Celebrating Life, Lungs and Second Chances!

“If you’re reading this…
Congratulations, you’re alive.
If that’s not something to smile about,
then I don’t know what is.” 
Chad Sugg

A little while ago I received an invitation in my email. It’s for a party this weekend to celebrate something extraordinary. Yesterday marked the 20th anniversary of my dear friend Carly-Jay Metcalfe‘s double lung transplant. Carly has Cystic Fibrosis. At the time of her transplant things were dire and she’d been given just a week to live. Suddenly she was gifted life again through organ donation.

So this weekend we’re celebrating her Transplanniversary with a quiet little gig for family and friends. Of course we will all be thinking about Carly’s donor and her family too, because while we are celebrating Carly’s life we are all aware that one family lost their loved one and donated organs which enabled our gorgeous girl to be saved.

Carly-Jay, or Carls as we call her in our household (Aunty Carls to our dogs – she is Godmother to Rufous!) is one of my dearest friends for so many reasons. She loves books and writing and good coffee and mugs of tea as much as I do. She has a wicked sense of humour and one of the biggest hearts I know. And she and I are both in the second-chance-at-life club and the socially unreliable club. Illness often means we break dates with one another. It’s just how it is.

That’s me on the left: almost blind, drug-bloated and rocking an eye patch and dark glasses after I lost 70% of my vision in one eye and 90% in the other as a result of life-saving medications for an acute hospital-acquired superbug bladder infection – the same infection that recurred and nearly killed me last year. Carly insisted on taking me out for breakfast AND cut up my food for me, put my coffee cup in my hand and was my human seeing-eye-dog. We were practising me being blind because it was predicted I would stay that way. Carls kept me entertained with rollicking descriptions of everyone around us and hardly bumped me into any furniture at all. What a treasure she is! (And yes, I eventually got most of my vision back, luckily!)

Carly having blood taken from her foot, because we both belong to the crappy over-used veins club!

Carls and I live with chronic and progressive degenerative illnesses (hers is Cystic Fibrosis and mine is Late Stage Lyme Disease with Lyme Carditis). We share the same kind of normal – living with often unseen aspects of disability (not that we think of ourselves as disabled – more ‘unabled’ when poor health puts limits on us) that impact us and our families. Modern and alternative medicine keep us alive, upright and functioning, but sh*t still keeps going pear-shaped for us, and our health is a very up-and-down road. Carls isn’t just a friend. She has been my live-in nurse and helper on more than one occasion after I have come home from hospital, or have struggled with treatment for one thing or another. I’ve been her cheer squad when it’s all been a bit horrendous for her too.

It’s good to have someone to talk to who gets what I am going through, and who can share a laugh with me over such awesome topics as incontinence, fatigue and crappy veins. That’s what friends are for, right?

I’m so looking forward to Carly’s party on the weekend. (I have a few catering surprises for her too, in honour of another friend we lost suddenly to illness some years ago, but stay tuned for those as they need to stay secret for now!) One of the most powerful things Carly’s taught me is to rock your scars and own your wounds, and both of us subscribe to the philosophy of celebrating the everyday, and laughing, no matter how bad things get. So we’ll be doing lots of laughing and celebrating come Saturday. With snacks. And loved ones. She’s still here. I’m still here. That’s worth celebrating!

Life is beautiful, and every breath is a gift. For all of us.
Sending all my love to you, Nicole   xx

PS: Just a little reminder. When you die you won’t need your organs anymore, but someone else might. Please consider becoming an organ donor and have that chat with your family and friends.

My beautiful friend, Carly!

Saturday Breakfast

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“A friend is someone who knows all about you and still loves you.” 
~ Elbert Hubbard

I’ll keep this morning’s blog short because I have to dash! I’m meeting my lovely friend Carly for breakfast at one of our favourite inner-city haunts, a cafe attached to a shop full of organic produce and delectable goodies.

Of course, I still have one eye on my cell phone, waiting for a text. Carls and I are both members of the unreliable club. For various reasons, usually health, one of us might pike at the last moment. This morning I’m good to go – I can drive myself (I’m revelling in the freedom of being able to drive again!), I have no eye patch, no nausea, no migraine or other lyme-y issue. Fingers crossed Carly is travelling well today too.

