"And if I die before I wake I pray the lord my soul to take"...

"Because I could not stop for Death, He kindly stopped for me.The Carriage held but just ourselves And Immortality"~Emily Dickinson

It was never my intention to keep a blog of activities or in this case non-activities, my feelings or thoughts, for I am not one to share freely. A survival mechanism instilled in childhood.

Even when faced with the most perilous of predicaments, I give the well rehearsed response, "I am fine, thank you".
I realise when people ask "how are you today?" they really mean, "tell me you are good so I can go about my way and not concern myself with your ailing health". God help me if I responded "I feel like shit and just want lay down and die".

I decided to keep this blog as some kind of a written legacy for my family, and in hope that others will gain insight into the heart and mind of one diagnosed as terminally ill. Yes I hear you, I have heard it before, "You are not terminal, you just need a double lung transplant, you will be fine". And you would be right! Yet to date I do not have my new and improved set of lungs, I wait and hope and pray.

My life is in the hands of a complete stranger, who in their time of ultimate grief can see through the despair and sleflessly choose to give me extended life. Till this wonderful opportunity presents there is still a real chance, I will soon die. I know others who have been in this place, this Limbo, their strength and determination is a never ending source of inspiration, yet it comes down to my strength, my will to live, and If I decided enough is enough, then so mote it be.

"For what is it to die but to stand naked in the wind and to melt into the sun?" ~Kahlil Gibran, from The Prophet.

So at the risk of being labelled as "negative", I will be writing my real feelings, laying my naked soul on a slab for the world to oggle.

Some of my writings will be boring, some will be of pain, others of happiness. Much of it will be re visiting times and places that have helped shaped me to be the person I am today. Times and places I have not spoken of to another living soul. I need to do this, so I can move on.


It is the innermost me.

Monday, March 23, 2009

ALREADY THERE...

I find the weaker I become physically, the more I become a thought extrovert and though I feast on literature, documentary’s and fluff alike, I am unable to subdue this blistering mind. Perhaps this is good, a way of making up for deficiencies. Emotions intensified. Rather than fight, I am allowing myself to feel pain. It helps, but how can something so bad, be so good? Am I giving up? Perhaps I am becoming an addict.

For there is nothing mediocre no shades of grey, it is all or nothing, in or out, feast or famine.

And as I lay on this slab, watching my own blood medieval style twist and turn before my eyes, radiated and re-injected into my system, I do all I can to stop myself from spiraling out of control. For my body no longer belongs to me, bought by men in white and the only form of control is of my thoughts. Feelings I have learned are no hope, though I am in control of actions. The soul is mine. Still, as I lay thought control absconds. Is it true life is short? Does this then gives us right to throw caution to the wind? What is right and what is wrong? Who are the worthy and who are the lost? What is this chasm? It’s not a place for God, for I was once saved and backslid and I will never be convinced there is a hell, apart from earth. And though I believe I know just what it is I crave, it eludes me, for I am incarcerated.

Call the RSPCA! The vultures circle.

Drowning in a pathetic cocktail, a sweat of my own making and as the rip takes me under, I fight for freedom, scrambling to get atop and as I hold my hand high I silently call for help! But the savior’s knocked off for the day. And now its night and I’m cold, scared and can’t find my way home. The light at the end of the tunnel turned out to be a torch. And I contemplate, and fear all that is unjust within this god forsaken world. Is it so wrong to trust? Should this trust even when misplaced be so cruelly neglected?

I want to scream, to lash out with my fists till they bleed and fester. For them to know the pain on an intimate level, as I. Ultimately I want them to be still, to gain understanding of what it is to just, be. But they don’t listen. I have given all I have and more, and as I stand before slate grey, gasping for freedom, they remain silent, looking to extract the last breath. I will never understand the language they speak. And no I am not insane, nor depressed.

I am just fighting for survival.

Changes, as Bowie sung, I like change, I embrace change, as a new born craves mother’s milk I crave change, but today there is no ability, perhaps tomorrow and if not, soon. Then upon change I will be in control my will, and power. Till this day comes, however it comes, I sit, I wait, I breath, I think, courage abound and feel the pain.

