Family life is far from straightforward for children’s author Thomas Leeds, his wife Sophie and their two young daughters.
In the mornings Sophie might wake her husband, not with the words, ‘Good morning’ but rather, ‘Who am I?’ or, ‘What’s my name?’
If he replies, ‘You’re my wife, Sophie,’ she feels reassured that he is having what he calls a ‘good brain day’ and can confidently leave him in charge as a stay-at-home dad while she heads to her online sales publishing job in London.
If, however, he is having what he calls a ‘bad brain day’, and can’t quite place her, she will arrange to work from their home in Essex so she can do the school pick-up, cook tea and allow her husband the rest he needs for his memory to recover.
This is the reality, she says, of being married to someone with a hidden disability caused by a traumatic brain injury which has left him with face blindness, epilepsy and absolutely no memory of his life before the road accident which almost killed him.
Family life is far from straightforward for children’s author Thomas Leeds, his wife Sophie and their two young daughters
‘People look at Thomas and say: “Oh, you’re not disabled” because he’s so smart, capable and a good communicator, but the disability is very real,’ says Sophie.
‘There are days, when Thomas is not feeling well, or has had a major seizure, when it’s a case of him asking me: “Who are you again?” throughout the day. All you can do is watch him to make sure he is OK, wait for his brain to settle down and for him to come back to us.’
To watch Thomas playing with his daughters, aged seven and four, he gives the appearance of being just like any other devoted, doting dad. Intelligent and articulate, he looks and sounds completely normal — but at times, he loses the thread as we speak, apologising: ‘Sorry, I can’t remember what I was just saying’.
‘My memory can be very sketchy,’ he says. ‘There have been a couple of occasions in the park when I haven’t been able to recognise my own children.’
You would imagine that such a scenario would fill a mother with absolute terror, but Sophie, 38, and Thomas, 39, say they have systems in place to minimise risks and maximise safety.
Thomas may not instantly recognise faces outside familiar contexts, like the home, but he can recognise voices — so in the park the girls know to call out or wave if he is having trouble picking them out of a crowd of kids. When Thomas takes them out alone, he will also take photos of what they are wearing.
‘His camera is always snapping away,’ says Sophie. ‘He takes photos of everything, documenting huge parts of our life to help him remember. He usually recognises me because of my dyed bright red hair.’
Even so, it must be tempting to check in constantly when she’s not there.
‘I feel we do have a lot of trust, but we have to be completely open and honest with each other. If I ask Thomas “How are you feeling?” in the morning then he has to tell me the truth,’ she says.
‘When he’s feeling well, Thomas is actually one of the most organised and well-prepared people that I know. His planning is meticulous because it has to be.’
Thomas adds: ‘Sometimes it might seem like I have forgotten someone completely, but I haven’t, it’s just that I have forgotten their face and I can’t recognise them, so it’s a strange and complex thing.
‘I’m much better than I used to be. Being a parent means you have to be organised, but my memory is sometimes not solid, so I can be quite forgetful. Some days I’m better than others. I can only hang onto a few things at a time. If I try to remember too many things, then it wipes everything.
‘It can be scary and frustrating, but I’m very lucky because I know when I’m having a bad brain day from the moment I wake up. If I have to leave the house then a friend will accompany me.
In the mornings Sophie might wake her husband Thomas (pictured), not with the words, ‘Good morning’ but rather, ‘Who am I?’ or, ‘What’s my name?’
‘I’m very lucky that my wife has a flexible job which means she can work from home, so the girls are never alone with me when I’m not well. For extra peace of mind, I wear a medical alert bracelet with all my details and Sophie’s contacts on it.’
As for their daughters coping with his disability, he says: ‘I’ve always been like this so they don’t know anything different and we’ve explained it in a way they can understand.
‘They know that sometimes Daddy isn’t feeling very well and we have to stay at home so I can rest, but we have many family and friends nearby who help out.’
Thomas was just 19 when he suffered a traumatic brain injury. He was struck by a taxi as he crossed the road in London after a day out with a friend.
Thrown over the roof of the vehicle, he landed on his head; the impact so great it left the bonnet wrecked, the windscreen smashed and the roof concaved.
Rushed to hospital, it was initially thought that Thomas had miraculously escaped with a minor head injury, cuts and bruises, but over the next couple of days he complained of a terrible headache, nausea and severe back pain.
Not only had he broken his back in three places, an emergency scan revealed a large blood clot on his brain. He was ‘24 hours away from death’ when doctors operated.
When Thomas came round, his intelligence, understanding and speech remained unaffected, but every memory of his life before the accident had been wiped.
Scar tissue on the brain also left him suffering from epilepsy and prosopagnosia — also known as face blindness — which meant he no longer recognised his family, friends or the house he grew up in and was left unable to read and write.
Some part of his brain instinctively knew who his family were and registered that they looked familiar, but all facial recognition and the shared memories which bound them all together had been lost.
