1. What are the things I have to avoid?
2. Why donÕt we move away from the city?
3. What are my special interests?
4. What is it like to spend eight years indoors?
5. What do I remember of being outside?
7. Do I think there is a purpose in suffering?
8. What are my greatest hopes for the future?
11. Why donÕt I like the label ŌBoy In BubbleÕ?
12. How
did my rainforest come about?
1. What are
the things I have to avoid?
My body has a problem dealing with a wide range
of chemicals so my diet is very limited, (but donÕt assume that means uninteresting
because Mum makes sure itÕs varied and interesting in presentation even
if the number of ingredients is small). It also means that my environment
has to be controlled and kept free of the same wide range of chemicals.
This is done by rigid controls on what comes into my area with all things
being well aired first and people required to especially prepare to come
into my world. The ambient air is purified by large machines
which re-circulate the air constantly 24 hours a day through both HEPA
and activated carbon filters. However, my breathing air comes from
a wonderful machine IÕve named Rhuagh. It was designed and built
especially for me by Peter Howard at SMC pneumatics (with help from MSA,
Atlas Copco and Cummins of Lansvale) and it supplies me with ultra pure
air using a compressed air system. Therefore, within my environment
the things that are avoidable have been eliminated thus the only chemicals
that get in, seep in from the outside air. ThatÕs my big problem
- smoke, highly perfumed flowers, paint, glues, insecticides and herbicides
etc. things that result from activities in my local neighbourhood cause
me to become ill but at present we canÕt stop that happening. We
have sealed everything we can but air will find a way in and as we have
a re-circulatory air purification system we need some fresh outside air
so as the oxygen levels in my air will stay at the correct level.
What I look forward to most is to be freed from becoming sick because someone
out there is doing something that upsets my bodyÕs chemistry.
A group of my friends have formed the Jonathan
Wilson-Fuller Foundation to raise funds to provide me with an internal
positive pressure air purification system which will mean my purified air
will leak out, but, no air from outside will leak in, then I will be safe
in my own home and the activities of those in my neighbourhood will have
no bearing on my quality of life.
Return to questions
2. Why don't we move away from the city?
1. My parents considered this option when
I was quite young and discussed it with my specialist but his medical advice
was for them not to move but to make our home as safe for me as possible.
(We actually did move to the country for trial periods of some weeks in
length on several occasions when I was younger but it did not work out
to be an advantage to me health wise.)
2. My parents have spent many thousands
of dollars in making our home as safe as possible for me. They have
also created a rainforest to protect me from the direct flow of neighbourhood
air. Therefore, inside and out a lot of time and effort is invested
in our home for my safety.
3. Scientific evidence shows that current
agricultural practice results in rural air pollution being just as bad
for me as city air pollution.
4. To move out of the city would mean I
would be further away from my doctors. As my condition is still not
well understood, this would not be a good thing to do either from the medical
or psychological point of view.
5. To move away from here would geographically
separate me from my many friends. As my friends are extremely important
to me in many ways any action that would result in my seeing them less
would be detrimental to my psychological well-being.
6. Another problem with moving is that
we would have to find a ŌnewÕ home. If we were to move to an old
home there would be the problem of an unknown chemical history. We
would not know what sprays or fumigation had taken place with what chemicals
over the years and many chemicals used in such ways have long-life residues.
A home newly built, even to accommodate my requirements to the best of
our knowledge, I would not be able to live in until the ŌnewnessÕ of the
materials used had out-gassed. From our experience that would be
at least two years. Financially that is completely untenable for
us.
7. It would be traumatic and psychologically
devastating for me to leave our rainforest. The rainforest garden
was originally a dream and is now a source of inspiration, wonder and spiritual
enrichment. I am deeply proud of my forest, my window on the natural
world, and it gives me peaceful joy even by moonlight during the long wakeful
night hours. It has become an integral part of my coping mechanism.
Thus, based on medical advice, personal experience,
mounting scientific evidence on the type and extent of air pollution and
consideration of the psychological impact of relocation, we consider the
relocation option is untenable. Rather, we have progressively and
radically adopted measures, to establish a safe haven, an environment as
chemically free and inert as possible, given the limits of our financial
capacity. Return
to questions
3. What are my special interests?
I love reading about a variety of things, planes, ships - the hardware of the war machine but don't get me wrong - I am a pacifist through and through. I love studying myths and legends and finding out about ancient cultures. Also high on the list is space flight, exploration - the whole space scene. Then on a less intellectual note I love science fiction and good fantasy and of course computer games, board games, role playing games. I enjoy watching TV and videos and most of all sharing time with my friends. I love the beauty of nature and am an ardent environmentalist. In short I am interested in people and places and things in the past present and future and of course the rest!
