by Hamed Amiri
The doctor was right. Over the next few hours Hussein gradually came round – to a sea of faces he didn’t recognise. He joked afterwards that he thought he was on the other side and was surrounded by angels, except these ones were in lab coats and blue overalls. He was dazed, but I knew his old self was returning when he started to play up with the doctors. Unused to his sense of humour, the doctors explained how unpredictable the situation had been.
‘You were in a pretty dangerous spot at one point,’ one of them said.
‘That’s okay,’ Hussein said. ‘Danger’s my middle name.’
We spent the next few days at Bristol while Hussein recovered. He couldn’t care less that he’d had another close call. He was only in awe of the level of care the doctors and nurses of yet another hospital were giving him. Although he knew now they weren’t angels, he told me they might as well be, as they sat by his bed and cared for him long after they had to. Whether in Cardiff, Bristol or Southampton, it seemed wherever Hussein’s heart took him, he found kindness and compassion.
Seeing the kindness of strangers was good for me, too. I still struggled with accepting help from people I didn’t know, my first thought at an offer of help was always ‘What’s in it for them?’ Over those few days in Bristol, Hussein taught me to accept that kindness had existed all along.
While the safe haven of the UK gave us stability, it was the NHS that had saved Hussein’s life. And during that time in Bristol he confided in me again that he felt he had a purpose. This time he didn’t just want to help random strangers. He wanted to give back to the NHS everything they’d given to him.
CHAPTER 24
An extraordinary life
As Hussein recovered at Bristol, we all spent a lot of time at the hospital. During the day Hessam and I were mostly in the waiting room, and Hussein would weave back and forth between there and the ward.
One day I was standing with him in the corridor when a man came up to us.
‘Excuse me, do you know where the doctor’s office is?’ he asked. Hussein and I both noticed that he looked anxious. He seemed distant, and I could see the same look of anguish on his face that I saw on Dad’s.
We pointed out the doctor’s office, but I could tell that Hussein was affected by the meeting. When Hannah, one of his nurses, came by Hussein stopped her.
‘Your Highness!’ he joked, bowing from the waist. The nurse rolled her eyes and laughed. Hussein had been spending a lot of time with the nursing staff and they were developing a special bond, as well as getting used to his sense of humour.
‘Who was that man?’
Hannah explained that he was the father of a girl who was waiting for a valve replacement operation, similar to the one Hussein had received. Hussein looked deep in thought.
‘I’m going to talk to him,’ he said to me when Hannah had gone. ‘I know that look. It’s fear. I think I might be able to help.’
And with that Hussein disappeared slowly down the corridor in search of the man.
Worried that he’d overdo it, I had no choice but to follow him. When I caught up, despite only being able to walk very slowly, Hussein was nearly at the doctor’s office. The man was there, pacing back and forwards. Just like Dad, I thought.
Hussein went up to the man and gently touched his arm. Embarrassed, I held back and hoped he wouldn’t think Hussein was being nosy. What Hannah had said was right: the man’s daughter needed a new heart valve and was heading for a big operation. It was the same operation Hussein had had in 2006.
But as Hussein talked to the man, he discovered another coincidence. His daughter had the option of two different valves – the exact choice Hussein had had all those years earlier. I listened as the two got into a long conversation. Hussein told him about his own experience and answered the man’s questions from his point of view. Unlike all the doctors and experts this man had listened to, Hussein had been living with one of the valves in his body for several years. He was like a walking review, explaining the differences between the two options and giving the pros and cons. The man was grateful for the information, but he still looked desperately worried. Hussein asked bluntly, ‘What is it you’re worried about the most?’
The man thought. He seemed to be trying to think of the best way to phrase his answer. Finally he confessed, ‘I’m worried that she won’t be able to have an ordinary life.’
Hussein looked at him. ‘I understand,’ he said slowly. ‘And she won’t.’ I was horrified. How could he say this to a man whose daughter was about to have an operation? But I’d forgotten Hussein’s sense of humour. Suddenly he smiled. ‘She’ll have an extraordinary life.’
