3 reasons I wrote a memoir about chronic illness and caregiving

Last month, my memoir Two Sisters & a Brain Tumour was published! If you haven’t had a chance to get a copy, try the links below. In the wake of the launch and the post-publication buzz, I’ve been reflecting on the reasons I chose to wrote a memoir about such a vulnerable and difficult time in my life.

‘Sibling relationships are always part-joy, part-frustration, but throw a brain tumour into the mix and the rules for sibling engagement must be completely renegotiated. Emily’s recollections are simultaneously beautiful, amusing, tear-jerking, and wonderfully uplifting. You cannot read this book without being touched.’

Dr Louise Gosbell

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The reality is, some words are bigger than other words. In 2015 the words ‘brain tumour’ loomed very big indeed. As a teenager I prayed two prayers about my younger sister. I’d prayed for her salvation, and I’d prayed for her friendship. I never expected God to answer them with a medical diagnosis requiring immediate surgery.

I was twenty-one, a radiography degree almost behind me, my entire life ahead of me – and all it took were those two words to change my world forever. For Christians Romans 8:28 – God works all things for good for those who love him – is often a deep comfort. As someone who’d grown up with a chronically ill mother, I’d hated that verse. In every reading it seemed to mock me, because I could not see the good – only the constant pain, tiredness, isolation. Yet when my sister was diagnosed I took hold of it with both hands – it was all I had left – and began a relentless search for ‘the good’.

ONE: I wrote Two Sisters because I wanted to capture the messy side of faith.

Ten surgeries, three months in hospital, life-long complications… and at every turn, with tears and fury and doubt, I hunted desperately for evidence of God working. We often speak of faith as a quiet assurance, a joyful confidence. I had none of that. What I did have (by God’s grace) was a dogged refusal to accept that the overwhelming darkness meant that God was not working. Sometimes, this is what faith looks like. 

TWO: I wrote Two Sisters because I wanted to testify to God’s presence in the forgotten pockets of ordinary living.

The diagnosis of a brain tumour comes in an instant, an irreversible bolt of lightning, but it’s lived out hour by hour, day after day. While my memoir is certainly about ‘big things’ – brain tumours, chronic illness, sisterhood – it’s also, very consciously, about the small niches of everyday life. This is where the battles of faith are fought – in the car on the way to the hospital; on an empty seat at the back of church; in front of a public bubbler. God works in minutes, and therefore minutes are important.  

Two Sisters and a Brain Tumour

THREE: I wrote Two Sisters because I wanted to explore what it looks like to love and be loved in times of illness.

Tragedy brings people together, but it also isolates. During those three months I felt too seen, but never known. For good and obvious reasons my sister and my family were frequent topics of conversation in my church community. People were kind and generous. Yet at the same time I felt separated from the lives of others by my sister’s diagnosis. My priorities, hopes, and dreams had been changed in an instant. I didn’t know who I was anymore, so how could I expect to be known?

Two Sisters and a Brain Tumour is the story of two sisters, and how God saved them through a brain tumour. It contains miracles, both ordinary and extraordinary. Yet it’s also an ode to steadfast faith, because God is faithful, and an encouragement to godly living in unseen moments, because God is there. Most of all it’s a plea to reach out your hands to others and to take hold of the hands reached out to you, to love and to be loved, because God has given us other people.

Sometimes, in the case of my sister, he even gives them back to us, and graciously offers a second chance. 

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Two Sisters & a Brain Tumour (launch date!)

In exactly ten days (as I write this!) the culmination of three years of work, ten years of writing seriously, and many, many hours of dreams, years and prayers, will be launched out into the wild.

That’s right! From August 28, 2021, you can be holding a copy of my memoir, Two Sisters and a Brain Tumour, in your hands.

Thrilled doesn’t even begin to describe how I feel – and I hope you’re getting excited too! To tide us all over until the launch, I’ve been posting a series of articles on my author website. They answer common questions, like:

Why did I write a memoir?

What books influenced my memoir?

What does my sister think about my memoir?

