Chris Baker

Country: New Zealand
Profession: Writer

Being diagnosed with MS was almost a relief. At least I had an official, medical reason for feeling the way I did. You could say it has impacted considerably on my life. For me it is the psychological effect of MS, an area almost totally ignored by medical people, which has had the greatest impact.

The best advice I can give to those to whom I talk about how to help disabled people is to ‘encourage them to move out of their bodies and into their head’.

This isn’t as easy as it sounds but is absolutely essential for the survival of disability, in my case the incapacity wrought by MS. I would not have made this most significant mental shift without the need to cope with MS. I achieved the “move into my head” by developing a more active mental life.

I originally trained as a journalist and left that profession for a variety of jobs – building, farm and bush work, driving and trade union advocacy among them – but when the MS symptoms got steadily more pronounced, I began writing.

My trilogy of books blends magic and mythology with realism. The first two, Kokopu Dreams and Shadow Waters, have already been published, and the final book, Ngahuia, is awaiting publication. My writing has been influenced by the importance I place on conservation - the evident destruction of wild habitats, damage to human ecology, resource wastage and rampant consumerism.

I am also enrolled at Otago University and am halfway through a BA, majoring in English. This involves a great deal of writing (essays and assignments) and I get all the help I need from the folk at the hospital where I reside and from the university’s excellent disability support section (mainly by supplying me with lecture notes as I can’t write).

As an author, the fatigue associated with MS is one of the challenges I face, along with finding time away from my university studies. The local MS society visit regularly but they are very busy – under-funded and under-staffed - and there are people who require their services far more than me.

There has been a significant change over the past few years in the attitudes of people who previously equated disability with mental incapacity. I regard it as a personal responsibility to encourage this attitude change, and in fact rather enjoy the task. As far as advice to other people with MS is concerned, all I would say is avoid self-absorption and be kind: it’ll come back to you and your life will improve.

The following excerpt is taken from Chris’s book, Shadow Waters and is reprinted with the kind permission of Huia Publishers, New Zealand.

It was a good spot to lie in the sun. Protected on two sides by a brick wall with heat reflected by the white roughcast of the house, she was high enough to see anything coming. She felt safe there, secure. Now the days were warmer and the sun was climbing higher in the sky, she often brought her kittens – six of them this time – to nestle and knead in her soft fur, and to play with each other. They would leap and wrestle with ferocious squeaks. They stalked one another, and when they rose on their haunches to spring they sometimes fell over. A couple of them had real promise.

They hadn’t been Across the Road yet. That definitely wasn’t safe. She hadn’t heard any Thunderscreeches for a long time, but that didn’t mean they weren’t waiting to come roaring out of the sun when she was halfway across. She didn’t trust them. Some of them were near the house. They smelled dead, but not in the way that real people did. Real people smelled bad for a while. You couldn’t even eat them. The smell of a dead Thunderscreech just faded away, especially in the winter when it rained a lot.

There was a hole in one of the doors into the house. That was probably a good thing because the door never opened anymore, but she was able to get in and out of the hole whenever she wanted. The Snarlyterrors couldn’t get in there either, though sometimes they’d put their heads through and bark. They were stupid. They must know she’d be able to claw them bloody before they thought to pull their heads out backwards and escape. But they always tried to push in, even when they were stuck, and especially when she was raking their faces with her claws.

Inside the house she slept on the couch with her kittens. Finally she was able to rest there. It had taken ages. Every time she’d started to relax she heard in her head the dreaded cry, ‘Get off the furniture!’ followed by something being hurled. Sometimes it had been soft and just gave her a fright. Sometimes it was hard and hurt. But she’d had two lots of kittens on the couch, and it smelled of her now. And nobody had thrown anything.

Everyday she checked her bowl in the kitchen, but there was never anything in it. No pieces of meat, none of those rattly, crunchy things. Why not? There were no food smells any more either. Maybe it had something to do with that. Anyway, there were plenty of birds. Lots of mice too. She ate them herself and gave them to her kittens to play with. There was never much left of them when they’d finished. Just some feathers or a tail. They’d throw whatever it was up in the air, pretending it was still alive. They’d growl at each other while they were eating.

Things didn’t change much any more, not like when the two-leggers were around. They were always changing things, lighting fires, digging up the ground, cutting down trees, making funny noises at each other, noises that didn’t really mean anything. Their lives had never made sense. She wondered where they all were. Perhaps they’d gone off to look for food.