"Changes" David Bowie
not used by permission. Sorry Bowie, but you wouldn't return my call.

Still don’t know what I was waiting for
And my time was running wild
A million dead-end streets
Every time I thought I'd got it made
It seems the taste was not so sweet
So I turned myself to face me
But I've never caught a glimpse
how the others must see the faker
I'm much too fast to take that test

Ch-ch-ch-ch-changes
Ch-ch-changes
Don't wanna be a richer man
Ch-ch-ch-ch-changes
Ch-ch-changes
just gonna have to be a different Man
Time may change me
But I can't trace time

I watch the ripples change their size
But never leave the stream
Of warm impermanence
So the days flow through my eyes
But the days still seem the same
And these children that you spit on
As they try to change their worlds
Are immune to your consultations
They're quite aware of what they're going through

Ch-ch-ch-ch-changes
Ch-ch-changes
Don't tell them to grow up and out of it
Ch-ch-changes
Where's your shame
You've left us up to our necks in it
Time may change me
But you can't trace time

Strange fascination, fascinating me

Changes are taking, the pace I'm going through

Ch-ch-ch-ch-changes
Ch-ch-changes
Look out you rock 'n' rollers
Ch-ch-ch-ch-changes
Ch-ch-changes
Pretty soon I’m gonna get a little older

Time may change me

But I can't trace time

Sunday, March 15, 2009

NOT BY BLOOD ALONE...

What does Family mean to you?

The Websters on-line dictionary describes the meaning of Family as follows;

Family
Noun

1. A social unit living together; "he moved his family to Virginia"; "It was a good Christian household"; "I waited until the whole house was asleep"; "the teacher asked how many people made up his home".

2. Primary social group; parents and children; "he wanted to have a good job before starting a family".

3. People descended from a common ancestor; "his family had lived in Massachusetts since the Mayflower".

4. A collection of things sharing a common attribute; "there are two classes of detergents".

5. An association of people who share common beliefs or activities; "the message was addressed not just to employees but to every member of the company family"; "the church welcomed new members into its fellowship".

6. (biology) a taxonomic group containing one or more genera; "sharks belong to the fish family".

7. A person having kinship with another or others; "he's kin"; "he's family".


But this is only the word definition of Family; it lacks to capture the emotional meaning.

To me, a family is not born by blood alone.

As we know, blood is an important substance required in order to maintain physical life. In times of health crisis and for monetary compensation blood type of kin is available, yet there is no emotional value whatsoever in this substance, it is just a physical requirement to, exist. In order to maintain a healthy psychological disposition, we all need the unconditional emotional support and love of our Family.

I have met family’s who place much importance on blood ties, sticking together with war cries of “we are blood”, yet many of these “family types” lack the uniqueness of what I believe constitutes a true Family. Come special celebrations they paint on their loving “face”, cleverly disguising themselves oh yes! They help each other, on a superficial level, but do they take the time to invest emotionally in each other? Where is the unconditional, nonjudgmental element we so desperately yearn?

Being adopted, I went through a period of needing to know who my biological family was. I figured by finding my blood relatives, I would find myself. My search was successful and though I could relate on a purely physical, characteristic level, I could not relate emotionally or spiritually. I realised the emotional investment required for the foundations of a strong family unit, had not been built.

How many of us without doubt can say we truly love our family, unconditionally?

Of this question I throw up my hand in accountability and say, “I am guilty of not loving unconditionally!”

Seemingly Love, in all its meaning is not autonomous, rather a learned emotion. As children, we are taught by our parents and peers how to express love, verbally and through actions. If this is not unconditional in nature, therefore in way default, love becomes conditional. An example of conditional love being, it’s through the displaying of certain behavior or achievements we become, lovable. Basically, we learn love is to be earned in way’s good or bad. As parents or peers we run a real risk of turning our children into withdrawn, emotionally crippled Adults whom are incapable of knowing how to give or receive love.

Why is it easier to express love for our Dog, Cats and other pets, and in some cases, inanimate objects? Perhaps because there is no need for an emotional investment, this love is easy. I know people who strive in business, investing their time to making money for their Family, it’s their way of showing their love yet sadly, they fail to see the value in an emotional investment.