Little did that man know that as he walked down the corridor in the hospital he’d meet someone like Hussein. He was a breath of fresh air – not just because he seemed ‘normal’ and well, but because he had a gentle sense of humour that made everyone feel at ease. It always amazed me to see first-hand how people reacted to Hussein.
The man asked Hussein if he’d come and meet his daughter and Hussein agreed.
‘On one condition,’ he said. The man looked puzzled.
‘Slow down with your walking! I’m still recovering.’
Hussein went on to spend quite a lot of time with Lizzy, the daughter of the man he met in the corridor, and as time went on we saw the pair come to terms with her operation. Her dad stopped hiding his emotions so much, and their room was filled with laughter as Hussein showed Lizzy that life should never be ordinary.
He told funny stories about doctors getting electric shocks and put them both at their ease. He talked for hours about the differences between the valves and what life was like for him after the operation. The tension we first saw in Lizzy’s dad was replaced with laughter, and the gloomy room filled with a sense of hope for life outside the hospital walls.
Lizzy’s dad was keen to thank Hussein, but this wasn’t part of Hussein’s plan. He didn’t want any thanks.
‘There’s nothing to thank me for,’ he explained. ‘I just want to help another human being who’s going through what I am.’ He told me afterwards that he got a strange buzz in his heart from helping strangers – I said that must be the pacemaker. He laughed and said it was a good feeling – it was a feeling he wanted to have again. Seeing a positive difference in how Lizzy and her dad felt made him want to do that for others too. The nurses had gone above and beyond to make him better; it was time to pass that kindness on.
For the rest of his stay in Bristol, Hussein had a new purpose. His conversations with the nurses were different and something even changed in the way he carried himself. ‘Khastan tavanas tan hast,’ said Mum: ‘If you want to chase your dreams you have to believe in them.’
For Hussein a dream did come true out of meeting Lizzy and her dad. After he left Bristol he was put forward for the position of a governor at the hospital, a role that would help to guide the services the hospital provided and represent the community and their views and interests. There would have to be interviews and official documents, but I thought no one could have been more qualified to do the job. At last Hussein felt he was in a position to make a difference.
For Hussein, the most important thing was helping people to feel at home in hospital. He talked a lot about the sense of gloom and doom Lizzy and her dad felt when they arrived, and he knew that was the place to start his new mission. The NHS had given him his life back – twice – but the real gift had been the care and attention of the staff. He said if he could help someone else just a small proportion of the amount he had been helped, then he’d be happy.
Coming back to Cardiff felt unreal. While we’d been away yet again we’d thought we would lose Hussein. Of course, we were grateful that he’d made it, but we were having too many of these close calls.
Hussein, however, barely seemed to notice. He was so energised by the possibility of his new role as a governor that he was like a different person. Dad joked that maybe they’d shocked him a bit too much. He certainly seemed
like a man on a mission. But I guessed time was something Hussein never felt like he had much of.
The formalities were completed and University Hospital Bristol finally had a new governor. As Hussein took up his new role, I realised that things hadn’t been so bad for us. I’d spent years focusing on what had gone wrong – having to leave Afghanistan so suddenly, being on the road and fighting all the battles that were thrown at us on the way. Then Hussein’s illness, the emergencies and long hospital stays. But Hussein made me realise that along the way a lot of people had helped us. People who hadn’t asked for anything in return, from our neighbours in Herat to Soran the trafficker to the nurses at Southampton, Cardiff and Bristol. In many cases we hadn’t even been able to thank them.
It’s easy to think life’s against us when everything’s going wrong. But as soon as things go right again, how often do we go straight back to taking life for granted? Seeing Hussein’s smile as he left for his first governors’ meeting made me realise it doesn’t have to be like that. It’s just about taking the time to say thank you.
