Dear dad,

Dialysis; a word that has haunted my life and a process that has plagued yours. A process so grim, so gruelling, so necessary for you to survive dad.

Your life was cut short, the life you knew, that we knew, in 1992. Or was it 1993 when your kidneys failed? The image you described is seared onto my consciousness like it is onto yours I expect; pissing blood.

It was then that you knew, then, when you were a man in his early 40s, a working man, a man of sweat, of sinew, of strength, a man who carved your future, your wife’s, ours, out of brick and earth.

And it was then that our lives changed.

I was a boy, a boy at school, secondary school, on the cusp of puberty. I was then, as I am now, fiercely protective of you, of my sister, of my family. I remember a class when someone crudely joked about kidney failure and I said how you were on dialysis.

But mum is your true protector, the woman you married in 1973, the woman who took the vows, stands by you now as she did then, not as a woman with a future of happiness on the horizon, but as a carer, who tends to your needs.

I can see the image of you outside that church in Southampton with mum in your arms. That photo. Your wedding photo.

You are my father. I am your son and I love you beyond these words.

Your life has been so cruel. I asked myself why you had to be afflicted by this illness. I asked this question for years. I ask it now, still. I reject God. To me, no God could sanction a life beset by the horrors you face with dignity, possible resignation yes, but you have handled your illness as…as… as a man, a husband, a father.

Yet, you believe. In God you believe. And in a way I can’t question this, as you prayed for a miracle, a miracle to cure your epilepsy. And cured you were. You have faith. I hope this unwavering faith is repaid to you.

Perhaps you dream of reincarnation, a life reborn without this physical plague. I think you do.

Yet dad, your life has been beyond worthwhile, for me at least, for everyone you have touched, for everyone who has loved you.

You have given me life.

Your footsteps may not be able to ever cross sand but they have marked this earth forever.

The love you have for us is so clear. All you have done, as your physical frame has been tortured with those needles piercing your skin, your fistula, three times a week, to pump your blood through the machine, to cleanse it of the impurities which would swiftly bring your death, a death I have feared, and fear still, all you have done is out of love for your family.

When your kidneys failed you took the decision to dialyse out of the house, the horrors of this process, bloody horrors, confined to a cold, dark hospital ward in Portsmouth. As the 1990s drifted by I would grow from boy to man, your eyes would watch this, your words, your actions would facilitate this. Your trips there thrice weekly some thirty five miles from our Chandlers Ford home were hard I can only presume, five hours of strain no body needs to be punished with.

But dad, I would excel at school and college, thanks to you, thanks to mum. Your illness was something you handled with grace, it was a part of your existence and I was so aware of it, yet it did not prevent my success. Thinking back now, the only image I recall, perhaps the passage of time has eroded the others, is of your fistula bleeding, and myself having to wrap your arm in a tea towel to stem the flow.

Grandma reminded me recently that it was a new tea towel so I don’t think mum was overly happy!

This is the grandma, your wife’s mother, who you would visit on the way back from dialysis past midnight as I slept, as my frame grew, as my mind did too. Grandma asked me once if I recalled you in good health. This hurt in a way as it showed how so much of my life has been lived with the shadow of your ill health following me. This sadness is only for the life you could have had. Aside from a few snatched memories, I don’t think I do. Memories like our childhood family trips to Cornwall, France and Germany.

The pictures of you in good health playing in a park on some climbing frame with my sister and of you burying us in the beach sand are ones I cherish. Mum always said it was a blessing your mum passed just before kidney failure. I think this was a blessing. Your dear mum. Our dear grandma.

Back then you were a working man.

Confined to a wheel chair now after your failed hip replacements, sections of society may look down upon you. Certainly this is the perception we as a family have of the Department of Work and Pensions and the pressure they bring down upon you and mum with their threats of cancelling benefits and incessant bureaucratic demands.

But to those people I say this; you were a working man.

Not a fraudster, a cheat, a drain on the public purse.

No dad, you are a man who after the successful transplant you had in 1999 when I started university in Sheffield, decided to return to work. And to gut bursting work you returned, risking your body, your kidney to put food on your family’s plate, as you did throughout the 1990s when dialysis confined you to the role of house husband, despite the desire to work being written in your soul.

Friends at school used to joke, ‘Is it stew again John’?’ It usually was. Or cottage pie.

But, you fed us. You watered us. You enabled my sister and me to grow.

And so whilst your life now is one no other would wish for and one that makes me feel so sad, I have so much respect for you dad, you are my idol, the man I look up to.

Yes we are different; mine has been a life of continued education, my future will be built with words, the words I write. Yours was a life of strength and a burning desire to achieve. And achieve you did. The epilepsy that prevented you from starting the shipwright apprenticeship, after school, your intellect gained, was to curtail that future but it would not cut you down.

Like kidney failure has not cut you down.

