re: your queries

re: your queries (further to A Week In My Life for a German teenage mag)

> Your inner life would be of great interest to our readers. Do you think

> would be possible to describe your rage and depression - causes, how it

> manifests itself, how you deal/cope with it, etc?

How many words? Is this for you to put into your own words?

Rage is an emotion with energy attached to it. I can't scream and shout, I

can't

stamp and so on. I do put it into words (or music) but that's not very

satisfactory.

It's not an outlet that defuses it but a fuel.

I act out fantasies in my head in which dastardly violent deeds are done to

particular individuals in gory detail. My normal weapon is an axe and I

bring it down on the head of the offender with such force that it cleaves

their skull in twain most memorably. There is a satisfying amount of blood

and screaming and I exit laughing. Ain't I just horrible? I also have

vivid and scary nightmares which revolve around dependence and frustration

and terror.

Depression is a state of loss, when one has lost oneself so

entirely, one can't respond. This means appetite dwindles, days float by

in misery, invisible tears drown one in self-pity, ideas go round in

whirlpools without profitable progress and one feels stuck. Sleep is all

one aspires to. To sleep is to forget the present. My depressions are

situational not endogenous. They are related to extreme frustration. The

other thing that happens when I am frustrated is an increase in my

epileptic fits. The main thing frustrating me is the unjust way the LEA

will not resource me, despite legal entitlement. Continuous thwarting of

what I do, continuous disregard for my needs, continuous disregard of

advice from qualified people. Relentless horrible bureaucracy.

Inescapable for a lifetime because of my disability.

I have to learn to

cope. I have a psychologist who is helping me decide what can and can't be

changed and who helps me to do battle with the LEA by being my advocate at

meetings and so on. And he tries to get me to think of strategies for

coping with some of the things I can't control. As with all nice

psychologists the problem is that one wants him to be an ongoing friend,

always there. So I have to learn to wean myself off dependence on him and

leave him behind, face the world alone again. I think I feel as if I'll

wobble again, and again need support just to restore my faith in these

damned professionals (because of course he is one of the enemy, he is a

paid

professional).

Sometimes I just have enough energy to barge ahead in a

new direction - eg my webzine when my music fell apart, my travels when I

was notified of my prize. Achieving stuff - self-set targets - rebuilds

mood rapidly. One can cast aside a year of depression in a day if an

avenue opens up for seizing.

Maybe the analogy is one of bobbing in a small boat

in an ocean waiting for rescue. Might be another boat. Might be land.

Might be helicopter. Got to be something. I am not self-sufficient. I am

dependent. I can occupy my time using the meagre resources available to me

to build a means of trapping fresh water and catching fish so that my

immediate needs are accounted for, I can devise sails and oars to try to

help myself, sometimes the might of the ocean the scale of the ocean is

daunting and wears me down to a tearful blubbering jibber, sometimes it is

a beautiful place to be and I feel close to God and inspired by the calm, I

occupy long hours in my imagination quite easily because there is little

else to do, I send out thoughts in bottles bobbing away from me to who

knows where.......rescuers come with promises of company, sustenance, a

comfortable and less solitary existence and they depart leaving me with

only promises...and hope and expectation which cannot be sustained as the

days turn to years of waiting....

>The way music and words

> come to you would also be of great interest.

pops into my mind, probably much like anyone else therefore. I have very

little idea what goes on in the heads of other people. I deduce some

people don't think much and I deduce most people lap up rather than pour

out stuff but I've no particular notion that I'm any different from any

other proactive sort of person. Something needs to be done, one does it.

Simple.

>Another thing: with this rich

> inner life and frequent rage and depression you say you feel, how do you

> cope with the lack of privacy necessary to express these feelings? - I

mean

> that all communication must take place through third parties. If this

last

> questions is hard for you, don't bother answering it.

Well since I am so very dependent upon my mother and I love her very much,

it's not usually too much of a problem. She respects that I need to be

in charge and I respect that she will take charge if the need really and

truly arises - eg she won't let me get hurt. But privacy is an issue in

training new people. I cannot imagine sharing every thought with someone I

scarcely know or who I don't like but who has been selected for the job by

the bureaucratic bastards. The other problem is that they can easily just

get up and leave me. I can work hard at letting them into my life and they

get a "better" job somewhere else....it's happened. I don't of course get

privacy in other respects either. There are carers who come in and get me

dressed and washed and so on and there's usually someone in the house all

day who sees what I'm doing and although it's their job to help me and mum

I don't like it. I like them but I get fed up with their presence. They

don't share my interests. They don't learn my means of communication.

Yet one has to live in proximity to them. Although they are essentially

servants, the climate in the UK is such that they don't like to think of

themselves as such and they don't know the "rules". It all requires far

too much energy keeping all these relationships going along nicely.

One also has to repeat everything so each person is up-to-date on changes (children

change!) - eg how to adjust my wheelchair, how to help me cope with

constipation, which brand of hair conditioner suits my hair. The time it

all takes is endless and that's without allowing for the chatter between

themselves when I get caught in the middle. If I were able-bodied like my

brother there wouldn't be all these interminable conversations. One would

just do things. Go to cupboard, get bread, make sandwich, take it back

to computer, work and eat simultaneously. With me lunch takes an hour

however much I want to hurry and however much I don't want to lose my

thread in what I'm doing. It can easily take 2 if they decide I need to

be changed etc. Rant, rant. As you suspected, it's a double

edged thing this help.