Hussein wasn’t like the other governors. He was still a long-term out-patient of the hospital. Sometimes he’d go straight from a cardiology check-up to a governors’ meeting, and many of the board members were unaware of this. Just like at school, he hid what was really going on. If he had an attack of arrhythmia or his blood pressure was unstable he’d still walk through those doors wearing his governor’s badge. He saw his unique role on the board as being the voice of the patients. He knew what it was like to be in hospital for a long time, and he was focused on making the patient experience a positive one.
Despite the pacemaker working well, Hussein still described his heart as having a mind of its own. Some days it would behave, others it wouldn’t. He never knew what sort of day it was going to be when he got up in the morning.
But he saw his role at Bristol as being his destiny. It was what had been missing in his life. Yes, it was a thankless task, but Hussein had no agenda other than wanting to make a positive difference. He couldn’t control his heart, but he could control how he lived with it.
Soon, the Heath hospital in Cardiff realised that they also could do with Hussein’s knowledge and advice. So the hospital that had cared for him so much in the early days of us arriving in the UK invited Hussein to become a member of their board too.
They soon learnt that it wasn’t just knowledge and experience that Hussein could give them. His wit and positivity made board meetings fun, and his compassion for the patients meant he was always invited onto the ward. The doctors and nurses on the cardiology ward – the same place where he’d met the old lady several years ago – loved having him there to speak to patients.
Hussein still had regular ‘emergencies’, where an arrhythmia attack would get out of control. In these instances Hessam and I knew what to do: keep Mum and Dad calm, call an ambulance and get Hussein to the Heath. The doctors would be ready to shock him if necessary, to reset the rhythm of his heart.
I was rarely very far from Hussein. But in early 2017 I was invited to go snowboarding with some friends in the Alps. It was a long journey, and I hadn’t had much sleep. When we got to France at midnight, I was starting to unpack when I had a call from Hessam. He was at home with Hussein.
‘What’s up?’ I asked.
‘Hussein’s not feeling well,’ said Hessam.
I knew what this meant. In our family it was what we said when Hussein had an arrhythmia attack. I panicked. Why wasn’t I there? We were supposed to be a team, and now the worst had happened and the team was a man down.
‘Ok, okay,’ I rushed. ‘Have you called the ambulance? Where are Mum and Dad?’
‘We’re at the hospital now. It wasn’t like normal, Hamed. It’s worse. It’s like it’s faster or something. All the colour went from his face.’ Here he paused. He could never lie to me. ‘They’ve had to shock him twice.’
I had to get back there. Hussein needed me, and holiday or no holiday I had to be there for him. I’d promised. I managed to find the number for a taxi company and arranged to be picked up and taken to the airport. I had no idea what it would cost. It was snowing hard by now but I knew I had no choice. I told my friends I was leaving and went downstairs to the hotel reception to wait for the taxi.
Everyone told me to wait upstairs and that reception would call me when the taxi got there, but they didn’t understand. Even by waiting here I was a step closer to Hussein. A promise is a promise, and by being here, hundreds of miles away when Hussein needed me, I was breaking mine.
By the time the taxi finally arrived the adrenaline was pumping through my body. Lack of sleep and worry about Hussein meant that I was wired with panic. I told the taxi driver to go faster and faster, and the car skidded across the icy roads. I knew it was dangerous, but all I could think of was what if I never saw Hussein again? He’d had episodes like this before, but never when I’d been hundreds of miles away from him.
It took two hours to get to the airport, but it felt like days. The temperature had dropped again as we got into the small hours of the morning, and the driver gripped the wheel as he weaved past other cars. I prayed and prayed, just like I’d done in that prayer room when Hussein had his operation.
When we got to the local airport the car said -12 degrees. There didn’t seem to be any lights on anywhere, and the place looked deserted. Finally I saw what looked like a security booth, and I asked the driver to pull up outside it.
‘Is this Alpes-Isère airport?’ I asked the man in the booth.
He said something in French back to me. I looked pleadingly at the driver. He sighed.
