When I wrote this I was thinking that whatever was going to happen would happen despite any amount of worrying. It helped me to accept that I was who I am and had to make the best of it. I am able to make progress because I accept my basic condition.
Judgements
Talking to the child about the backbone of their life,
Their past, their present strife,
only causes grief and pain.
Skipping past the potholes in the path along the way,
Not for tomorrow, but today
is the way she made her gains.
Try it some time, to discover your mind.
Can you look inside, but not start and yet stop?
For it will just happen anyway.
Tell the world to listen and you'll get a blank stare.
Hi! I hope everyone is having a great 2014. I am looking forward to this year because I am starting to understand music and hope to put some lines to music. I'll let you know how I get on but for now here are some short lines I wrote in 2012. I was just playing with words, enjoying my new voice on the new Lightwriter. (My old Lightwriter had not worked for a long time.) The difference is massive - without a voice they are just words on paper.
The Struggle
Think of a time when, Through no reason or
rhyme, You find yourself
trapped in a space.
Now that you’re there Its awfully clear There’s a need to
escape with much haste.
After a while of
moping around And delicately
fixating on all matter of sound You realise it’s not
all that strange.
For this is reality. At times there’s a haze That can last just a
moment Or up to some days
But adding it up It’s worth the
struggle and rage.
Written 18 September 2012, using a Lightwriter on trial loan
The Cat
What would life be
like if I was a cat?
The indulgence of
roaming freely over undulating landscapes feeling the different
textures pressing up against my padded feet.
Scanning the land and
skies for any resemblance of food, alive or already pre prepared
on the roadside.
Taking the opportunity
to use my excuse of catliness
I let my inside rascal out.
Scratching the carpet
creates joyful muscular ripples
dancing down my limbs and back.
Showing my tumultuous
mood I leer at the neighbourhood moggies
tempting them to a
half play half serious fight.
Written 9 October 2012
Lines on the arrival of a new Lightwriter
The morning sun
sparkled on me the day my new voice
broke. The sky was clear, the
hopes were high the day my new voice
broke.
The days ahead will
hear my thoughts And future friends will know me by sound All because my voice
broke.
Who knows what other
voices may come years down my
life? Maybe a fat bald man’s Or a rough truck
driver?
Or maybe even my own?
But today is a happy
one Forever known as The day my new voice
broke.
Written 6 November 2012, having received my new Lightwriter
The following pieces are from when I was having hard times. These videos (here, here and here) help to explain my cycle of seizures and tics. The descriptions are still true, but times are now a bit better - I think because I am a bit more mature. There is still room for lots of improvement in my medical treatments.
Seizure
Darkness
All enveloping
Swallow me whole in your
arms
Drowning in your
depths
Crying on your
shoulder
Holding me back
Throwing me to the
ground you possess me
Defrag my mind
Wipe the slate clean
Clear the decks
Ready for
reprogramming
Fuzzy buffers reality
like a mink coat wrapped head
Delays
Echoes
Sparkles of light peer
through the slits
Whispering words of
care blow away the shadows
Tears moisturise the
skin warming the soul
Contemplation
Rolling on the base
curve
Ready to start again
Propelling to even
greater heights.
(Written 7 July 2012, a week after a tonic-clonic seizure. No video available.)
Cycles
Thinking in the twilight place
Memories of a golden face
Enjoy the reality now we are there
Calm me
Take away the fear
Fighting time is almost nigh
Think give up while spirits high
Relax
Unwind my conscious reign
Let the twitch dance start again
(Written 14 July 2012, after the discussion of cyclic symptoms referred to in introduction. See video here.)
The findings of my reflections ...
Demons haunt, crying
their song.
Today is different. My
mind is singing a different tune.
The beat in my chest
is pounding the need to change directions.
No more wallowing in
the marshes of pity.
The struggle continues
but I near closer to its edge.
Each step is a
physical barrier,
quick sand in nature.
Tears of self
absorption are dried up,
making conservation of
body fluid
awaiting to be
transformed
into the sweat of
struggle.
The struggle is to be
happy with me.
I am getting wary over
the ease of falling into the pits along the way
but prepared to work
harsh criticisms into the ground.
(Written 21
August 2012, during the tic phase of Ben's cycle. See video here.)
Floating
Fighting through the
muddled mess of thoughts, images and colours that fog up my brain.
Momentary
reprieve from repeating patterns creates the illusion of near completion
only to submerge again
into the depths of this foreign land.
This had better not be
the new me,
but if it is I had
better master the skill of floating with purpose.
As without purpose,
floating is bodyless and unoccupied
like a sense distorted
robot.
Nothing usually lasts
this long without the refresh button being pressed.
