Sunday 10 June 2012

Huntingtons Young Persons Camps (1994-98)


HUNTINGTON’S CAMPS
Wairarapa      - 1994
Camp Wainui, Wainuiomata
El Rancho, Waikanae -1998
“MEMORIES”
I get the call again.  YEEEEEEHHHHHAAAAA – not. I am again wondering if here is a role for me.  Dorothy is pulling back and I am not clear on what is expected.  It is the first year we have written contracts. I have just changed jobs, am moving house and my father has died in the last six months.  I feel overwhelmed and while not to the same degree as last year, am doubtful about my abilities.  Dorothy takes one look at my face as I walk into the planning meeting and knows what I am going to say.  Within 10 minutes she has defused the situation without me saying, “I am not coming” and has my interest up again.  I am reminded 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.
We can and we will try
Ann-Marie Stapp     10 May 1998  (age 32)


The first Camp was in 1994 – how many years ago was that? – I was living in CHCH and Dorothy still managed to track me down.  Thanks to her daughter and my friend.

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????  Well it went ahead and I began to appreciate Dorothy’s vision. The pre-camp reading to get me up to speed, set me on my heels and it quickly got filed away under too hard, don’t get too attached. I had no short definition for describing Huntington’s except that its full name was Huntington’s Chorea – the same base word for choreography – a description of the dancing movements made when movement symptoms are showing.

My memories of the actual 1994 camp are a little hazy.  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 and maybe it would help if he waited at the gates.  Bless the man.

On a personal note I was making the decision to return to Wellington to live as I had had enough of working for Bereaved by Suicide Society. Debriefing and counselling people within 72 hours of a suicide in the family was getting to me because the organisation didn’t have very supportive structures.  There were only 2 professionals employed to deal with an average of 60 new suicides per year plus clients who wanted to talk about suicides from years ago.  So when Dorothy invited me to attend – a camp up in the North Island, kind of close to Wellington – I thought oooooooo this sounds like fun. 

We rafted, caved, rock climbed, kayaked, swam and swore at each other and generally had a good time.  I facilitated inside activities about listening to each other, how to have fun and express feelings and to tell their stories.  A little ironic really in that I am not sure at the point of in my life I could have identified a feeling had I tripped over one.  I learnt fast on that camp.  One activity I remember using is – get someone to lie down on a large sheet of paper, draw round there 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 got the easy to real hard questions.  There were tears and feeling that blew me away and at the same time I felt privileged to help facilitate what these kids don’t get a chance to do!
I remember feeling very moved by the whole camp and learnt very quickly that a number of the young ones were having difficulty reading – which meant a quick modification of the programme.

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 on bringing one person up at a time and how they were being the centres of attention.

Have memories of Dorothy worrying about being chased by bulls that were actually cows!

Memory – it was camp of the Tortell family plus a committee member and me. We had to do all the cooking.   NEVER AGAIN.

Memory – Dorothy began her tradition of handing out pens and journals each year – this year she also gave out a small penknife.  NEVER AGAIN.  (Besides nothing could beat the size of my Swiss Army knife).

Memory – camp concert on the last night.  Little did I know this would become a tradition.  Where do these items come from?

Memory – of being really glad that I had taken my trumpet to call everyone together. They weren’t too impressed.  Nor did anyone know that this was to become a camp tradition.

Memory – camp finished with family coming to collect their children (now young adults) 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 on that camp.

I left camp that year pleased I had gone and made no further thought as to whether I would become part of the tradition.




                        Forest lakes, Otaki – 1995

So, here I am back in Wellington and I get a call “Dorothy Speaking – will you help again”.  OH.   OK.  I think hmmmmmm – this is the campsite that I attended when I had felt a calling to become a Salvation Army Officer and each year attended camps to prepare for this.  Hmmm.  Memories of the site itself of beautiful peacocks, fellowship, fun, a stunning old homestead and a chance to see these “kids” a year older. 

Forgot that the peacocks screech at unbearable levels at 6 in the morning, the old homestead is run down, the kids still don’t really know me or trust me that well and I am ill prepared having just had a major bereavement.

The helpers again are the Tortells and me with the addition of a new field worker and some volunteers from Huntington’s families.  Wow - was I ever grateful for that insight.

This year Dorothy skips the penknives and hands out bumbags.  Much easier to set ground rules around.  This time there were at least 25 kids and the programme I had prepared got biffed and I winged it. (Dorothy says she constantly admires me for my ability to do that – quite frankly it terrifies the hell out of me.)

This year I introduce 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 and this year we are prepared with alternative activities for the younger ones – books and individual attention before their antics demanded it from us.

We laughed. We cried.  We played.  We talked Huntington’s again.  We used the post box method as the previous year because it is anonymous as to who is asking the question.  The “kids” stayed up and talked and I watched from a distance what a year’s difference does to people.  I started to feel attached and enormously moved by again 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 then into 6 groups so they could to 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 bottle 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, feeling of anger and sadness and single flowers representing hope.  These were kept in tact so those family members who came for the barbecue could see the strength and wisdom of their children.  This they spotted straight away.

