Has a Book Changed Your Life?

Has a book changed your life?

This is the book that changed mine. Robyn’s Book a true diary by Robyn Miller.

 

robyns-book

Robyn’s Book a true diary by Robyn Miller

My copy is battered and bruised, the pages fragile, yellow and brittle, but even after all these years Robyn’s words still speak to me.

On Cystic Fibrosis by Robyn Miller

On Cystic Fibrosis by Robyn Miller

I was in Year Eleven when Robyn’s Book found me. It was the first time I had read a book by someone with Cystic Fibrosis, but the similarities didn’t end with the familiar bond experienced by people with Cystic Fibrosis.

Robyn was a writer, something I desperately wanted to be, and like me she had the fortune of relatively good lung health until she was sixteen.

I wasn’t a reader who had to imagine how it felt to watch a friend die knowing you had the same disease killing you also. I was there, living those moments too.

To this day, each time a member of my Cystic Fibrosis family dies her words have inevitably run through my head.

Pain Song By Robyn Miller

Pain Song By Robyn Miller

Robyn died as her book was about to go print, and although I never had the chance to meet her, my grief for her death was no less real. Her words had given me both a sense of a shared journey and an unexplained sadness.

Her words stayed with me for years and gave me the inspiration to keep writing. Robyn was one of the writers I both emulated and plagiarised while I was in high school and her words helped shape me into the writer that I am today.

As my first book steamed towards print, I began to lose the war against Cystic Fibrosis. And once again, it seemed like my life imitated Robyn’s – in the afterword by Neil Glixon, he explains that in her final days Robyn asked if her book would still be published.  I thought of Robyn as I was dying, and how simular our paths had been. Words tumbled through my head, but I no longer had the strength or breath to write and the knowledge that my book would still be published was bittersweet.

As hope was rapidly fading I was offered a second chance and I lived to see my words in print. From one salty girl to another – thank you Robyn, your words gave me hope and changed my life.

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Robyn’s Book was an important part of my journey to publication. You can read my story, along with inspirational stories from 23 other authors in Writing the Dream.

Writing the Dream is available to pre-order from the Serenity Press, website now.

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You’ll find more of my recommendations for reading about Cystic Fibrosis on my Pintrest Board : Cystic Fibrosis in Print – Books and More

Growing Up When Your Mum Has Cystic Fibrosis. Part 3

This last part of my interview with my son  deals with his thoughts when I was called for a transplant.

Part 1 deals with Jarryn’s childhood and Part 2 his decision to move to Sydney when I was listed for transplant.

 

Where were you when you heard that your Mum had been called for a transplant?

The first week at my new school I made my regular teachers aware of mum’s situation and knowing that if Mum rang the call would be important, they had all given permission for me to answer my phone if she called.

I was in film class when my phone rang. My step-brother Ronan picked it off my desk and said, “Your Mum is calling.”

I grabbed my phone and went to race outside but the relief teacher held his hand up for me to stop. Ronan explained the situation for me, but by the time I got outside, the phone had stopped ringing. I immediately rang back and Grant answered the phone. My heart stopped for a second thinking this was bad news, but Grant said, “Your Mum’s having an x-ray, she’ll be out in a minute with some news for you.”

I don’t know what we talked about while I waited for Mum to come to the phone, but the first thing Mum said was, “I’ve been offered a set of lungs.”

What was your first thought after the phone call ended?

I have never been so freaked out in my life and I wondered if I had just spoken to my mum for the last time.

What happened next?

I sat down for a while before I went back to class. Everyone asked what was going on. I hadn’t told many people that my mum was sick and they all stared at me when I said, “My Mum is going into surgery to have a lung transplant.”

There wasn’t anything anybody could do or say that would help me. I just had to wait.

And it was a long wait.

The next pieces of information arrived by text. Due to the time difference between Sydney and Perth I knew Mum would be in surgery until midnight. The first text Grant sent said that the surgery had started. I didn’t know what I was supposed to do, I felt helpless. The deputy principal let me sit in the library for the rest of the afternoon.

Waiting for the text to arrive was torture. That next one informed me that Mum’s right lung had been transplanted and they were starting on the left lung. Just after midnight, I learnt that Mum was in recovery.