If I stumble around
long enough maybe it will go off like an alarm
causing my real me to
jolt back to life.
(Written 30 October 2012, nine days after a tonic-clonic
seizure. See video here.)
Last month I turned twenty-one and had a whole lot of people over to my house for a party. We had food and drink and an African drummer and dancer. It was great.
My twin sister's party was in town and people dressed up as from the roaring twenties. I went and talked to an old friend of Sarah's.
I want to tell people that my sister is so very much a part of me. This is what I wrote for our birthday. Dad read it out at Sarah's party. It was written last year because we were no longer teenagers. (You can see videos of me working on it here and, with more information about support, here.)
Birthday
The first day born is never remembered but always celebrated.
The years that shortly follow are the most precious as they are the ones that shape us.
The thing I will always cherish is having another person with me for every one of those formative steps.
Although the steps look different, they are still steps shared.
Nothing bonds you to someone like sharing steps, sharing experiences, and most importantly sharing acceptance of our differences.
As we get older it changes, but deep in the heart it stays the same.
Some days I wonder what the future may bring, but I always think it will work out fine for as long as I have people who "get" me in my life.
There hasn't been the opportunity to say it with my voice but kind of hope that my actions have expressed my feelings adequately.
I have always loved to run. This has got me into trouble in the past when I got lost. This song says it all.
Running through the city with a plan on my
mind.
It’s been far too long since I’ve seen my kind.
The business man is singing, the city is
strained
at the pounding of the rhythm from my feet
through the drains.
(Chorus)
Speed is my friend
She is my friend.
I’ll love you to the end my
darling friend.
Lightning speed is the thought in my mind
When my body moves it keeps the thinking
aligned.
Feeling equilibrium’s the thing that I need
and it all comes down to that yearning for
speed.
Running to the sun are you nearly behind
as the yelling in the background drives me
totally blind
to the people on the sidewalk and the traffic
on the street
but the speed I’m feeling in me helps me
keeping the beat.
Don’t let me don’t let me scream the world down
as the lack of outer speed makes my inner world
drown
in the buzzing and the tension that is filling
my veins
gotta break it and release before they call me
insane.
Got to feel the water and the feeling of pain
the only things I feel that tell me I’m here
again
Sort of bouncing back to action onto the side
of the street
I”ve got to get my body back from pounding my
feet.
(Chorus)
Speed is my friend
She is my friend.
I’ll love you to the end my darling friend.
Written 14 May 2012
The next video explains why I use the word "equilibrium".
(Video taken during a session with composer Harley Mead on 9 June.
See below for partial transcripts of three sessions with Harley.)
I met Harley Mead in 2012. He used to teach music at my sister's school. Working with Harley was amazing. He listened to my thoughts and then he just played them. The best thing was that he understood. It would be great to hear this song recorded by a band in a studio. Here are transcripts of the three sessions I had with Harley.
Partial transcript of first session with composer, Harley Mead, 26 May 2012. (Not videotaped.)
Before Harley arrived:
Being decidedly
annoyed with these crappy tics. Really
have to get it together.
(Cathie asked Ben what he would like to work on
with Harley.)
What I want is help to
get the sound of the tune on paper so that other people can really know what
the idea sounds like.
(Ben was having a lot of trouble with tics and
anxiety.)
Try to get him to see
past this. Good to try to get some new
ideas. This one will be great.
With Harley
To me the nice thing
about music is the thing it does to your body. It helps me to get the control I need.
(Discussing the lyrics “Running through the
city …”)
This one is one of my
favourites. It’s like the rest about my
body wracking my brain.
(Harley asked whether Ben wanted the song to be
fast or slow.)
Fast of course.
(Listens to Harley on piano.)
The beat underneath
needs timing that is fast constant and pulsing like a beating heart that is
filled to the top with fear.
(Listens to Harley on piano.)
Yes you have the up
and down beat perfect.
The chorus then needs
silence or a long soft sound in the distance.
(Listens to Harley on piano.)
Cool chorus the thing
I want is not so many beats but you are close.
(Listens to Harley on piano.)
The sound for the bass
part should remind people of my stomping feet.
(Listens to Harley on piano.)
Hold the chorus beat
for twice as long.
(Listens to Harley on piano.)
Yes
Beat feet is not about
sound but is about the sound of the instrument.
The chorus and melody
are great. When you do the bass part make it sing like my feet.
Keep it the same as
before just different instrument. (Listens to Harley on piano.)
That’s what I want
I want to get pumping
rock and roll.
Thanks this has been
fantastic.
Partial transcript of second session with Harley Mead, 9 June 2012.
Before video starts:
Great to see you all. Ready.