Last time we met at this cafe, I could barely see, and Carly had to lead me round like a human guide dog up the stairs and between all the tables, and cut up my breakfast. Not today. Today I’m happy to be back at a place of independence and feeling good.

So hopefully we’ll catch up, drink insane amounts of tea, share the latest news, laugh a lot, cry a bit at some of the sad things going on in our lives, and leave the cafe content, buoyed up by each other’s company and ready to face the weekend.

How about you? What plans do you have? Is there any nurture and heart time planned for you?

Sending you all my love and a cup of virtual chai tea, Nicole xx

Bert, who is banned from cafes due to bad behaviour, but who insists on coming along for the ride...

Bert, who is banned from cafes due to bad behaviour, but who insists on coming along for the ride…

On illness and being unreliable…

“I’m a very loyal and unreliable friend.” ~ Bono

One of the issues you need to deal with when you or a family member lives with chronic illness is your unreliability factor.

When I speak of chronic illness, I am talking about any condition that lasts for more than a few weeks, that doesn’t conform to a normal healing arc, or a condition that cycles into more active or less active phases.  The condition could be a physical affliction, a mental illness or a combination of these.  For whatever reason the presence of this thing in your life means that there is always a possibility that your plans, no matter what your intentions, may go awry.

Depression makes it impossible for you to get out the front door, irritable bowel means you don’t dare go to that intimate dinner party with the people you don’t know very well, a sudden infection or a flare up for you, your partner or your child and you’re back at the doctors, back on medication, back in bed…

Sick child - image from www.bloggingdad.com

Sick child – image from www.bloggingdad.com

Too often over the years, mine has been the empty chair at the dining table, the empty bed at the retreat, the face missing from the ‘family event’ photograph.

I don’t enjoy letting people down, or being unreliable, so over time I have accepted fewer invitations and my world has shrunk small.  Talk to anyone with a long term health issue and as much as they may seize the day, they often don’t know until they wake up whether the day will be a good one or not – so they become champions of winging it and making the best of those times when they feel strong, positive and with some charge in their battery.

One thing I have come to understand is that you need to have a few friends or family who know what’s going on, who are on your side, and who can cope with last minute invitations or cancellations.

Yesterday I was running on not much sleep, and it was in fact not the greatest of days.  But I had promised to meet a friend for breakfast. She has her health issues too. She understands.  We often text each other at the very last minute to cancel a meet-up, but we do everything we can to get there. We’ve also connected at very short notice, because both of us feel up to it, and why waste a moment?

I’ve caught up with Carly when she’s had an IV line hanging out of her neck, when I’ve been on my way to or home from hospital, and when both of us have felt very much less than glamorous.

Illness has taught me something important.  Friendship is more important that looking fantastic as you head out the front door. Connection is worth more than self doubt. And laughing and being with people you care about, and who care about you, is the very best of medicine.

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Today, both of us are heading back to doctors to have scans and more medical appointments.  Both of us have heads full of wondering what’s going on ‘inside’.

And both of us are unreliable. Not because we want to be.  Not because we are casual about commitment, or how much we care about you.

We are unreliable because our bodies run their own agendas, and we really have no idea how things might look from day to day.

We’ve learned that the cost of ‘making the effort’ to engage can sometimes be too high, and we’ll keep paying for days…

If you’re in the Unreliable Club, I’m sending you lots of love, and I want to remind you that it’s worth trying to make that connection, but that the bottom line is you ALWAYS need to honour your body, and your intuition around situations and relationships.

If you are friends or family of someone with a chronic health issue, I ask that you keep loving them, keep reaching out, and do your best to make sure they don’t end up alone and socially isolated.

One of the greatest tragedies of chronic illness is that so many people end up alone, with no support network. And when we have no one to care about us, and life is so hard, some people give up altogether.

Life is fragile, and we are all vulnerable. Let’s do our best to look after each other, to stay connected, and to live life the best we can with every breath.

friendship-quotes-The-sincere-friends-quotes

Breathing in Life…

Image from aimandachieve.blogspot.com

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” 
~ Albert Einstein

Yesterday was wonderful from start to finish. And yet it was also the most ordinary of days. I didn’t win lotto, there was no major excitement, no outstanding achievement. But I DID get to share my day with a gorgeous friend.

