THE FALL AND RISE OF WJ

On my kidney failure journey, I have been confronted with a choice of which pathway.

Taken the direction of best intention but I have now found out I have a maladroit way.

Though the mind is willing, the body no longer the willpower to match the soul.

Innocuous challenges once met with confidence now demand respect if not to appear a fool.

 

A double hip replacement and reduced oxygen to the legs make me unsteady on my feet.

Falling is common now, creating doubts this will lead to my final defeat.

Pneumonia and a heartbeat that flutters too fast makes me gasp and breathless.

Bouts of gout in every bone joint plus a trapped nerve in the back and I feel helpless.

 

I find myself flat on my back desperately stretching backwards clinging onto life ropes.

My body is screaming to resign, retire, give up, submit and admit defeat for there is no hope.

But my mind and soul yells back even louder – “Ignore this load of negative nonsense”.

As every morning, I am blessed to have the privilege to enjoy my five God given senses.

 

Every dawn the sound  of the angelic birdsong entices me to enjoy another exciting new day.

I marvel at mother’s nature’s kaleidoscope of vibrant colours perfectly mixed to display.

I smell freshly brewed coffee, bacon, eggs and toast which signals breakfast is prepared.

I smile in anticipation of the flavour hit and the prospect of conversations to be shared.

Then I feel the tender loving touch and embrace of those I love impossible to be compared.

 

When I fall, I will rise again with a triumphant roar to appreciate this beautiful, precious life.

 A positive mind will always beat a tired body as sure as darkness will succumb to light.

 

THE BOXING WARRIOR

Look in the mirror. Do you see a weak and vulnerable person by name?

Or a relentless boxing warrior at the top of the living life survival game.

A deluge of punches raining down to challenge body and soul to disrupt daily life.

Never underestimate the wounded soldier who will never submit but determined to fight.

 

Failure is not to get knocked down but the failure to get up again and again after every setback.

This health pugilist will rise from the floor determined to defend against the next attack.

To feel invincible, confident, unbeatable, unstoppable and sense the opponent’s fear.

Never take a step backwards, never have a negative thought and victory will become clear.

 

The love and support of those so near are hidden strengths which will surprise undetected.

Boxing gloves, gum shield, and God sitting in the corner, who could be better protected?

Look in the mirror. Now what do you see? A weak and vulnerable person by name?

Just the reflection of a boxing warrior standing tall dressed in an armour of pride without shame.

 

TIME FOR A BIRDSONG

Its 5am and I am woken by the sound of mother nature’s triumphant alarm clock.

A host of feathered puff chested angels perched in a tree gathered in a flock.

At the top of their voices these tiny harbingers of hope herald a new day dawning.

“Wake up, get up, rejoice, rejoice because it’s the start of a blessed new morning”.

 

I smile and listen to the composed message this harmonious birdsong brings.

Positivity floods the airwaves; a divine tune being played upon my heart strings.

I peer through the window and naively ask “How do you manage such a welcome every day?”

They reply, “Because we appreciate we are fortunate to live a life of luxury without any delay”.

 

“Other parts of the world wake to sounds of war and shortages of shelter, water and food.

No morning birdsong here only pessimism with darkness casting shadows on the good.

We sing our birdsong to celebrate our freedom and a choice denied to so many families, children and mothers.

To take a deep breath, smile and grasp this day ahead as we know every day is special, unique like no other.”.

I nodded my head in understanding - to take one day at a time which must be closely treasured.

Sunshine or rain, the daily hope the birdsong brings can never be truly measured.

 

Never take today or the future for granted and listen to what the Birdsong has to say.

Wake up, deep breath, smile and rejoice in the birth of another exhilarating new day.

 

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 11^th 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.