My plea to you

As the publication date for Two Sisters comes closer, I’m beginning to realise how inadequate my memoir is. As a depiction of Watching, it’s painfully limited. It’s one person’s story, in one time, in one place. That doesn’t mean it’s redundant, but it does mean we need more. We need more well-written, engaging stories of our life as Watchers. We need more tales of tragedy and patience, joy and persistence. We need your stories, all of them, every single one of them! They might not all be published, but they all need to be told. In telling we confer a value onto our experiences, a value which they already hold in God’s eyes. Our lives are the materials with which he works.

Not only so, but stories create community, and community breathes hope. Loneliness is so often not the absence of people, but the absence of people with stories like your own. Every time you share your story to someone new, even if that story is two sentences long in a queue at the shops, there’s a chance you might change a life. We are all people who need to hear stories, who need to hear that we are not alone.

two sisters and a brain tumour

For this reason, it’s important that we think about our stories. We can’t tell them well, or share them helpfully if we bottle up our reactions and sweep away our experiences. On the other hand, a story pondered in the presence of God, is a story which has the chance to change the world for the better.

A few years ago I wrote an essay in answer to the question: Why Do I Write? I’ve included part of it below, because in the lead up to the launch of Two Sisters it remains as true as ever.

Why do I write?

When I come across a story like this, it changes my life just a little. Truth does that. Now, as I look back through the years, I see these novels [which changed my life] as one sees water drops sparkling in the twilight.

And so I write.

I struggle across the calendar pages, bearing this desire [to write] over my back, my own paper cross, a part of me which cannot be exorcised. Each year the numbered pages turn quicker and I fight harder to weave the stories I never got to read.

Not because I am confident I can, but because I have to try.

For I do not want them [life-changing stores] to be rare gems but common ones. Garden variety, preferably. When I close my eyes for a breath and still my aching fingers, I see people reading books and re-learning how to love and respond to others. I see communities sitting down and chewing over chapters and laughing as they cry, understanding that pain and loss are something we must talk about.

I see another thirteen year old, embarking on a quest, like all girls becoming women do, but her search is different to mine.

She is not hunting for my holy grail, she had no need to. Mine is splashed across the people and pages around her, ripe for the picking, glittering as a jewel.

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Two Sisters & a Brain Tumour (my memoir on Watching)

For those of you who have been with this website since it started – way back here in 2016! – you’ll know that I occasionally share snippets of my life as a Watcher. I’ve filed these posts under the tag: Love in a Time of Chronic Illness:

I’m very excited to announce, however, that the time has come for something more than snippets! NEXT MONTH my memoir, Two Sisters and a Brain Tumour, will be published by D.O.L.L, an independent publisher of Christian women’s literature. Getting to this point has been a 3+ year journey, so I’m thrilled the launch date is coming at last!

Continue reading “Two Sisters & a Brain Tumour (my memoir on Watching)”

3 reasons to trust someone with chronic illness

Trust. It’s often the bedrock of relationships, and the greatest gift you can give some one. Yet so often it can be a costly gift, particularly in the context of chronic illness. Our pride or past experiences can get in the way.

Today I want to affirm that the benefits of trust almost always outweigh the costs! So, without further ado… here’s 3 (more) reasons to trust your chronically ill friend…

[If you want to understand how trust can sometimes look different in the context of chronic illness, read more here]

3 reasons to trust your chronically ill friend:

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Why you need to seek something more than peace

What’s your goal in troubled times? As much as we’re often told that it’s okay to simply survive, most of us, if we’re completely honest, want more than that. 

We want to turn something bad into something good. Something worthwhile. Maybe even something precious. There’s a reason so many cancer tragedies end in the formation of an organisation or charity. There’s a reason we prefer tales of people who have overcome illness, rather than the much more common stories of being overcome.

Christians talk a lot about peace. So much so that it’s easy to feel like you’re doing something wrong it you’re not an unflappable yogi during trials. 

Continue reading “Why you need to seek something more than peace”

Why small talk is so important in chronic illness (& why I neglect it!)

A while ago I read a fascinating article about phatic communication, or ‘small talk’. Phatic communication is speech which serves a purpose other than that implied by the words used. An example would be the question, “how are you?”