What was so special about yesterday? Simply this: we are both alive, and grateful for every breath.

Fourteen years ago my darling friend Carly-Jay Metcalfe had a double lung transplant, so we quietly and happily celebrated her Transplanniversary.  We also celebrated my yay-I-can-get-a-stupid-virus-and-my-heart-still-keeps-on-beating physicality.

We sang at the top of our lungs as we drove down the hill from Possum Creek to Byron Bay for breakfast.  We savoured our coffees and meals, read papers, discussed news and books and art, and laughed about our appalling efforts at Dr Sketchy’s the night before.

We breathed in Byron’s fresh, salty air and enjoyed the early sunshine.  Whales and dolphins danced just offshore.  Surfers cut through crystal waves.  Children frolicked in the shallows.  That’s nothing out of the ordinary around here, but we looked at it all as if it was the first time we were seeing it.

When we got home we did some writing, drank cups of tea, had naps, and wandered around on the farm.

For dinner we listened to music, and feasted on sashimi, beers and green tea, followed by Thai Black Sticky Rice with fat fresh strawberries for dessert.

We sat in front of the fire, patted the dogs, and laughed a lot.  There were a few stray tears, but for loved ones we’ve lost, rather than for ourselves.

Yesterday, and I hope for many days to come, we breathed in life.

Life is sweet. And tinged with salt water. ♥

Everyone has a story to tell…

In these days of emails, tweets and text messages we can spend our days constantly communicating, but not really sharing at that deeper level of connection.

One of my favourite forms of communication is a fairly old-fashioned one.  It involves conversation and cups of tea. Yesterday, my dear friend Carly-Jay Metcalfe, a poet and writer, came visiting with me as we sat in the kitchen of my neighbour, Gordon Greber, and heard some of his story.

Gordon is 85, nearing 86. He’s lived what he considers to be an ordinary life but as times change, what he has done and how he has lived is no longer ordinary. He has been a timber cutter, and cut sugar cane by hand and hauled it on his shoulder before the time of mechanical harvesters.  He’s been a fencer, a truck driver, a dairy man, a farmer.

As a young boy he left primary school when war broke out to work on a family banana farm, thus cutting dramatically short his formal education.

But Gordon, like many old bushies I have known, has a keen interest in the world around him.  Life has been his teacher. As we sit drinking strong tea and nibbling at the scones I have brought he gently unfolds his life before us.

There was plenty of hardship and cruelty in his childhood, followed by unending years of brutal physical labour in a range of jobs that took him far from where he was born, before he came full circle in 1954 and bought the farm he lives on today, not so far from his birthplace. That was the beginning of even more work, as he took a run-down and overgrown dairy farm and turned it into a home, and a productive enterprise.  He often worked several jobs, starting before sun-up and finishing well after sun-down in order to pay the bills. It took a huge toll on his health, but Gordon is uncomplaining. That was how life was back then, he said.  You had to work hard to get ahead. If you wanted a different life for your own family, that was just what you did.

I love watching Carly’s face as Gordon regales her with yarns about battles with brown snakes, friends killed in trucking accidents, crippling droughts and floods that tore families and farms apart. Gordon is so modest; his amazing stories told with humility and self- deprecation.

Carly’s drinking it in, and I see the writer in her storing it away.  Fodder for the mill. I know I will see echoes of this man’s life in her poetry, her novella, her fiction.

They part as firm friends, and I take one last photograph of them, Carly’s small hand pressed up against Gordon’s large one.  Both of them are battlers – with courage and grace by the bucketful. (More about Carly’s life-long journey with cystic fibrosis and a double lung transplant here) They have met life head on, and not given an inch. I wipe away a tear as they hug. Both cut from the same fabric, although they are not related and are generations apart.

Each of us has a story to tell, something to share, something to teach.  I hope that you can find some time to sit down with someone soon, and get to know each other a little better over a cuppa or a cold drink.  We are a tribe of storytellers – we need to hear them and share them.  It connects us.  It makes us whole. ♥