William Johnston was on dialysis for 17 years and received his Gift of Life 5 years ago. While on dialysis he discovered a passion for writing poetry and Plays. His latest Play is “The Starman, the Superhero and the Wizards” – explores the possible physical and mental challenges confronted by a patient on dialysis for any length of time but is ultimately a celebration of Organ Donation. William is Renal Advocacy Officer Kidney Care UK and co-Chair Northern Ireland Kidney Patients’ Association – William.johnston@kidneycareuk.org mobile 07500007612
The Play is being adapted for performance by the RENAL ARTS GROUP (QUB) and will feature in “The Art of Health and Wellbeing” as part of the Economic and Social Research Council Festival of Social Science at THE SUNFLOWER BAR, 7 – 9PM, Wednesday 6th November.
Scene
Barcelona Beach, August 2018, early evening
The sun is shining, hot in a clear blue sky.
The local Spanish families are beginning to settle on the beach as many sunburnt tourists scurry away to recover in nearby hotels.
There is laughter and a feeling of excitement and anticipation as the Spanish families prepare to enjoy the best part of the day on the beach where they can enjoy the sun and swim in the sea. Impromptu beach football and volleyball games begin.
Nearby, an Irish family prepare to enjoy what the late Spanish afternoon sun can offer.
Present
Will – 42 year old. Husband of Joy and father of Grace. Will is tall, slim, young looking for his age despite the onset of baldness
Joy – 35 years old. Married to Will and mother of Grace. Joy is slim, blonde hair, blue sparkling eyes and a stunning smile
Grace – 7 year old daughter of Will and Joy. Grace is a smaller version of Joy and exhibits the energy and natural giddiness and zest for life of someone so young
JOY: Grace, come here and I’ll put some sun tan lotion on you. You could burn like a crisp in this sun
Grace skips over gleefully to Joy and impatiently waits for her mother to apply the sun tan lotion
JOY: Now, that’s much better. Go and help daddy put his sun tan lotion on. And tell him to get in the shade and put his hat on. Goodness knows, the nurses back home have warned him enough of the dangers of too much sun on holiday.
Grace slides over to where her daddy is arranging the towels and grappling with the sun umbrella
GRACE: Daddy, mummy wants me to help you with your suntan lotion, put your hat on and get in the shade as soon as possible.
WILL: OK, princess, that’s the sun umbrella up, now let’s get the magic lotion on. Better do as the wicked queen says!
JOY: Hi, I heard that!
Will grimaces, forces his hat on and winks at Grace, Grace giggles
Grace begins to put the sun tan lotion on her daddy’s arms, back, tummy chest and legs and notices all the scars over her daddy’s body
GRACE: Gosh daddy, look at all your scars
WILL: Have I ever told you the story behind daddy’s scars?
Will looks at Joy and smiles. Joy smiles back.
GRACE: No
WILL: No!! Then no better time than now. Sitting comfortably? Then I will begin. It’s a true story. You already know parts of it.
Many years ago, I found myself in a place called the land of renal failure.
It was a frightening land where food and drink was restricted and moving around difficult but worse were the battles with the evil dragons and demons that roamed the land. I was determined to fight these dragons and demons just like your favourite wizard Harry Potter
GRACE: Harry Potter is so wonderful!
Grace smiles and flutters her eyes
WILL: Like your Harry, I fought these dragons and demons on a daily basis but I never showed any weakness. It was tough but I had to because I had only one goal in mind. Do you know what that goal was?
GRACE: No
WILL: To return to worship my queen and princess. Guess who they are?
GRACE: Mmmm, don’t know
WILL: You and your mother of course
Grace squeals with delight
WILL: But those dragons and demons were hideous and ugly with razor sharp teeth, slimy green claws, fishy smelly scales and multiple bulging eyes. They attacked me not only physically but mentally as well. Often they would appear in my dreams. It was terrifying.
GRACE: Were you not afraid daddy?
WILL: Yes, but I never fought alone. I had powerful allies – the mighty white wizards and their army that lived in the magic white castle on the hill. They never let me down. If I got hurt where do you think I would I go?
GRACE: The white castle?!
WILL: Exactly, off to the white castle where the white wizards would attach me to their magical red machine with its spinning wheels, flashing lights and alarms. What did we call that machine?
Grace hesitates, bites her lower lip and looks down, says quietly
GRACE: Daddy’s Dream Time Machine.
WILL: Yes, a few hours on the dialysis machine and then a bit of a rest afterwards and I would have energy and strength back ready for the next battle.
GRACE: Ahhhh, I didn’t like it when you were on that machine. I missed you. It kept you away from me all the time.
WILL: It wasn’t all the time, just three days a week.
GRACE: It felt like it was all the time and even on holiday.