What this question is actually asking is, “how are you physically/mentally?” Yet how many of us actually answer this? And why don’t we?

It’s not because we’re being rude or ignoring the question. In fact, often askers are surprised when someone lists their current physical health in response! It’s because we understand that in our social context the question is often merely a greeting, a social nicety which has to be used before the ‘proper’ conversation can begin.

An example of phatic communication (small talk!)

Often when I run I call out a (breathless) ‘hi!’ or ‘good evening/morning!’ as I pass someone by. About 3 times out of ten, someone will reply. Out of that 30%, at least half reply with ‘good thanks’ or ‘I’m well thanks’ – despite the fact that I never asked if they were!

This is because they are so used to ‘how are you’ being part of ‘hello’ and other social niceties (or nonenties!) that they assume I’ve asked and thus reply automatically.

Continue reading “Why small talk is so important in chronic illness (& why I neglect it!)”

3 places not to place your hope in during chronic illness (and one place you need to!)

In every day life, most of us depend on our health – for the future, for happiness, for security. When your health or the health of a loved one is ripped away because of chronic illness, it’s easy to be left despondent.

After that awful, sinking feeling of having the foundation of your life pulled out from underneath your feet, our natural response it often to quickly rebuild.

We hunt desperately for a new foundation, a new hope. But what will it be? Sometimes it’s easy to break our hope into little bits and place it in different baskets.

3 places not to place your hope in during chronic illness

ONE: Medical Intervention

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Why you should widen your perspective (and how)

“There are more things in heaven and earth… than are dreamt of in your philosophy.” – Hamlet

We live in a big world. It’s 40 thousand kilometres wide, with 7.5 billion people. There are 2 thousand types of jellyfish and 3 thousand varieties of pears.

How often do you stop to ponder the universe?

If you are a Watcher or a Caregiver, sometimes the world does not feel that big. Our hours and thoughts are occupied with one person. Our daily routines may not take us particularly ‘far afield’. Life, which in reality is BIG, can feel (and be!) very small.

Oh no, you may protest. I don’t live in a bubble! I watch TV. I listen to the radio. I get the news on my phone.

That’s good… but it’s not the same as genuinely experiencing the world first-hand, is it? Media such as TVs, newspapers etc. can give us a sense of the “busyness” of the world, or the “angst” of the world – but do they really help us understand the “bigness” of the universe?

I don’t have time, you may counter. “Experiencing the world” (whatever that means) is a luxury I can’t afford. That’s for other more fortunate people.

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How chronic illness changes your perspective of home (and what to do about it)

Home is where your heart is. Your home is your castle. Home away from home. Home sweet home…. the sayings go on.

We assume home is a safe haven, a place of refuge and rest. Yet when chronic illness is involved, even our understanding of ‘home’ gets complicated.

“Is home a place of rest for you, if your Mum is ill all the time and you never know how she’ll be?”

A long time ago, somebody asked me this question. I was indignant. As a teenager, my thoughts ran like this: Are you suggesting that I come from an unhappy home? Firstly, it’s none of your business, and secondly I have a good family and a good home –

The truth is, I did (and do) come from a “happy home”. Yet the question made such an impact on me that I remember it all these years later, because it was something I’d never thought of before:

How does chronic illness in the family affect the definition of ‘home’?

Or, to be more personal: how does your family member’s struggle with chronic illness affect your home life?

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Why you should attend your loved one’s doctor’s appointment (and how to be prepared)

A while ago someone I know was diagnosed with a chronic illness. After the initial diagnosis, she had to make an appointment to see yet another doctor. Before this appointment, I was chatting with her daughter and realised something rather abruptly: there is an art to accompanying someone to the doctor.

I’ve been to many doctors’ appointments in my life, both for myself and others. I’m neither proud nor ashamed of this, but I AM used to them.

And perhaps, not everyone is.

As a Watcher, a doctor’s appointment raises several questions: If it’s not for us, should we go? Is it important that we be there? What is our role? Are there reasons we shouldn’t attend?

Every situation is different and so is every person. I don’t think there are right or wrong answers, but I also think we can be a valuable asset at a doctor’s or specialist’s appointment. Here’s why:

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