‘I’ll go,’ I say, standing in one fluid movement. It feels unfair; my fluidity of movement, her concentrated effort. Although there is no point talking about fairness when it comes to MS.
Fairness has nothing to do with it.
It feels good to queue, even on a boat where the ground beneath your feet might not be as stable as you’d like. To do something as normal as queue. All around me, snatches of conversations.
‘… and then I said, well if you’re that nervous of strangers, you shouldn’t have gotten into the Airbnb business in the first place …’
‘… a reddish-brown. That would suit your colouring, and my stylist reckons …’
‘… and I was like, I’m so over that, and she was like …’
‘… the hire-car company said they’d only upgrade if …’
Ordinary, pedestrian conversations. As if everything is normal and life is trundling along on its usual rails.
I thank the man behind the counter and lift my tray. There is a smell of un-rinsed J-cloth that makes me twitch and think about grabbing every single cloth – the smell suggests more than one – throwing them in a bucket with Milton and water and leaving them there for at least an hour, even though the bleach could break down the fibres of the cloth, especially if they are a sub-standard brand.
I walk slowly with the tray, careful not to spill the tea, which has a not very hopeful grey pallor.
Iris is listening to Dad telling one of his stories, her face alive with interest, her head nodding along to all the details she has heard before, as if she has never heard them, as if this is the first time. She was always great with Dad. Great with all of them at the Society. Probably because of her experience with her own father. Although that was early-onset. A different animal altogether. ‘Probably the best one to get,’ Iris said. ‘I’d liken it to being struck by lightning. It takes you by storm, but it’s over nice and quick.’
It took eighteen months. Iris requested a leave of absence from the hospital where she worked at the time, and moved back into her father’s house. They watched re-runs of Neighbours every afternoon on UK Gold. Mr Armstrong jerked awake when he heard the theme music, pointing at the screen every time his favourite actor – Jason Donovan – appeared. Iris never worked out why, but thought it might have something to do with Jason’s teeth; perfectly white and even and on display every time he smiled his frequent and lengthy smiles. She bought Jason’s first album around that time. ‘It was like putting a soother in a baby’s mouth,’ she told me. ‘Especially for You’ was her dad’s favourite. Iris’s too, in the end.
I didn’t know her then. Back when she didn’t have MS. Or hadn’t been diagnosed yet, at any rate, although Iris says that she always got pins and needles in her legs as a kid. Sparkles. That’s how she described them to her dad at the time. Sparkles in her legs. So maybe it was there all along. In the wings, as Kate might put it. Waiting for its cue to take centre stage.
Her dad’s death. That might have been a cue. Anyway, that’s when she started experiencing symptoms. Turns she called them. Blurred vision, staggering, tripping, banging into the architraves of doors as if she’d suddenly lost touch with spatial awareness. And then the pain. Pain in her muscles, her joints, her limbs, her head. These turns didn’t happen all at the same time. They took turns and did not persist, so that, at first, Iris thought she was imagining them. Or she put it down to the tiredness she was feeling then. All the time. The doctor, vague, cited an auto-immune deficiency. Said it could be caused by stress which was natural, under the circumstances. With the recent death of her father and her new job – new career – as communications officer for the Alzheimer’s Society. He described these things as stressful. Iris disagreed. Her father dying was the least stressful bit of the whole process, she told me. ‘If he’d been a dog, he would have been put out of his misery long ago,’ she said. I agreed with her. I’ve seen the liberties this disease takes.
Iris told me that the first thing she felt when she was finally diagnosed was relief. That it wasn’t Alzheimer’s. She had experienced sporadic short-term memory issues and had thought the worst, which is so unlike her. That’s more my area of expertise. It turns out that memory problems can be another symptom of MS. Another little gift, as Iris puts it. Left at her door like a cat leaves a dead bird.
But there was nothing relieving about Iris’s diagnosis. Primary progressive Multiple Sclerosis.
‘I’ve been upgraded,’ Iris said when she came out of the hospital that day. The day she finally got the diagnosis. She didn’t want me to go with her that day. ‘It’s just routine,’ she said. I insisted. I had a bad feeling. And yes, I do have a habit of expecting the worst. But I had observed some deterioration in Iris’s movements at that time. A heavier lean on her walking stick. A slower gait. A tautening of the skin across her face that hinted at fatigue and unexpressed pain.
‘What do you mean? Upgraded?’ I said. Already, I could feel my heart inside my chest, quickening. I knew how Iris could dress up a thing. Make it sound acceptable.
And she did her best that day.
But it isn’t easy to dress up primary progressive MS.
‘We’ll get a second opinion,’ I said, as we walked down the corridor.
Iris stopped walking. ‘No,’ she said.
‘Why not?’
‘Because I know it’s true.’ Her voice was quiet.
She was in a relationship at that time. Harry Harper. He was an artist and a year-round swimmer, which was where Iris met him. They met at sea.
Iris said theirs was a casual relationship and the only reason it had gone on so long was because of the sex, which she declared thorough. And she loved his name, being a fan of alliteration.
But she really liked him. I could tell. He was unselfconsciously handsome, interesting and interested. And he was thoughtful. Kind. He always matched Iris’s pace, was careful not to hold too many doors open for her, and remembered that she disliked dates, so he never put them into the sticky toffee pudding he made for her because he knew that she loved sticky toffee pudding but hated dates.
He had no children and one ex-wife with whom he played squash once a week.
And while Iris didn’t believe in The One – one-at-a-time is her philosophy – I could tell that she thought a lot of Harry.
And then she got the upgrade as she called it, and she ended her relationship with him shortly after that. She said she refused to be a burden to anybody.
‘You’re not a burden,’ Harry said.
‘I will be,’ Iris told him.
‘I don’t care,’ he said. ‘That doesn’t matter to me.’
‘It matters to me,’ Iris told him.
And that was that.
I always tell the girls, when they complain about this or that, that they must look at the situation objectively and try to find something positive in it.
The only positive thing about this version of the disease is that people don’t usually get it until they’re older, and so it was with Iris, who wasn’t diagnosed until she was forty-five.
Other than that … well, that’s it really. Everything else about the disease is … well, I suppose it isn’t always easy to see the positives.
Iris