It is a struggle but I'm determined that it won't beat me. I have always been a healthy person. But in May 2004 I developed flu-like symptoms: I was vomiting, had a high temperature and general aches and pains.
My husband tells me that over the next couple of days I became increasingly confused and was admitted first to Peterborough District General Hospital and then to Addenbrooke's in Cambridge.
After further scans and tests my neurologist told my anxious family that I had contracted viral encephalitis, which is an inflammation of the brain. As a result the temporal lobe — the part of the brain which governs memory — was damaged.
Though he couldn't be certain of the cause, one possibility was that it had been triggered by a dormant herpes simplex virus, which many of us carry, and which had suddenly become active. This is the virus which can also cause coldsores, though I have never had one.
Alternatively I could have been just randomly exposed to the virus. Whatever the cause, once inside the blood, it migrated to my brain and started to multiply. The body then reacts by triggering a reaction from the immune system.
This causes the brain to swell and it is this combination of infection and immune response that creates the symptoms of relatively rare viral ence ephalitis.
I was in intensive care for five days and doctors gave me two weeks of anti-viral medication to try to stop the virus from spreading. But as I cam me round after several days, it became clear that though the virus had been treated, it had damaged my brain and caused memory problems, including a condition called prosopagnosia — the inability to recognise faces.
As my family gathered round my bed, apparently my first reaction was one of confusion and blank incomprehension. Quite simply, I didn't know who they were.
As I grew stronger and more able to communicate over the next few week, they brought in photographs and wrote potted biographies of everyone.
The faces staring out of the pictures meaant nothing. And as soon as I read something, I instantly forgot it. Yet some deep instinct must have told me these people weren't complete strangers since I didn't feel threatened by them or emotionally cut off from their entreaties.
The children fought hard to hide their distress but had been warned that I wouldn't recognise them. Instead they just talked to me normally, calling me Mum and asking how I was feeling.
Over the next few weeks I had to slowly re-learn basic skills. At first, wheen food was put in front of me I'd even forget to pick up a fork.
Being a doctor himself, Ed ultimately knew that my progress depeended on rehabilitation not cure because the damage to the temporal lobe was more or less permanent. And, two years on, scans have confirmed this has not changed.
Frustrating
In other words, I had to re-learn everything from scratch. It was embarrassing and frustrating because even the simplest instructions were difficult to follow unless I wrote them down.
Apparently I was always happy to see Ed and the children even if I didn't always know who they were. But there were times, when I thought Ed was also someone called Stephanie for some bizarre reason.
After a few weeks I was allowed home for the day to celebrate Struan's 16th birthday. We just had a family meal — a simple act of survival and celebration. But it was so painful not being able to recall anything about my fine son.
After about 11 weeks the doctors discharged me because I was well enough to continue my rehabilitation as an outpatient.
When I first arrived home I just couldn't find my way around. I edged suspiciously around what I was told was our fairly new kitchen — a kitchen I had chosen. Yet as I ran my hands over the white surfaces I felt nothing.
Though I was overwhelmed, I knew that if this really was my home I didn't want to be a stranger in it and had to somehow make it familiar to me.
But if I so much as wanted to make a cup of tea I had to search high and low for the tea bags. I began making furious notes about the simplest things, such as how to boil an egg.
The family tried to cushion me by trying to do everything for me but it just felt like I was being shut out.
They had to forcibly hold back while I tried to fathom how to use the dishwasher. But once I had re-learnt a 'skill', I could usually remember to do it because it was routine. But memory can be random and at times I'd simply forget.
Strangely, not all of my long-term memory had been affected. I could recall my childhood in Sheffield and how it cost two pence to go to school on the bus.
Yet when I finally plucked up the courage to take Georgia to the local village school, just a three-minute walk away, I had no idea how to get home. Luckily, another parent spotted my confusion and guided me back. I felt so useless.
