True Story 2

My mother has Progressive Bulbar Palsy, which is a form of Motor Neuron Disease (ALS). I wrote this in May last year.

Mum in Ezibuy looking for winter clothes because nothing from last year fits her. We choose a pair of size eight needle cord pants and two skivvies that—as it turns out—are too tight. ‘I can’t get them on over my head without nearly losing my ears,’ she writes later. She won’t try anything on. Last time we shopped she would have. Now she’d have the feeding tube to contend with. I don’t know whether she’s given up self-consciousness or is only impatient with it—or defiant. She walks between the racks in the big store with a tissue clamped between her teeth to catch her dribble. She gets about browsing. I wander off to look too—she’s checking for sizes and colours more than fabrics, but I’ll be damned if she’s going to buy a non-wool knit. I lose sight of her. Her white head is about the same height as the tops of the racks. Eventually I go searching, and after sometime locate her and realise I’ve done so by following the direction of the gazes of the other shoppers. They are looking at her—curious and concerned—their looks saying, ‘Should this fragile old lady be out?’ I can feel their relief when I come up to her and they see that she’s not alone. They are eavesdropping on our exchange—my questions and comments and her little grunts and gestures. The girls at the counter are remarkably unflapped. They talk to me—then to Mum once it dawns on them that she’s not deaf, only mute. But still they’re happier talking to me, ‘She knows what she wants,’ they say, and, ‘She’s very decisive.’ I can see that part of her haste and determination at the end is that she’s racing ahead of her own fatigue. We poke our noses into the design store next door and I quickly see that she’s too tired to take an interest. She had been interested when we first parked and passed the window display with its giant wire vase (big enough to serve as a room-divider.) We stopped and speculated about that.

I say ‘we’ speculated because it’s sometimes as if I can hear her talking. I know by the carriage of her head, the set of her shoulders and her now minimal facial expressions what she’s thinking, and my mind simply supplies a script.

Next day I take her to Moore Wilson Variety to buy a yard broom. She can’t talk to the shop assistant but tries to say no, don’t wrap it, I’ll fly it home. She has to mime, swinging her leg over the broom-handle. The girl laughs, her laugh releasing her from nervousness. And I think: Mum was always like this, and how kindly and civilised her demonstrative playfulness is. It’s not exactly dignified—but every time she does it, it’s a warm hand held out to someone else.

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