FRAGILE LIFE
It’s just swell inside the shelter of this pristine, white eggshell.
I feel at peace, warm, secure. This must be heaven certainly not hell.
So safe, waiting patiently again for my miraculous re-birth.
Wait! No, No! This is so, so wrong. Darkness in here dominates awaiting the night.
There is fear, foreboding, frustration. I must battle to seek the morning light!
This is not an eggshell. These four thin white walls which engulf me suffocates me.
Walls delicate to the impact of the slightest touch. The walls collapse but I am still not free.
Breathe, breathe, I cannot breathe. Oxygen now. Oh, God, make it soon!
This is not an eggshell. Exposed to reality. I am dying alone isolated in a hospital room.
I force my tired eyes open to be greeted by threatening metal appendages floating above my head
Like a parliament of rooks hovering with sinister polythene plastic bags securely fastened to claws
Inside these bags, chemicals to make me better prescribed by a wizard who claims it will be a cure
Drip! Drip! Drip! These chemicals seep deeply into my veins invading my body, the result insecure.
Is this really the remedy? Hope, faith and trust are my only defence. The patient’s holy trinity!
“Can I take your Obs, please?” Blood pressure, blood oxygen, temperature. The medical holy trinity!
Is anything wrong. Let me see my Obs. Are those correct? I am not feeling right.
Please get the wizard. I close my eyes and then time passes so slowly and soon enters the night.
Drip! Drip! Drip! Like the egg timer of my life. Perhaps I am in an eggshell after all.
And perhaps I will survive to fight and appreciate the opportunity of a new life.
Re-born with new wings, new senses and an appreciation of how delicate and fragile life truly can be.
THE JOURNEY OF A TEAR
A reluctant tear slips gently down the cheek
A forerunner for brothers and sisters sure to follow suit
Cold and scared it descends to the floor
Hoping for a soft landing waiting in silent fear
The tear is alone but dreading the arrival of its family
It knows that this is the final journey with no possibility of a return
This is the last destination in which the tear will finish its ambition
Soon to create a puddle of lost hope, dreams and aspirations.
One by one, slowly, its joined by its brothers and sisters
Then quickly there is a cascade and the flow is out of control
This is where the tear and family gather in knowledge of their fate
Arriving with exhausted wills accepting it is now too late
More travellers will follow a similar journey experienced by this tear
But this only makes space for more tears to occupy and appear
Maybe tears of loss of hope and dreams but there is certainly a chance
Next time these tears could well be of happiness, joy and dance.
THE JOURNEY OF THE TEAR – WHY IT WAS WRITTEN
Last Friday I went shopping with Carla at a local supermarket and within a few minutes the familiar tiredness and lack of energy invaded my legs and I had to use the shopping trolley as a support.
After 15 minutes of wondering whether I would actually collapse, we thankfully made it back to the car and went directly to Carla’s mum’s house 5 minutes away at which I immediately went to the bedroom and collapsed with legs in agony and heart thumping.
I closed my eyes to ease the pain and was able to have a recovery sleep of a couple of hours.
I got up and Carla made me a cup of tea and then gingerly walked to the front door to drive home.
The fresh air hit me but also I was hit by the fact that in all probability this would be the state of my mobility permanently and would only get worse in which I could no longer walk and would require motorised assistance.
Due to the many years I spent on dialysis, the arteries pumping blood and oxygen have been calcified meaning these are very narrow and compromises the blood flow starving the lower legs of oxygen. It feels like the legs are being suffocated. This calcification of the arteries cannot be rectified and makes any future transplant high risk.
Also, due to my length of time previously spent on dialysis, I now need two hip replacements but I was told by the orthopaedic surgeon to do a hip replacement would jeopardise any kidney function I have and result in me returning to dialysis.
On that doorstep, my mind processed the full extent of my future health and a single tear formed in the corner of my right eye and rolled slowly down my cheek which was the followed by more tears and I found myself crying but softly as I didn’t want Carla to notice but she did and consoled me.