I spend my time enjoying my interests and completing
my studies. Life here is never boring, and I mean never! There
is always something happening so much so that my really close friends say
that if they go away for more than a couple of weeks they begin to lose
track of what is going on. Return
to questions
4. What is it like to spend eight years indoors?
I donÕt know because while I have physically spent
that time indoors my mind has not. From a physical point of view,
as I stay indoors as self preservation and to maximise my quality of life,
therefore, I think the most honest answer to this question is, that it
has obviously been better than spending the last eight years out of doors.
Sure I would like to move around like everyone else, just like the blind
would like to see and the deaf to hear, but really you have to live each
day to the full of its and your own capacity, nothingÕs perfect in this
world and life will always be what YOU make it.
Return to questions
5. What do
I remember of being outside?
I presume I remember as much as anyone else does
of their life 8 years back - memories are selective, my memories are of
riding my bike, hitting a cricket ball twice over the fence while on holiday
on the Central coast. I remember the sea, the sound, the wind, the
power, the smell, the spray, chasing endless ebbs and flows of the wavelets
on the sand, the storm coming while on the beach just as the sun set, of
times with Pa, of visiting, of concerts, of lessons - I have like anyone
else a bank of wonderful images. But please don't assume I'm cut
off from outside and from Nature, that I could not bear for it is my renewal,
my inspiration and more. I live in a rainforest, my window does not
even really separate me from it for it is home to spiders! Mum and
I have a disagreement as to how many spiders webs on window are acceptable!
Anyway as soon as she cleans them off the spiders re-build because she
would never kill the spiders. The sun and the moon light shine through
and make foliage patterns on my walls. On this idea of separation
from Nature, a pane of glass cannot separate me from outside - the essence
of my being is not my body; my mind is not confined, contained -
it is free to wander and wander it does.
HPM are installing an Oscar programmable system
of lighting in my forest. Because I love my forest so much the Starlight
Foundation are lighting it, with the help of HPM, so that its beauty will
be breathtaking at night. This will allow me to be creative with
exposing its beauty during the night and help the long nights become more
bearable. Return
to questions
My instant response to this question is - What
daily routine? My illness is such that the problems it casts on my
way are unpredictable therefore to have a Ōdaily routineÕ as such doesn't
make much sense. Because I am trying to complete a prescribed course
of study I have to try and program for each week that a certain amount
of my work is covered by the end of the week. As individual days
are unpredictable I have learnt it makes more sense and is less damaging
to oneÕs self image, if one programs to cover a set amount for the week
but allow some free or catch-up time if things donÕt go as planned.
This is not rigid or as cumbersome as the explanation makes it sound.
I work on priorities, I have an aim to achieve a certain amount within
a week and IÕm determined to do it, somehow. However, I try to be
realistic and if my health takes a dive, I take time out and try to accept
that as being realistic. You note I say try because sometimes itÕs
frustrating to say the least. Return
to questions
7. Do I think there is a purpose in suffering?
I believe there is a purpose for all things and that all things are part of a process, so I answer yes. But yes is far too simplistic an answer and it is something I have thought about from time to time - I wrote a poem about it in 1989 so IÕll give my answer as a poem for I feel it is both more complete and precise.
WHY
Sometimes I find it hard
To understand,
Just why life is like it is . . .
For I can see the beauty
Of NatureÕs artistic hand
And feel the love
That every day surrounds me
And know the peace that God can give.
Yet
When the pain of life is bad
ItÕs like looking out from a hole,
A deep deep hole
In which I am alone.
Yet when IÕm feeling better
I wriggle out and see
That suffering in so many forms
Is just one part of life
That helps us to appreciate
The good things when they come.
Jonathan Wilson-Fuller (1989)
Return to questions
8. What are my greatest hopes for the future?
(i) Generally speaking:
IÕm hoping for a upsurge of ŌsensibilityÕ - that we can have a more rational and sensible world. That the concerns for the environment will be put in their true perspective - there can be no economy without a Natural environment, however, the environment can exist without an economy. Therefore the environment must be preserved and cared for as there are more generations to come - we cannot deplete all the stores of Nature for ourselves. The Natural environment is the inheritance of all generations. Now you have proof I'm a "greenie"!
I would like us all to reconsider the concept
of the "right of the individual". That is the right of any individual
within our society to do anything they please as long as it is within the
law. I would like us to considered that the flip side of this right
is the duty of responsibility towards the rights of others. I feel
this is the sense of community that will make life for all of us, now and
in the future, of a much better quality.
