There is a mystery that lies at the heart of Aunty Shai. It baffles and befuddles. Why, oh why, does Aunty Shai of the non-stop games and stories, stay awake at night and sleep for hours in the day? What a waste! What a shame! Think of the lost games! The nonsensical rhymes...
Last December, in Singapore, my niece Bella could be heard puzzling this out, just beyond my bedroom door, 'Why Aunty Shai always sleeping, sleeping?' And this Christmas, my niece Eva: 'Shy-star, why do you wake up in the night and sleep in the day? Why wake up at night and sleep in the morning? Why Granma, Papa, Mummy, Daddy, Ellie and Eva wake up in the morning and sleep in the night but Shy-star doesn't?'
Last December, in Singapore, my niece Bella could be heard puzzling this out, just beyond my bedroom door, 'Why Aunty Shai always sleeping, sleeping?' And this Christmas, my niece Eva: 'Shy-star, why do you wake up in the night and sleep in the day? Why wake up at night and sleep in the morning? Why Granma, Papa, Mummy, Daddy, Ellie and Eva wake up in the morning and sleep in the night but Shy-star doesn't?'
This is what I cannot tell my nieces, but what I hope they will read one day when they pick up their aunt's memoir:
What does it mean, having lupus? It means spending more of
your life in bed than out of it, not asleep, or even resting, but engaged in
invisible battle with the monster under your bed who slimed up over the covers,
ate part of you very quickly and then paused, mid gorge, panting, contemplating
where to devour next. His paws are resting on your belly while he uses your
ribs to pick his upper incisors clean.
What does it feel like? It feels like fiction.
The only one of the children who doesn't ask these questions is Raf, because he had the mystery solved for him a long time ago. The answer was no less of a head scratcher. Apparently there was a wolf out to get his aunt. A wolf called lupus. Very odd business, but this part he comprehends: Aunty Shai is sick, and he needs to take care of her, watch over her. At four, he was encouraging me up steep hills ('You can do it, Aunty Shai! Just believe you can do it') and holding my hand in the dark, or on steps slippery with swimming pool puddles.
Of course he'd much rather that the lupus would simply take a hike up those steep Portuguese hills and leave us all alone for good, but so far the only way I truly let him down is by not being ever-present. If only I could reside in a small cosy hut outside his house. We could walk to school together. We could catch Pokémon together - he could finally bring my paltry level 11 up to a respectable 22.
Of course he'd much rather that the lupus would simply take a hike up those steep Portuguese hills and leave us all alone for good, but so far the only way I truly let him down is by not being ever-present. If only I could reside in a small cosy hut outside his house. We could walk to school together. We could catch Pokémon together - he could finally bring my paltry level 11 up to a respectable 22.
It is January of the new year. I am more wolf-bound than ever. But like Peter Pan or Tinker Bell, determined to believe that something intangibly permanent will persist. Hope, I think we call it, on a good day. Meanwhile, since it is Chinese New Year...
Gong xi fa cai!
And here is a beautiful little tale by artist Jeanne-ming...
And here is a beautiful little tale by artist Jeanne-ming...
'On the Threshold of Something New' by Jeanne-ming Brantingham Hayes
Beautiful Grace sat in the doorway of the Door of Hope Girl's Home waiting for something to happen. She had made a careful list of all the wonderful small blessings that might follow her to this threshold. By night fall, when she was called to come in for dinner, Mei En was convinced that none of her dreams would hatch, at least not tonight. But tomorrow was a new day.