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7 Sep 16

Reflections 1994 - 1998

by Anne - Marie Stapp

Back to Annual Camps page

The first Camp was in 1994 - how many years ago was that? I was living in Christchurch and Dorothy still managed to track me down.

In the initial meeting I thought "this woman is bonkers!". I understood the motivation of wanting to provide a safe forum for young people to discuss this disease and its effects on young people. But organising a camp for 18 young ones from around the country? The pre-camp reading set me on my heels and it quickly got filed away under too hard, don’t get attached.

I think there were 18 young people eagerly awaiting the arrival of Lisa and I as we drove past the campsite, in the dark, 3 times before Lisa’s Dad spotted us. He had figured as it was an ass of a place to find that maybe it would help if he waited at the gates. Bless that man.

We rafted, caved, rock climbed, kayaked, swam and generally had a good time. I facilitated inside activities about listening to each other, how to have fun, express feelings and to tell stories. One activity I remember using was to get someone to lie down on a large sheet of paper, draw around the body and get people to show in which part of the body do they feel their feelings. Some people were quite rude!

The "talk about Huntington’s" session was done by getting the kids to put their questions into a box that we later handed round for people to read a question each. This way was anonymous and it got the easy to hard questions. There were tears and feelings that blew me away and at the same time I felt privileged to help facilitate.

I remember feeling very moved by the whole camp. This camp started the tradition of young people meeting to share their stories and making it through a camp where they received a certificate of achievement. I didn’t take the certificate presentation too seriously until I saw the effect it was having by bringing one person up and making them the centre of attention.

Finally camp finished with families coming to collect their children and sharing in a meal. I am introduced first hand to the different progressions of the disease and I am out of my depth. The young people took me by the hand and introduced me to their mums and dads with grace and aplomb that sees me very humbled and privileged to know every child.


So, here I am, back in Wellington, and I get a call "Dorothy speaking - will you help again?" Oh. OK. I think hmm ... this is a campsite I have been to before. The site itself has beautiful peacocks, and there is a stunning old homestead and a chance to see these "kids" a year older.

I forgot that the peacocks screech at unbearable levels at 6am, the old homestead is rundown and the kids still don’t know me or trust me that well.

This year I introduced the magic wand as the talking stick. The participants catch on and when they want to talk they ask for the talking stick. It lowers noise levels only one decibel from the previous year.

We laugh, we cried, we played. We talked Huntington’s again. We used the post box method again because it is anonymous as to who is asking the question. The "kids" stayed up and talked and I watched from a distance amazed at what a year’s difference does to people. I started to feel attached and enormously moved by what I saw and heard. This year I was privileged enough to be included in the conversation of older participants and their ethical dilemma ... "to be tested or not to be".

The highlight activity I facilitated that year was breaking them into 6 groups so they could build a sculpture out of anything they could find within the perimeter of the campsite. What resulted were 6 sculptures made from twigs, stones, leaves, branches of trees, plastic bottles tops and other bits of litter. They ranged from the abstract to the obvious ... a headstone with RIP on it. The sculptures represented the people who died, other people’s reactions to seeing someone with Huntington’s, feelings of anger, sadness and single flowers representing hope. These were kept intact so those family members who came for the barbecue could see the strength and wisdom of their children. This they spotted straight away.

The camp concert was outside under torchlight.

The youngest member painted a face on his stomach and did movements that were frightening. In another act, three of the participants had gathered flowers, placed them in water and developed a ritual in which we all were invited to come and take a flower and say what the camp meant to us. I was speechless. That ritual left me wanting to come back to camp again.

The next day I was presenting certificates and was pleasantly surprised to hear a number of participants tell me that they still have their certificates from the previous year. I know for sure that Dorothy’s vision is right on!

I drive home and sleep for a week.


The call comes again, "Dorothy Speaking". I have no hesitation – I pack the trackies, the trumpet, the wand and a new precious personal momento, a piece of petrified wood. This is to be the talking piece for inside as it is smaller and I am to use it an activity that talks about the importance of connection.

This time camp is in the school holidays after Easter. So no daylight saving to be used to our advantage. This camp was the hardest of all – an all time low owing to cold weather, not being able to get the campers to gel and a normal part of group development being wanting to stay in the comfort zones of the previous years.

The highlight for me was introducing the wood and starting to talk about some spiritual aspects of being alive and in a Huntington’s family. The moral of the wood is that when left to sit alone it is very cold to pick up but once held for a while it becomes warm and lovely to hold. The participants hold that wood as they tell their stories and answer each other’s questions. I am reminded of the strength of human warmth, sharing and being prepared to bond.

I present the certificates – too hurriedly because the transport is waiting and there is pressure to vacate the campsite for the next camp and am disappointed in myself.

I am rewarded with a copy of Alison Gray’s book "Genes and generations" – stories by NZ people with Huntington’s. The young people at the camp, which are in the book, sign it and I am moved by what I call "another piece of petrified wood".

