Janey’s Story

‘Right you lot, off to bed quick sharp. If you’re not fast asleep by the time your mum gets back from Pilates, there will be big trouble.’

‘But dad, you said we could have a story,’ said Sarah, holding up one finger and wagging it with that stern look she often put on.

‘Yeah dad,’ joined in Bridget, ‘you promised us an Old Jack tale. But not the one with the nasty draxel, I’m not keen on that one.’

‘Fraidy cat,’ piped up Judith from the kitchen, ‘my favourite’s the one legged seagull.’

‘All right, an Old Jack it is then. Go and get your pyjamas on and brush your teeth, I’ll be up in a minute.’

Looking after three young girls was challenging at the best of times for Roy, but he managed ok, and found time to restore the odd piece of vintage furniture for sale. Helena had a great career, earning far more than Roy ever could. He didn’t mind though, they had a nice home in the suburbs of the city, and went on holiday a couple of times a year.

Later, Roy sat in his favourite armchair, looking out of the big sitting room window, and up at the Milky Way. He began thinking about his grandmother, and the day she died. She never liked titles, everyone called her Janey, even her daughters and grandchildren.

In his mind, Roy was transported back to a couple of weeks before his thirteenth birthday. His dad, Jim, was in the kitchen cooking dinner and his mum, Elaine, was in the sitting room talking to his auntie Claire. Janey was asleep in bed and Roy was sat beside her, desperate for her to wake up, so he could talk to her. They hadn’t been to visit for almost two years. Elaine’s job kept her busy, and it’d become difficult to find the time.

Janey lived in a one-storey hexagonal house in the clearing of a forest, near the small town of Marsden. Its large central courtyard had a glass atrium. She loved star-gazing, and that’s where Roy’s interest in astronomy came from. They’d spent many evenings looking up at the Milky Way when he was a young boy, drinking mugs of cocoa. A special bond developing between them as she pointed out the constellations and told him Old Jack stories.

Janey stirred in her sleep and coughed a little, so Roy took her hand and she settled again.

‘Sara, why does Janey’s skin look so yellow?’

‘She has what’s known as jaundice, Roy, from high levels of a compound called bilirubin in her blood. Her liver is failing due to AIH. It’s struggling to clear the breakdown of red blood cells and bile. Do you understand about the liver, Roy? Have you completed the science modules in biology and chemistry at school yet?’

Sara, an Osmiris Person, was a medical android, with advanced artificial intelligence.

‘Yes Sara, I have completed those modules, but I’d never heard of AIH. Mum tried to explain it, but I don’t think she understands either.’

‘Ok, I will explain further. AIH stands for Autoimmune Hepatitis. It’s a rare disease and if left untreated, as in Janey’s case, it can become fatal. Hepatitis in simple terms means inflammation of the liver. There are a number of types of hepatitis, some are viral but being autoimmune, this type isn’t. Do you know what autoimmunity is, Roy?’

‘Yes, I know that one. It’s where the body’s own immune system starts to attack itself, like with Type 1 Diabetes or Rheumatoid Arthritis.’

‘That’s correct Roy. A toxin, a virus, or some other form of antigen can trigger it if you’re genetically susceptible, even some medicines or herbal remedies may induce it. If the inflammation in the liver goes unchecked it tries to repair itself over and over causing fibrosis, a stiffening of the tissues that over time leads to scarring. That leads to cirrhosis, a reduction in function and in the end, liver failure.’

‘But why was it left untreated? Why wasn’t Janey made better?’

‘It’s an incurable disease, Roy, but it can often be treated with steroids and immune suppressants if caught early enough. Sadly, Janey had no symptoms for many years, which is often the case, until she got an acute onset, but by then it was too late.’

‘But couldn’t anything be done for her?’

‘Well, yes Roy, she was offered a transplant. But, she decided a donor liver should go to a young person, someone with their life still ahead of them. We spoke about it at length, and she didn’t want to go through with the procedure. There are many risks and long term medications can have severe side effects. But most of all, I got the impression she is missing her husband too much and feels lonely without him.’

