAZE procedures and the Fontan Revision. The only thing I remember is that there’d be no more blackouts, as the pacemaker would keep the heart’s rhythm on track.
Hussein and I listened and nodded, trying to take everything in. When he’d finished he asked if we had any questions, and I knew Hussein and I were both thinking the same thing. How risky was the operation?
When Dr Haw answered, I was surprised at how honest he was. He was treating us like adults.
‘The operation is successful in around 60 per cent of cases,’ he said. ‘But we won’t know how likely it is to work for Hussein until we start operating.’
I was stunned. ‘So, 40 out of 100 people having this operation don’t make it?’ I asked. Dr Haw nodded. I thought how glad I was Mum and Dad weren’t in the room.
Hussein didn’t say much, he just listened and nodded, taking it all in. When we came out I grabbed him.
‘It’s only a 60 per cent survival rate, bro,’ I said. ‘Maybe less for you.’
‘I know,’ he nodded. ‘But what’s the alternative? I just get worse? I want a normal life.’
‘I get it,’ I answered. ‘But what do we tell Mum and Dad? If we tell them the risk they’ll flip.’ We went back to the others.
I wasn’t sure how we were going to play this one, but as soon as I saw Mum and Dad’s anxious faces in the waiting room I knew. Hussein sat down. Suddenly I realised that he expected me to speak. I was horrified. How could I tell Mum and Dad without also making them aware of the risks? Then I remembered all the times Hussein had helped me out, all the times he’d saved my skin. It was the least I could do. I thought of all the times I’d successfully lied to get out of trouble at school.
I sat down with Mum and Dad. I told them what the operation was, what it would involve. But I didn’t tell them it could take up to fourteen hours to complete. I also didn’t say a word about the survival rate. And I knew I never could. Hussein was an adult now, and only he could make that decision. Why worry Mum and Dad when they weren’t the ones who had to choose?
I felt guilty lying to Mum and Dad. We’d been through so much as a family and never hidden anything from each other before. But since we’d come to the UK they hadn’t seemed so confident. They didn’t have the strength I’d seen on our journey. They struggled with the language and understanding the doctors. The strain of getting us here, losing all their friends and family and the difference in culture in Cardiff and Herat had taken its toll on them. It was like we were the adults now, looking after and being strong for them.
The next few days were spent waiting for test results and for Hussein to have pre-op checks. We were kept occupied, but not busy, passing the time and waiting for the big day. I didn’t want it to happen. What if I lost him? Hussein wasn’t just my brother – he was my best friend. We’d been through so much together.
The day of the pre-op came. Hussein and Hessam and I teased each other and joked around as usual, but underneath it all was a feeling of trepidation. Hussein was on the ward and had to go through more checks before the next day’s operation. By the time they were all done it was late evening. We all sat beside him. I didn’t really know what to say, but even in that situation Hussein was thinking of others. He joked and laughed, and I knew he was trying to put us at ease.
After a while Dr Haw came in with a piece of green paper. He said this was the important bit, the bit where Hussein had to sign his consent to the operation tomorrow morning. He explained that the piece of paper described the risks of the operation and if Hussein signed it he was agreeing to accept those risks.
We were all quiet. I didn’t want to say anything – how could anyone tell Hussein what to do when it could only be his decision? If I could I’d have told him not to sign that consent form. I’d have told him to carry on as things were and not to risk his life for something that might not work. After everything Dr Haw had described it felt as if Hussein signed that paper he’d be signing his life away. But I knew I had to keep quiet. No one could make this decision except for Hussein.
Mum seemed to agree. ‘Whatever you decide, we’re by your side,’ she said. I wondered how she’d feel if she knew the odds.
We all tried not to look at that green piece of paper, as if we could ignore it and the operation would go away. But it wasn’t going to go away. If Hussein didn’t sign the green paper now, his health would continue to deteriorate until he was back here in the operating room anyway. It was the only option.
The only person who didn’t seem afraid of that piece of paper was Hussein. He looked around the room and smiled, amused at how tense we all looked. Then he turned to the nurse. ‘Well, I’ll need a pen,’ he grinned. Typical Hussein. I knew he didn’t want this op. I knew he was just as scared as we were that it would go wrong. I knew he wanted to stay with us, teasing his brothers and playing the fool. I knew how much he wanted to go to university. But he never took time to dwell on the bad stuff. For Hussein it was all about moving forward. He passed the paper back to Dr Haw. It was like he’d signed an autograph.
‘Now we can all go to sleep, people!’ he said to the nurses and doctors in the room. They seemed surprised at how relaxed he was about the following day, but we weren’t. We knew Hussein, and this was just what he was like.
No one got much sleep that night. Mum cried so much during our morning prayers that at breakfast her cheeks were red and blotchy. Hessam and I knew that we needed to be strong, so we put on a brave face. Dad did too, but his way of dealing with it was to take himself off for a long walk. He always said that if you tire the body, you numb the mind. I found out afterwards that in the early hours of the morning he’d gone to the ward to watch Hussein sleeping.
We didn’t eat much breakfast and made our way straight to the hospital. To our surprise, as we got to Hussein’s room we could hear laughter coming from inside. I shouldn’t have been surprised. Hussein was joking with the other patients and teasing the nurses as they prepared him for the op.
The atmosphere Hussein had created helped. He’d succeeded in lightening the mood. I saw that he’d already got a theatre gown on but was struggling to tie the knots, and I burst out laughing when I saw his ass sticking out the back. Even Mum and Dad smiled, and I was grateful to Hussein for making this easier for them. Before he went into the operating theatre we all huddled together. Th
ere was nothing to say now, so we all stayed quiet. Then, after a final check, the nurses told us it was time for Hussein to go. They unplugged the machines that were attached to him and wheeled him away.
‘See you soon, guys!’ Hussein shouted to his roommates as the squeaky wheels of the bed started to turn. We followed behind, together with some of the nurses. We all knew what was about to happen but none of us could prepare for it no matter how hard we tried.
We went down in a lift and then towards the theatre, and soon we got to a big red sign that said ‘no entry’. Here was where we had to stay. The nurse whispered, ‘Time to say cheerio.’ That made Mum break down in tears. None of us wanted to say that! How could we, knowing that we might not be able to say hello again? This wasn’t a goodbye before a holiday or when someone went off to school. This could be forever.
Dad couldn’t say it. He was crying too and wandered off down the corridor. I was disappointed in him. Was that it? He wasn’t even going to say goodbye to his eldest son? What if he never saw Hussein again? Hessam and I both went up to Hussein. ‘See you in a few hours,’ I said, and shook him by the hand. It was all I could do to control my emotions. Then they started to wheel him in. Just before they did, Dad came back and kissed him on the forehead.
CHAPTER 21
The prayer room
As soon as they pushed Hussein into the operating theatre and I heard the door click shut my heart took over. I couldn’t hold the emotion in any more and I had to get away. I said something about getting a chair for Mum and ran off down the corridor. I instinctively headed towards the waiting room, but as I got nearer I realised I didn’t want to be there either. I needed to be on my own.
There was a prayer room on the operating floor and I knew that was where I needed to be. I ran towards it, repeating in my head, ‘You will see him again.’ I prayed there wouldn’t be anyone in there.