RAGE, RAGE against the dying of the light
By DENISE TUTAKI - Taranaki | Saturday, 13 October 2007

neurone disease is slowly shutting down Lynn Morresey's body, but he's not going willingly.


The blue eyes betray a fierce determination as the recliner-bound man focuses intensely on a plastic board.

The long dreadlocks are draped over the back of the chair as he manipulates stubborn, wasting neck muscles to guide the laser light strapped to his head over alphabet letters and common words on the board, punctuating them with a hovering red full stop before they are finally woven into sentences.

Lynn Morresey is the centre of attention that morning in a room down the end of the hospital corridor a room that reflects the more alternative tastes of an artist, in stark contrast to the rest of the inhabitants of Telford Rest Home. Telford manager Barbara Kay checks in on the 45-year-old constantly, hovering solicitously over him. Physiotherapists and other hospital staff also check in, pillows are swapped and adjusted, towels as neck supports are pondered and dismissed.

It's been a year since Morresey has been at Telford, and a year since Mrs Kay woke up with a plan of how to introduce a young man into the rest home, a man with a penchant for loud rock music over Vera Lynn standards.

As visitors come and go, the rest home manager talks of milestones and progress, and visitors drift along a torrent of hope and optimism before the mental wake-up call that resounds like a car crash back into reality. Morresey has motor neurone disease (MND), usually considered fatal within three to five years. He has stared MND and its gloomy prognosis smack bang in the eyes for three now.

"We watch the disease and maintain it," comes the manager's voice, competing with a few conversations going on in the room. "But only when we are called to," she adds. "Lynn is the one that guides everything, really. And that's the strength of him. His independence is incredible. And while we've created this environment and given him support, it is his family that's designed things like the board and laser light. They've helped with things like his music."

Brother Vaughan agrees that he and his wife, Isabel, have become Morresey's limbs.

"We have become Lynn's hands and feet, doing prints for his art, helping mix his Ward 4 CD we've been quite involved there."

"Lynn's my youngest," says one hospital worker, explaining that there is no rhyme or reason for MND, an illness that kills neurons.

There's no cure, and 100 different types of the disease, with as many symptoms. As for causes they, too, are as many and varied as medical opinions are divided over the illness. The most famous sufferer is probably the physicist Stephen Hawking.

When Morresey arrived a year ago, he was still able to get out and about on his motorised buggy, precariously negotiating potholes and unpaved driveways. There were a few prangs, apparently. Since then, the illness has steadily progressed. He is now largely confined to his recliner.

He cannot talk, he cannot swallow properly and all food must be liquid, he has lost all control of his limbs and his head flops forward more and more often as he loses control of his neck muscles. He communicates by using a laser device developed by Vaughan.

Eventually, the doctors say, his lungs will fail and he will die.

Morresey sees things differently: He is more than MND.

"It's all about God, as far as I'm concerned," he states resolutely.

"My faith has kept me going from the day I was diagnosed. Until then, I was relying on doctors," he recalls.

"Once I knew I had MND, I knew doctors could do nothing, so I had to put all my faith in God which is the best possible place for it."

Morresey says he's not in denial; after all, he's had a few years to get used to the idea. But he's sure: This disease isn't going to kill him.

"I have never thought that for one minute, although doctors have assured me it will. But I believe in the promises of God and that's all I hold on to. I was a hard drug addict for nearly 20 years and I never thought I would be anything else. One day, God changed all that. Why would I not think that he will change this thing, too?"

Faith like this is always going to polarise people's opinions, his brother adds.

"With this disease, we are thrown into a gauntlet of believers and non-believers, which can sometimes be hard going in a sense, because Lynn and I know the reality of God, but you are dealing with doctors that don't. It's like we are in different worlds, really.

"Christians don't think like that, He can change lives as He changed both of our lives 10 years ago from a life of crime and addiction. We have got a strong faith that once you have come to the revelation of Jesus, it's an open-and-shut case. He's got the whole situation in his hands and that's where we find peace. That's something non-believers don't have."

If one didn't know any better, it would be an easy thing to dismiss Morresey, and more fool the visitor who would underestimate that faith, strength and dogged determination.

But underestimated and misunderstood he can sometimes be.

Communication can be confused, as the visitor negotiates the plastic board that Morresey constructs sentences from. MND has long seized his vocal chords.

