To be more present.  That is my 2016 new year resolution.

I’ve realised that there are two ways that I can reflect back on the past couples of months.  I can either label it as the worst months of my life and wear the scars on my sleeve.  Or I can accept it for what it is and find a way to create goodness for me and the people around me.  I choose the latter.

I am determine about finding ways to use my learnings from my recent experience to help others.  At the moment I’m not quite sure how I’ll go about doing it but I just know in my heart I’ll make it happen.  Lemonade will be made in 2016.  For now I believe I can be a better person, a better friend, a better daughter and a better sister by being more present.

Being present is something I have struggled with over the years.  I am definitely someone that has tended to be on my way through to somewhere else.  I have tended to be more worried about the future and getting there quickly by disregarding the now.  I struggle with being in the moment and just feeling.  I struggle with smelling the roses and letting life play out.

I am taking this resolution seriously and have spent some of my Christmas break researching mindfulness and being in the now.  I’ve discovered, thanks to my loyal friend Google, that there is a lot of interesting information out there on being present and the art of mindfulness.

Even though I have found my research interesting I can’t see myself becoming a mindfulness guru or meditation queen.  I can however see me learning how to be more in the now in it’s simplest form and benefiting by gaining:

Clarity:  When you are in the moment you have a much better focus and things flow naturally out of you.

Calmness:  You feel centred, relaxed and whatever you do you do more easily.

Positivity:  Since there is little fear, there are few negative emotions when you are in the present.

SOLD!  If I can bring those three elements into my life I think my new ordinary would be  a pretty good place to be.

A lot has happened this year.  I’ve learnt so much about myself and the people around me in such a short amount of time.  And one thing I’ve learnt is that we can’t change the past but we can shape our future by being in the now.  By being present and aware of where we are today.  By feeling.

I want to be more present.  I need to be more mindful.

I will learn.  I will grow and be better.  I will make lemonade.

It’s been nearly one week since my last hospital visit.  It’s been nearly one week since my tubes came out.

The past week I have felt more like myself than I have in two months.  No more tubes sticking out of my chest.  No more shoulder pain and no more oozing wound.  I have felt more energetic and lighter than I have done in months.

I have three more weeks of freedom before I go back to the white building of needles and disinfectant.  I am going o enjoy these next three weeks as a reminder of what I’m fighting for.  A reminder of how life can be again, one day.

For now I’m free and just ordinary me again.  For now the circus is having a Christmas break and I’m not missing it all.

I’m free.

Today I had what I call one of my outer body experiences.  I know it is me laying on the bed.  I can feel the needles piercing my skin.  I can feel the stinging of the fluid running through my veins.  I can feel the pain as they tug at my tubes and roughly pull them from my heart, through my neck and out my chest.  I can feel the warmth of my salty tears rolling down my face.

I know I’m there.  I know this is my new ordinary.  But it all feels too confronting and strange to believe.  It all just feels so alien that it can’t really be happening.  I feel as though I’m not participating and I’m floating above watching it all being done to me.  It’s only the pain that slaps me with a dose of reality.  It’s the pain that makes it real.

Even now hours later the ache in my chest and shoulder is a reminder that it did actually happen today.  I did actually have another medical procedure.  A medical procedure that was foreign to me until today.  Until today I had no idea what would be involved in removing my Hickman line, which is the medical term for the tubes in my chest.  And to be honest after todays experience I never want to remove a Hickman line again.   It was not fun.

Many needles and tears later I am chest tube free.

Another fun filled day of rocking the blue gown.

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Here I go again.  On my way to the big white building of needles and pain.

A familiar feeling of anxiety mixed with nausea and a dull headache has washed over me.

What exactly is ahead of me today is a mystery.  I will have to brace it and take whatever comes.  I will smile through gritted teeth and tears and thank my uniformed friends for helping me and saving my life.

The unpredictable planning of my new ordinary strikes again.  My short hospital day that I was hoping for tomorrow has been transformed into an all day event.  Tomorrow I will be getting an iron transfusion and my chest tubes removed.  It has been decided that I won’t be having dialysis for at least another four weeks.  In four weeks my super artery in my arm would have healed and be strong enough to take on two pen sized needles and cope with the power of Kevin my magic dialysis machine in all his blood swirling glory.  Therefore I don’t need my chest tubes and they can come out tomorrow.  Which is very exciting because they are painful, awkward and ugly.

I am not worried about the iron transfusion but I am a bit concerned about the removal of my chest tubes.  My question is why did it take me to be under general anaesthetic and a two hour surgery to get my chest tubes in but they are only going to use a local anaesthetic and a day bed to get them out?  I questioned the nurse three times today.

“So what you’re saying is that I will be awake while you pull out the tubes from my heart, through my neck and out of my chest?”.  And each time my response was an unwavering “yes”.

I am sure this is a very simple procedure for the nurses and doctors.  But for me my mind is going into over drive.  I have images of Edward Scissorhands hacking away at my chest before he grabs my tubes with one scissor and yanks them out in one swift and rather painful movement.  Edward Scissorhands has a look of success and glory as he holds out my chest tubes in a victory wave and I lay bleeding, faint and traumatised with a huge hole in my chest.  Very dramatic I know, but that’s where I’m at.

These tubes are inside my neck.  These tubes are inside my heart.  How can I not feel them come out if I am awake??

So tonight I go to sleep with disturbing thoughts, mild nausea and a fear of what new and glorious experiences my trip to the hospital tomorrow will bring.

Oh well nobody could accuse me of leading a dull or predictable life….

“Life consists not in holding good cards but in playing those you hold well”

Two more sleeps and back to the hospital.