A tear ran down Roy’s cheek, sad at the thought of losing his beloved Janey.

‘Is she in any pain? Can she hear me if I talk to her?’

‘No pain, I am monitoring all her vitals and administering relief where necessary. I’m sure she can hear you. Maybe she’ll awake again and see you.’

‘I was hoping to hear the Old Jack tales one more time. She used to take me for walks through the forest and out onto the plains below. We were to watch out for Old Jack the wood cutter, he’s got a very sharp axe. We would see Old Jack the crow flying high above us, watching for the return of the king to claim his crown. And the one legged seagull used to make me laugh so much.’

‘Oh, I know all about Old Jack, Roy. Janey and I have had many chats over the last few weeks. Part of my duty is to collate memories and record lifetime events for the family to keep. I have voice recordings and will send them to your communicator to listen to whenever you’d like.’

‘Oh wow, thank you, Sara. One day I’m going to get them published. I think she’d like that.’

‘Yes, I’m sure she would. I like them, the way Old Jack represents someone or something, be it human, animal or even just a feeling. And how Old Jack can be a villain or a hero, or maybe just a way of explaining the unknown.’

‘The stories might be put on the great galactic knowledge base one-day, Sara. I know our system is new to the Federal Galaxy Administration, and we’re considered a simple backwater near the edge of the Milky Way, but you never know?’

‘Simple backwater? That’s a good thing as far as I’m concerned young Roy,’ said Janey, opening her eyes, her voice croaking a little. ‘It’s so nice to see my favourite boy. Thank you for coming, you’ve made me very happy.’

‘I’m sorry Janey, I wanted to be here sooner, to tell you I love you, and will miss you so much.’ Another tear rolled down Roy’s cheek as he held her hand a bit tighter.

‘I heard you chatting about Old Jack just now, Roy, he’ll be here soon.’

‘Oh, is that so?’ said Roy, putting a little fake surprise in his voice, ‘so which Old Jack is this one then Janey?’

‘Why Old Jack the ferryman, of course. He will take me off on my last journey aboard his beautiful blue and white sail boat. I’ll pay my toll and be gone from this life forever. But don’t be sad, I’m ready and happy to go.’

‘So where will Old Jack take you? To another life? And what toll will you pay?’

‘So many questions, my lovely boy, but you’ve always been so inquisitive. No, not another life, you only get one of those, so you promise me now you’ll have the best life you can, Roy.’

‘Well, I’ll try my hardest Janey,’ replied Roy with a beaming smile, trying to push back the sadness that was beginning to overwhelm him.

‘The toll will be my story. While we sail over the ocean, I’ll tell him all about me and my family, especially you Roy, and Sara. By the time we are finished, his craggy lined, ancient face, will smile, and his long white beard will ruffle in the breeze. Then we’ll go through the mist, and I’ll fade into a tiny grain of sand in his gnarled old hand. As he emerges into the sunshine at the island of souls, he will place me there on the beach to sit forever before setting sail for his next passenger.’

‘Well, that’s a delightful tale, Janey, you’ve never told me that one before.’

‘That’s because it’s not a tale, it’s the truth,’ she said with a wink, before spluttering into another cough. Her breathing became shallow, and she slipped back into unconsciousness.

‘It’s time to bring in the rest of the family, Roy,’ said Sara. ‘It won’t be long now. Janey’s vital signs are dropping quite fast.’

The bang of the back door brought Roy out of his reminiscing with a bit of a start.

‘Do you want a coffee, love?’ came Helena’s voice from the kitchen.

‘No, not coffee, I think a cup of cocoa based hot milky drink would be just the thing though.’

Roy settled back into his armchair and gazed up at the stars once more.

~~~~~

For more info about Autoimmune Hepatitis (AIH), visit AIH Support, LIVErNORTH and the British Liver Trust