'I woke up without my memory'

Sudden illness robbed Theresa Robinson of her past. She tells Kate Hilpern how she rebuilt her life

(David Sandison)

He seems to hang around a lot. Are we together or something?" Theresa Robinson was talking about her husband, who had come to visit her in hospital. It had been only a few days since she had come round from a three-month coma, so nobody was expecting miracles. But Theresa recalls her mother – to whom she'd asked the question – looking pretty concerned nonetheless. "I recognised my parents no problem, but here was a man who might as well have been a stranger," Theresa remembers.

It was to be the tip of the iceberg in terms of loss. Having suffered meningoencephalitis – a serious neurological illness which led to her coma – Theresa had not only lost much of her memory, which meant she couldn't recognise many friends and family, but some of her most basic skills and abilities including speech and walking. "I remember an overwhelming feeling of not making any sense of anything around me," she says. "I had to re-learn everything, despite being 23 years old. I couldn't even support my own head."

Nine years on, you'd never know. Theresa is quietly spoken, but there's an inward assertiveness and she speaks eloquently, walks with apparent ease and recalls the past just as you'd expect any 32-year-old to. "The doctors have been amazed," she admits. "I was told back then that most people don't even survive chronic cases of meningoencephalitis, let alone live a life beyond being in a vegetative state. But the rehabilitation process has been extremely hard work. Just learning things like tying shoelaces can be really hard. Emotionally, it's taken its toll, too. My marriage didn't survive it."

It was the day before the Twin Towers were hit that Theresa's first symptom revealed itself. She was happily living with her husband, and she was working as a legal executive for a local solicitors' firm. "I remember arriving at work that morning feeling really hyper. I thought I'd chill out by quietly doing some photocopying, but as soon as the green light came on, that was it. I went into this massive fit."

Theresa, who lives in Rayleigh, Essex, was referred to a specialist, but in the meantime, she started acting strangely. "It was only little things like swearing at my parents and becoming obsessed with thinking my husband had opened his birthday presents before his birthday, but they were totally out of character."

Despite seemingly endless tests, doctors were none the wiser. But by the following summer, the fits were taking over her life and one day, she had one so strong that she slipped into a coma. Even then, it took two weeks for Theresa to get diagnosed, at which point she was transferred to the Royal London Hospital. "It must have been hell for my husband and parents, not least because they often had to keep throwing ice over me to keep my temperature down. Eventually, they were told things weren't looking good and I'd be returned to my local hospital, where they should prepare themselves for my death."

What happened next was straight out of a Hollywood film in that, against all odds, she came round. The problem was that when she went to speak, nothing came out. Except, that is, for swearing. "Apparently that's quite common," she laughs. "I was told it's because everything is so frustrating and swearing can be an instinctive response."

The physiotherapy took years. "I had a very fancy wheelchair with a headrest, so I was mobile from early on, but it was much more satisfying when I learnt to move my own body and eventually my legs."

Fortunately Theresa liked the man whom she was told was her husband. "He'd play dominoes with me and seemed nice. I had a sense of familiarity about him, too, or maybe that was just the trust I felt I should have in him, having been told by my parents that I'd married this man. I certainly wouldn't say I felt close to him or that it felt natural being with him. I didn't let on, though. I acted like I felt a wife should, hoping that something would eventually click."

Their wedding photographs were the breakthrough. "Mum and Dad brought them into the hospital and one day, I had a flashback, which led to more memories. It was such a relief, although I think, looking back, it was too late. The experience damaged us and wasn't helped by a combination of me feeling frustrated at not being able to do things and him not being able to handle my frustration."

Seven years on from their divorce, Theresa still wishes he'd been more understanding. The charity Headway Essex had proved to be a huge support to her parents, but Mick wouldn't consider charity support. "I think that was his downfall and I wonder if, in the end, he realised that, because just after Christmas last year, I heard from my aunt that he'd asked how I was. That might not sound significant but it was the first time he'd seen anyone I know and asked that. He since died of a heart attack related to epilepsy that he'd just been diagnosed with when he spoke to my aunt. I wonder if he finally realised what it was like to feel that your head is all over the place."

One by one, the friends Theresa had literally forgotten regained a place in her memory, but as with Mick, many of the relationships disintegrated. "I think a lot of them were frightened by the whole thing. A couple stayed close but I'm a different person now and have made the kind of friends who perhaps I wouldn't have before."

It was suggested to her in 2007 that she start attending the Papworth Trust Centre in Basildon, Essex to improve her social skills and confidence. "It's a day centre for people with physical and learning disabilities and I was less than keen," she admits. "I suppose I had a stereotypical view of disability and didn't see myself as disabled. But I agreed to come and learn about cooking and IT and I quickly made friends and grew in self-esteem. My leaning towards computer skills came back and I completed various qualifications." Staff noticed Theresa's natural ability at supporting others and she was asked if she'd like to volunteer – a role that has since led to a part-time paid job as project worker.

The long-term effects of Theresa's brain damage include fatigue, balance problems and ongoing memory loss. "My biggest problem now is short-term memory. I have to write everything down and stick to a routine. The tiredness can get me down, but emotionally, I'm pretty positive really. I have even met someone else, although I'm quite scared of feeling so close to someone again. What happened to Mick and I took away my trust in relationships. We agreed to stand by each other in both sickness and in health, but what happened to me tested that to the hilt and it turned out to be too much for him."