(ii) Speaking of hopes concerning my health and quality of life:
Recently the University of Newcastle has made a big breakthrough in understanding my condition and this led the way for the University of Sydney to be able to define experiments to take that understanding further. I am extremely grateful for the involvement of these two Universities and see their work as the hope for my present and the light for my future. I realise that there is still a long way to go before they can define the possible ways in which modern science/medicine can assist me but IÕm really hopeful the understanding gained by their work will provide me with a way forward so that things on the health front will improve. A cure would be great but if the problem is genetic thatÕs a bit too much to hope for, but you never know.
I'm hoping for the new air purification system
which will stop smells from outside coming into my environment. Then
my well being is not in someone else's hands.
In a couple of my poems I have deal with this
theme.
SHARING
It blows in on the wind,
It blows from all around,
It's delivered in the rain,
It runs into the dam,
It's in the soil and in the rivers,
We put it in the drains and drain it to
the sea,
It's in the sea, it's in the fish
Our waste taints many places,
For we've spread it far and wide.
We breathe it in the air,
We drink it in the water,
We eat it in our food.
And it doesn't really matter,
How much I want to hide,
No walls or fences can set me free,
I'm sharing,
We're sharing,
Our habitat,
The environment our society's created
From satisfying of our demands!
Jonathan Wilson-Fuller (1989)
ENVIRONMENT
The environment's not something,
That is just way out there,
It's where I stand and breathe!
It's where you live and breathe!
And
What happens to our habitat,
Also begins right here,
The space in which we live!
But
Like the snail I leave a trail,
As I move about our world,
And
So by my very living,
I change your world as well!
Jonathan
Wilson-Fuller (1989)
(iii) Speaking of my hopes for a career:
I'm hoping for a career in research - I'm doing
a science degree, the main emphasis of my studies has been Mathematics
and Philosophy and I'd like to do some more Physics. I'm not sure
what I want to specialise in at this stage - IÕve got plenty of time yet
to make up my mind.
Return
to questions
I'm very fortunate to have lots of friends. Most people make friends with people who do similar work, study, or recreational activities as they do. This is not the way I have become friends with people. I am so fortunate because my friends come from all areas of our society, are in a great variety of occupations, have a great variety of backgrounds and beliefs and interests and are of different ages - therefore my friends are very enriching to my life. Each becomes very special to me in a particular way and we share in a particular way. My friends always have to make the effort to come to see me and they have to accept how I am on that particular day and if after all that they are still my friends, I know they are not just fair-weather friends! People and relationships with people are very important to me and my friendships are therefore extremely precious to me.
My friends share the good times and support and encourage me when life is not so rosy. I also share their good and bad times with them - just as everyone knows - "This is what friendship is about" and my friends and I are no different in that respect. Out of the necessity of accommodating my particular requirements, sometimes we go about things a little differently but no one is going to worry about that. The important thing in friendship is sharing and enjoying things together.
A recent example of doing things differently was
my 18th birthday party: It seems it was thoroughly enjoyed by everyone
including me. So many of my friends have declared it to be the best,
the most meaningful and unique party they have ever attended - totally
memorable in the nicest way. About 80 of my friends came to have
dinner in the rainforest, mid-winter in a rainforest in a suburban back
yard! The Starlight Foundation had organised a special surprise for
me - Out of a dimly light forest the sounds of a violin. The lights
flooded on and there behind the waterfall of the frog pond was Stan Kornell,
a violinist with the Sydney Symphony Orchestra, playing Pachelbel Kanon,
my favourite piece of music. It was a surprise so wonderful that
I cannot put it into words. Stan then played one of my favourite
hymns "How Great Thou Art" and we all sang along, it was magic, and that
was everyone's opinion. I talked with my friends, we joked and enjoyed
and shared the night - I had not seen so many people in the one place since
last I played my violin at the Sydney Conservatorium of Music - on that
occasion I was playing Pachelbel Kanon also.
I've written quite a few poems about friendships here are some.
FRIENDSHIP
F riendship is a two-way
R elationship between people
I nterested in making an
E ngagement in each others
life.
N ever
D emanding for
S elf, only wanting to
H elp
I n every
P art of the other's life.
Jonathan Wilson-Fuller (1987)
WHAT IS FRIENSHIP?
Friendship is a form of sharing,
Sharing time, things
and theories.
Friendship is a shared respect,
A shared respect of
each other.
Friendship is a form of caring,
A caring shared one
for the other.
The most important thing of friendship
Is,
The sharing of the love.
Jonathan Wilson-Fuller (1987)
TO ME
Your friendship is to me
Like rosin on my bow;
It brings a deeper richness
To the ebb and flow of life.
