Simple Pleasures: Christmas with a Brain Injury

by Catherine Jessop

Christmas is a time when we revel in the simple pleasures of celebrating with the same songs, the same food, the same traditions. We look back on Christmases past, and think of those to come. For me and my family, Christmas has a particular poignancy, as it was on Boxing Day 2016 that my husband Alan suffered his first cataclysmic seizure, leading to a year in hospital, a diagnosis of autoimmune encephalitis and a permanent brain injury. As a result, he has no short-term memory and awful as this sounds, it can lead to much hilarity, since he has no idea of the date. He can announce on Boxing Day that he’s “really looking forward to Christmas,” having completely forgotten all the excitement of the previous day. And this is a man who often remarks during December, when the house is full of festive decorations, that “we’re having a lovely summer holiday this year, aren’t we?”

One of the reasons that I wrote my book Pulling Through: Help for Family Navigating Life-Changing Illness was that I found the world of brain injury and hospitals utterly bewildering, and wanted to give other families a handbook of tips and advice. Becoming a full-time carer was a steep learning curve. The words – such as ‘confused’ or ‘disorientated’ – that doctors use to describe the effects of encephalitis are far too gentle, compared to the harsh reality.

‘Confusion’ sounds mild, but anyone who’s experienced it, will know that it’s not. And the issue is not so much that Alan’s confused, but that his brain believes what it’s thinking is correct. He can still vehemently insist that he is MD of a large company, or that he’s tired because he’s done a lot of driving, when in fact it’s been almost a decade since he’s worked, or had a car. Or he can tell you a ‘fact’ that isn’t true – and has never been. The medical term is ‘confabulation,’ which occurs when a damaged brain tries to fill in the gaps by inventing things, without being aware it’s doing so. Anyone who’s cared for someone with dementia or Alzheimers will know how upsetting it can be when they refuse to believe you; asserting that they’re right and you’re wrong.

Describing Alan as ‘disorientated,’ also doesn’t begin to explain how strange and incomprehensible it must be for him to be eating supper in the house he’s lived in for nearly 25 years, and then all of a sudden not to have a clue where he is. To not to be able to find his way upstairs to our bedroom. To get lost on the way to the loo. To be somewhere so familiar and yet for it to suddenly become completely unfamiliar, truly is the stuff of nightmares.

And yet, at the same time, Alan has an enormous capacity for joy. He loves laughing and joking with family and friends. He’s very happy pootling about in the garden. He relishes good food. And he adores music – he’ll sit and listen to his extensive collection of vinyl for hours.

People used to use the word “simple” as an insult. Growing up in the 70’s I can remember people saying unkindly, “Oh, he’s a bit simple,” to describe an adult with special needs. In fact, I think this word is rather a good one to describe Alan. He IS a much simpler person now; complex thought or tasks are way beyond him. But he very much enjoys the simple pleasures in life, the things that everyone can share, regardless of their mental capacity.

In my book I describe a moment when Alan was playing with our granddaughters at Christmas:

I am standing outside their bedroom door, listening to Alan laughing with them. He is playing a daft game that I remember him playing with our children when they were little. He pretends to glue their hands together, and then professes extreme astonishment when it doesn’t work, and they can ‘escape.’ E is four and T is one, and they are giggling so hard they can’t speak. Again and again, he does the same thing, and their peals of laughter get merrier and merrier. How glad I am that Alan is no longer ‘ill grandpa’ he’s now ‘funny grandpa.’

Yet at the same time, this perfect moment is hanging in its own twist in time. Minutes earlier, Alan didn’t know where he was or what the girls’ names were and I know that by the next day, he won’t be able to remember anything at all about this.

Then it occurs to me that the girls are so young, that they won’t remember it either. And just like Alan, neither is bothered by this, because none of them are aware of the limitations of their own recall. All three of them are suspended in a little world of here and now, a bubble of pure joy. And I’m certain that even if none of them can recollect it afterwards, the happiness will still be embedded inside them somewhere.

Encephalitis is a rare and complicated illness. I vividly recall the doctor in hospital nine years ago explaining to me that the route to recovery would be far from straightforward. Caring for someone with a brain injury is also far from easy. But Christmas is a time to remember that the simple things in life – music, nature, food, laughter, family and friends – can bring solace and happiness to us all.

Pulling Through: Help for Family Navigating Life-Changing Illness is published by Jessica Kingsley and is available from the Encephalitis International Bookshop.