“My arm where you have inserted my drip is really sore”

“Your cannula in your right arm?”

“Yes that plastic tube in my right arm, my cannula”

“It’s not the plastic tube that’s hurting.  We’ve most likely burnt your veins with all the potassium we’ve been pumping into you.”

“Oh right.  Thanks.  Good to know….”

I can feel myself reaching my limit.  I need to get out of here.

I am tired of the poking and prodding.  I am tired of boiled vegetables and plastic sauces.  I am tired of the ringing bells and the smell of sanitizer.  I am tired of the vague answers and strange faces staring down.  I am tired of being treated like a science specimen waiting to be dissected.

I am a human being.  I need nurture and care.  I need to have a voice.  I need to have a choice.  I need to be in control of my own body.

I need to get out of here.

I can feel my emotions starting to boil to the surface.  I can feel the tears constantly burning behind my eyes.  I don’t want to fall back down my rabbit hole.  I’m standing on the edge.  I’m peering down.  I can see the blackness.  I can feel the blackness pulling me towards it.  I can feel it pulling me down into it’s damp dark depths.  I’m on the edge.

I don’t want to fall back down my rabbit hole.  I don’t want to collapse and give in.  But I’m struggling.  I’m struggling out here in the light.  It’s hurting me.  I’m confused.  I’m scared.  I don’t know what’s going on.  My results are bad.  They’re all concerned.  They’re confused.  They’re inflicting more pain.  More tests.  More needles.  More shaking of the head.

Talk me to me.  Tell me what you know.  Tell me what you don’t know.

I need to get out of here.  Why am I am back here?  How did this happen?

Beige walls are closing in on me.  A place of illness and death is not my sanctuary.

Hospital hell.

FACT:  Potassium and calcium in concentrate form hurt like hell when put through a drip and directly into your veins.

Fun times.

My first night back in my haven for the ill and dying has ended with a 4.45am flush, weigh and pee.

I’ll see you again in an an hour for a temperature check, blood pressure and blood test.

I’m back to the beginning.  Back in the beige walls and beeping machines.  Back to drips, needles and hourly blood pressure.  Back to being recognized by a tag on my wrist and my disease.  I am back but this time it’s different.

This time I know what they mean when they say my levels are low.  This time I go straight to the renal ward.  This time I can answer the questions.

I hate it here.  I hate the beds.  I hate the plastic pillows.  I hate that my face has already swelled up beyond recognition. I hate this soul destroying place but it saves my life.

Here’s my arm.  Take my veins.  Make it hurt to help me.  Then let me go.  Please let me go.

No sleep.  No comfort.  Hospital hell.

I believed in fairy tales.  I believed I would be danced off my feet by my very own Patrick Swayze.  I believed in me being a girl meeting a boy.  We would have struggles but love would conquer all and we would live happily ever after.

Now as a maturing woman my eyes are wide open but I am still weak for a romantic comedy.  Last weekend I went to the movies for my latest fairy tale fix.  The movie went along the winning formula of boy meet girl however it didn’t end with the normal roses and chocolates.  Instead it ended with a twist.  The boy and girl didn’t ride of into the sunset together.  Their story ended in heart break and tears.

Surprisingly this twist was inspiring.  It reminded me that we all get a bit lost.  It reminded me that even when life goes on a path you didn’t choose that there is still life to live.  It reminded me that we can find ourselves and grow and evolve into a brighter version if we are open to it.

Throughout this journey I’ve been fearful that I wouldn’t know how to turn lemons into  lemonade.  I’ve been fearful that I would lose myself in the loss of my life that I knew.  I was fearful that the rabbit hole I was down was too deep for me claw out.  Eight months ago I was a different me.

Eight months later, after my diagnosis, I have fought my way out of the rabbit hole.  I am out of the blackness and I am in the light.  I continue to enjoy fairy tales but I admit I still haven’t figured out how to make lemonade.

They call you my lifeline.

They tell me to protect you at all costs.  No watches.  No bracelets.  No handbag straps or shopping bags.  No needles.  No contact sport and blood pressure tests right arm only.

I followed the instructions.  I looked after you and I checked you daily.

For a while you were  strong.  I could feel your thrill with the lightest touch.

But something has changed.  You are hard to find.  You are weak.

What did I do wrong?

They say I will need you.

I don’t want to need you.  Not now.  Not ever.  So I am not going to fix you.  I am not going to have more surgery.

Today you are not my lifeline.

You fall, you rise, you make mistakes, you live, you learn.  You’re human, not perfect.  You’ve been hurt but you’re alive.  Think of what a special priviledge it is to be alive – to think, to breathe, to chase the things you love.  Sometimes there is sadness in our journey.  But we must keep keep putting one foot in front of the other even when hurt, for we will never know what is waiting for us just around the bend.

Ritu Chatourey

I don’t know how to be me.

My new skin is baggy.  It doesn’t fit me.  I want to jump out of it and go back to my old skin.  I want to go back to the old me.

I have crawled out of the rabbit hole.  But now at the top the light is too bright.  The space is too open.  I had grown strangely fond of the dark and confined space.  Can I slip back in without anyone noticing?  Can I survive living in the shadows?

My confidence has gone.  I don’t how to be…me.  I use to laugh.  I use to know what to say.  Now I bumble.  I stumble.

I was told the other day that I over explain.  Perhaps I do.  Perhaps I do because I am still trying to make sense of it myself.  Perhaps I do because I don’t want to leave room for judgement.  I have been judged and I have been hurt.  By those that I called close.  I now protect.

I am tired of thinking.  I am tired of trying to fit in.  How do you make it look easy?  How do you glide through life?  I watch people evolve.  I watch people achieve.  But I trip over my own skin.

I know who I use to be.  I know what I use to like doing.  But that is gone.  It is now all different.  How do I live in my new ordinary?

I was 12 years old the first time I saw a dead body.  It was my nonno (grandfather).  I remember two things.  I remember how small he looked inside the big red wood coffin and I remember his eyebrows.  My nonno died of cancer and he had lost his eyebrows through his treatments.  So when I saw that someone had painted on some eyebrows after he had died I was horrified.

Since then I have unfortunately been to several more funerals.  And from these experiences I realise that I don’t want the traditional funeral with all its rituals.  It’s just not for me.  But I know that when a loved one dies we need to come together in some form so that we can support eachother in our mourning and also take time out to reflect and celebrate the life that was lived.

This might sound all a bit morbid but when I was writing my living will I thought a lot about my funeral.  So I’ve decided that I want my friends and family to remember me and celebrate my life in a slightly different way.  I wish for them to go to my favourite restaurant and enjoy themselves while eating my favourite food and drinking my favourite wine.  I believe this is the best way to remember me.  Not by sitting in a stuffy funeral parlour but by doing something that has brought me so much joy over my life.  By doing something that I love doing, laughing and chatting while devouring delicate seafood swished down with French champagne.