Trying to fathom the system that enables communication, it is easy to miss the eyes sometimes. There's a lot to be gleaned from Morresey's.

If one has the chance to sit back and watch as he communicates with visitors, the blue-tending-to-grey eyes give more insight into his character. With what seems like bloody single mindedness, as the remote strapped to his head slips from time to time, the batteries flicker and the neck muscles tire, Morresey helps visitors construct the sentences, albeit haltingly at times, as they negotiate the words that formulate first via plastic before being translated to paper, all the while trying to negotiate the clicker that turns the remote light off and on.

Morresey's patience is probably tested on occasion as he rewrites and revises answers with the head light, as well as guiding the visitor with the not-so-subtle acquisition of literacy and communication, MND-style.

And it is that determination and strength that is the reason why he never asks: Why me?

"I have never asked God why I'm going through this except once, at the very start, when I was walking down the beach to ask God what was going on. I thought I saw a magazine called Word for Today on the ground and I had the strong urge to go back and pick it up, but when I did, it wasn't a Word for Today, so I turned to walk away. But I felt this same strong urge to go back and pick it up, which I did, and it was a form on the local elections. I thought, why did I have such a strong urge to pick that up? Then I felt the same urge to turn it over and when I did, there was a heading titled The Submission Process. I knew right away that I had been given my answer," he says.

"God was calling on me to submit my will to him and that's really hard for someone who has always done things his own way. I asked God what my next step was, so I took my tent and went bush for a week to ask God what I should do and the answer I got was to wait on Him. And that's what I have been doing ever since."

The disease has stripped him of the ability to do practically anything, though Morresey remains an artist and musician with a million ideas in his head, just no bodily movement to provide the vehicle not for want of trying. Morresey played in Taranaki Christian rock outfit 91 Battalion. He did the Cellar Uncle CD and has recently released the Ward 4 solo album.

His art is also well-known and prints of his last paintings are for sale at Real TArt in Egmont St.

"All the art has ended long ago and the music has pretty much stopped," he says, although he relishes the chance to show one visitor music videos that have also made the final stages before being released.

"The last CD I did was 91 Battalion and that was a nightmare to mix because I couldn't use my fingers, so I had to do everything with my knuckles. I have another song I'd like to do, but we will see about that one.

"The worst part is that I keep thinking up ideas for paintings and songs, but I can't do anything with them.

"They are locked in my head."

But he insists he doesn't feel trapped. That's nowhere near the worst part of it. Indeed, the sentences and requests keep coming.

"Can you put on that PJ Harvey video in the drawer?"

To the manager: "Can I just have Weetbix tonight? With hot water and cream to go, thanks?"

And for the thousandth time, patiently, as a visitor clings to the remote clicker for too long, trying to digest the sentences as they formulate from the plastic transparency to ink on a page: "Turn that off before the batteries run out."

It's the communication misfires that get to him. And misinterpretation of words is not the only way Morresey finds himself misconstrued.

He ruefully reveals: "I have, just lately, realised that my mouth doesn't always smile when I think it does. So I can be in a perfectly good mood, but to the observer, I appear a bit moody, because when I think I'm smiling, I'm not."

Morresey says the emotional side of the disease is also hard to grapple with, as is not being able to communicate, then being misread when he tries.

"MND really does a number on your emotions and sends them haywire, but it leaves your reasoning powers intact. It's a Catch-22 situation," he explains.

"I have perfect reasoning, but I lose it over the smallest things. I have perfectly reasonable explanations for why I am upset about something, but I throw such a childlike tantrum that no one takes the initial problem seriously. They think I'm just acting up. It's incredibly frustrating.

"The thing is, when I'm throwing the tantrum, I fully realise that I am wildly over-reacting, but I am powerless to stop. I can laugh, cry, throw a tantrum, and then laugh again all in the same sentence."

He pauses to reflect on his thoughts.

"It's a good thing I'm here at Telford. Most of the staff are understanding and have lots of patience with me, which is a good thing, because I've gone off at just about all of them."

To beat this disease would take a miracle. Morresey is expecting one.

"I have complete faith in a miracle. I have learned through this to totally rely on God, and once you have seen one miracle, it's so much easier to believe that you'll see another one. God's going to heal me, it's as simple as that.

"There are so many scriptures in the Bible concerning healing, but there is one in particular that says all things are possible with God. I believe that so wholeheartedly that I'm living in a state of total expectation."

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