> What do you do in hydrotherapy, and why is this helpful for you?

I leap into nice warm water with 2 helpers to buoy me up and enable me to

move as freely as I can muster. It allows me to inhabit my whole body and

to be freed of the solidity of immobility. Lethargy and numbness creep on

without exercise, just as with you if you sit too long in one position. In

the water I am easier to hold and move than on land because of my near

weightlessness and the medium allows three dimensional movement so my sense

of self is somehow restored. I am not a self within a shell but a much

more interesting entity experiencing a lot of glowing emotion as well as

physical freedom. It's good for my heart and preserves mobility in my

joints. I am stretched into various positions that I cannot spontaneously

achieve and that is very very pleasant. I am moved so all my trunk muscles

waft and stretch delightfully. I have a great deal of fun. I play ball.

I dive into a jet of boiling bubbles. I enjoy the quiet. I relax. I wish

I had a pool at home and could go in every day. It is a most enjoyable way

of keeping fit and the most practicable one for me. I won't live to be 96

if I don't look after my nice wee fat body.

> What was the award - did you receive money or a plaque or a commemorative

> piece of paper or what?

All award winners had their basic airfare to Australia paid for plus 4

nights b&b at a pretty plush hotel. In my case that was stretched to me

plus 2 carers. I took 1st prize in the individual category which meant a

cheque for £1500 and a certificate. Not bad is it? Worth going in for. I

don't like competitions, and have never entered one before, but I was

attracted to the prize and it wasn't exactly complicated to enter.

> Do you have any idea what you'd like to do in the future - what you'd

> to accomplish, how you imagine things might be for you?

I want to be a self-determining adult living a full and useful life within

the community. It is almost bound to involve writing and the arts but I

hope to be able to campaign too for action on things I find intolerable -

eg I detest the fact that so many worthy nice and hard-working people

in poor countries such as Tanzania and Bangladesh have no access to safe

clean water, even though they have electricity in their homes and access

to free health services for the treatment of cholera, dysentry etc. This

is my new agenda. My hero is Albert Schweitzer who combined a career as a

musician with being a doctor in the African depths. I can't be a doctor, I

have

to find some other way of helping. I had a meeting with Kofi Annan to

discuss it.

> I see the authorities like to annoy you and your parents about schooling.

> Do you receive any sort of instruction? What is it, and what is its goal?

I see an art tutor 3 hours a week most weeks in termtime. I'm not sure what

the goal is. It ought to be self-expression but I haven't sussed how to

find resources for what I devise in my head, and painting etc is so

heart-rendingly painful because I hate my stupid hands so very much.

That's all. That's been going on for a little over a year. Before that I

had music tuition for 2 years 1993-5 and before that I was in school, Nov

91 for 15 months. Before that I went to a nursery. It's not a lot of

education is it?

> Where did you travel on your way to and from the award ceremony, what did

> you see, how did you manage?

I think I can't possibly answer all that here except to say that everything

went smoothly organisation-wise, I had splendid accommodation with host

families found through the international schools who also helped with

transport and developing my itinerary along the lines I wished for. I

did a tremendous amount and came home

with a new agenda as mentioned above. O boy you can't believe what a whale

of a time I had.

I was so shocked by the dirt and the poverty in Tanzania, it scared me

quite quite silly but Mum drove me into a herd of elephants and

we met all sorts of very nice individuals (eg abused street kids) and I

went to the International school to address some classes on disability etc

etc....

In Bangladesh I visited the cholera hospital and some child

labourers

in the slums, had a wonderful evening of classical Bengali music, met aid

workers and so on, visited a centre for the rehabilitation of the

unfortunate folk who break their necks carrying heavy loads on their heads,

went shopping in the ordinary stalls and drew an immense crowd etc etc....

Oz I spent some days in the children's hospital in isolation on a drip when

I should have been at the awards ceremony being applauded and that upset me

greatly. I stayed with my wacky journalist e-pal Kath and her wild lesbian

partner among the mozzies, leeches, water dragons, monstrous snakes and

enormous spiders of that part of NSW, and also with

Dad's godmother in somewhere that resembled a Neighbour's set near Sydney.

I met a genuine Ozzie

surfer (well I just went up and spoke to a man holding a surf board who'd

just surfed in on an azure blue wave the height of a large house)etc etc...

In New York I visited

the NYPD, a rehearsal at the Met and a truck driver on Staten Island

besides attending a church

service in Harlem and catching a bus (yes yes they are really and truly

accessible) from there to the Guggenheim. Best of all I had a

personal meeting with Kofi Annan. I had written asking if I could meet

him, he replied that he was delighted to meet with me and has since sent me

a photo taken by the

official photographer with a very encouraging inscription

wishing me every success because I have a lot to offer. Then I came home.

> The article is not slated to appear in the magazine until June or July

> (I've forgotten which). It is a bit anachronistic now to have your week

> ending with notification of the award. Do you think you could give me a

> hint about what might be a good way to end "a week in your life"? It will

> have to look a bit more like a generic week, but of course something

> pivitol at the end would be interesting.

You'll have to sort that out for yourself. I don't believe there's any

such thing as a generic week in anyone's life. I think people like reading

details. Articles fast get boring if they are veiled in the average

typical characteristic or hopelessly unparticular.

> I hope I haven't thrown you with too many questions.

Seems like you're writing the whole article over again. Hope that's it

now.

Hero.