It reminded me of listening to a radio programme in which a lady was talking about the moment she was told she had cancer. She said she left the hospital front door, all she wanted to do was jump face first into a puddle and wish the news she had just received had never happened. To me that represents her puddle of lost hope and dreams made up of her tears.
I also remembered Carla telling me once that if you say or do something that hurts a person that makes the person shed tears, those tears can never be taken back.
On that doorstep, those tears were my realisation of my loss of hope and dreams. No more dog walks, no more walks along the beach or through beautiful woodland.
I have cried many times throughout my long renal and transplant journey and I know I will cry again for many different reasons. Hopefully tears of happiness and joy.
I sent a first draft of the poem to Dr Clare McKeaveney (Queens University Belfast) and she returned with this evidence;
“It is ok to cry sometimes, it can be good for us. It can be ‘self-soothing’ as well as the body’s natural way to help reduce pain. Researchers have found tears release Oxytocin and Endorphins, “feel-good” chemicals released by the body known to relieve pain and maintain well-being (Gračanin et al 2014)”.
I can testify to this!
WHAT HAVE I LEARNT FROM WRITING THE POEM
Tears are vehicles for strong emotions at a particular circumstance and place in time.
There are many different types of tears – tears of happiness, tears of disappointment, tears of anger, tears of laughter, tears of love etc
Places and circumstances change as do emotions. Emotions are temporary and do not last, they change. Today as I write this, there is optimism, no tears.
But on that doorstep, the tears allowed me to GRIEVE the possible loss of my mobility but it has also allowed me opportunity to ACCEPT and PREPARE for the possible loss of my mobility and therefore when it does happen myself and Carla will be a much stronger position to ADAPT to the new mobility challenges. I had the opportunity to GRIEVE early for the possible loss of my mobility.
Now with ACCEPTANCE, we have time to research mobility scooters, local mobility support groups, mobility transport infrastructure so we are READY to adapt when it happens. There will be disappointment but no sadness, that has already occurred.
It has given me a new perspective and you could well see me in a few years’ time participating in wheelchair rugby for GB and NI at the next Olympics.
Dreams are never over, these just change and new ones are created!
Emotions are what let us be individual and human.
THE COMEBACK FIGHTER
I have been catapulted back into this ring today
To be honest, over the last thirty years, I have never been away
But this time my body has been ravaged by illness and age
Weakened by kidney, heart failure, vascular disease, arthritis and a trapped nerve in the back
This time, I am definitely not the favourite in this rematch
However. I am told age bequeaths wisdom
A formidable team in my corner to support my fight for freedom
Renal consultant, General Practitioner forms the foundation
Numerous specialist surgeons to monitor my condition
My renal psychologist to prepare my mind
I must have faith in all as I put my life in their hands
So, this rematch is not as one-sided as it first appeared
No white towel will be thrown which was my greatest fear
But I must have faith in another if I am to win this fight
The provider of all knowledge, strength and light
The most powerful life trainer in in the world, the God Almighty
With him in my corner I should be alright
FLYING
NIGHTIME I close my eyes and I am FLYING
Lifted high and low by the warm breath of compassionate sea airs
The sky is so clear mirroring the deep blue ocean far below.
The sun is shining brightly welcoming me to a day of escapism in the sky
My wings are strong and stretch to reveal glorious white feathers
Angelic wings that could only have been created in Heaven
Here there is no pain or tiredness just exhilaration
Because it’s time to make the most of this God-given creation.
I swoop quickly to join the game being played by my friends down below
Darting swallows, seagulls, seabirds performing aerial gymnastics, somersaults and cartwheels
Sharp dives and climbs and aerobatic displays so intricate to make the red arrows envious.
I feel so free, so liberated, so alive and I give myself permission to laugh out loud and smile
The world is my oyster which I have the liberty to explore
Gliding on generous winds which kiss my feathers to guide me to witness wonders
I spot the vibrant colours of a playful rainbow inviting me to chase it to find it’s pot of gold.