Memory – camp concert outside under torch light – the youngest member painting a face on his stomach and doing movements that were frightening. The rest was a repeat of the previous year.  Except for one item.  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.  (And that is not easy to get to happen).  That ritual left me wanting to come back to camp again.

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

I drive home and sleep for a week.




Akatarawa – 1996.

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 not in January (so us workers can have a summer holiday) but in the school holidays after Easter.  So no daylight saving to be used to our advantage and a drop in temperature. There is only one Tortell (Dorothy) and I. Lisa volunteers one of her friends.  (I think they are still friends J)

Another camp with previous memories – this one was the campsite I visited yearly as a teenager, with the Salvation Army music camps.

This camp was the hardest of all – an all time low owing to cold weather, poor support from the camp managers, 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.

I decide to begin the camp by asking each participant to take a piece of clay and make something that represents safety to him or her.  The exercise was difficult and some trod on other people’s work, and it was double time trying to get them to bring their piece up and say what it was.  By the end of the exercise there is a small village on the stage (thank god I remembered the fishing line to cut the clay and the tarpaulin).  Over the days some of the participants “visit” their safe place and I feel relieved that the exercise was OK for some. It is hard to hear in the evaluation that many participants are sick of talking about safety.  Maybe I have over killed it and the safety is already there and and and and and a….

The group did allow me to facilitate a conflict between the girls and boys over space and privacy.

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 if it is 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 there 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 Grays 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.





El Rancho, Waikanae – 1997
“Taking Risks”

The call comes again “Dorothy Speaking”– I am honestly surprised. 

I may have thought in 1994 that Dorothy is bonkers but I am now convinced that I am. J

On a serious note, personally I have had a hard year with a major illness of my own to contend with, my mother died unexpectedly and I am on leave because of all of this and I am wondering what I have to offer.  Plus the committee has hired in a recreational worker to do outdoor activities and I am a little threatened.  But I get to the first meeting to discover DAVID.  I knew David. I had met him on the Marae at university and he was doing his Masters in Recreation and Leisure while I was doing my Masters on Social Work.  PHEW.

As a team – we create a theme for the first time “Taking Risks”.  It was certainly appropriate for me. Was I going to cope again? Would the participants remember me?  Could I manage to create safety without talking about it?  Was I well enough to go?  Would their grief push me over the edge with my own?  Was I professional enough?  Could I work with this new team?  I guess it is kind of clear that I was having a professional as well as personal crisis! But I took the risk and believed in Dorothy’s vision.  This time the team included most of the previous years (Wendy and Dave) plus David plus Jonathan – an experienced camper and a god send, plus Mary from the Christchurch association.

So – comes April – I pack the trackies, the trumpet, the wood, the certificates, and a huge amount of doubt and cross my fingers.  Bummer – I forget the wand.

I arrive at campsite and am immediately impressed by the camping facilities.  It is like a motel unit.

Most of my fears are alleviated throughout the duration of the camp.  The numbers have risen again; there are less really 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.
-       Misbehaviour around use of drugs that we didn’t know about until after
-       A group of three young men sabotaging activities by not turning up, talking consistently all the way through, sniggering behind my back and sleeping during the day after spending all night keeping everyone else up
-       lack of sleep
-       great food
-       rafting
-       the managers idea of horse riding is sitting on a horse and being led round in a circle
-       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 for use of games to get the excess energy out at night
-       sickness
-       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.
-     Every second word being “please be quiet”
-       never finishing a sentence
-       introducing a music therapist
-       fear
-       not wanting to go home to face my life
-       creating T-shirts with fabric pens
-       having a group of 18 to 25 year olds
-       a stereo far too loud
-       a concert that was a non event
-       more Huntington’s questions
-       tears, anger, grief, frustration
-       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, which is ironic because some of us have not yet slept

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

We wind it up with me presenting the certificates again – the same cup as previous years and each participant brings up their T-shirt they have designed and a hat that as buddy has made for them that highlights their strengths.

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.






Oh god – it’s beginning tonight.  Am I organised?
Those were my thoughts for most of the day on Friday 17 April

I pack trumpet, trackies, new trumpet, music, wand, petrified wood, tarpaulin, duvet, own pillows, wallet, toothbrush. Will 6 T-shirts be enough?  Where’s my wet weather gear?  Am I all here? Where is this camp ground?  Phew only 13 campers to start with and most of them I know?

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 and then introducing. It only partially succeeds but at the meal table we are all sitting around and we get to know each other.  By the time we eat – David has them all trained in how to wear Studebaker wraps because the next day they will be swinging like Tarzan from the high ropes 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.

Strangely enough it was noticed.

In between physical activities by David 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 what 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).

Having identified the stresses, over the next 2 days I facilitated discussions on not so healthy and unhealthy ways of dealing with stress.  This was done using various activities.