I have learned from you, how to overcome the highest of hurdles. After that transplant in 1999, I hope you recall your achievements before its failure in 2007, as I stood crying in Manchester, my home then, phone pressed to my ear while you told me it was failing.

The successes; the job you held down for a few years before restructuring took your employment, the house you bought for my sister to house her and her new born away from the grim reality of shitty rented accommodation that only brought her baby hospital trips, the trip around Ireland with mum in our camper van, the computer you bought, the new home we moved into, the patio you lay; new kidney beating inside you.

Life since 2008 has been progressively harder for you as the cruel ageing process does not abate. Your life now consists of dialysis, hospital visits, carers four times a day to hoist you from chair to wheelchair to bed. But never forget that you are my dad and I as your son am bonded to you beyond these words. All you have ever shown me is love and support. And interest.

I hope to marry in time, to find that woman you crave for me, and when I do a song will ring out. I pray you will still be with me then. Pray is not correct, hope, hope so much. These words have brought tears to my eyes as I type through blurred vision. Please be there.

The song that will play is the one synonymous with your marriage to my mum, the mum I idolise too and love so so much. As we discovered Ireland together, this song rung out one night in a restaurant. In sickness and in health you have stayed together, this is what I wish for for my marriage.

‘Let’s, let’s stay together…
Loving you whether, whether
Times are good or bad, happy are sad…’

So, whilst hope has been progressively stripped from you, your mental strength remains, a powerhouse of a man in my mind, so few could have coped with this torture. Your chances of another transplant are so slim.

I remember you saying how one night in the contact lens factory where you lifted heavy machinery to earn money for us, despite the risks to your new kidney, how the supervisor broke off from work and spoke to you for some two hours extending the tea break beyond 15 minutes.

In this conversation she told you how much respect she had for you returning to work after the transplant. You were in that Southampton job fair queue barely before the stitches had been removed.

This is you dad; a working class hero.

I am your son.

#deardad

Dear mum

Dear John

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7 thoughts on “Dear dad,

  1. You have both been so brave. I was on dialysis for 8 years before I had a transplant at the age of 43 and my children always saw me as ill. My family were my biggest support but I think sometimes it can be harder on them than on us. I am now training to be a nurse, and qualify this year. I have done this so I can give something back. I have the greatest respect for your dad, and your family and will be thinking of you in my prayers x

    1. Hi Angie. I really appreciate your comments, thank you. It is really interesting to hear your take as a parent in this situation. I have always really seen it from a son’s perspective. It is great to hear that you have trained to be a nurse. I wish you all the best with the career. x

  2. Hi John,
    Thank you for sharing your story. It was so emotional to read because of the uncanny similarities to my own life! My hero is my Dad, who inherited PKD from his Mum (who passed away at 48), who was diagnosed in his early 30’s and who has had now nearly 30 years of deterioration. We had 4 years on dialysis, and then received a Irish kidney in 1997 on the day of Princess Diana’s funeral. I will never forget the journey to and from the hospital, not meeting one car either way!
    We have been very fortunate that his kidney has lasted until now, but like your father, have all the additional complications that strip them of their independence, freedom and lifestyle – Cancer, muscle wastage, emphysema, spondylitis, diabetes, two new knees, waiting on two new hips….. Etc etc. And now, kidney rapidly in decline we are going for the 4 attempt in 3 months at a new fistula to enable dialysis.

    What a life it gives us! Our condition is hereditary, so my little brother has it, and I’ve just developed some cysts. Looking every day at my hero and seeing what he overcomes takes my breath away. It makes me want to be better, and do more, and gives me overwhelming perspective! Who knows what the future holds for my brother and I, but we will absolutely face it with dignity and strength, that is all we know! Having had the best Teacher around.

    I know you don’t believe in a God, but I hope you do have faith. Faith in love, and compassion, and life’s incredible gifts despite such tragedy and challenge. For me, it is the only way to live, and what truly gets me out of bed in the mornings when I watch him wince in pain and just want to cry. There are some truly miraculous things in life, life this weekend when I was able to take my parents (who are both very ill and disabled) to St Ives, their most favourite place and see them glowing whilst watching the waves and feeding the seagulls. That it truly magical, and another memory for my jar! Special moments! They are all we have.

    Again, thank you for sharing. I wish you all the very best, and your family.

    Much love, Lindsey

  3. hi john my husband also called john has been on dialysis since 1982 i met him in 79 wen i was 16 due to his illness we werent able to have children he had a transplate in 86 and 87 it rejected, hes on dialysis 3x a week 4 hrs a time my hero my love my soulmate we do wat we can the best we can i wouldnt have it any other way now cant remember wat life was like back then hes still with me hes 60 this year so im licky to still have him thank goodness xx

    1. Hi Karen. Amazing to hear you husband has been on dialysis for so long. I wish you all the best. I’m interested to know how you found my letter? Was it on a particular website or Facebook?

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