Thankfully, just after school finished in July 2004 we went on holiday to France. This had been booked a long time before I fell ill and Ed decided there was no reason not to go.
Even though I now struggle to recall the trip, it meant we spent two weeks together as a family, getting to know each other in a place that was new to us all.
They even let me do some cooking because the kitchen was strange to all of us, which made me feel so much better. Again a deep-seated maternal instinct must have kicked in because I was happy feeling needed and had an urge to look after everyone.
Depression
At first I was almost euphoric at this attempt to reclaim my life. But a few months after returning from France I was overcome by a huge wave of depression. I felt sad and left out and couldn't stop crying, so I was prescribed anxiolytics for my anxiety.
Since being discharged from hospital I had been seeing a clinical psychologist, Bonnie-Kate Dewar, at Addenbrooke's every couple of weeks. Over the course of the year that followed, Bonnie-Kate taught me coping strategies for every day life and how to look for familiar markers.
She showed me how to identify people not only through their physical appearance but also by their mannerisms, colouring and, of course, their environment. I always associate Ed with a shark's tooth necklace he wears — it gives me a clue if I struggle to recognise him. It's awful having to rely on a bit of jewellery to identify your husband. But I know my place is with him and the children and throughout this ordeal I've never been tempted to walk away from this difficult situation.
It's so strange. I have a profound emotional connection with my husband and children when I am with them. I have feelings of love and affection when we are together. But jarring with that is the initial moment when I see them, and purely on their visual appearance, I don't recognise them.
Six months after my first appointment I took the bus to Addenbrooke's by myself — using copious notes, of course — and it was such a milestone in my pursuit of independence.
I hated the idea that my condition was interrupting family life. So in February 2005 we all went skiing — another holiday that had been booked before I fell ill. However, on the first morning I went up the ski slope and blacked out at the top. I had to be brought back down on a snow stretcher.
Even though I was fine afterwards, the inexplicable blackout put an end to my skiing. So I spent the rest of the holiday playing with the children from the other family we had gone with — because they were too small to ski — and their mother, my friend, whose name I've forgotten.
I'm grateful at least that in spite of such challenging times the emotional connection with my family grew stronger, even if I struggled visually.
I did feel nervous about sharing a bedroom with my husband and a house with all these young faces I didn't recognise. Even now, if one of the children is in the house with a friend, they have to remind me who is who and sometimes I can only interpret one by the absence of the others.
It took about 18 months to try to get the children's names right. I felt guilty and frustrated and, at times, it must have been heartbreaking for them. But we all understood why we were in this situation.
However, as the months passed I was constantly aware of what I was missing. My therapy sessions with Bonnie-Kate continued and I felt increasingly empowered by what she taught me. After about a year we relocated to the Oliver Zangwell Centre, a neuropsychological rehabilitation unit in Ely.
This involved some group sessions and it was enormously helpful mixing with people who were in a similar position to me who have lost their memory through illness or injury.
Memory techniques
At the centre there were three intensive months of memory techniques and I attended four days a week. I was shown how to use things such as voice, mannerisms and personality to help me recognise people.
I also learnt basic techniques about how to deal with difficult situations. For example when a person comes to my door who clearly knows me and asks how I am, I now know to ask them 'who would like to know' while making eye contact with them.
My thoughts also began to turn to the career I had 'lost'. I knew that I had worked as a school nurse and would look through the nursing magazines that were still delivered to my home. It was so frustrating not to be able to tap into the huge bank of medical knowledge I once had.
So when I read about a nursing refresher course in Birmingham, it seemed a perfect way to try to make a baby step back towards my career.
My family thought it would be too much for me, especially since it meant staying overnight in a hotel. But I took a phone and made notes about every step of the journey. It was only like finding your way in a foreign country.
At the lectures I took masses of notes and kept re-reading them, hoping to retain something. Unfortunately it didn't trigger any of my lost knowledge.