It’s in times of our great emotional trials we remember, the important of Family.

At the risk of sounding cliché, there’s nothing like a crisis to remind us. Recently I had a NDE (near death experience). I was told I would not survive the night. Not having much time to contemplate my impending Death, my only thought was of my Family. As medical staff put me under, placing me on life support, my Family on route from Queensland did not make the hospital in time, so I quickly scribbled a goodbye note on a piece of hand wipe towel. It simply said, “Sorry I could not stay awake to say goodbye”. As I went under, mentally I regressed to childhood. Upon awakening from the coma, I peered around the room to see photos of family surrounding me, hearing tales of the bedside vigil kept and for the first time in my life, I realised just how much I was loved. How sad it would have been if I had died without this knowledge.

From the time my father passed I feared my Family, at the first sign of discord I would don my nikes and as Kathy freeman going for gold I bolted, running from monsters that lurked in the dark. Not knowing any different this behavior became a learned response which in turn became a fear, a fear to be loved. But when I awoke from that coma out of breath no longer with the ability to run, I was forced to swap my nikes for mocassins and a miracle happened, a light switched on and I realized the monsters from which I ran, were in fact, just people.

We can learn to love unconditionally; we can teach ourselves by practicing the Art. If our family behaves in a manner we don’t agree with don’t lecture, simply encourage a change, remembering it’s their path. And if they fall pick them up, dust them off and help them back on their feet. Trust in our Family regardless of the decisions made, and if trust is broken then forgive. We are all they have.

The key, I believe is to remember our Family members are people just like us, people with fears who simply require unconditional love. And though there may be times it seems the barriers are far too entrenched, keep gently chipping away, teaching though your actions. With patience, guidance and a bucket load of unconditional love, the walls will eventually crumble and your loved one will metamorphosis into something truly, wonderful. It's worth the investment.

Monday, March 9, 2009

INVISIBLE CHILDREN- Agent orange legacy

My Birth Father (Daddy Wayne) served in the Vietnam conflict. As others, he came back a different man. Nothing like serving in a war to change ones disposition on life. The Vietnam war in particular was gruesome, I am not just talking of the mental/physical experiences of war itself, but the way in which our troops were treated upon their return home. It is nothing short of criminal.

Daddy Wayne died on the 15th January, 1994 from Cardiomyopathy. He suffered this terrible disease from the time he was 35. Daddy Wayne believed it was due to his war service, and the subsequent spaying of Agent Orange he was poisoned with, that lead to his ultimate demise.

For many years Daddy Wayne hounded our government for a health Study. He did not see this come to pass in his life time.Upon his death I took up the cause and since 1994 I have wrote numerous letters to our Australian government seeking a health study, not just for our Vietnam Veterans and their Children, but for all service men past present and future.

Below is one of numerous letters I wrote, distributed to Ministers of Defense, Parliamentarians alike and finally, to Mr Johnny Howard himself.

Remembering our Vietnam Veterans... and their family's.
40th Anniversary of the battle of Long Tan

My Dad fought in the Vietnam conflict. Fortunately for us, he made it home; unfortunately for Dad, he did not come back to the same world of which he left. He came home to a hostile world. It was a world in which he was ostracised, labeled a child killer. My Dad, a quiet, unassuming and all round good bloke, never spoke in his defense so this, being the 40th Anniversary of the battle of Long Tan, I wish to put the record straight.

The mines my Dad laid around the villages were to protect the innocent Children from the enemy. As it turned out for one young girl, the enemy was not my Dad, nor was it VC. But her very own Father. A Father, who sent his own Daughter to my Dads camp specifically with the intention of offering herself sexually in return for rations of food or cutlery. The Father whom when she returned home empty handed, beat her. Bloodied and screaming the Child ran for her life. Unfortunately, she ran straight into the mine fields laid that same day by Dad. Terrified and screaming for her to stop, my dad watched helplessly as she hit a mine and was blown into a million pieces. She was only 5. One of my Dads deepest regrets was that he never gave that little girl anything. One simple fork would have saved her life.