Jonathan
Wilson-Fuller (1989)
Return to questions
My parents are terrific they have supported me, understood me and given me working values of life and life skills but above all they encourage me to be my own person.
I share many interests with each of my parents but I have other interests which are exclusively mine. My parents have shown me the value of honest and non-judgemental communication and a way to share that acknowledges and respects difference, this is the basis of our family life. However, above all they have shown me their strength that is honed by struggle and is derived from a strong Christian faith.
P A R E N T S
P art of them is in
A ll of me, the
R ecoupment of their love.
E qually, however I'm
N ew in all respects, a
T ramper on life's road, and
S earching for myself.
Jonathan Wilson-Fuller (1991).
11. Why donÕt I like the label ŌBoy In BubbleÕ?
This label came about many years ago and was purely journalistic license. I realise that we human beings need labels and categories as an aid to understanding and thinking - this is the basis of our language, of our communication. However, embodied in this label of "Boy in Bubble" is an incorrect perception. A perception of isolation from my community and from the world of Nature. My access to both maybe limited in a physical sense but in a mental sense I experience no isolation at all. I live in a rainforest with an abundance of ever changing beauty to inspire and enrich me; I have many friends from many sections of society to extend and share experiences with and I live in this age of great technological accomplishment which brings the world to me through the window of the TV and video and allows me personal contact with many people in many places all over the world via the internet.
In short I can say I'm not isolated in a way that has to equate with a negative. All of us have to live life to the full in the way that best suits our particular needs. My self preservation needs dictate a type of environmental selectivity that could be viewed as negative if you want to focus on such a situation as a problem. But remember in every situation in life there are positives and negatives, my attitude to this is that we should always concentrate on the positives for the negatives will look after themselves!
Another perspective on this question of isolation is that I am not actually as isolated as a person who spends years on a yacht sailing the high seas, or someone who lives in a very remote location, especially where sub zero temperatures limit their ability to venture outside.
All of us live life slightly differently and this
gives us a different perspective in the way we view the world, we all have
a bias of some kind that results from our particular life experiences -
IsnÕt this what makes society rich? My particular perspective is
going to make me more conscious of the environment, more concerned about
chemicals and damage from pollution while someone who has lived through
war and famine, racial hatred, blindness or deafness, will have a different
perspective to mine. We can not possibly experience all things individually,
so it is only sensible to share our different perspectives in order to
enrich our knowledge and so inform our society's decision making.
Return to questions
12. How did my rainforest come about?
My rainforest came into existence for several reasons. The most important of these was the wonder and inspiration I felt when I looked at pictures of the great natural rainforests of the world. It was my wish to experience such beauty first hand. One day I asked my parents if it would be possible to plant a rainforest in our garden and after some warnings of how we could not achieve what I saw as the magnificent grandeur of Nature's rainforests and some acknowledging of the limitations of a suburban residential block sized rainforest, it was agreed that such a project would be attempted. We already had four large tree ferns which dated back to when I was one year old. At this early age my parents decided to introduce me to Nature by taking me to a local nursery and allowing me to select some trees and bulbs for the garden. The idea was, I'm told, to introduce me to the idea of the seasons with the bulbs and the idea of growth with the trees. Anyway, for some reason I was attracted immovably to the tree ferns and some daffodils. So they were duly planted in the back garden. Now many years later the four tree ferns would form the basis of my rainforest. I was given the job of researching the types of plants we would need and the project stayed as a future venture in the planning stage for some time.
When winters in our local area became increasingly smoky because of the popularity of using solid fuel heating, my health became seriously compromised. Smoke is extremely dangerous to me because of all the very reactive chemical compounds it contains and so my health became very poor in winter. My parents were now looking for ways to protect our home from the smoke which freely flowed from various neighbour's chimneys. They noted that the fronds of the tree ferns (that I had help plant when I was just one year old) actually acted like aerofoils lifting the smoke stream above them. This immediately brought the rainforest project from a future project to one of top priority. In the Christmas of 1990 it was started in earnest.
In seven years our suburban backyard has been transformed (there is only one section still to be planted) to something that is truly wonderful. My parents and friends have worked hard to create something so wonderful in fact that some of our neighbours bring their visitors for a walk in our forest. And strangely the suburban backyard now looks bigger than it did before.
This year the Starlight Foundation granted me a wish - they have made my forest even more beautiful. I now have a frog pond with a waterfall and HPM are going to install a programmable lighting system called Oscar so that I can light the forest at night in a variety of ways. It sounds magic to me. And a bonus in all of this is that our neighbours gain enjoyment from our forest as well. In fact my friend from down the back, Dominic, calls our rainforest ŌGodÕs gardenÕ and I think that is lovely. Return to questions