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.  The depth of feeling from the campers was huge when we saw the condition of the horses.  I twigged this was the same guy that had had his pig farm closed down due to lack of hygiene. I don’t know much about horses but I know neglect when I see it. One of the campers had a year of equine studies and knew a lot about horses and agreed with me.  I will be reporting to the SPCA.

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 asked them no 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.

Saturday night saw the whole camp scrub up pretty well. Off we went to Valentine's restaurant – the restaurant where they manage to make all the smorgasbord food taste the same.  I was told by the participants that next year they would spend ½ the money and make a four course meal at the campsite.  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, knowing it connects me to my father – making various suggestions of how to glue it together and how to make it into jewelry.  But I was reminded of a story called the Obsidian Mirror.  The author had a gemstone called obsidian that was highly reflective and 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.

The Sunday morning saw me being taken down to the ropes course and I was dutifully hauled up and swung from a huge height. I was impressed with how safe the group was in working as a team.  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 – tidy up and off we go to the next campsite to start the next phase – integrate 20 more campers with this lot who have already bonded (12 left as one had to go home for work commitments). 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 because in effect I have had no break and the managers provide dinner ½ 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.

First hiccup happens during this time when the Marae notify us to say, “due to bereavement the Wednesday Programme is off”.  AAAAAARRRGGGGHHH.

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

Second hiccup happens when 3 campers who have been to all previous camps decide to continue previous camps atrocious behaviour by running around after lights out and keeping the girls cabin awake.  Three staff set a trap and has quiet discussion for so long they were so tired and asked to go to bed.  No more trouble from those 3.  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 reactors that can only be deactivated by assembling in pyramids of 6. They cannot touch them and must stay a foot away from the radiation. They didn’t seem terribly enthused until 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.  They thought we should keep silent like previous generations and not share information.  At that instruction 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. One in the piano, one in the fridge, another in a roll of paper and the piece de resistance was the one in the vacuum cleaner.  They only found that because I gave them hints- it’s noisy, its noisy sometimes, it’s something you should use more often than you do.  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 – was opening up the secrets.  

In regards to talking about Huntington’s, campers were given time to write questions and I finally worked out 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 on asking them what they wanted to do first they said, “tell our stories”.  Monday was too soon to start this and Wednesday was gonna be too late so Tues. afternoon was allocated.

Monday night I was sitting in the toilet when I overheard campers complaining about some boring brass band coming to entertain.  They did not know that what 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 a little information.

Cabin 8 debrief I missed that night owing to a quick trip home to sort out noisy and abusive neighbours.

Arrived back on Tuesday to 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.  I am doing my job.

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.  I finally understand the mathematics of all possible genetic combinations (I failed 6th form biology) and learn a definition that has uplifted my understanding

Huntington’s is – a progressive, neurological, genetic condition.

 I stop calling Huntington’s a disease and call it a condition.

Tuesday night we provide entertainment for the campers and in comes the ultimate in funguys (fungi). Mr. Fungus provided hilarious mime, juggling, jokes and camera throwing feats (mine to be exact because I mimicked him back by calling him “stupid”).

After a night of laughter, it was camp debrief time.  Oh oh. Trouble. Got Cabin 8 in and all I was getting was “fine” “ok” “yep”.  I pushed until I got what the problem was.  The subcontracted worker for the day was not wearing a helmet or ropes and therefore not being a role model for the young ones.  But wait – there is more.  There were two scenarios of sexual inappropriateness and innuendo.  To cut a long story short the next 24 hours were taken up with a conflict resolution process with those who wanted to be involved, to confront the subcontracted worker. To his credit he fronted up and took the feedback about his lack of role modeling.  However because of the request by the ones who had been abused by the inappropriateness, that was harder to confront. I did so one to one and he was told he is never to be invited back and the rest of his contract was terminated.  I became distressed at what had happened and resented having to facilitate such a process when these campers were already so vulnerable.

The result – one on one time for some campers, who need it, I learn a new conflict resolution process and all campers feel they have been listened to and a resolution is reached.

Wednesday is filled with outdoor activities, more stories, more pictures, silly games, flying fox, mudsliding, a picnic at the beach (a stunning glorious day for April) concert preparation, answering questions and having been entertained the previous 2 nights they 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.  I was charged with excess noise making and sentenced to 5 minute 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 prosperity.  All those that have been too 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 up roar 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 am reminded of the fine line I tread between insider and outsider status. I am reminded of the fact the while I am an outsider to the Huntington’s experience I am an insider to human experience.

I managed to sleep and miss breakfast.  The last day saw everyone working on pillowslips this year with the fabric pens. A motto started coming through:


I have a reaction to the word “try” but know that this is their process and I have to wait perhaps another year or two and maybe never, for it to develop. I stay rightfully silent.

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

The ultimate in all this description of events is that most of this is on videotape.  I get to see it over and over again and apparently when I was dancing on Monday night, everything danced. (oh great).

On a final note, 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.









One amazing period of my career that brings a smile to my face. I have met up with some of these young people – 13 years on, married and with their own children… oh how deeply we are connected..


Ann-Marie Stapp  27 April 2012 (age 46)

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