Along with the mental demons there was the daily physical pain. The suffering from numerous hospital visits because as he allowed himself to be a guinea pig for the purpose of research. The numerous letters he wrote to our government begging for assistance that went unheard. A constant daily reminder of the horror endured.Not to mention the foot rot brought about from walking extreme distances without taking off his boots. Neither a pharmaceutical grade cream nor granny’s home remedy could ever get rid of that damn rot. In fear everyone showered in thongs .

The worst of it all was the disease, disease that I and many thousands of others believe to have been brought upon from a pesticide, dumped by the barrel loads from helicopters directly onto our own troops.The battle did not stop in Vietnam, but continued on within Dad every day shortening his life. Eventually tired of the fight, he succumbed to disease and passed. But it doesn’t end there. The battle continues on.

Now I suffer a similar fate to Dad. I am terminal, end stage lung disease and fighting for my life. As my father before me, I will fight to the end and accept my fate in distaste. But will it stop with Dad and I? What will become of the Grand Children? Will they too succumb to disease and die before their time? will they be tortured, destined to suffer, robbing them of life? How does one look a Child in the eye and tell them they are going to die, and not be able to explain why? When will this end?This cause will not be forgotten, for our Children, Grand Children and Great Grand Children will keep fighting. We may die, but our voice will remain!

So, on this remembrance day, I will be at the Shrine. And even if I stand alone, I will celebrate the life of an extraordinary man and many more Vietnam Veterans who have suffered and are still suffering today.Yet not only will I stand in the memory of the Veterans, I will also be a voice for the invisible Children. The Children, who not only carry on their Fathers mental demons of War, but also as I and many other believe, the defective DNA that is killing them. Defective DNA caused by a simple pesticide commonly referred to as “Agent Orange”.


After over 13 years of hounding our government with letters of similar ilk, I never once received a reply. Finally I got a reply to the above letter, personally written by Mr Howard himself. It was nice to read him acknowledge the suffering. Our Government has since announced a “world first health study into the effects of Veterans and their Children from War Time Service” allocating 13mil. To date this study is still underway and will take many years of research, 13mil just scrapes the surface. Finally our Government recognises the need for a health study of this kind. What is to come of it? who knows, let’s just hope it is not swept under the carpet. Well done to Childrens of Vietnam Veterans Health Studies (COVVHS), keep up the good work guy’s.


One of only 2 photos I have of Daddy Wayne.
Here he is in his official capacity as Commodore of the Sommerton Yacht Club. Shortly after this pic was taken, Daddy Wayne took to sea to compete in a yacht race, suffered a massive heart attack, fell overboard, and drowned. Fittingly, in memorium, his ashes were released off the shores of Brighton Beach, with a gun salute.
R.I.P Daddy Wayne.


TIME DOES NOT HEAL ALL WOUNDS.

This is a piece wrote some time back. I found it quite healing as never before had I re visited the day My Dad died. I have placed it here, perhaps one day my family will read and gain some insight into what became one of the darkest periods of my life.


I awoke with such a startle; eyes as wide as saucers sitting bolt up right in bed. The sun had not even begun to peek through the curtains. Dad returns home from night shift around 5 am and Steve, my beloved brother would not be long on his way for day shift. If I could wake long enough and get out of bed, I joined Dad in an early morning cup of tea. Just Dad and I it was so quiet and peaceful. I loved this time of day. Dad would take me back to bed and happily I'd snuggle down into the foetal position, falling into a deep slumber.

Though I was his Adopted Daughter, I knew no different. I was Daddy's girl.

During the summer months we would spend our time in the back yard. A yard full of the most exotic fruit trees ever seen. There was an abundance of apples, oranges, peaches and nectarines, just to mention a few. Undercover of the old fruit trees I would sit happy as a pig in poo and play for hours. When Dad was not closely watching over me, Rex, our beloved pet Labrador was. Dad loved to work in the shed, tinkering around with woodwork or fiberglass. He would sit me on the bench and tell me stories. I would study every line of his weathered face, the tattoo's on his strong arms telling tales in pictures of time spent in the Army. At night it was Dad who carried me to bed, tucked me in gave me a good night Kiss. “He will be taking you to bed till you’re 21” teased my Mother. I was 11 and his little princess.