I hold onto the knowledge that by my being at the third camp I am providing connection and consistency. In my value system – the two most important aspects of human relationships. I am hugged and hugged again as the participants leave the site and I hope I see them all again.



The call comes again "Dorothy Speaking". I may have thought in 1994 that Dorothy was bonkers but I am now convinced that I am. As a team we create a theme for the first time "Taking Risks". It was certainly appropriate for me. Would the participants remember me? Could I manage to create safety without talking about it? I took the risk anyway and believed in Dorothy’s vision. So, come April, I pack the trackies, the trumpet, the wood, the certificates, and a huge amount of doubt and cross my fingers.

Most of my fears are alleviated throughout the duration of the camp. The numbers have risen again, there are less young ones on the camp, the campers remember me and I am treated to lots of welcome hugs. I am even given a hand to unpack my car.

My memories of 1997 are mixed:

The problem of different age groups; lack of sleep; great food; getting into trouble on the water when catching the raft under a tree – resulting in a deflated raft and a terrified group of participants and a horrified me; having access to a gym; water fights; the flying fox, (I was just within the weight limit), and being left to dangle over the water when the catchers missed me; creating T-shirts with fabric pens; Dorothy (all 5 foot of her) walking around the camp site with a bass drum, in lieu of me trumpeting, for the wake up call.

We end the activities with my most favourite of all, a 10-minute helicopter ride over Waikanae and a stunning view of Kapiti Island.

The camp has become bigger, brighter, harder to manage and I have watched most participants take risks and I know that yet again I have provided connection and consistency.



I get the call again. YEEEEEEHHHHHAAAAA — not. I am again wondering if there is a role for me. Dorothy remindeds me of her vision, the support I am to her and my personal ethos.

On the evaluation from 1997, and the request of the 18 to 25 age group, we are running 2 days with them to help them be the leaders. We are creating a structure of paid staff and unpaid support, with the next layer of young adults learning responsibility and leading with our backup.

Friday night comes and goes. Mostly goes at the railway station where some campers have missed rendezvous time. I attempt an exercise of solitude and thinking about what the participants want the others to know about themselves and then introducing themselves. By the time we eat they are all trained in how to wear Studebaker wraps because the next day they will be swinging like Tarzan from the high rope course.

The next morning I feebly bugle from too far away and collapse back into bed blissfully aware that I am missing the swing from a 15 metre height attached to a rope and a harness with 9 kids pulling you up and down. In between physical activities, I ran a process that looked at stress. By the end of the day I needed them to be talking about Huntington’s. So in the morning I started looking at ground rules. One of the ground rules being no put-downs. I sent a handout around the group about how to do this and it was all on. Tears, frustration and how do you cope with the constant nagging and put downs from a Huntington’s effected parent? My task was not how to get them to open up but how to pace them. The session lasted an hour. Later on in the day, I got them to identity firstly – why should we have any discussion at all about Huntington’s? This followed with what is stressful about Huntington’s (feelings, physical safety, fear, responsibility, death, ethical dilemmas). Over the next 2 days I facilitated discussions on not so healthy and unhealthy ways of dealing with stress.

Saturday afternoon – the infamous horse ride. Having had unsuccessful attempts at horse riding expeditions at previous camps, I was glad of a 2-hour ride – my hips weren’t though.

Before dinner each camper was given 10 minutes to prepare a 5-minute story about his or her experience of Huntington’s. Each person held the petrified wood. In the past people have just slid it across the floor to pass onto the next person but for some intuitive reason I asked them not to do that as I was scared that it would break. Seven chose to utilise this time to verbalise their stories and it was a very powerful experience. We debriefed with some silly games and scrubbed up pretty well for the trip to Valentine's restaurant. I was told by the participants that next year they would spend the money and make a four course meal at the camp site. I was relieved to hear that plans are being made already for the future of the camps. Just not at that point – we still had 5 days to go!

After Valentines I dropped the wood on a petrol station forecourt and the wood broke in half. Many campers were very sad, making various suggestions of how to glue it together and how to make it into jewellry. I was reminded of a story called the Obsidian Mirror. The author had a gemstone called obsidian. At the end of writing her painful life story she accidentally knocked it off her desk and it broke in half. After initially grieving she realised that it was fitting that a rock that held so much pain finally give way and she now keeps both halves sitting on her desk. I feel the same way about the wood. It can only hold so much pain and now I can show people the wood grain on the outside and the stone grain on the inside. Another analogy of difference and appearances and life with Huntington’s.

The Sunday morning saw me being escorted down to the rope course and I was dutifully hauled up and swung from a huge height. My hair was accidentally included in the harness I was using which effectively meant I was hanging from my hair as well as harness. As I was instantly hauled to around 8 meters I shouted "Down — my hair is caught" and I was down faster than I had been lifted. I felt listened too, respected and glad of a well-trained team.

