Firstly I must apologies for my writings are far from exotic. I am having trouble concentrating for long periods of time, that being 5 minutes or longer and I am so exhausted it seems even typing is a challenge. But I still manage to ramble.
Most of you who read my blog are friends who would know by now I have very recently decided to go and live with my Brother and Sister-in-Law till transplant. My Wonderful family have up rooted themselves and relocated from Manly QLD to come live in Beaumaris Victoria. I cannot relay the relief I am feeling knowing that I no longer have to struggle just to make baked beans on toast. We have a lovely home, a home by the beach. It will be a place of relaxation and healing.
My most recent clinic appointment last Thursday did not go exactly to plan. Guess over the past year I have become a little complacent. I rely on the knowledge that when my lungs get tired and sore I can check myself into club med for treatment. This treatment is very aggressive and consists of such extremely high dosages of Hydrocortisone that the Doc’s are poisoning my body. But as tough as it is, I always come out feeling just that little bit better. This will get me through to transplant, I will keep going on this treatment. Or so I thought. But this is not always the case. The lungs just get to a point where the function is so limited treatment alone will no longer help them function, along with this the gas builds up in the blood and poisons us. At this point respiratory arrest is imminent.So I went to clinic thinking it will be the same as any other visit. They listen to my lungs, take bloods, weigh me and tell me “keep your phone close by”. Then after a quick, friendly chat with the nurses and co-ordinators, I drag my sorry ass out of there.
But this time was different.
I look at my lovely Irish consultants face and know. He asks me over and over, "what are you doing"? I don't understand what he means. I shower which takes forever, I get about the house slowly and do a bit of housework. Apart from that I can’t do much at all. My lovely Irish consultant listens to my chest and listens intently. “Where are you living”? “As of this weekend I will be residing with my Brother and Sister-in-Law. My Boy’s living together in their own house” I say. He listens to my lungs again. “What other arrangements have you made”? “What other arrangements do you mean”? “Do you want me to check you into hospital so you can stay with us, or do you want to go home”? “I don’t want to come in for treatment unless it’s necessary, how long would I be in for”? “As long as it takes”. I am enlightened. I feel sick to the stomach. Too frightened to ask, I don’t want to hear it.
He takes my hands and with tears in his eyes he looks directly through me, in a very soft yet reassuring voice he says:
”It’s time”.
His words echo, ringing in my head and even though I know exactly what he means I question myself. What does this mean? What does he mean? What does it’s time mean? I can’t ask him, too weak. So I pop a smile on my face and in my happiest go lucky voice I say: “So what’s happening”? “Your lung volume is 15%, you have totally fixed obstruction, I am sorry, and it’s time”. There it is again.
My lovely Irish consultant, my savior, with elbows on his knees he firmly plants his face in his hands. He looks so defeated. So sad. I want to console him. He pulls himself together takes a deep breath and looks up, but this time he does not make eye contact. His face bright red. He weighs me and books me in for my next appointment. I have bloods taken. The coordinator taking my bloods say’s:“it’s ok you don’t have to say anything we know”. God, all these riddles are driving me insane. I look up to see my lovely Irish consultant being consoled by a nurse. I am out of my body looking on, like a voyeur secretly listening on a conversation that I am not supposed to hear. The nurse standing behind my lovely Irish consultant circling her hand on his back saying: “It never gets any easier”.
I scream inside my head. Don’t give up on me. Please don’t give up on me.
I leave clinic and pass through the waiting room. I see a little girl, a little girl about my size. A little girl in need of lungs. I cry for the drive home.
It's too soon, I don't want to go. Please God, please pass me by.
About Me
"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.
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.
Saturday, October 31, 2009
Saturday, October 3, 2009
REBECCA'S SONG
I recently read an article in the herald Sun. It was a very small piece and if you blinked you would have missed it.
A woman named Rebecca had been found dead in her flat. She had been lying dead for a week and not been missed.
Rebecca’s body was eventually found by her Landlord. Seems Rebecca was late paying her rent. Rebecca’s story touched me and I wanted to capture Rebecca, immortalise her in poem.
Apologies to all those who hate rhythmic poetry, I am a song writer at heart.
Rebecca’s Song
Reckless wild youthful ways hath taken toll.
Eyes now dull skin sickly grey, arms wrecked with needle holes.
Belief this world was not to be she escaped within pleasure
of senile fantasy, and longed for the day come reapers relief.
Gently packing her belongings, each trinket stained with solemn tear,
upon conclusion of prayers submitted, she succumbed to ultimate fear.
Was in her final hours a sentimental note she penned,
that spoke of un-requited love, and regret for forgotten children.
Took just one prick of a needle, for the ultimate sacrifice,
amongst meager treasures she perished, devoted mutt desolate by her side.
Solem obituary capture next day loved ones: “knew no strife”
though what the paper neglected to say, it was just a waste of life.
So those of you whom sit in judgment casting stones in reckless haste,
I challenge you to look beyond; does Rebecca reside at your place?
A woman named Rebecca had been found dead in her flat. She had been lying dead for a week and not been missed.
Rebecca’s body was eventually found by her Landlord. Seems Rebecca was late paying her rent. Rebecca’s story touched me and I wanted to capture Rebecca, immortalise her in poem.
Apologies to all those who hate rhythmic poetry, I am a song writer at heart.
Rebecca’s Song
Reckless wild youthful ways hath taken toll.
Eyes now dull skin sickly grey, arms wrecked with needle holes.
Belief this world was not to be she escaped within pleasure
of senile fantasy, and longed for the day come reapers relief.
Gently packing her belongings, each trinket stained with solemn tear,
upon conclusion of prayers submitted, she succumbed to ultimate fear.
Was in her final hours a sentimental note she penned,
that spoke of un-requited love, and regret for forgotten children.
Took just one prick of a needle, for the ultimate sacrifice,
amongst meager treasures she perished, devoted mutt desolate by her side.
Solem obituary capture next day loved ones: “knew no strife”
though what the paper neglected to say, it was just a waste of life.
So those of you whom sit in judgment casting stones in reckless haste,
I challenge you to look beyond; does Rebecca reside at your place?
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