That didn't surprise me, though. A few weeks before a friend had taken me to one of the schools where I used to work. While we sat drinking coffee in the office, one of the members of staff rushed in to say a little boy had come out in red spots.
Instinctively they turned to me as the former school nurse. But I couldn't remember a thing and had no idea.
I felt an important step to getting more independent was being able to drive.
Though it took me very little time to relearn how to use the car, I had to have a DVLA medical to check I was actually physically capable of driving.
The panic came not in handling the car but in remembering where I was. On one occasion I only went to my local dentist but couldn't find my way home. Determined not to ring Ed, I had a good cry in a lay-by before stopping a passer-by for directions.
Unfortunately in November 2005 I had a seizure one evening at home. Apparently I started shaking and twitching before losing consciousness, which must have been terrifying for the family. It came completely out of the blue and I was immediately referred back to my neurosurgeon at Addenbrooke's.
After an EEG, to record electrical activity in the brain, he told me I'd had an epileptic fit.
Though I was devastated to hear this, apparently this is one possible side-effect of viral encephalitis and I'd been lucky to have got this far without having one.
Though I haven't had one since I am no longer able to drive and really miss that independence. I am also taking medication for epilepsy.
I want Ed and I to be a normal couple and don't want him to feel burdened by a needy wife. So I've learnt to find ways of coping with potentially stressful situations.
When we recently went to a friend's wedding, I stayed by his side for a time. But not wanting him to feel claustrophobic by my inability to socialise easily, I then found some little children running around and went to sit near them. I adore children so I just played with them. I find the company of little ones simple, undemanding and therapeutic.
I would dearly love to get back to work and after doing some voluntary work at local schools as part of my therapy I realise that what I need above all is routine.
I desperately want to be a nurse again — apparently I always used to say I was born to it. I accept the damage to the temporal lobe can't be repaired but I would love to find a way to make use of the skills which once came so naturally.
I still have an active mind but I need to find the right way to use it. I can't watch television or read for pleasure because I find it hard to follow the thread of a plot.
Even the noise of my boisterous teenagers makes it hard to concentrate on the simplest things.
But despite all these challenges, what has saved me has been the enduring devotion of my husband and family. Ed and I often talk about the person I used to be. When he tells me I was an effortless organiser and consummate multi-tasker it seems utterly incredible, considering now I can even forget my children's names.
But I have to concentrate on the positive.
Feeling bitter about the cruel random nature of my illness is pointless. With the help of my wonderful family I intend to focus on the future — and remember everything I can about the next chapter in my life.
• The Memory Experience:Me And My Memory will be on Radio 4 on Wednesday July 26 at 9.30am.
11 people have commented on this story so far.
Here's a sample of the latest comments published.
I was diagnosed with encephalitis 8/31/03 at the age of 34. I can related to so many of the things you described in your story. I also have permanent damage, short term memory. It is frustrating, very frustrating. I often think back to where I was in Sept, 2003 and where I am today and things could have been worse. I was told by specialist that I am a "Living Miracle" Sometimes that is what keeps me going, because I do get so frustrated. It is hard, but like yourself, we have to do it. I am a single parent, twin boys that are soon to be sophmores in highschool. They keep me going. Like yourself, I had to learn many things over again - what foods were (I still get teased about pears), driving, etc.., and I still struggle with names and alot of words. I wasn't going to loose to this virus! We have survived!!
- Candi, Mukwonago, WI USA
I was moved to tears reading this story. I can only imagine the work and effort you must have gone through.
My wife is on vacation for a week while I'm here working on a deal. I cannot and could not live without my wife.
To know that something like this is possible and that my wife or I could forget each other saddens me to no end. If something like this happened to me, I think it's fair to say that my life would not be worth living. My wife is my life and without her I have absolutely nothing.
I wish nothing but the best for you and your family.
- Ryan, Chicago, IL, USA
Having no memory, especially of visuals, how is it she was able to read and write?
- P.J.Douglas, Dana Point, CA, USA
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