I swoop, I dive, I laugh, I smile
But curtains of darkness descend and I begin to feel that familiar tiredness, fatigue and pain
Reluctantly and uncontrollably, I tumble head over heels from the sky losing my fight to stay
My wonderful wings melt and morph into the structure of my chronically ill body
I am returning to my world of fear, uncertainty, vulnerability and fragility
MORNING, I open my eyes and yet again find myself GROUNDED!
The poem conveys the difference that Organ Donation can make and highlights the challenges of living with a chronic illness, the tiredness, pain and forever living in hope.
THE BIG FIGHT
Ladies and gentlemen, welcome to the highlight of the night
Introducing in the Blue Corner, WJ fighting for his life
Introducing in the Red Corner, Chronic Kidney Disease (CKD)
Hoping to make WJ beg for mercy bent double on his knees
CKD throws the first punch with daily fluid restriction
WJ resists and adheres with whole hearted conviction
CKD comes back with restrictions on favourite foods
WJ just laughs as he knows this can only do him good
WJ refuses to buckle and is determined not to be beat
He goes swimming, stays fit, CKD begins to feel the heat
But CKD attacks WJs mental strength to grind him into the ground
Those promised compatible donors are no longer to be found
Wounded and stunned WJ searches for new tactics from his corner
Home dialysis programme is introduced and WJ begins to feel so much stronger
CKD failed to realise that new technology will allow WJ to constantly attack
No matter what CKD throws, the resilient WJ will keep on bouncing back
“So bring it on, CKD” you hear WJ proudly shout
“Do your very worst as you will never knock me out”
“I am one patient who will never live in fear”
“As I am determined to keep fighting CKD for many more a year”
Post Script
WJ won this Big Fight and was awarded his Gift of Life
But CKD will always be in the background demanding a re-match
And a chance of yet another Big Fight
THE BIG FIGHT was written as a poem of defiance that Chronic Kidney Failure would not win.
THE FALSE DAWN
The Call from above arrives which sets me on my way
The voice informs me calmly that this could be my day
A kidney has been donated which perhaps may set me free
But please remember, William, you are only one of three
Arriving at the City hospital I go to the 11th floor
Greeted by a nurse I have met many times before
Each of the patients appear, all with the common plea
“Let it be my kidney so maybe I will be set free”
Bloods are taken and sent for that all important test
I send a pray to God and hope for the very best
I have an ECG and sent for the chest X-ray
So, if by a miracle, it’s my kidney, there will be no delay
Then I am left to think and all I can do is wait
The time goes so slowly and it’s getting extremely late
I dream of sparkling rainbows and that elusive pot of gold
But suddenly a nurse appears with a face so stony cold
Time stands still, I gulp for air, I can hear my heart beat
My mind begins to melt and quickly overheats
Is it my turn? Or is it God’s little game and just another tease
Let it be my kidney, Oh Please! Oh Please! Oh Please!
“It’s a positive cross match” the nurse is sorry to have to tell
The door to the promised land slams shut, welcome back to hell
I turn to my family who are looking quite forlorn
Hope disappears, reality hits, it was just another false dawn
THE FALSE DAWN was written after the disappointment of being called to the Belfast City Hospital for a possible transplant a fourth time only for it not to be viable yet again.
THE NURSES
They are a group of people who really care
Who are willing to give their love to share
Their dedication and professionalism put me to shame
I am a pain in the butt if I don’t play the game
But they have a patience and a will to forgive
And make allowances so I can live
I owe them my well-being and my health
If I won the lottery they could have my wealth
They pit with my tantrums and my bad moods
They overcome problems and only do good
I wish I could tell them of immense gratitude
So please forgive me if I am ever rude
Who are these heroes I hear you ask
These people with this unwelcome task
Who are God’s living Angels but with no wings
Who give life-saving hope without asking for a thing?
These saviours are the Northern Ireland Nursing profession
Who treat damaged flowers so they have a chance to blossom.
THE NURSES is written in gratitude and appreciation for everything the Renal Nursing Profession does for the renal patients.