‘Yes, he says it is Alpes-Isère airport. But it doesn’t open until 7am!’
I started to get my bags together.
‘You do know it’s only 3am?’ asked the driver. ‘You’ve got four hours to wait.’
‘I know. I’ll wait it out until 7am,’ I said. I gave him the cash.
‘But it’s -12 degrees!’ he said. I think he thought I was crazy. But it was a step closer to Hussein – that was all that mattered. As long as I was doing something to get back to him I felt better.
Realising I wasn’t going to see sense, the driver at least managed to persuade me to put on some more clothes from my luggage. Wrapped up, I got out of the car and prepared for the wait.
I was glad of the clothes. Before dawn broke it got even colder, and I started to pace backwards and forwards to keep warm. ‘I’m just like Dad,’ I thought with a grimace.
As 3am became 4am and the night started to fade away, so did I. My pace slowed, I started to feel exhausted, and the cold was creeping into my body like a disease. Without realising it I was putting my own health in a dangerous situation. But all I could think about was Hussein.
At around 4.30am I felt a tap on my shoulder. I was dragging myself past the airport doors for the thousandth time when I turned round and saw the security guard. He’d taken pity on me. In broken English he said, ‘You will die here if you do not get warm,’ and I realised he was right. He took a bunch of keys and unlocked the main airport door, half pushing me inside. He switched on the heaters and made me sit underneath them. I hadn’t realised how dangerously cold I was. I could no longer feel my legs, despite the thermal layers I was wearing. My face was buried into my jacket.
As I started to get warm I began to get the feeling back in my fingers. As I did I felt a vibration in my pocket. My phone! Still shivering, I opened the text from Hessam. It was the news I’d been waiting for.
‘Bro is stable.’
I closed my eyes. The relief and the warmth of the room meant that I finally slept, until 7am when the doors were unlocked and people started to arrive at the airport. I made my way to my gate, knowing that in just a few hours I’d be by Hussein’s side.
CHAPTER 25
Until the end
By the time I reached Cardiff Hussein was out of the woods yet again. But the close calls were getting more frequent – and mo
re serious. As a family we carried on regardless, with an ongoing hope that we could beat this thing, but deep down we were getting more and more worried. And so were the doctors.
When Hussein had his operation in 2006 the doctors had explained to us that it was only a temporary fix. As Hussein continued to grow, his heart would too, and they didn’t fully know the effect that would have on his condition. Now, they could see that his heart was having to work too hard. He struggled daily with his breathing, and the constant resets couldn’t carry on forever. They were simply running out of options.
Hussein confided in me that he was starting to have dark thoughts. He knew that his heart was warning him that it couldn’t cope, and he feared that sooner or later something would give. But he never told anyone else these fears, least of all Mum and Dad. It was the road he was on, and he had to accept it.
Instead, he continued to throw himself into his roles as governor of the two hospitals. While everyone else worried about the future, Hussein’s worries were more to do with the present. How would he get to his meetings? Would he manage the stairs? Each time he stayed in hospital he worried that he was missing our night time chats. And of course he worried about Mum and Dad. I could tell the effort it took him to show them he was ok okay, putting on his usual antics throughout the day. I once found him reading papers before a meeting while hooked up to an IV in bed in Cardiff. But still he wouldn’t give up. The most important thing for him was to keep giving.
The doctors started talking about another operation. But this time they couldn’t just replace valves – it would have to be a transplant. This was a huge decision, and constantly thinking about it put a strain on all of us. We all thought Hussein was crazy when he started planning a holiday to Morocco for the whole family. Wasn’t he listening to the doctors? To an outsider it looked like he was pretending nothing was wrong, but I knew the real purpose was to give us all a break. All he wanted was to sit in the sun for a week with his family and put all thoughts of operations out of everyone’s mind. He needed a rest from the constant hospital visits and medical discussions. We all did. Was he planning this holiday as one last hurrah? I wondered how many battle scars someone could face before they wave the white flag and say, ‘Enough.’