(Listens to Harley on piano.)
The instruments really
need to be less busy. There are too many
notes on a piano.
Video (Listens to Harley on piano.)
The thumping bottom
layer stays with a time a bit slower than the top section.
(Listens to Harley on piano.)
Yes but less hopping
around just up and down like a fear filled heart.
(Listens to Harley on piano. Harley asks if another word could be substituted for "equilibrium", which is hard to fit to the melody.)
That’s good and I
think that it would sound better when played on different instruments.
They’ve got equilibrium in the science book ... (Ben walks to piano - which is very overdue for tuning! - and closes the lid.)
(See "Equilibrium" video above.)
They’ve got
equilibrium in the science books that talk about balance. Running gives me the
feeling that my body is together and in nice balance. It is the time that I
feel most in control probably to the disbelief of the onlooker. The word can be
changed but the meaning needs to stay true.
Video
How about we just work
on melody for a bit. My ears and head
are letting me down today.
(Listens from next room to Harley sing. Having difficulty with his "ears and head". Harley asks him to come back and say what he thinks, and promises "ten more minutes and I'll leave you alone".)
I like what we do.
Don’t think of it as annoying me.
The melody is great
but it might need to be lower in the verses.
Video
My voice would be low
and it would be prickly to the ears. It’s that sound I want for the verse.
The chorus needs to have the feeling of
relief in the voice.
(Harley demonstrates some different vocal effects. Cathie asks Ben if he can name a singer with the kind of voice he is describing.)
Leonard Cohen has a prickly
and low sound sometimes. (Harley sings a verse with a very low voice.)
That’s really fine. My
thoughts are that it’s still not dirty enough but I am just being picky.
That’s called creative
licence. (Harley asks if he can get a friend with a gravelly voice to help him.)
The gravel friend
would be great to hear. (Harley sings with a gravelly voice. Group discussion about artists with gravelly voice - Tom Waits is mentioned.)
(See video, below.)
(Harley sings a verse with a gravelly voice, and the chorus with a clear voice. He talks about the verse sounding very intense, and the chorus reflecting relief.)
Great voice. Yes, intense is me.
Good to get friends
involved.
The important thing is
to keep the message true which I know you will do. (Harley records what they have worked on so far.)
Perfect.
That’s it. You rock.
Every time it shifts
that little bit closer to the image in my head.
Thanks.
Partial transcript of third session with Harley Mead, 1 December 2012.
The chorus goes slow. Just long notes. It contrasts the lyrics in speed.
(Harley plays.)
The piano should not
dance in the chorus.
Harley: so you don’t like this? (Plays.)
The melody stays up
high but the notes go down for “speed is my friend”. It does not stay on the same one.
(Harley plays.)
Getting there. “Speed” and “is” are shorter notes. Syncopate.
(Harley plays.)
Not jumpy but shorter
as in notes not as long.
(Harley plays.)
Half notes not full
notes “speed is my” notes go faster. “Friend”
is longer. It is how you had it last
time.
(Harley plays.)
It is very close. The last part of the chorus goes perfect.
(Harley asks for yes/no. Ben withdraws. Harley plays)
I like how the start
of chorus went the last time you were here.
It’s what has been playing in my head.
But I think I could go for the last chorus being low, like you just did.
(Harley plays.)
Good. Do higher.
(Harley plays.)
Perfect.
(See video, below.)
How do you like the idea of the last chorus
being low like exhausted and satisfied.
(Harley asks what the song is called, so he can
label the recording.)
Not sure. Its my unnamed baby.
(Harley plays.)
Thanks Harley. It’s great.
That’s the backbone. Now she
needs dressing.
(Drums?) yes
(Base guitar?) yes
(electric guitar?) yes
(flute?) No
(more vocals) Yes
(On the chorus only?)
Chorus may need some
soft vocals in background.
(Harley: Like some “ahhs”)
Yes.
(One voice?)
Two in harmony
(Harley makes quip about earning money from the
song. Asks about harmony - going down or
going up?)
Think harmony can go down.
If you play my song in
a concert that is cool. But I expect
money.
Not sure but what do
you think of last verse being spoken?
I wrote this when I was ready to give the world away. There seriously seemed to be no future. The fact is that I was depressed. These feelings often occur when I have had seizures. The writing process helps me to get back to normal because the feelings that overpower me need to be let out.
Young
Greatly young, naive to some as he stumbles down the hallway with a look in his eye. Beating up himself for the trouble he caused did nothing but make him cry.
How many times must it feel like pain? In his heart you can see the strain. Styling to the feeling and the rhythm not the beat, Could he ever sense that feeling that he wasn't unique.
