Happy Sad Memories

We spent Christmas at my in-laws, who are some of my favourite people in the world. Being with them is like a home from home. So why did I wake up on Christmas morning with a stone in my chest and the most indescribable sense of loss? Needing to fetch the heavy plastic tub from its box under the tree and sit cuddling it, bereft. It’s all that’s left of Nick in physical form. I know he’s gone. I know it’s ridiculous. It was probably pretty ridiculous to take him with us in the first place to spend Christmas together, but he loved Christmas and I wasn’t going to leave him on his own. This was the first one without him in the world since I was four, and grief makes you irrational. 

I’m also aware that he was so lucky to go when he did, and how hard things might have been by now, how difficult he was finding it to do so many things, and starting to dread the prospect of eating when all his life he’d been such a foodie. 

It made me think of all previous Christmases we’d had and their changing choreography as his illness began to manifest. This one I remember in particular because Nick was still living in his house in the north east and relatively independent – or so I had thought. 

Just four years ago. I wrote about it in my diary and it’s part of the memoir I’m writing about Nick and Huntington’s and how it affected our family. It was one of those near disasters where you end up having such a good time that it becomes one of the best times. It still makes me smile.

Christmas 2015

It was Nick’s turn to have the children with him for the few days after Christmas. We arranged to have a second Christmas with him and the kids, travelling straight up north after being at Simon’s mum’s. Nick said he would cook a turkey and to leave it to him. I must have been a wee bit doubtful but he’s been coping so well lately. Trouble is, while always watching out for change, I don’t seem to see it until it’s too hard to ignore.

         We drove up north on the day after Boxing Day. There had been dreadful floods throughout Yorkshire and the north west and as we crawled slowly up the A1 we saw half submerged trees in what had been fields and were now lakes. By the time we arrived we were hungry. Simon’s mum can never let us go without at least one bag full of cake, fruit, cheeses she has got in specially, whatever they won’t be eating now the guests are leaving, so we were laden with goodies: mince pies, home-made cranberry sauce, left over roasties and some little cocktail sausages. And a stick of sprouts, some carrots and a bottle of fizz. Nick had said he would provide everything else so we just needed to bring ourselves and whatever we were drinking. Finally we knocked at the door. There was great excitement to see each other and the children immediately tore into their presents while we opened the wine. Something was missing though – what? Oh, yes - where was that background hum of the delicious scent of roasting meat? (This was just before I turned vegan...)

         ‘Shall I help you get the dinner on?’ I asked Nick.

         ‘OK Sis.’

We went into the kitchen.

         ‘Where’s your turkey, Nick?’

He fumbled in the fridge for what seemed a very long time and then produced a small cardboard package. Inside was a frozen turkey roll, clearly labeled as ‘Serves 2 people.’ There were six of us.

Simon came in, ravenous after the drive and wanting to get dinner started.         ‘Shall we put the bird in the oven then Nick?’  He didn’t notice my frantic eyebrow wiggling and grimacing.

Nick looked a bit shifty. He started twiddling knobs on the cooker while I rummaged in the cupboards to put the roll – looking smaller all the time – on a roasting tray. Nick fiddled about some more with the dials. Then –

          ‘It’s not working at the moment.’

          ‘Oh-kayyyy…what about the microwave?’ Another long silence.

          ‘That’s broken.’

I’m honestly not making this up. In his mind he was going to cook a turkey banquet for six people, even though what he actually had was a tiny frozen ready meal thing and no oven or microwave. There was no point in getting exasperated, we were way beyond that. We would have to improvise.

I cut the turkey roll into shreds with a pair of scissors and we put it in a pan to fry with some onions and then added the sausages. We made bubble and squeak in another pan with the leftover roasties, chopped the carrots raw into sticks, and the kids persuaded us to forget about the sprouts altogether. Meanwhile, the adults opened another bottle. There was lots of food to go round and it was all delicious. And in the end, much more fun. We had to work together and pull what could have been a disaster into a good time – the stuff that often makes a family gathering memorable, especially at Christmas. And Nick was the host with the most. But I think we need to look at some home help for him in the New Year before someone gets poisoned.’ 

Last Christmas, I gave you my heart

...and I won't ever get it back, but that's OK. We were brother and sister for five decades, nothing can change that, and your memory will always be with me.

Memory is a funny thing, though – yesterday I was inconsolable because I’d just idly wondered what we were doing this time last year, then realised that I’d got rid of my 2018 appointment diary and also yours. The reminder of all those medical and social service appointments; ears, eyes, skin, teeth, hands and feet and bumpsadaisy, there wasn’t a bit of you that didn’t have a problem and someone trying their best to fix it; the waiting in for wheelchair repair and every other repair under the sun; meetings with management of the awful care agency, always promising but never delivering; the council officer and police calls about the upstairs neighbour; the shopping and the schlepping and the fun things too, your lunches with Helen and Sophie and me and the cinema and your boys’ night out with Simon at the pub. 

I couldn’t bear the reminders of all the bad stuff; we’d already lived it for too long. But I’m sad to forget some of those little things, though maybe they never really leave but are always there in the close weave of our souls.

We went to two carol concerts, that I remember, about this time last year. Both of which we had to jump ship halfway through because you were so uncomfortable. Being in a confined, unfamiliar space was very hard for you to manage, even in the wheelchair that you said was your most comfortable place anywhere. We’d both stopped caring if people stared as you jerked and rocked and shuffled about, but now the Christmas spirit had arrived and people were kind. You loved the craic, the decorations and festive air, and you certainly enjoyed the mulled wine and snacks.

All this stays with me in my bank of treasured memories. We never imagined that you wouldn’t be doing the same thing with us this year, and I’m still getting used to you not being here. I wouldn't want to put the clock back and see you getting worse and more uncomfortable all the time, maybe not even wanting to or able to go out much. We have a lifetime of memories and good times to look back on, and you definitely quit while you were ahead. It's just a funny time for the ones you left behind. 

But don't worry. It’s Ok – just strange.