In the morning, my Grandma rang to tell me she had been to see Mum and everything was progressing well. In the afternoon Grant sent a text to say Mum was off the ventilator and breathing on her own.

On Sunday , when the phone rang I thought it was Grant with bad news. But it was Mum! She didn’t say much, but I instantly felt calmer. I could hear that she was no longer gasping for breath.

Despite this, I was still worried. I was used to Mum being sick, but this felt different. I didn’t know what to expect next, and I didn’t know what the warning signs would be.

I was booked to fly to Perth a few days after Mum left hospital. I’d been warned that because Mum’s immune system was weak it was really important that I was honest if I got sick. If Mum got sick at that stage would be dangerous, so if I had a cold or other symptoms I’d have to stay at Grandma’s house. I was paranoid that I was going to catch something, so I kept my distance from everyone.

The plane ride took forever. I knew Grant was going to pick me up while Mum stayed home (keeping infection risks to a minimum) and that as soon as I got home I would have to shower (plane germs) before I could see Mum. I thought not hugging her was going to be hard, but she waved at me from the lounge room and I could see straight away that everything was okay.

All my tension melted away.

Is your mum different post transplant?

A little different, it’s like the Mum I saw at home when I was younger, everyone else sees now too. As if this is who she was always meant to be, and her old lungs held her back – that she didn’t have enough energy to be herself around other people. Now she seems to have more energy, and she’s happier, and she talks a lot more now too – but she’s still my Mum.

Jarryn and Sandi - Scotland 2013

Jarryn and Sandi – Scotland 2013

Growing Up When Your Mum Has Cystic Fibrosis. Part 2

In Part 1, I mentioned my surprise that Jarryn had picked up on the significance of the word ‘hospital’ with regards to my Cystic Fibrosis and accepted my various treatments as just another part of life.

For me, the revelation in the second part of this interview was the extent of his compassion. I’ve always been aware that Jarryn had a compassionate nature as  he’d always been very patient and considerate of our elderly Gran, however, I was too close to see that his compassion also extended to me.

Did you notice anything different before your Mum told you she was going on the transplant list?

The first thing I noticed was that Mum had been doing IV’s for ages. She didn’t seem to be any better than before she had started them, then she went into hospital, which I knew she didn’t like, (the last time was three years ago when she’d had a bleed, she preferred to do all her treatments at home).

When she came home from hospital, she brought an oxygen concentrator with her. That had never happened before. Even though she only needed oxygen at night, it worried me. I also noticed that she didn’t seem to walk as fast as before and she was getting very puffy when she talked.

But what concerned me most is how Monkey (our dog) started being protective of Mum and following her around like a shadow. Monkey knew something was wrong.mum-and-monkey

How did you feel when your Mum told you she was going on the transplant list?

A mix of being both worried and relieved.

I was worried that she might die, but at the same time, I was relieved that there was something that could be done to make her better.

You moved to Sydney to live with your Dad a few months after your Mum was listed on the transplant list.
Was that a hard decision to make?
And what factored into your decision?

Mum told me that it didn’t matter if I stayed in Perth or if I moved to Sydney. Either she would be a match for a set of donated lungs or she wouldn’t. My physical location wasn’t going to change that outcome.

After that, I thought about all the things I was doing to help her, going to the shops and the library and I worried a bit how she would cope once I was gone. Then I realised how much she was still doing for me and I figured there would be less shopping and less for her to worry if she didn’t have to look after me. I knew it would be easier for Grant too, then he’d only have to worry about looking after Mum.

I also thought about when my Pop had died. We’d seen him a few weeks beforehand, but when the call came for us to go to the hospital to say goodbye, Mum decided not to go. She said she wanted to remember him the way he had been. I thought about that a lot and figured Mum would probably want me to remember her the way she was and not watch her getting sicker.

Once I’d thought about all these things, the decision to move over east to live with Dad was easy.
I knew it was the right thing to do.
But it was still hard to leave.

You came back for the next school holidays. How did you feel?

Mum was really sick. She was on oxygen all the time and she was also using the BiPap a lot. She could barely walk or talk. Monkey was super protective.
This time when I left I was really really worried.

And it was a lot harder to get on the plane at the end of the holidays.

with-mum-2011
Part 3 Covers Jaryn’s feeling on the day he received the phone call telling him I was going into surgery.