The Painful Battle for a Painless Death
Omid suffers from a rare nervous system disorder that will slowly and painfully kill him. He's crowdfunding a legal challenge for the right to die how he wants.
All photos supplied by Omid
Every day, in a care home on the outskirts of London, 54-year-old Omid sits in his bed and thinks about how to die. He has Multiple System Atrophy (MSA), a rare nervous system disorder. His brain is deteriorating over time, but Omid still feels like he can remember everything. He is bed-bound and has great difficulty controlling his breathing and bladder. “I feel bad”, he says. “It’s getting worse and worse.”
Omid (who wanted to keep his surname private) would kill himself if he could, but the fact is he can’t. He has tried. While living with his mother and younger brother in 2016, and feeling worn down by his pain and suffering (it takes many years for those with MSA to die), he took an overdose of pills. His mother found him. He was later admitted into hospital where he vomited up the pills.
Since then, Omid has been in a hospice, fighting for his right to die. He wants to force a change so that he, and others like him, can be allowed an assisted death. So far, he’s raised over £34,000 on the legal crowdfunding site CrowdJustice. “I have set up this page,” he writes, “because I need help to have a dignified death. This requires a change in the law.” And so Omid – like Paul Lamb and Tony Nicklinson and many other right to die campaigners that have gone before him – has brought a legal challenge to change British law.
When I arrive at his hospice on a Tuesday afternoon, he’s watching an American TV show on YouTube. Propped up in his bed, his laptop sits in front of him and he listens to it through headphones. In the corner of the room an actual TV is on, with the sound turned down. “It’s the only thing I can do now,” Omid tells me. “I can’t read anymore so I just have my computer and the TV.”
Wearing glasses, a sweater and sporting a salt and pepper beard and a shock of salt and pepper hair, Omid resembles a kind, thoughtful dad on his Sunday off. He eats one meal a day at the hospice and his mother regularly brings him a special kind of candy he likes. Underneath his blankets, his legs are thin. He has a pen that comes out of his phone, letting him write emails and messages.
Omid is a British citizen, but was born in Iran. He came to England with his mother and stepfather when he was 12 years old. The plan was to learn English and return home, but the Iranian Revolution happened and his family stayed in the UK. “If I had gone back I know I would have been killed by now because I would have had to go to war,” he explains. “That’s what happened to some friends of mine – they had to go into the army and they died in the war with Iraq.”
At 17, he started to work and eventually became a successful local businessman. “When I was younger, I was only thinking about making money,” he laughs, though he found time to meet his wife at the age of 27. They had three children together. When he wasn't working hard and being with his family, Omid played tennis at 6AM every weekday morning.
It was his wife who noticed the early signs of Omid’s disease. His business was hit hard by the financial crash of 2008 – “I lost everything,” he says – and as he tried to regain a footing for himself and his family, he began behaving differently. He would scream in his sleep and hit his pillow – something Omid tells me his eldest son witnessed, much to his shock. His speech began to alter and though doctors initially thought it was simply a sign of stress, by 2014 he had been diagnosed with MSA.
Omid has been unable to stay close to his family since his diagnosis. In March 2015, he separated from his wife, not able to bear her and the children seeing him in his condition. He is ashamed of his condition and though he is open and friendly with me, he apologises more than once for his speech. His wife still visits irregularly and talks to Omid for hours, but he doesn’t want his children to see his condition, and he asks her not to bring them.
“Do you miss them?” I ask.
“Yes, yes,” he says, with a long sigh that comes from deep within, “I miss them a lot. I lost everything. Everything. I left my wife. I left my family. I left my manhood. I left my business. I left everything. I can’t provide for my family. That’s really bad for me. I have to do my responsibilities and I can’t do it.”
Omid’s solicitor, Saimo Chahal, has become the QC that people involved in right to die cases come to. She represented Debbie Purdy, who had multiple sclerosis and who in 2009, won a ruling to get clarification on whether her husband would be prosecuted if he helped her to end her life.
Chahal then represented Tony Nicklinson, who was paralysed and wanted to end his life but could only do that with help. Nicklinson lost and, devastated by that loss, ended up refusing nutrition and hydration until he eventually died. After Nicklinson, Paul Lamb picked up the fight to change the law in Britain to allow assisted dying in certain cases. Now we have Omid.
This can be uncomfortable territory for many. The finality of death and the idea that someone could die when they didn’t want to weighs heavier than the suffering of those still alive who would rather be dead. As Chahal points out, “The argument is always: if the law changes, the weak and vulnerable will suffer.”
The fear is that family members or a care system stretched to breaking point could pressure people who don’t want to die into ending their life. “In order to address that argument,” Chahal tells me, “we want to present evidence from experts to show that in the regimes in which the law has been changed, that is not what has happened.” Besides, she adds, a change in the law would also see an introduction of a set of safeguards that prevented the kind of “slippery slope” arguments those who oppose assisted dying conjure up.
The courts are currently in the process of determining whether the expert witnesses Omid’s lawyers have lined up for him will be allowed to give evidence in person. The whole process is likely to last into the summer.
“Even if the law changes, I won’t be able to use it because it will be too late for me,” Omid tells me. “My only hope is that the law changes and that people keep talking about human rights.” On his CrowdJustice page, Omid has recently written to his supporters to tell them that he plans to go to Switzerland to end his life:
“It is torture for me and I don't understand what is the use of all this suffering. The funny thing is that those who are against me say they are doing this in the name of human rights. Whose human rights? Not mine it seems”.
Back in the care home, I ask Omid if he is scared to die and he tells me he isn’t, that it will be a relief. He doesn’t describe himself as religious but he does believe in God. What happens next, I ask him? “I believe in life after death,” he says. “It’s in God’s hands. The most important thing is that all the suffering and loneliness will go away and that is the most important thing. Anything is better than this.”