Lifestyle

From absolute silence

When Lloyd Ellison, RNZFB Deafblind Services Access Worker (South Island), first met Graeme Williams, he was amazed and overwhelmed by Graeme's situation. Over time, they've grown to know each other better and so this is Graeme's story, in Lloyd's words.

Picture: Diagram of a cochlear implant.

"Graeme came to my attention in mid April 2010. It was a few weeks before he was to have surgery for a cochlear implant. When I first saw him, he was wheeled into my office by his two carers, because Graeme also has Multiple Sclerosis, is totally blind and profoundly deaf."

But he hasn't always been this way. Graeme became a member of the Foundation in January 2002. At the time, he was partially sighted, completely deaf in one ear and severely deaf in the other. The severity of a hearing impairment is ranked according to how loud a sound must be to be detected. The impairment can be ranked as mild, moderate, severe or profound.

Over the course of four months in 2002, Graeme lost the remainder of his sight. Then in early March 2010, after years of managing with a hearing aid in his only hearing ear, he woke one morning and could hear nothing.

Absolute silence.

For many people, when they experience hearing loss they also feel a great sense of fear, major confusion and sometimes anger: "Imagine losing all that 'mood music', the everyday sounds, the idle chatter between people, a car driving past, truck noises, music on the radio," says Lloyd.

To lose a sense that most people take for granted is something few can appreciate. To lose two senses entirely was devastating for Graeme.

But help was just around the corner and it came in the form of an assessment by the Southern Cochlear Implant Programme that established his candidacy for cochlear implantation, and then a lucky break with the necessary funding.

Graeme and his carers made the drive from Cromwell to Christchurch for his cochlear implant surgery on 6 May this year, and then went back home so his body could heal.

"The day that someone has their implant switched on is always an anxious day," Lloyd says. "And Graeme's day was no exception. I had the honour of being invited to attend, along with Mervyn Cox, President of Deafblind NZ Inc. With Graeme's two carers, his Cochlear Implant Audiologist, his Rehabilitationist and other staff from the Cochlear Implant Programme centre all in the room, it was quite a gathering!"

"Graeme worked with his audiologist, setting the listening programme, called a MAP. Graeme's facial expression was neutral. His two index fingers placed carefully over his lips as if deep in thought. His head lowered slightly just waiting for sound. MAPping took almost an hour and then his implant was switched on.

"It took just four minutes before Graeme looked up, his fingers dropped from his lips, his face took on a remarkable transformation and his mouth turned in to one big smile: 'Wow, I can hear you!' he proudly stated. I can tell you that there wasn't a dry eye in the room that day," says Lloyd.

Graeme's was a remarkably fast recovery. It can often take months to achieve such good speech and sound understanding. As a result, he now has a reasonable quality of life using his new hearing.

Graeme continues to receive MAPping and rehabilitation through the Southern Cochlear Implant Programme. But for now, he couldn't be happier.

Leadership camp

In July, a group of 12 teenage members stepped up to the challenge and completed a leadership training course in Papamoa.

The students had previously attended other Foundation programmes and wanted to learn how they could contribute and help younger members experience the activities and programmes they had enjoyed so much.

The focus was to gain knowledge about leadership and understand the qualities, values and skills needed to help younger students get involved in activities and build confidence.

One of the students said they would like to create an ideal programme to give blind and partially sighted kids "the chance to participate in creative activities which would be difficult to complete in a normal situation."

The programme had a balance of learning, with practical exercises, team activities and challenges. They all played hard, ate well and supported each other to form a cohesive group that could problem-solve as a team.

This amazing group of young people are our future leaders as they go back to their respective schools to continue their education. We look forward to seeing if they pursue their interest in becoming volunteers and contributing to recreation programmes.

Photograph: Aspiring to new heights. Students on a rock climbing wall.

Training the transport providers

Blindness awareness training for transport agencies is just one of the business services the Foundation offers to ensure people are aware of the needs of blind and partially sighted customers.

Chris Orr, the Foundation's Community Education Advisor, recently held a training course with Fullers, Auckland's leading ferry operator.

Fullers' staff learnt about blindness and how different eye conditions affect people's vision and how to guide a blind person. They also learnt how to provide the 'perfect journey' to a blind passenger.

Chris, who is blind himself, says "The perfect journey begins when staff introduce themselves and ask if you need assistance. Then, if you need it, they help you get to where you're going. This can be pretty tricky with ferries, particularly when there's wind, rain, a lot of noise and movement."

But it doesn't stop at that. "Once you're on the ferry, it helps to know about your surroundings – it's all about familiarisation. The biggest lesson I teach the staff is to ask," Chris says.

Photograph: Chris Orr and a Fuller staff member practise the art of guiding.

Fullers Onboard Service Manager, Wolfgang Haizl, says the training has made his staff much more aware of the challenges and needs of blind and partially sighted customers.

Reach for the STARs

Did you know that 61 per cent of working-age Foundation members are unemployed? Braille is an important literacy tool that increases work opportunities.

We now have a new braille teaching programme called Simply Touch and Read (STAR) which teaches adult members to read and write braille.

STAR reflects contemporary language and uses Unified English Braille, New Zealand's official braille code. The scheme incorporates contracted braille, where individual braille signs represent whole words or groups of letters.

One member who attended the launch of the STAR programme in Wellington said: "Braille has opened up my world again."

Braille may take time to learn, but it's a skill for life. It was created in 1824 but the system doesn't date. In fact, today braille works with, and enhances, technology. Braille allows greater access to information, a sense of independence and personal empowerment. It makes everyday tasks like writing lists or reading food labels easy.

If you're interested in learning braille, or would like more information about STAR, phone 0800 24 33 33 and ask to speak with your local service manager.

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