At 42, I caught a common cold – then I forgot 20 years of my life

It began in 2021 when I caught a common cold. There were the usual symptoms: coughing, a runny nose, and generally feeling unwell. I took myself off to bed and, for the next day and a half, refused to get up, sleeping pretty much all day and night. I couldn’t even wake to eat. My anxious husband Scott brought me a bowl of soup. I started to cry. “I’m so tired,” I told him, then went back to sleep. The next morning, my life changed forever. Scott couldn’t wake me, so I was rushed to the hospital near our home in Essex, where I began having seizures and was put on a ventilator when they wouldn’t stop. At first, doctors believed it could be a brain haemorrhage, but tests ruled that out, and after a week of further investigations, they couldn’t diagnose me. I was transferred to the neurological ward of a larger hospital where further tests revealed encephalitis, an often fatal inflammation of the brain. The neurologists said there were many possible causes, such as a reaction to a vaccination, but it was most likely due to my cold and my immune system attacking my brain by mistake. Even though I was still on a ventilator, the seizing continued, so my family and two boys, then aged 11 and nine, were told to prepare for the worst. I was totally out of it; I didn’t know who I was and had no idea my life was at risk. But amazingly, after 16 nights on life support and five weeks in hospital, I was discharged, with MRIs showing that only the front section of my brain had been damaged. Shorts A recovery plan was meant to take place but didn’t. The hospital had accidentally missed me off home assistance to help me walk, talk, feed and dress myself. Scott had to take compassionate leave from his job to effectively become my stay-at-home nurse. The burden on him was huge. He had to get up in the middle of the night when I needed to use the loo, as I couldn’t bear my own body weight. He had to watch our savings shrink as mortgage payments went out and my income from my freelance editor job stopped dead. He was the main point of contact for my extended family for hours each night about how I was recovering. Meanwhile, I’d lost all dignity. Scott adapted our shower with a seat and helped me wash. Inside I used a walking frame; outside, a wheelchair. I hated both: I’d always been a keen runner. It was slow and frustrating. By the time assistance was offered, Scott had done most of the work. Five years later, I’m now 47, and my life is back to normal. Except that it isn’t. I have no real independence – encephalitis means I’m now epileptic – so I can no longer drive and must rely on Scott to take me pretty much everywhere. If the boys ask to go for sleepovers and Scott is away on a business trip, I can’t take them, and it would take hours by bus and train. Encephalitis has damaged a part of my brain that stores my memories. I don’t remember my wedding day, the days my children were born, nor our family holidays. Claire can’t remember key memories in her life, like her wedding day, and doctors say if the memories haven’t already returned, they probably never will (Photo: James Davidson Photography) While devastating – I’ve been told that if my memories haven’t come back by now, then they’re gone for good – this is not even the hardest part about living with the condition. My day-to-day forgetfulness is. It affects my family life, friendships, and work. Every day, I wake up to my morning text from Scott saying: “Tablets!” I take my antiseizure meds before Scott messages again. “Please only order Lamotrigine, we have plenty of Levetiracetam.” I open the NHS app and order both, already forgetting what he said. If I miss his morning text and forget to take my meds, I realise when it’s too late, as pins and needles run down my body due to abnormal electrical activity in my brain. I go downstairs to find notes littering the kitchen. “We had risotto last night,” says one of my handwritten scrawls, stuck to the fridge door. I open the freezer and pull out some bolognese, then check to see if we have spaghetti. There are three unopened packets, along with a note stuck to the inside of the cupboard that says: “We don’t need any more pasta!” I’ll still forget and buy more. I head upstairs to work from my home office and pass photos of friends I’ve known for years, two of whom I never see anymore. Even though they live just an hour away, they don’t drive to visit, knowing full well I can’t be behind the wheel. Since my diagnosis, messages from them have ground to a halt. The number of birthday cards have depleted. On my 47th birthday last September, I had a quiet meal with Scott and our two boys. Before I went to bed, I was scrolling through Instagram and saw one of my former best friends had shared a photo of the whole group, without me in it, with the caption: “Besties forever.” That hurt. My 16-year-old son, Jack, snaps me out of my reverie. “Where’s my X-Box controller?” he demands. I confiscated it last night when he refused to turn it off and I’ve forgotten where I’ve hidden it. I know I wouldn’t have written a note because Jack would see it. Or did I write a note and hide that as well? Maybe I wrote a note on my phone… which I can’t find anywhere. ‘I’m lucky that I can still do my job – and do it well – thanks to all of the notes I make, which surround me as I sit at my desk,’ says Claire (Photo: Claire Muffett-Reece) I ring Scott’s work from my other son’s phone and ask him to call my mobile. “I’ve told you, you can ping it from your watch,” Scott says. I can’t remember how. “I showed you yesterday,” he sighs. I can hear his frustration and I’m instantly furious. One major side effect of encephalitis is a very short temper. I slam down the phone, not before shouting: “I’m not doing this on purpose!” Once I eventually find my phone, I sit down at my desk and get to work. I read an email and open a web browser. I can’t remember why. I go back to the email to remind myself. As I’m re-reading it, the phone rings and I scream. Loudly. Another side effect of encephalitis is sensory overload. I don’t know why, but the phone gets me every time. It’s like I’ve never heard the sound before in my life. Now, colleagues will WhatsApp, “About to ring you!” before they call, just so my neighbours don’t think I’m being burgled. Scott prefers a more light-hearted approach. We’ll be in the car, and he’ll put it in Sports mode without me knowing, so we go from 30-60mph in around 1.6 seconds. I scream and swear at him. “We’ve got to get a compilation of your screams from the car camera,” he jokes. I must admit, it is a welcome moment of levity, instead of rage. I’m lucky that I can still do my job – and do it well – thanks to all of the notes I make, which surround me as I sit at my desk. My colleagues are aware of my medical history, and they understand why I email to ask about something they told me over the phone earlier on. The publisher regularly reassures me I am just as capable as I was before my memory loss and I take great comfort in this. After work, we finish our spaghetti bolognese leftovers for dinner, my son finds the X-Box controller hidden in our pan cupboard, and I leave myself a note on the fridge door saying: “We had spag bol last night.” I open Netflix and click on The Wolf of Wall Street. “Again? We watched that last week!” sighs Scott, but I can’t remember watching it at all. But before my short temper kicks in again, our phone alarms go off. “Tablets!” says Scott, grabbing them for me. We watch my choice of film because, Scott understands, people with encephalitis crave familiarity – and I’ve seen this one enough times that I can actually remember the storyline. Then, we’re off to bed, before I wake up the next morning to his medication reminder. It’s a bit like Groundhog Day, except that unlike Bill Murray’s Phil Connors, I feel I’ve lost the plot.