‘Everything was new to me. I was like a baby,’ he says.
He met Sophie through a dating internet site seven years after the accident.
Sophie recalls: ‘From the start he told me he’d suffered a brain injury in a road accident and had epilepsy.
‘I fell in love with the person he was, not the person he had been or might have been had he not had the accident.
‘He had all those qualities that make you go tick, tick, tick. I never thought about what he couldn’t give me because he gave me so much happiness.’
Sophie’s only fear in those early days was how she would react if she saw Thomas suffering a seizure.
‘Once, before we were meant to meet on a date, a friend of Thomas’s phoned to let me know he couldn’t make it because he’d had a major seizure and I burst into tears,’ she recalls.
‘I was so upset I went round to my eldest sister who said: “Don’t cry about it, he’s got epilepsy, he’s going to have seizures. If you cry about it, you may as well break up with him and not mess him around”. I thought, “Good point, dry your eyes”.
‘I’ve always been a very pragmatic and practical person and later, when he had another seizure with me before we married, I knew I could deal with it. I was worried about him, of course, but not sad or upset for myself.’
Thomas proposed with a ruby and diamond ring on the anniversary of their first date, dropping to one knee amid the Christmas fairy lights of London’s West End and they married in 2014 at Hengrave Hall in Suffolk. The day went ahead without a hitch even though their wedding preparations had to include contingency plans for a ‘bad brain day’.
‘I had to ring up the deacon and explain that if Thomas had a seizure, we wouldn’t be able to get married because he wouldn’t know who I was,’ says Sophie.
‘The plan was that, if the wedding couldn’t go ahead, we would just do it another time and I would have a party for all our guests instead.’
Thomas adds: ‘I was very happy I woke up that day with a brain which wasn’t misbehaving.’
The couple married in 2014 at Hengrave Hall in Suffolk
The couple were thrilled when Sophie became pregnant with their first daughter, even if Thomas kept muddling up his wife with her sister, who was also pregnant at the time.
‘I went back to my natural brown hair colour when I was pregnant so Thomas had trouble telling us apart when we were in the same room,’ says Sophie, who quickly reverted to bright red again to avoid further confusion. The couple moved in with Sophie’s parents in East London during the pregnancy and ended up staying there for two years.
‘We were very lucky to have their help,’ says Sophie. ‘The early years were filled with so much joy but it was also very hard work and I took on most of the childcare burden.’
Today, the couple live in their own home in Southend, Essex, near Sophie’s siblings.
Although Thomas’s epilepsy is well controlled with medication, they live with the constant risk that he could suffer a major seizure in front of the children.
Thomas says: ‘When our daughters have been around me or known I’ve had a seizure, we always talk about it and they have been amazing.’
Sophie adds: ‘Any time they ask, we talk about it. We put it in child language, telling them Daddy will be all right again afterwards.’
His last major seizure happened when their eldest was three and youngest a baby, triggered by the stress, grief and lack of sleep caused by the death of Sophie’s mother from breast cancer in 2018. Sophie was thankfully home at the time.
‘You never want your kids to be frightened, so his parents came round and took the children out for the day. His father, who is a medical doctor, checked he was OK and I watched over him as he lay unconscious on the floor, waiting for him to wake up,’ she says.
‘When he did, he didn’t know where he was. We were in a house with white walls and he thought he was in Spain, with the sun coming in. He thought it was about 2005.
‘I didn’t want to cause him distress, so I said: “This is my house, you’ve not been feeling well and you are ill at the moment.” I had to keep repeating that and he would drift off to sleep and after a while, he was sitting up more, but kept asking: “Who are you again?”.
‘When the girls were due home, I had to tell him that actually, we’re married and our kids are coming home. It felt cruel doing this to him, he was almost like a stranger, but it would have been horrible for the kids to feel rejected by him. He was still very confused, but was able to say to them: “I’m going to be OK”, before they went to bed.’
Thomas has now written a children’s fantasy adventure book inspired by his experience of living with a brain injury.
An epileptic fit is depicted by a blank page with exploding stars, which Thomas says is not only a ‘publishing first’ but an accurate reflection of what it feels like.
‘After my accident I could no longer recognise words and was having to sound them out phonetically like a child,’ says Thomas, who has been visiting schools to celebrate World Book Day.
‘I even struggled to read picture books to my nephew. My challenge every day was to read a tiny bit of my father’s newspaper and try to remember it. I never thought I’d be able to do something like this.
‘But my mantra is that if something is not impossible then you can do it. Disability may be something you can’t get over, but you can learn to live with it. If you can do one thing you can be amazing at it.’
His remarkable book is symbolic of his own journey.
‘It’s not frightening, it’s an adventure. It’s a story of hope and courage,’ he says.
Jayben And The Golden Torch by Thomas Leeds is available now (Hodder Children’s Books, £7.99).