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)