WILL: I know. But it gave me the time to fight those ever present dragons and demons and stay alive until a superhero came to save me.
GRACE: What! A superhero saved you! Who was it? Did he have a superpower? Could he fly, become invisible, climb buildings just like spiderman.
Grace acts out the actions of flying and climbing walls like spiderman.
Will smiles
WILL: Yes Grace, a superhero but with the best superpower of all.
GRACE: What was it? What was it?
Grace jumps up and down and spins round with excitement
WILL: His superpower was to be able to ……..
Will pretends to give a drum roll
WILL: Give the GIFT OF LIFE His superpower was to save my life and six others who like me had been fighting dragons and demons
To give the Gift of Life is courageous, selfless, compassionate.
I will never get to meet him but he will always be my superhero and I will be forever grateful. Like all superheroes he appeared when least expected but when needed most.
GRACE: Wow.
Grace giggles.
WILL: Yep, Grace, wow!
GRACE: But, how did you know your superhero was coming? Was there Fireworks? Trumpets? Thunder and lightning?
Grace runs around making the sound of exploding fireworks, and blowing trumpets.
WILL: No, Grace, no fireworks. No thunder and lightning. No trumpets. Just the sound of a telephone that shattered the silence of an early Monday morning. It was the Wizard’s assistant asking me to come to the white castle. The superhero had died and his powers of the Gift of Life were about to be given to those who needed them the most and that included me. I remember it was a beautiful dawn with the sun shining. What a day to begin my new life.
GRACE: So daddy, all those scars came from fighting the dragons and demons.
WILL: Yes darling, whenever I was injured by a dragon or a demon, I would go to the white castle where the wizard with his magic and magical wand would seal my wound. The only sign of the wizard’s magic and skill is a scar.
Every one of my scar’s has a story behind it. I remember every scar vividly. How it came about, what dragon or demon inflicted it. I remember the length of each battle, how much I suffered during the battle but most importantly which wizard used their magic to mend me, fit for the next battle.
Will points to one of his scars
WILL: People say scars are unseemly and should be covered up. But I don’t
Grace spell SCAR
Grace begins to spell out the letters slowly
GRACE: S-C-A-R
WILL: Now spell STAR
GRACE: S-T-A-R
WILL: You see Grace, change one letter in Scar we have Star. Scars can become Stars it depends on how you view them. These are my stars, my signs of coming through so many battles. Will I hide my scars? No! These stars show I have had the strength and resilience to fight so many dragons and demons throughout my life. And now thanks to my superhero and his superpower I am here on this beautiful beach with the heat on my back, sipping a sangria and most importantly I am here with my queen and my princess. The End. And that princess is the story of daddy’s scars
Will smiles and takes a contented sip of his sangria, Grace laughs
GRACE: You won because of the superpower given to you by a superhero But daddy you are my superhero and with all your stars, you are my starman. That’s my all-time favourite story.
Grace hugs Will tightly around the waist and then lets go.
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GRACE: But I am feeling hot now, need to cool down. Mummy, can I go and play in the sea?
JOY: Yes, but be careful stay in sight, don’t go too deep.
GRACE: Yippee!
Grace grabs her flippers, mask and snorkel and runs laughing and skipping down to the waterside. Joy looks at Will
JOY: What a story, Will!
WILL: How else could I explain renal failure, dialysis, organ donation to someone so young
JOY: Darling, she may be only 7 years old, but she understands more than you think. She knows you were unwell but now you are much better. She absolutely adores you. What did she call you – her “Hero” her “Starman”
WILL: I know, I know, and I love you both so much. But I lied to Grace. I have not won. Not all scars become stars. Not all scars are visible.
JOY: What are you talking about?
WILL: I am still fighting demons.
Will points to his head
WILL: Demons that live in scars in my head. Scars which are fragile, delicate and open easily. Freeing the demons to wrack havoc in my mind.
Demons of loss – the loss of hope, pride, self-esteem. I have met many demons on this renal journey – demons of helplessness, isolation, loneliness, regret, sadness, self-pity, despair and Anger.
These demons still have the power to defeat me and destroy the gift of life and the work of the wizard. Thank goodness Grace cannot see these scars.
I feel my GIFT OF LIFE has come too late. What am I going to do now? You know I tried to keep working during dialysis but it just got too much. Who’s going to employ me now? How am I going to do justice to my superhero who gave me the Gift of Life? Sometimes I feel such a failure.
I told Grace amazing wizard’s at the white castle could take care of my physical wounds which would leave a star. But who takes care of the scars in my mind. Can these be made into stars? I don’t think so.
Where is my mind wizard to help me fight the demons in my head?
Joy, why are you looking at me like that?
Joy is casting a perplexed expression at Will
JOY: Will, I love you. I am your wife, I have been with you every mile of this journey. You were never alone, I was always with you, by your side throughout.