[Chorus] Varied in his thinking from the day he was born. Screening out emotions so he wouldn't get torn. Why can't he fly above the masses and be free? If only all the others could see.
Hold me close and squeeze me so the feeling starts again. In my thoughts there is only one last thing. Run against the pressure of the spasms in my head. Trying just to focus on the messages you've said.
See you around I'm feeling like I'm on the edge Of going down
[Chorus] Varied in his thinking from the day he was born. Screening out emotions so he wouldn't get torn. Why can't he fly above the masses and be free? If only all the others could see.
Written 7 May, 2012
In late May I saw a young girl in the park blowing bubbles. One blew into our window. This led to the following poem and its final lines:
Minute's Silence
Can we have a minute's silence for the silent in our world, trying hard not to be hurled toward the scrap heap in the rain. Will you take that minute's silence and try to understand why there's difference in our land that brings about pain. Handle with care but no need to stare or show the pity they don't need. Just be fearless, set them free. Ponder the existence in a bubble you can see. Nothing appears but things refine. Rainbows in the sunlight, they do shine.
In early 2012 Jane stopped work to go back to university and Bec had a baby. Then to make things even harder I had to learn to work with a new facilitator, Matthew Wilson.
Matt was very different at first, but our collaboration soon bloomed.
You need to understand that there has to be trust between the two people working together. You need to understand that I am really in control - that the words are mine - but with some facilitators it is easy to get the words out. Matt is one of those. I have found Matt to be the best facilitator so far.
The good thing about Matt is that he is a young male. This was the first time I had worked with a man near to my age. You need to have someone who you can talk to who will understand.
By the end of our first session I was able to key:
You can help please by making me do this work with you. Writing work puts my body under the worst stress but strangely soothes my mind.
Two weeks later I wrote my first song with Matt. The words were about how I was feeling at the time. This is what I wrote:
The Man
I’ve got the thoughts of the day floating through my mind,
building me up to be the man I want to be.
I’ve got the rays of the sun poking through the clouds,
teasing me to come outside and be the man I want to be.
The day has come, I want to run and feel and laugh that I am free.
Free to run and be the one that we all want to see.
How can some deny the plan, based on rumours that the man
Would not achieve these things.
Well here I am standing my stand.
See now, I’m free.
(Written 26 March 2012)
Then, very much to my surprise, the next song - "Flagship" - was put to music by Matt's brother Jono and the band "Banana Nightmare". The song was played on local radio and at a conference. These are my words for "Flagship" and below is Banana Nightmare's song of it with a slideshow put together by Jono.
Flagship
Hunger never takes its love away, never for a single day.
Haunting caverns of my mind, scaring me just what it finds.
So the flagship rolls on by, watching the days as children cry.
So the flagship rolls on in, watching the sinners sin.
Longing evenings alone on the rock, wishing that your golden boy talks.
The feature list is about to be played, for all the world to finally be dazed.
(Flagship chorus)
I want to gasp the cold air in my lungs, feeling the sense of songs to be sung.
Touch on my skin ain’t supposed to cause pain, but your touch does it again and again.
(Flagship chorus)
I wonder how the chore began, of making lights appear in sand.
Lighting the way for the damned trip, that life coined. The flagship.
(Written 23 April 2012)
Jono and Banana Nightmare also put together a demo tape of my next song, "Senses". They did not use all my words but I hope you still like it. These are the words I wrote and the shortened tape.
Senses
Green yellow red and blue,
the colours sneak past, the colours sneak through.
Trickling through the fingers, trickling through my hand,
trickling everywhere like liquid sand.
Pushing on my eyes I’m in control of my hands
to initiate the haze of the multicoloured bands.
Pushing on the edge of the feeling within,
try to stop the surge from making me spin.
(Chorus)
Watch out he said I’m losin’ my head. All the sense has gone - about to end up chrome.
Better move yourself out of the way ‘cos he’s losin’ it todayayay. I can feel my skin touching onto your hand
like a thousand jolts of power man you don’t understand.
I can feel the wind coming from a mile away
as I crash into it feeling like a manta ray.
The sky is a land based on the reflection of light -
a thousand different molecules playing round with my sight.
(Chorus)
Rumble in my body causing moving inner pain.
It’s enough to make the smartest on the block feel insane.
Got to move my body, got to move my feet,
Got to feel the rocking to the stomp of the beat
(Chorus) Really want the simple sounds to sing to my heart
But the sound in my head's just tearing me apart.
Dampen down the sound on its way through my ears
but it amplifies and it screeches, igniting my fears. (Chorus)
(Written 30 April 2013)
Having someone put my words to music meant a lot to me and I thank Jono and Steven. Check out their new band - "Fishing for Neutrinos".
