Live as if you were to die tomorrow.  Learn as if you were to live forever.

Mahatma Ghandi

“What are the five things you want to do before you’re 25?”

” Ok. I’ll go first.

1. Go to uni
2. Get a tattoo
3. Buy a new car – off one of those turn table things
4. Go to Italy
5. Buy a house with a white picket fence”

I was seventeen when I made that list.  I was sitting on my college oval with my two best friends, Jodie and Shane.  The three amigos.  We were inseperable.  How simple it all was.  Our whole lives ahead of us to go and chase our dreams.

Ask me again.  What are the five things I want to do in the next five years?

1. Survive – stay alive
2. Organise an annual fund raising event for stem cell research – make a difference, give back
3. Go back to Italy – my happy place
4. Use my time lying in a hospital bed wisely – work hard, study, grow and learn
5. Spend more time with family and friends

Maybe I need a sixth.  Be present.  Be in the now.  Stop worrying about tomorrow as I’m missing today.  Stop worrying about who I need to be.  Slow down.  Look around.  Breathe it in.  Tomorrow might never come.

We have a list.  A list makes everything better.  Is that a good list?  Are they SMART?  Will they shape me to who I want to be?

I don’t know who I am and I don’t know who I want to be? I’m Fee but I’m changing.  I’m tired, I’m hurt, I’m confused, I’m angry, I’m sad.

Do you recognise me?

Do I recognise me?

Are you with me?

Hold my hand.  Come with me.

This is going to be a ride.  A ride of ups and downs.  A ride of smiles and tears.  But we have a list now.

I promise I’ll keep trying.

I promise I won’t give up.

Please don’t give up on me.

Fall down seven times, get up eight.

                              Japanese Proverb

I’m not ready.

I had 13 more sleeps. Now I only have 6.

Why does he want to see me earlier than planned? It must be my test results. My blood and my body are robbing me of time.  My dying kidneys are cheating me of my freedom.  I want to scream.

In 6 more sleeps I have to face my fate. I have to face my fate and hear once and for all when we are going to put scalpel to flesh.  Acceptance is no longer a choice.  I must finally accept that I am getting on the merry go round of hospitals and machines. A merry go round that won’t stop.  A merry go round that once I’m on I can’t get off.

I’m not ready.

Im not ready for this next chapter in my life to start. I’m not ready for my second address to be a hospital. I’m not ready to give up my freedom.

I don’t want to spend half my life in a hospital bed.  I don’t want to meet new people dressed in uniform armed with needles and thermometers.  I don’t want to accept this.

This is it, 6 more sleeps.  No more hiding. No more retreating.  No more pretending that it is all just a bad dream.  No more pretending that I have my big girl pants on and that I’m strong.  I now have to be strong.

I read a quote today.

“You never know how strong you are. Until being strong is your only choice”

I guess I’m about to find out how strong I really am.  I have no choice.

I received a pathology bill today.  Along with the bill was a Medicare claim form and one of the sections on the form was organ donor registration.

I smiled when I saw the organ donor registration form.

Then I cried…..

BIG TENT ATTRACTION:  Mental Health 

“How are you feeling?”

This is a very different question to ‘how are you?’  When asked ‘how are you?’ I usually respond with a ‘good thanks’ or a brief description of my most recent physical symptoms.  However, I’ve noticed lately that my close friends are side stepping this traditional greeting question and are more often asking me about my feelings.  ‘How are you feeling today Fee?’

The response to the ‘how are you feeling?’ question is more confrontational, raw and real.  It isn’t glossed over with a clowns smile and the murmuring of an automated ‘good thanks’.  This question is greeted with an insight as to how I’m really traveling through this life changing journey.

I understand that this question isn’t for everyone.  I understand that not everyone can or is comfortable in asking this question and engaging in a different dialogue.  I think it takes a lot to ask this question.  By asking this question you are indicating that a different level of conversation is wanted.  A different level of conversation is welcomed and can be handled.

I also understand that there is a time and place for it.  A work team meeting or a random catch up in the street probably don’t scream raw conversation of feelings opportunity.  However when an opportunity does arrive I must say I am very grateful when asked the question.  I am very grateful for the opportunity to share my feelings of fear, loneliness and anxiety.  I am very grateful for the opportunity to give my mental health the attention it needs.

There is a lot I’ve learned already on this journey.  I’ve quickly learned that the health of my mental thoughts is going to be just as important for my survival as is balancing  the chemicals and toxins in my body.  I’ve learnt that this is the year I say goodbye to my kidneys but it can’t be the year I say goodbye to my mind as well.

Going to work, talking daily to friends, sleeping enough, writing this blog, receiving your messages, laughing and hearing your stories are all activities that are helping my mental health.  These are activities that I proactively seek and know I need.  I know my mental health needs this support, needs this attention.

So please keep asking me how I feel.  Please keep asking the people around you how they feel.  And when asking this question make sure you are ready for raw and real responses.  Make sure you are ready for a different dialogue.

Thank you my friends and my family for realising that I need this different dialogue.

Thank you my friends and my family for being brave and not shying away.

‘How are you feeling?’

Today I didn’t retreat.

Today I had coffee and a chat.

Today I had lunch, wine and a laugh.

Today I didn’t retreat.

Today was a good day.  Thank you.

Today I went and saw a psychic tarot card reader.

She told me it wasn’t my time to die.

$40 well spent.

How do I make lemonade?

So many clichés whirling through my head….

Does my cloud have a silver lining?
Is there writing on my wall?
What is the good that is coming out of something bad?
This hasn’t killed me, so am I stronger?

How do I make lemonade?  How do I take these lemons and make something sweet for all to taste?  How do I allow this to change who I am and others for the good?  What am I meant to do with this?

At the moment it isn’t obvious to me what to do.  It isn’t obvious how to make pink sparkling lemonade.  It isn’t obvious how I am to embrace this situation and help me to help others.

I am finding it frustrating as I want to learn from all this.  I want to see myself grow and give back more than I’m taking.  But right now I don’t know how.  Is this lack of knowing because I am only at the beginning of my journey?  Is it because I am still falling down my rabbit hole?  Is it too soon for me see past the horror of needles and my first surgery that awaits me?  Is it because I don’t understand my new ordinary and the true meaning of life of dialysis? For me.

Patience is a virtue.  Cliché.

I have three weeks until my next appointment.  An appointment that will define my months ahead of surgery and dialysis.  I have three weeks to be me, without needles and surgeries.

Three weeks to think about and design my lemonade stand.