Writer, researcher, music lover, cancer survivor with CMMRD ("double" Lynch syndrome)

Category: Prose

On joy, on Christmas, on length

Crying while listening to “Santa Claus Is Coming To Town” is an act of defiance.

Though it does feel a bit strange sobbing as the radio is telling you to “turn up the festive feelgood”. Maybe because the real act of defiance is putting the Christmas radio station on as soon as it starts in late September.

But I want to and I won’t apologise for listening to Christmas music too early. Christmas does come earlier each year but I’m going to embrace it. Because Christmas brings me so much joy and I want to squeeze as much joy and Christmas out of the year as I can, to keep it going for as long as possible. Life is just too difficult not to get as much joy out of it as you can manage.

Why is life difficult? Because while I’m thinking about the approach to Christmas I inevitably end up wondering if I will have medical appointments between now and then. If the possibility of having cancer a fourth time might crop up between now and then. If any of my Christmas plans might be scuppered by appointments or fears or procedures.

So I’ll listen to Michael Buble in September and start my Christmas shopping before Halloween and watch Christmas movies in October and I won’t apologise for it. Life literally is too fucking short for that.

Well this is all a bit “Maslow’s Hierarchy of Needs”

I could finish my PhD
I can feel fulfilled by my career
I could get married and we could adopt a kid
We could get two pet cats
I could live to be 40, 50, 60, 70, even 80
But I will never stop having CMMRD

We could win the lottery and that wouldn’t change my yearly tests – not the fact I have to have them or the outcome of them.

I could have all the good fortune and success in the world and that won’t reduce my cancer risk, it won’t alleviate my anxiety, it won’t change my health.

And I guess on the surface, this comes from a place of despair, of knowing my health worries won’t end until I die. And that might make everything seem a bit pointless.

But beyond that, on the flip side, there is acceptance.

If I can accept this state of affairs,
if I can realise what won’t change and take solace in what will,
if I can come to terms with my condition and what’s required to keep me alive and well,
if I can take this as part and parcel of my life –

maybe fulfilment and success are possible, and maybe peace of mind is that little bit more attainable.

Life and Work and Family and Trees

All the leaves are changing and nothing is changing and maybe everything is changing. My mother sings California Dreaming while she stands smoking at the kitchen window, just the first two lines, nothing more, she doesn’t know the rest – sometimes softly to herself, sometimes with vigour, with an excitement about the sky being grey, whether or not it really is. Sometimes I look in the mirror or catch my own mannerisms, think about my ways, and realise I am becoming her a little and I love it. I talk like my dad. I tell people to pack it in and stop mithering and find myself repeating sayings I assume are a bit northern and explaining it away with as my dad would say. My family is the best family to ever exist and we don’t need to be perfect because nobody is – I can only emulate the best people I know, and they are the best people I could emulate because they never left. Others left and said they had come back but they haven’t, not really.

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nothing freewrite

I did a free write and this is what came out.

Everything starts with I. It’s like there is nothing else to talk about but myself and the wind, the storm, the loss. So much loss. I don’t think I even care about when it will end or why, just that one day there will
be peace and there will be sunshine. There is no stopping it. I know that now there is nothing except the wind in my face and its strength is determined by some unknown weatherman who decides these things. Who decides these things? Not me, that’s for sure. There is a breeze or there is a gale or there is something between the two but there is no rest for the wind now, there is no rest for the wind. Sometimes I think that there is fire and the wind will spread it. The
wind will turn the flames bluer than they have ever been. And there will be snow. And there will be gusts, so much of a gust, and no guts, no guts left for me. Nothing left of me. Windswept, scooped up and carried away on a tail, on a sheet, in a sack, something taken in broad daylight – not in the dead of night.

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Stream of consciousness

A stream of conciousness I just found in my notes and probably wrote at work:

We write to stay afloat. I could talk to someone but I don’t even know what I would say anymore. I am no longer coherent, I have inherited
something I cannot give back, in body and mind, in thought and many unkind ways. where have the days gone that I once knew, those peaceful, carefree, relaxed days when everything was almost always okay? Who do I talk to now? I don’t even know what I would say that would be worth the energy, worth other people hearing, worth enduring their concerned faces, as all traces of me fade away, even those alive in the minds of others. All I can say is I’m sorry I can’t and I don’t know and I don’t know.

The Party

I didn’t want to go to the party, but Tommy made me. Tommy makes me do a lot of things and I don’t always like them, but sometimes I do. I can’t believe how many things he has forced me to do in such a short space of time. Though forced is such a strong word – it sounds bad. It sounds like abuse, and having no choice. I always have a choice. I don’t believe it when people say they don’t have a choice. You can always run away from something. You can always just do nothing. Unless someone has you tied up in a room somewhere so you can’t move. But even then you have a choice – you can try, or not try, to escape. I have never wanted to escape from Tommy.

Tommy wrote a list. He wrote a list of all the things he wanted to do, and he said that I could help him. He said it would be fun. Sometimes I trusted him. Sometimes I wanted to tell someone else about what we were doing, but he made me promise that I wouldn’t tell anyone anything about us. The things we did.

The night of the party, we were drunk. So very, very drunk. He found out about the party through a friend, and we were drunk before we got there. We didn’t realise how drunk we were until it hurt the morning after. It was a birthday party, I think. I can’t be sure. It could have been a christening, but I’m not certain. It was so late at night. We showed up late. People were sprawled on the floor, people were upstairs, downstairs in the kitchen, the bathroom, the garden. I can’t remember the last time I saw so many people crammed into such a tiny house. Tommy headed straight for the punch bowl and I followed him. I followed him everywhere when I was with him because I didn’t know anyone in the places he would take me. He was a bad guy, people used to say. They don’t say that anymore. Nobody says anything to us anymore. Not after the party.

We stayed for a long time. Nothing really happened for the first few hours. Some people left. Some crashed out on the couches, nestling their faces in the crevices of each other’s bodies – the nape of the neck. Armpits. Top-and-tailing. Anywhere where they could get a space. If they hadn’t passed out they were doing something else entirely different in whatever dark corner they could find. Or not. Tommy said we should do it too, but not tonight. I said it was my first house party, and he told me not to worry, that there would be more.

I believed him. I believed everything that came out of his mouth – those thin lips, usually cradling a cigarette, much like the one he dropped in the bedroom at that house. The one I forgot to mention to him right after he dropped it because I was so drunk. Then when he started fumbling in the dark, I saw the spark out of the corner of my eye, but I still didn’t realise what was happening. The orange glow on the floor disappeared as we slid under the duvet. But as soon as we came up for air we saw and we turned and we ran. We ran so quickly. The house was ablaze with all those people inside but we didn’t stay to find out if they all got out. I believed everything Tommy said. He said one day we would forget about all of this. I believe that, too.

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