Monthly Archive for May, 2004

Olsem wanam yufella, .mi wok long time long NZ, mifella kam long Malakula en hemi plen, foldaon long Norsup.

Hello all, I worked for a while in NZ, then I came back to Malakula by plane, my plane landed (fell down) at Norsup.

Thought we’d have a little Bislama 1.01. I love the language and find that I can understand more and more as time goes by.

I arrived back in Vanuatu on the 19th of May and will be here until the end of June. In my last report we surveyed the damage from the cyclone, as most of the roads had only just opened. This time we were swinging into action to start the rebuilding of the facilities needed.

We started in Aulua where the village water tank had been hit by a coconut tree. Russell, an independent NZ volunteer who works alongside the Malakula Medical Relief Trust, and I managed to remove the damaged panel from the water tank and panel beat it into a semblance of its former self. We refitted the panel to the tank and poured concrete onto the base of the tank to stop any leaks. The tank will take up to a month to dry, by which stage we hope to have the pipe-work on site and connected.

Russell and I stayed in the local village, living in a grass bush house assigned by our host. Our host, Chief Harry, had organised a “White fella swim house” for us to shower by bucket and a local woman cooked us kaekae. We finished the tank and were told that they were putting on Kava for us. For those not up with the play, Kava is the ceremonial drink that is consumed for just about any reason, but is a sign of respect if offered and made especially for you. It tastes a lot like muddy water, has a bitter taste and numbs the mouth fairly quickly.

The main hardship of the trip was picking up 100 bags of “sandbeach” (builders mix) from one side of a very wide river. Fifteen bags were loaded into the van at a time and taken to the village 30 minutes away where the bags were transferred into a 4-wheel drive to climb a mountain track to the tank. Word of our work spread like wildfire and before we left we were asked to look at the water supply of seven other villages, all in close proximity.

So off we went, walking through dense bush, up steep slopes, emerging on the edge of 150-foot high waterfalls, it was breathtaking and a bit scary at the same time. We managed to fix a few leaks and replace two taps, which to us was minor, but to the locals we were mana sent from above. In appreciation of the help offers of fruit and vegetables came from everywhere. These offers were declined, as they needed the food more than us.

The damage sustained by the island from the cyclone is worse than most expected. Most villages are affected in some way. One village elder asked if I could supply him with some saucepans and cutlery as the village had lost everything in the cyclone. Others have no water. We are just scratching the tip at the moment and our work is cut out for us. I do love a challenge…only another 200 tanks to build.

This month…slowly we are making a difference. Lukim yu (bye for now).

August was so hectic! It was a riot of movement and colour, and I was so busy I hardly had a chance to turn round, IT WAS GREAT!

The Muscular Dystrophy Association got off to a fantastic start with the screening of the Auckland Medical School Student’s Association Revue. It’s like a capping revue, except that it’s done by the second year students and takes place in the middle of the year! They had kindly decided to support us with the proceeds from the show, as they study neuromuscular conditions in the second year. We got tickets to the opening night as well as to the swanky do beforehand. The show was great! I haven’t had so much fun in a long, long time. A series of comic skits and a lot of digs at Engineering students!

The first Saturday of the month we decided to call “Have a Go Day.” We invited all the boys with Duchenne Muscular Dystrophy and the kids with Spinal Muscular Atrophy who are in power chairs in the Waikato region to have a go at wheelchair sports. We got them all together in the Hamilton Girls High Gym, gave them hockey sticks and let them rip! It was a really moving day, talking to the Mum’s and watching the joy on the kid’s faces as they not only mastered new skills, but also learned to play wheelchair hockey and spend the whole afternoon with other kids just like them. You don’t really realise how isolated the kids feel until you see them belonging. It was so uplifting and we got such a good turnout that we’ve decided to make it a monthly event, get a team together and start competing with the Auckland kids.

The next week I was off to Dunedin to visit with Margaret and Anita, other World of Difference recipients. However, I missed the opportunity to see any penguins! I was there for the Kaikorai Valley School Wearable Arts Awards, an event organised by some extremely dedicated teachers and amazingly creative pupils. I took the opportunity to talk to Years 7 & 8 in Assembly to explain all about Muscular Dystrophy because they have a fellow schoolmate in year 9 with Duchenne.

The show was INCREDIBLE, look at the pictures and you will see just how amazing the garments were, how talented the entrants are, and how privileged I felt to be part of it all. The fashion parades were interspersed with performances from some of the schools top dancers, musicians well as a surprise Teacher’s segment. The show was so popular they had to shoe horn them into the hall. I was, and am still lost for words.

You will remember how I told you about the documentary we made with the help of the AUT students? Well I had a brainwave, why not burn it on to a CD and send it out to all tertiary institutions involved in the education of health professionals as a sort of ‘calling card’ for our neuromuscular educator? We sent out over 60 CD’s, and I bet every nursing school and Polytech in the country invites Judy to go and speak next year!

This month I also spent time working on getting one of our families a new van. Two of the kids I met in March at Kidzfirst, a brother and sister, both with Spinal Muscular Atrophy, need a van that can take two wheelchairs. The van they have only takes one, and their poor Mum has to spend half her day going backwards and forwards, making double trips to school and playcentre etc. Sometimes she carries the littlest one, but one wet, winter day she slipped whilst carrying him and broke his leg when she fell.

They are such a lovely family and their life would be so much easier if they got this van, I hope that our application to a community trust is successful. We will keep positive, and if this application doesn’t yield us the money then we will just keep trying. I don’t have to dig deep to find the motivation in this job I can tell you.

See you next month.

Sometimes it pays to listen to the old adage “be careful what you wish for.” May was so hectic I hardly had time to think!

I got straight into it at the beginning of the month with my first unplanned endeavour, applying to make a NZ on Air funded documentary about neuromuscular conditions (NMC’s). People with NMC’s tend to be very creative when it comes to finding ways to manage their increasing muscle weakness, such as the man who was forced to crawl onto the train. Everyday members of the Muscular Dystrophy Association find themselves forced to do little things that might seem just as humiliating or strange to able-bodied people. For instance, a 30-year-old woman who can’t pick up her 9-month-old baby if she is standing up, or an 82-year-old man who can’t climb the stairs in his home, so he crawls up them every day. Many 82 year olds can’t climb stairs and many wouldn’t even try, however this particular man would, so he does, in the best way that he can, because he is not going to give up.

Those with NMC’s will do anything for independence, and it suddenly came to me that through a documentary of their day-to-day lives I can spread a positive message about the Muscular Dystrophy Association, our members and their lives, and reach all those kiwis who have never even heard our name.

I think it’s a compelling argument, and luckily the production company and TV3, who will screen the series, think so too. Filming begins on the 14th of June so I have spent this month talking to our members and compiling a list of people who are willing to go on camera to talk about their lives. It has been so good meeting all of these people, even though it can be heart wrenching. My goal is to approach people who have a broad mix of conditions, from different age groups, ethnicities and genders, to represent the fact that although NMC’s are genetically inherited conditions, no one is immune.

Perhaps only a small number will watch the programme when it screens later this year, but small in television could mean 100,000 viewers, and that is a huge reach! I have also commissioned our new profile-raising advertisement, and I am looking forward to seeing what ideas are generated. I have been looking at unifying our branding so that we don’t confuse too many people with our different messages.

Finally, we have been editing the AUT documentary that we have been making and will take delivery early June – it’s looking great, I can’t wait to show everyone.

See you next month!