Sunday afternoon, we tidy up and off we go to the next campsite to start the next phase. Integrate 20 more campers with those who have already bonded. I follow a vanload of campers in a van that doesn’t go over 40km on hills. A 1-hour trip became 2 hours and I am ready to scream. The managers provide dinner hour before they are meant too. So we resorted to name tags. After dinner the older young people facilitated the integration and introductions and all the staff knew that this camp was already

50000% smoother than previous years. We breathe.

The staff had the task, each night, of debriefing the older young ones from whom we can’t decide on a name. Some 13-year-old had insisted all the campers be called young adults, so was it to be the 12, the apostles, cabin 8 or the wombles. One camper thought I was saying fossils when I was saying apostles – it stuck.

A hiccup happens when 3 campers decide to continue previous camp’s atrocious behaviour by running around after lights out and keeping the girls cabin awake. Three staff set a trap and have a quiet discussion for so long they were so tired and asked to go to bed. Hehehehehehehe.

Monday goes smoothly with various outdoor games. While they are playing. I am hiding 18 hard-boiled eggs around the campsite. When the campers come back I start the session with getting the 8 campers up on the stage that have attended all camps. I pretend that we are going to start the discussion on Huntington’s. All of a sudden my pager goes off. I advise that while out of the campsite the French had planted 18 nuclear devices that can only be deactivated by assembling them in pyramids of 6. They cannot touch them and must stay a foot away from the radiation, I told them the reason for this vicious attack was that the French had heard we were having a camp to talk about Huntington’s and didn’t want us to talk about it. The campers went for it. They all rushed outside to look in drains etc not realising that while I told them there were no eggs in cabins, there were some in the hall. Hehehehehe again! When we debriefed from the activity about what was learnt, I got all the usual stuff about team building but the insight of the day – "uncovering secrets".

I realised this camp that there were two things needing to happen – question time plus time to tell stories. This was a new development and one that took some managing. That night they wrote their questions and thought about their stories.

Monday night I was sitting inside when I overheard campers complaining about some boring brass band coming to entertain. What they did not know was that they were getting was a carnival band (The Wellington Carnival Street Band that I play in) that had them up dancing, rocking, playing percussion and hooting and whistling. The band went away lifted and the campers learnt not to make assumptions based on little information.

On Tuesday, after rafting and rock climbing, it was story time. After a lot of tears and other various emotions most campers had drawn or written a piece on a long sheet of paper that we all walked around and read. Dorothy likened it to the Wall of Remembrance in Israel. I was reminded of the power of silence while walking through Anne Frank House in Amsterdam. I know by the response to the activity that the safety levels amongst campers are better than ever before. I am hugely relieved.

Then it was answer time for Huntington’s questions. Another reminder of the importance of accurate information. Wonderfully facilitated by Dorothy and 2 helpers from Huntington’s families.

Tuesday night we provide entertainment for the campers and in comes the ultimate in fungi. Mr. Fungus provided hilarious mime, juggling, jokes and camera throwing feats (mine to be exact).

Wednesday is filled with outdoor activities, more stories, more pictures, silly games, flying fox, mudsliding, a picnic at the beach, concert preperation, answering questions. The campers, having been entertained the previous 2 nights were instructed to entertain us! And entertain us they did – with sick jokes, percussion instruments, skits, a visit from the Spice Girls and a court (Did I see Dorothy being a Spice girl?). I was charged with excess noise making and sentenced to 5 minutes with a sock in my mouth. I was relieved they chose a clean one.

We finish the evening with a huge cake with "No 5" on it. Photos are taken for historical posterity. All those that have been to more than 4 camps are invited up and then those at all 5 camps got to cut the cake. I am behind the camera when there is a sudden uproar that I need to be in the photo. I try unsuccessfully to remind them that this is their camp and it is their cake.

I managed to sleep and miss breakfast. The last day saw everyone working on pillowslips with the fabric pens. A motto started coming through: ... We can and we will try.

Then it was presentation of certificates time. A new format this year and two five time campers requested the old cups. They showed their pillow slips and received their certificates and affirmation posters that everyone had written compliments on. Another moving time. I left relieved I never have to see another mixed vegetable or mince again in my life (yuck).

We were taught a final song that we all sang as a group. It is this song that highlights that I am on the right track with my message of connection and consistency. I know I will come back over and over if invited again and again.

Don’t let anyone ever tell you that you’re anything less than beautiful;

Don’t let anyone ever tell you that you are less than whole;

Don’t let anyone ever tell you, your being is less than a miracle;

How deeply we’re connected soul to soul;

How deeply we’re connected soul to soul.

(Ann-Marie has an MA in applied Social Work and is MNZASW acredited)

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Appreciation and thanks must go to Judy Lyon for compiling the wealth of information available
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