There was something unusual about this morning. Excepting for the quiet murmurs of strained voices, there was nothing but total darkness. I sprung out of bed rubbing my eyes, forcefully trying to awaken myself. Mum was in one of her panics and mumbling something about finding her purse. I followed to the kitchen. "We got a call from Dads work we are going into the hospital.
"Is he ok?"
“yes he is fine, just an accident".

The drive to Flinders Medical centre was deathly quiet.

"So what can you tell me about your husband" the Doctor asked Mum.”What do you mean what can I tell you about him, how is he?"

"He's Dead".


After the shock passed we identified the body, the body? He’s my Dad not a body. We were escorted into a tiny curtained off room, so cold, so sterile. A peculiar stench burned the lining of my nostrils, a stench that till this day I vividly recall. There was Dad, lying on a gurney. His shirt had been cut open where the Ambo’s had frantically tried to get his heart started again, a white sheet was pulled up to the top of his belly button, his right arm was exposed out to the side with his hand still clutching tightly onto the cold steel railing. He looked as though he was having a nap.

"Least I will never have to cut his hair again" said Mum gently caressing his forehead. By the time we got home the sun had well and truly risen. But there were no birds singing today, no laughter of kookaburras, just the bleakness of the dark cold winter.

Daddy was cremated. Though I don’t remember much of the day, I do recall people spilling out of the chapel onto the pavement outside. I kept all the little cards that were attached to bunches of flowers. I kept them in a tired old shoe box under my bed. Every night I pulled out my little box of cards and read all the wonderful words wrote about Dad. I wonder what happened to my shoe box.

Kookaburra's Flight

The Kookaburra’s laughter enhanced
the searing morning light,
as rays of amber beams appear
through window bright, I yawn.

I stretch I rub my eyes and
descend from child slumber I arise but
find today’s sun obscured by
gloomy skies.

Words ring loud, I covet my ears,
bewildered and confused
gripped by an arresting fear.
"Daddy’s never coming home again, my dear"

the kookaburra takes to flight.

For in this winter’s dreary haze I hibernate
from tempest hail,
and long for summers warm relief, but fear,
summers passed by this year.

Kookaburra to never laugh, again.



My Dad, Jack and I

Sunday, March 8, 2009

I STILL MOURN THE DEATH OF MY HAIR

Yes I know, it’s 4:00am in the morning and normal people are fast asleep. I would give my right arm to sleep, just one night of pure unadulterated, slumber.

But for now sleep will remain, a waking dream.

High on massive amounts of stimulants required to keep my organs functioning, I find myself in a constant neurotic, ADD state, much to my families dismay which would be perfectly acceptable if I could busy about washing, ironing and the likes of housework. My body is just not up to it, but my brain still functions, kind of.

I am not allowed any substance to help me sleep, for these slow down our respiratory system and in my condition it could be all that is required to send me to eternal rest. So, being the Obsessive Compulsive I am, I will prepare myself for my impending transplant op.

Checklist for ICU post transplant.


Brush...

In hope someone will kindly brush my hair. After my previous ICU admission my cascade of flowing mane became so entangled, I had to chop it off at the neck. Though I was happy to be alive, I mourned the death of my hair. It's my thing.

Fluffy socks…

Though I will not know if my feet are cold, I still want my fluffy socks on. My feet and ankles are always freezing.


MP3 Player…

I have recently downloaded my favorite “inspirational” songs eg the theme from Rocky, I figure whilst in a induced coma I will be inspired to live. Hopefully I will not come out a homicidal maniac.


Photos of Family and Me...

Obviously not for me I can't see them, but I like the idea of Doctors and Nurses whom previously have never met, will see me as a real, living person and not some rotting peice of flesh liying on the steely cold gurney. Hmmm, thinking I have seen far too much for my own good.


Letter typed to nursing staff…

Apologising in advance for the bad behavior I know will be displayed whilst I am intubated (on life support), giving staff permission to bind my wrists to the bed railings if I become too aggressive, which no doubt they will do, regardless. Oh! and instructions on how to brush my hair.

I must confide in my post transplant friends for further advice on what I may require. This is not something transplant nurses let us know.

To be continued...