Recipes a heartfelt gift for a dying man
By JANE DUNBAR - The Press | Saturday, 13 October 2007


KIRK HARGREAVES/The Press

RECIPE GIFT: Matthew Fraser, who is dying of degenerative illness motor neuron disease with his children Damian, Harriet and Margot. Many of NZ's leading foodwriters have donated recipes for a fundraising cookbook to help Matthew.

Fraser is dying of a dreadful degenerative disease. Many of the country's leading foodwriters have donated recipes to help the Christchurch man and his family through the worst-possible times.


It began with a cramp in his hand. "Writer's cramp," a specialist told him.

It didn't seem like writer's cramp to Matthew. So he and his pregnant wife Zara went to a neurologist.

And after 20 minutes of tests, the neurologist told them: Matthew was going to die – some time in the next two to five years. He had motor neurone disease (MND) – a fatal disease of the nervous system.

That night, Matthew told his mother and father.

"I'm going to die," his mother Kate remembers him saying.

It's now three years later. Matthew lives at home in Christchurch with Zara and their three children, Harriet, five, Damian, three, and Margot, two.

He can no longer walk. He can't dress himself. He can't shower himself. He can't feed himself. His voice is going. Swallowing is not easy. Within the next few months he'll need a feeding tube inserted in his stomach.

"I am quite literally imprisoned within a body that can't do what my brain tells it to do," he says.

But Matthew is alive. And he is fighting.

And as a true child of the computer age, he is using the latest technology available to him to eke out every possible moment of life; to stay connected, and to be heard.

On visiting Matthew's young family, they give a remarkable impression of normal family life.

Matthew may be confined to a wheelchair, and have difficulty speaking, but the children tumble around him like puppies.

They play, have tantrums, console each other, eat their morning tea, run and shout. While Zara does all the hands-on care, Matthew is in the midst of it all.

All around the house are the gadgets and technology that help keep him connected.

Ever since he was diagnosed with MND, Matthew has used his computer skills and knowledge to hunt out anything that could help extend his engagement with life.

At the computer, a laser camera connects with his glasses so he can move the cursor around the screen.

He still has slight movement in his left hand and in his feet and he uses them to operate a mouse.

Anticipating the day when he can no longer speak, he's experimenting with software that will turn text into a spoken voice.

Over at his TV chair, he has a bright-yellow remote control that he can tap with his fist. When he can no longer move his hand, the remote can be moved to head height and operated by knocking it with his head.

Then there's the special bed; the hoist to get in; the wheelchair; the van that can take a wheelchair

. . . and it all costs money.

Matthew can no longer work, and Zara has the three children to care for.

The health system provides for the basics, but not things that improve the quality of life such as computer systems that work on the wheelchair to enable Matthew to move and communicate, page turners so he can read books, and more importantly, money for long-term carers and 24-hour care in the home so he doesn't have to live in an institution, away from Zara and the children.

Friends and family have been enormously generous, but the financial pressures are huge.

A charity trust has been set up, and fundraising has meant the family has been able to get things like a van.

In talking with his mother, however, Matthew came up with an idea to have something to give in exchange for donations. He suggested a cookbook.

It was an idea his mother liked.

Kate Fraser, editor of Zest, the food and fashion feature section in The Press, had been feeling frustrated at not being able to do enough for her son.

She had thought she was coping OK, but would find herself frequently sobbing in the car on her way home from work.

She felt overwhelmed by grief. And she found that friends and acquaintances were unsure of how to react when she talked about her son and his family.

"There were glazed eyes. It was too big. People felt embarrassed. They didn't know what to do."

Kate started to think of all the people she had known who had suffered some sort of tragedy.

"I now feel guilty about the things I have never done for people – when you don't know what to say, or what to do."

And she decided that one answer to this conundrum was the gift of food.

"Doing something simple for people – taking some food round. It's such a nurturing, caring thing."

Kate knows chefs and food writers everywhere.

She sent out an avalanche of emails to her contacts, telling them about Matthew, and asking for recipes – recipes that were simple to make, and could be easily carted around and delivered on doorsteps.

The replies flooded in, and the cookbook, Food From Friends, was born. All proceeds will go to Matthew's charitable trust.

Matthew, meanwhile, has pioneering plans.

He's talking to the Burwood Hospital Assistive Technology Group about the possibility of converting his wheelchair so it can act as a computer mouse.

And he is planning a manual to help people with MND deal with the vagaries and funding difficulties of the health system.

He regularly updates his website which has extensive links to information about the disease, to stories of people who inspire despite their illness, and gives the details of his own story.

He networks, he advocates and he researches. His voice is one of determination, of endless optimism, of frustration, of gratitude, of wry self-revelation.

On the website, he offers advice about how to interact with people with MND.

"We are not deaf or stupid; I know we sound like it. Talk to us normally."

And he advises against asking, "Are you all right?" or "How are you?" because "you'll only get the standard answer – 'yeah, good'. You wouldn't want to hear the real answer."

He also says that a strange side-effect of MND is that sometimes you will find yourself laughing, or crying, uncontrollably. It's a muscle thing, he says.

But you can't help but think this is a normal reaction; one to be expected.

Who wouldn't cry uncontrollably on finding themselves trapped alive in a collapsing body? Who wouldn't laugh like a maniac at the sheer mad cruelty of it?

But that's not for Matthew. He isn't giving up.

He's sure that tomorrow a cure may be discovered; or at least some new way of slowing the disease.

Meanwhile, there's been Harriet's first day at school to revel in – October 8. When first diagnosed with MND, he never thought he'd make it to that day. But he did.

Matthew Fraser website
http://www.matthewfrasermndcharitabletrust.co.nz/


http://www.stuff.co.nz/4235620a19716.html