I felt your anguish and frustration of living life on dialysis, always living in hope. So many disappointments and setbacks. You feel angry and justly so.
But anger doesn’t solve anything. It builds nothing but can destroy everything. You will find work again. This is the beginning of a New Life for you.
Joy suddenly leans over and strikes Will on the shoulder
WILL: Awhh! What was that for?
JOY: Because, never ever let me hear you say your GIFT OF LIFE came too late and never ever let me hear you think you are a failure.
You have now the possibility of witnessing Grace’s future. Witness her grow into a beautiful lady. Maybe walk her down the aisle. Maybe see her become a mother.
This is what your superhero has given you. The superhero has given you the most precious thing in the world – he has given you time. Quality time.
Treasure it and value it.
When you were on dialysis we were given time to survive but the superhero has given us time to live.
Look at Grace. Playing, enjoying herself. She knows what to do. How can you think you are a failure when you have Grace!?
I know you have demons still to fight and I promise I will find you that mind wizard to help you fight these demons.
And Will, you have also been given time to be with ……
Joy stops to compose herself, her voice breaks and her eyes well up
JOY: Me!!!
We have been given extra time to be together. To start enjoying our lives together as a family. I will always love you Will.
A tear drops down Joy’s cheek
JOY: So did the Gift of Life come too late for you? Are you a failure?
No! No! No! You fought, you won and you are a hero to a loving wife and an adoring daughter
Will tenderly wipes Joy’s tear away and takes hold of Joy’s hands
WILL: Forgive me Joy. I am so sorry. Of course, you are right. The best way I can honour my donor is to simply enjoy life with you and Grace. Joy, you are my world. Without you I would never have survived this journey.
Sound of mumbled shouting approaches
JOY: Shhhh! I think Grace is coming back.
Will and Joy look and see Grace stumbling up from the water edge with her flippers still on as well as her mask and snorkel. The atmosphere instantly changes. They begin laughing at the sight of Grace.
GRACE: Dubbie, Muppie, Dubbie, Muppie, I been stinking
JOY: Grace slow down, take your mask off and snorkel out of your mouth, we can’t understand what you are saying
Grace takes her mask off and snorkel out of her mouth. She is breathless but excited
GRACE: Daddy, mummy. I have been thinking.
She hesitates to catch her breath and then quickly speaks
GRACE: I want to be a superhero too! I want to be a Superhero too. When I die I want to have the superpower to give the Gift of Life and save lives of starpeople like daddy.
Will and Joy look at each other. Will picks Grace up and twirls her around. Will wipes the silent tears from his eyes and sets Grace back down.
WILL: Grace, that is an amazing thought and we will talk about this again, later, much later. I promise. But we are on holiday and it’s time for fun. Lots of fun. Now grab your goggles and flippers and I will race you back down to the water edge.
GRACE: Yippee! I bet I win.
Will and Grace begin to run down to the water laughing, pushing each other. Joy shouts after them
JOY: Be careful you two!
GRACE: We will!
JOY: I was talking to your daddy! Remember you are only transplanted a year. And, Will, take care of Grace. Your mind wizard is closer than you think.
Will stops, looks back, nods, smiles and runs to catch up with Grace
Joy is left alone sitting on a multi-coloured beach towel and watches her husband and daughter playing at the water edge. She smiles and looks at the sun in the summer sky
JOY: Lord, have you time for a chat?
Joy begins to say a silent prayer with her eyes closed, the heat of the sun beating down on her face.
JOY: Lord. Thank you for the Superhero for giving the Gift of Life. Thank you for the wizards at the hospital for having the skill to make the most of the Superhero’s Gift. But most of all, thank you for Grace. Grace is the reason for Will to continue to fight his dragons and demons. Grace can be Will’s mind wizard. Amen!
Joy gets up, dusts the sand off her clothes and runs towards the sound of laughter of her husband and daughter, the starman with his mind wizard, having fun, enjoying the Gift of Life and having the time of their lives.
THE END
GLOSSARY
SUPERHERO – DONOR
STARMAN/PERSON- TRANSPLANT RECIPIENT
WIZARD- TRANSPLANT SURGEON/CONSULTANT
WIZARD WAND- SCALPEL
BATTLE- OPERATION
WHITE CASTLE- HOSPITAL RENAL UNIT
DREAM TIME MACHINE- DIALYSIS MACHINE
SCAR- BATTLE FOUGHT
STAR- BATTLE WON
DRAGONS- PHYSICAL CHALLENGES
DEMONS- MENTAL CHALLENGES
GRACE- MEANS “GOD’S FAVOUR
MIND WIZARD- THE “PURPOSE” WE FIGHT THE BATTLES TO SURVIVE