Twelve months ago, Sandra Ruiz and Karim Mussilhy were pounding the streets around Grenfell Tower in desperate loops. They didn’t know each other, but both had close relatives missing on the top floors of the building, which had been ablaze since just before 1am.

They pinned up missing posters and tried vainly to squeeze information out of the authorities on the ground. Ruiz’s niece, Jessica Urbano Ramirez, 12, had called from the stairwell but wasn’t heard from again. Mussilhy’s uncle, Hesham Rahman, 57, who was like a father to him, was gone too.

For Ruiz, Mussilhy and hundreds of other bereaved relatives and survivors, the last year has been like nothing they have ever experienced or surely will again. Asked to put their year into single words, they offer “exhausting”, “draining”, “disappointing”. And then, extraordinarily, “hopeful”.

“He’s my little brother,” Ruiz said of Mussilhy. “We have got to know each other’s families. We eat together. We argue. We cry, we laugh. We talk to each other in the middle of the night.”

“Too much, I think,” said Mussilhy, laughing. “But it is a beautiful thing that has come out of it. That’s the strength of the continued work: having each other.”

Ruiz, a school business manager, and Mussilhy, until recently a manager at an Audi dealership in Mayfair, have together endured grief, public battles with Downing Street and private battles to keep their families and communities from falling apart. It has taken its toll mentally, as it has on thousands of other people: Ruiz struggles with her memory, while Mussilhy has had sporadic bouts of feeling very withdrawn.

Wednesday 14 June 2017 was supposed to be another working day. At her home in south London, Ruiz was woken by a call from a family member and switched on the TV to see the tower on fire. “I thought everything would be under control,” she said. “I have always been very trusting in the authorities.”

Realising that the flames were jumping from flat to flat without any resistance, she scrambled to Grenfell, arriving at around dawn.

In west London at about 6am, Mussilhy was showering. “My wife screamed. I thought she hurt herself. Then she said Grenfell Tower’s on fire.”

His uncle wasn’t answering his phone; neither was his grandmother who lived nearby. He went to the scene, checked the rugby club, a nerve centre for searchers, and the hospitals but found nothing.

Facebook Twitter Pinterest People outside Rugby Portobello Trust, known as the rugby club, after the Grenfell fire. Photograph: Alicia Canter/The Guardian

What followed for both of them was weeks of purgatory: the growing suspicion that their loved ones had not made it, but not knowing for sure. “Those were the worst weeks,” said Ruiz. But incredibly, there were already traces of solace.

The day after the fire, many of the bereaved were gathered outside a pub and Ruiz, who describes herself as a reluctant public speaker, stood on a chair and led them in the Lord’s prayer. The next day, the Muslim community prayed in the same spot and Ruiz and her family blocked traffic for them.

“It encapsulated what an amazing community we had,” she said. “We were sharing grief but also looking out for each other.”

Volunteers were coming from all over the country, but there were agitators too. An angry crowd, including masked men, stormed the town hall three days after the fire. Those waiting for news of loved ones feared that a riot would make it harder to get answers from the authorities.

“I was running up to these kids pulling the balaclavas off their faces,” said Mussilhy. Ruiz pushed one in the chest and told him to “stop right there”.

Mussilhy struggled when he went back to work after a fortnight among the gleaming Audis in Mayfair. “I felt like I’d deserted my family,” he said. “I didn’t want to speak to customers. What did they want to talk to me about cars for? Did they not know what was going on?”

He lasted no more than an hour before he got up and went back to Grenfell. He walked loops around Ladbroke Grove, the Westway and Latimer, sometimes 10 times a day, looking for any trace of his uncle. He let a Sky News crew follow him, and a viewer got in touch with footage taken by one of Rahman’s neighbours, which seemed to show him inside the building. Another clip came in with the sound of Rahman comforting a child as the tower burned. “It broke us,” Mussilhy said. “I said to my nan that he was a hero.”

The lack of information from police, hospitals or the council was deeply frustrating. On 19 July, survivors were inside the town hall to observe the first full council meeting since the disaster. A new leader of the council was being elected.

Facebook Twitter Pinterest Protesters outside Kensington and Chelsea town hall on 19 July. Photograph: Wiktor Szymanowicz/Barcroft

Ruiz was with Ed Daffarn, a Grenfell resident who had predicted a major fire, and they had been locked out of the chamber in a fire escape. Only after Daffarn hammered on the door for a long time were they eventually let in. They felt it couldn’t have summed up the council’s attitude to them any better. “We were incensed that the survivors have been put in an area where the fire doors were blocked,” Ruiz said. “I lost all faith in [the council] from then on.”

About 70 of the bereaved and survivors formed a WhatsApp group, which pinged away “until two, three in the morning, us just talking to each other,” said Mussilhy. More and more issues were coming up. The future of the tower, the police investigation and crucially, trust in Sir Martin Moore-Bick’s public inquiry. WhatsApp was where ideas, news stories and “rants” were shared in confidence and support was always available.

“I would be looking at my WhatsApp and then a customer would want to talk about doing a deal on an Audi Q5,” Mussilhy said. “I was like, really?”

Grief came in waves. “There were days when I was blank, emotionless,” said Mussilhy, who laid his uncle to rest in September. “When I was at work I would feel anger because I was being made to forget. People were told: don’t talk to Karim about anything to do with Grenfell. I hated that. I wanted to talk about what was going on.”

By early autumn, tense early meetings with Moore-Bick had made many feel “he’s not really understanding us, he doesn’t understand what we’ve been through,” said Ruiz. They felt isolated.

On 2 December they created an online petition calling for “additional panel members with decision-making powers to ensure those affected have confidence in and are willing to fully participate in the inquiry”. They got to 26,000 signatures, but needed 100,000 to trigger a parliamentary debate.

“We couldn’t understand how such a huge thing wasn’t getting national support,” Ruiz said. “We had had an awful week. We were exhausted. We were trying to plan Christmas.”

Facebook Twitter Pinterest Sandra Ruiz and Karim Mussilhy deliver a petition to 10 Downing Street in December. Photograph: Daniel Sorabji/AFP/Getty Images

The six-month anniversary service in St Paul’s Cathedral was “very public, very raw”. Three days before Christmas, Ruiz was shopping on Oxford Street, “trying to maintain normality”, when Theresa May said she didn’t want the panel. “It was a real low blow,” she said. “It ruined Christmas.”

There were dark periods where they felt unheard and unsupported. In February, Mussilhy happened to be watching the Brit awards when the singer Stormzy rapped: “You thought we just forgot about Grenfell.”

“I just froze. My wife was grabbing my arm. It was like, wow!” Mussilhy said. Stormzy tweeted that he wanted the petition to get to 100,000 signatures, and within a few hours it did.

“It was the best night in a horrible year,” said Ruiz. “But we were elated about something that shouldn’t have been a problem.”

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In March, Mussilhy put on a helmet and mask and was taped into a forensic suit. He was going into his uncle’s flat in Grenfell Tower. It was one of the hardest moments of his year.

“When I got to his flat it was unrecognisable, awful. It gave me a sense of how the survivors must have felt and the helplessness of the adults and children.”

For a couple of weeks, he stayed at home and didn’t feel well. “It took a lot out of me. In a way I was glad I did it, I said a prayer, but I wouldn’t do that again.”

Campaigning, lobbying and supporting each other has become a full-time, seven-days-a-week occupation. “If there wasn’t this group constantly banging on the doors then nothing would happen,” said Ruiz.

For the anniversary, they want to rest. It sounds simple: “Just do nothing. Be with each other.” But they all know the day will be anything but easy.