You have an itch. But the only way to relieve it is to play this never-ending game in which someone says letters and you blink for the ones you want. An hour later your eyebrow finally gets scratched; you win.
Throughout the day you repeat the process when you want a drink, to pee, to change the TV channel, when you need your arms moved, or a fly waved from your face. You watch television, dribble from a mouth that can no longer swallow and listen to one-sided conversations. Later you will be fed directly to your stomach through a tube, while dreaming about food you will never taste again.
In September 2005, 31-year-old Oamaru man Aaron Hill was diagnosed with motor neurone disease.
An Invercargill neurologist didn't paint any illusions about what lay ahead. "It's the most savage disease there is," he told Aaron and his family.
He advised against researching what would happen.
However, while the cruelty of the disease that would trap Jack and Glenys Hill's son's mind and steal his body was something no parent can prepare for, there was a bigger shock to come - Aaron's resilience.
In facing the toughest journey of his life, Aaron remained calm and positive, even keeping his sense of humour throughout a fight he knew he could never win.
At any given time there are 250 New Zealanders with motor neurone disease (MND). The condition affects the nerve cells (motor neurones) in the brain and spinal column that control the muscles of movement.
Gradually, the muscles weaken and waste away.
• Three years ago, Aaron had already crammed a lot into his 31 years, and become a loving, social, athletic and easy-going guy.
His parents, Jack and Glenys, who are no longer married, had a son who loved people and who was generous to those he cared about.
The tall, dark, smiling guy was also a natural athlete, who gave every sport a go and excelled at most. Aaron's golf handicap was nine and he was a skilled water-skier and basketballer.
Glenys recalled him trying everything in life, and getting stitches every year from the age of 4 as a result, for everything from falling off trees to diving off sheep trucks.
"It was like he knew [he wasn't going to live for a long time]."
Above all, however, he loved women and had a natural talent to relate to females of all ages, Jack said.
"He excelled at that."
While he never shone academically, his ability to connect with people made him stand out.
"One teacher at high school said Aaron would do well in life because his people skills were phenomenal," Glenys said.
In 2005, Aaron had completed his two and a-half year long OE. He was managing clothing store Jay Jays in Queenstown, had a new girlfriend and was enjoying settling back into a Kiwi life.
In the middle of the year Aaron began noticing some uncharacteristic changes in his body.
It started with mild slurring, and twitching in his hands and upper arms.
He had difficulty saying certain sounds, in particular "s" and "k".
Few people noticed, however, as Aaron began avoiding the difficult sounds.
Soon, he was having slight leg slips when he was walking.
Something was wrong, but no-one knew what.
Aaron underwent testing at Southland Hospital in Invercargill, but everything came back clear.
This was not unusual. As there is no specific test for MND, doctors can only test to eliminate all other possible diseases so it is often difficult to diagnose early.
Aaron knew MND was a possibility but his family remained certain it couldn't be that.
"We were all in denial, not wanting to believe that he had motor neurone," Jack said.
In August 2005, Aaron was referred to a neurologist in Dunedin, who carried out a number of tests, including using an electromyogram (EMG), which measured the electrical activity of his muscles.
The changes in Aaron's nerve cells had started to cause twitches and a rippling pulse would sweep spontaneously throughout his upper body.
He later learnt this was distinctive of the rapid onset of MND, indicating its fast progression inside his body.
In the first week of September 2005, Aaron was diagnosed with motor neurone disease. But it stayed his secret for a week. He delayed telling his family until after Father's Day.
"He didn't want to ruin the day for anyone," Jack said.
When he finally did tell them, Glenys said the feeling was like being crushed from the inside.
"Imagine if someone said 'I'm going to throw you out of a plane and you've got no parachute'. And it felt like that every day for the next 18 months."
Both Glenys and Jack took up the neurologist's advice and avoided researching what was to come.
• Far from letting the disease break him, Aaron's attitude was simply to get on with it.
He was composed and positive, annoyed, but not furious, Glenys said.
"It was as if someone had slashed his tyres rather than tell him he had a terminal disease. He was pissed off, but not angry."
In October 2005, Aaron moved into his mother's house in Oamaru, which she shares with her partner Kerry Daniel, so they could provide full-time care as his condition progressed.
Over the next five months, his speech had become slower and more slurred.
The damage to his nerve cells had caused his fingers to become locked in a clenched position and he began choking on food.
Everyday functions started to become out of his reach.
"He couldn't wipe his face after a sneeze, or blow his nose. He would get trapped in his bedding and couldn't get out," Glenys said.
His locked fingers also meant he couldn't feed or shower himself; reading and even texting became difficult, taking away not only his independence but also his connection to the outside world.
Jack and his wife Shirley Hill made daily visits to help care for Aaron and to spend precious time together.