I am hoping my visit this week will be a short one.  This week I’ll get my chest tubes flushed and the dressing changed.  I’ll get my veins in my arm checked for healing from surgery.  And then finally I’ll get some bloods taken.  I reckon all up about 2-3 hours.

I’m starting to learn hospital time.  It’s very different to corporate world time or normal everyday time.  Hospital time is almost like dog years.  I know if I have an appointment at 8am, I’ll actually be speaking to someone around 9am.  If I am asked to register for surgery at 6.40am I’ll be going into surgery around midday.

I’ve also noticed that the hospital I visit doesn’t have any clocks.  No clocks on the walls.  No clocks on the admin counters.  No clocks in the consultation rooms or clinics.  I’m not sure if the lack of time devices is a strategy to try and lessen the amount of complaints received about the lengthy waiting times.  Or is it simply a clear indication that time isn’t relevant once you enter the hospital world.  It is one big timeless vortex and I am at their timeless mercy.  I have already lost count of how many hours I’ve spent waiting.

On the flip side I shouldn’t complain about the hard plastic uncomfortable chairs or the lack of volume on the TV, as this system of doctors, nurses and waiting rooms has saved my life.  The timeless vortex that has quickly become my second home saved my life and continues to keep me alive.  As unplanned and dysfunctional the system might seem without it I would be dead and not enjoying the fun of another silly season.

So yes I absolutely dread my hospital visits.  I still find myself unable to sleep the night before and I have little panic attacks on my way to the huge building of whiteness and heart break.  But I also know that these visits are my lifeline and will be apart of my life forever.

As my dialysis nurse reminded me last week my disease isn’t just for Christmas, it’s for life.

Two more sleeps.

I have heard many times that the test of a relationship isn’t when life is grand.  The real test of a relationship is when the chips are down.  The real test comes when we have to dig deep and find a path through the minefield of drama, trauma and the unexpected.

My life has turned into the unexpected.  I haven’t been given a guidebook on how to navigate through my current situation.  I don’t know what the best behaviour is.  I don’t know what the answers are to happily ever after.  I don’t know if I even believe in happily ever after.  All I know is that I want to live.  I don’t want to die and I want love in my life.  I want happiness in my life.

This is my second chance.  And it’s off to a bit if a rocky start.  I’m so conflicted.  I’m so worried about making the wrong decision.  But is my fear based on what was?  Is what I’ve known no longer relevant?  Do I let it all go and start fresh?  Or do I hang on and try for different?

Where is my map?  Where is my safety net?  My heart aches as this has been a lonely journey.  But I don’t want lonely anymore.  I want more.  I want life.  Am I too late?  Do I now need to accept whatever I can get?  Do I have the right to want more?  I should just be grateful to still be alive.  I should be grateful to still be breathing.  I should be grateful to be seeing blue skies and sunsets.  And I am.  But I want different.  I want laughter back.  I want more.

I feel lost today.  Yesterday I felt alive and energised.  I took five steps forward and three steps back.  This is such a confusing time.  Who am I?  Where am I?  I don’t want to wear the label of a sick person.  I don’t want care.  I want life and love.

Today has tired me.  My thoughts are tiring me.  Do you have endless thoughts?  I do.  I wish I could stop them or at least dull them at times.  But they are at full pace today.  They are relentless and exhausting me.  I don’t know what my answers are today.  I don’t know how to combat hard.

“I am not what happened to me.  I am what I chose to become.”

Carl Jung

The grey clouds are shifting.  I can see glimpses of blue sky.  I feel my darkest days have passed.  I feel my strength building and my life returning.

I can look behind me now and see the bleakest moments that engulfed me over the past two months.  The diagnosis.  The surgeries.  The starting of dialysis.  These are all moments that triggered a chain of reactions.  Reactions of pain.  Reactions of hurt.  Reactions of disbelief and denial.

My dialysis nurse said to me today that I need to grieve.  I need to grieve for the life I’ve lost.  I need to grieve for the dreams that I can no longer chase.  I need to grieve for the tomorrow that won’t come.  And she is right.  And that is what I have been doing.  For two months I have grieved.

I’ve lost count of how many times I’ve cried in the bath or wept myself to sleep.  I’ve lost count of how many times I have found myself crawled up in a ball on the floor or on the couch unable to breath from the heaviness in my heart and in my chest.  I’ve lost count of how many times I wished to be someone else.  Someone healthy.  Someone not fighting for survival.

But as I listened to my nurses advice today I felt that the majority of my grieving is yesterday.  I feel that the majority of my grieving is behind me.  I can pin point my lowest day and my lowest moment.  I can remember the pain I felt.  I can remember the crippling heart ache and the feeling of complete and utter devastation.  I felt alone and weak.  I felt broken and without hope.  I will never forget that moment.  It will stay with me forever as a reminder of how hard life can get.  A reminder of how low I’ve been and how low I never want to be again.  A reminder of why I must fight everyday.  A reminder of the second chance I have been given.

And I think that is where I find myself today.  Call it acceptance.  Call it moving forward.  Call it the fourth step.  Call it whatever you want.  All I know is that I feel less like a zombie and more like a functioning human again.  My want to hibernate under my doona morning, noon and night has disappeared.  My want to scream, cry and rip my own skin off to be free of me is less.  My aching heart and heavy shoulders are lighter.  I again want to stand upright amongst friends.  I again want to see daylight.  I again want to talk and laugh.

I now want to be me.  Whoever that is.

I’m different.  And I want to be different.  I want to live differently.  I don’t know what that means yet, but I’m on my way in figuring it out.  It will take time.

The grey clouds are shifting.

I can see some blue sky, and I like it.