About this time Aaron's step-cousin Tania MacColl came to visit. Seeing how Glenys, Kerry, Jack and Shirley were struggling to cope with Aaron's increasing needs, she returned regularly to help where she could.
She and Aaron got on well, and by June 2006 she was caring for him for 11 hours a week, giving his family some much-needed relief from full-time caring.
By December 2006, he was in a wheelchair and his condition was deteriorating rapidly.
Initially he could move around in a hand-controlled wheelchair, and later this was equipped with sensor pads controlled by his head.
When he became unable to do this himself, others would do it for him.
Tania and Aaron would spend hours roaming Glenys and Kerry's farm together in privacy, away from staring eyes - he in his wheelchair, her walking.
"He loved to feel the sun on his face," Tania said.
And they had fun.
Aaron loved to encourage the hens and sheep to follow them, then watch Tania struggle to round up the animals after their walk. Or he would sneak outside in the wet at top speed, knowing she would have to spend the next hour cleaning the mud from his wheelchair tyres.
As Aaron found it more and more difficult to pronounce words, he spelt the letters out to make himself understood.
Conversations became part of the past, as communication was reduced to the necessary words to get through the day - shower, walk, drink, eat, hot, cold.
While his body faded, however, the disease left his mind unaffected.
For Glenys, watching her son's loss of speech was the most acute pain she had felt.
"He got upset when he couldn't talk. The frustration must have been terrible."
But as always, Aaron refused to let the new development break him.
Eventually the only part of his body he could control were his eyes - a repeated blink was yes, a stare was no.
Working through the alphabet, whoever was with Aaron would spell out his blinked responses to translate his thoughts.
Finding an itch could be an hour-long process, a natural blink understood as a spelled one caused confusion. There was no punctuation, no going back and no other way to relieve the screaming inside his head.
"One night we spent one and a-half hours trying to settle him in bed, going through every part of his body that could have been causing discomfort, and in the end it was the duvet," Glenys said.
However, Aaron managed to make himself understood and kept the ability to see the humour in life.
One day when Tania failed to guess what he wanted from the spelled out letters B-R-U, she called Glenys.
When they eventually realised he wanted to "brush his teeth", he quickly spelled out to Tania "Y-O-U-M-U-P-P-E-T".
During an afternoon with Jack, in total frustration at not being understood, Aaron spelled out the entire sentence "I-F-I-D-O-N-T-G-E-T-A-F-A-G-S-O-O-N-I-M-G-O-I-N-G-T-O-H-A-V-E-A-N-E-R-V -O-U-S-B-R-E-A-K-D-O-W-N".
Tania's work hours increased to 32 per week.
By the end of 2007, Aaron's wasting muscles had made breathing difficult and swallowing impossible, so he had to be fed through a tube.
"I used to think back to what the doctor said, that it was the most savage disease, and he was right," Jack said.
Aaron remained positive and acutely aware of how his condition was affecting his family.
"He used to say, 'I'm good as gold, Mum'," Glenys said.
And then he wasn't as good as gold.
Early in the evening on July 19, 2008, Aaron passed away at home, surrounded by his family.
For Tania, her relationship with Aaron remains one that could never be matched.
"I couldn't do it again, because in my eyes I've had the best patient first."
Aaron will be remembered most of all for the way he made others feel and the way he handled the disease that stole his life, Glenys said.
"He was the bravest, the most courageous person.
"He used to say, 'It's all good, I'm not frightened of dying, I've got no regrets'. You learn so much good out of the horrible."
For Jack, the thing that sticks most is something Aaron used to tell him whenever he sensed his father was feeling down.
"He used to say, 'You silly old bastard, just get on with it'."
- Abby Gillies is a student at Aoraki Polytechnic School of Journalism.
Motor neurone disease
• Motor neurone disease (MND) is a condition in which the nerve cells controlling the muscles of movement are destroyed. As a result, the muscles waste away.
• It can affect adults of any age, but is more common after the age of 40, and in men than women.
• About 250 New Zealanders have MND at any given time.
• There is a genetic link in about 5% of cases.
• There are three forms of the disease, defined by where a person is affected first - for about 65% of people, it is the legs, for 25%, the throat and for the remaining 10% it is the hands and arms.
• At first reduced strength or co-ordination is typical, as well as difficulty speaking or swallowing. Later on movement becomes limited and breathing is affected. Vision, hearing, touch and, in the majority of cases, intellect are not affected.
• There is no specific test for MND, and it may be difficult to diagnose in the early stages.
• Life expectancy of sufferers varies. The average is two to four years. However some people do live longer - for example, physicist Stephen Hawking, who was diagnosed in the 1960s and is still alive today.
• There is no cure for MND.
For further information contact the Motor Neurone Disease Association New Zealand www.mndanz.org.nz Source: National manager of the Motor Neurone Disease Association of New Zealand, Diane Robinson.
