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 God in Chronic Illness

As we’ve explored the topic of trust this year, we’ve talked about why trusting someone is one of the greatest gifts you can give them, and also how difficult it can be. We’ve also introduced the idea that when we place our trust in others, we are giving ourselves a chance to practice trusting in God. But that raises the question, why should we trust in God? This is an important question, particularly in the context of chronic illness, when we can be so often hurt and angry, and feel like God is far away and our prayers aren’t being answered.

Now I could throw a bunch of Bible verses at you, which say that God is a trustworthy God, and they would be both helpful and true. You could also look them up yourself with a quick google!

Continue reading “3 reasons to trust God in Chronic Illness”

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:

Continue reading “3 reasons to trust someone with chronic illness”

5 ways to make trust a habit in chronic illness

Trust. It’s one of the greatest gifts you can give someone, but it’s always costly because there’s never 100% certainty it will end well. 

So how do you make trusting your chronically ill friend a habit when there are times you really don’t want to, but you’ve asked yourself the questions and you think you should? Before we explore the answer, let’s brainstorm some scenarios, because trust is never abstract.

It’s hard to make trust a habit when…

Your chronically ill friend..

… is going through a rough patch and you know you should ask how they’ve tried to fix it, and what resources they’ve drawn upon – but really, you think that’s a waste of time since you know exactly what needs to be done. 

… wants to go with you to the party and say they’ll be fine – and you are almost positive they won’t be fine and you’ll end up having to leave early to take them home.

… tells you they’re feeling nauseous after eating carrots – and you think it’s all ‘in their head’ and want to roll your eyes every time they bring it up.

As different as these situations are, each prompts the question: will you choose to trust your friend, or will you trust in your own capabilities? You want to make trust a habit… but it’s just so hard. What do you?

How to make trust a habit

1. Ask yourself why you don’t want to

Making trust a habit is hard for all of us, and generally, it’s not something we instinctively choose. But what is it about this particular relationship or situation that you are finding so difficult? Sometimes our pragmatic reason (I’ll save my friend a lot of trouble if I just step in and fix it) is hiding a more subjective motivation (I like feeling in control).

If you’re having trouble trusting, try and voice the specific reason, and check for underlying motivations!

2. Alter your first reaction

It’s easy to get in the habit of cynicism, and assume everyone is lying, exaggerating or incapable of making a balanced decision. This sounds rather dangerous, but it can manifest in subtle ways: an incredulous ‘really?’ when someone tells you something you think unlikely; a quick scramble to find a different explanation when the one we’re given contradicts our assumptions; a disinclination to take someone’s story at face value. 

I’m not talking about wisdom vs. gullibility. I’m talking about when our first reaction is to disbelieve someone rather than listen to the end, or ask questions, or to give them the benefit of the doubt.

Sometimes trust is as simple as swapping the ‘Really?’ for a ‘Really? Tell me more.’

How to make trust a habit

3. Make a settled decision

This ties in with the point above. Most of us are not particularly good at trusting ‘off the cuff’. Perhaps, in one sense, that’s wise. But I think it’s important that we sit down and choose to make a settled decision to give as many people the gift of trust as possible.

Why? For me, it’s a way of honouring others as individuals, an exercise of trust in God, and because I want to live in a trusting world.

4. Give up regrets

For all of us there have been times when we trusted and it fell through. Perhaps the person chose to be untrustworthy, perhaps they couldn’t help it, perhaps circumstances outside of our control meant that our gift of trust spawned painful consequences. In light of that, it can be difficult to choose to make trust a habit.

I’m not saying it’s wise to keep trusting someone who has proved untrustworthy in high-stakes situations. I am saying that we can’t base our present decisions on past regrets. This situation is different because it’s here, now, not back then. When we give up trusting everyone and everything because we’ve been duped or disappointed, we hurt ourselves and those around us.  

5. Say no to self-protection as a number one priority

This demands explanation. It’s wise to look after ourselves. But that’s different to making self-protection a priority at all costs. When we make self-protection our number one priority, we refuse to trust in any situation which could lead to hurt or pain or discomfort. We might still be willing to trust, but only when we won’t bear the consequences, or, at the very least, won’t bear them alone. 

If we protect ourselves like this, we might live a less-painful life. But at what cost? The cost of deep relationships with others and with God, the cost of freedom and the cost of never experiencing the joy which comes from ‘bearing one another’s burdens’ and looking beyond ourselves.

A final word

Trust is hard and failure is common, but the good thing is that opportunities to trust come multiple times a day! It’s never too late to make trust a habit, and in the meantime, we have a good God who forgives us when we choose not to trust out of selfish motivations. He is always trustworthy and always ready to hear us when we need to talk things over.

// What can you do this week to make trust a habit?

Missed my Christmas Gift? To keep in the loop about my upcoming memoir, follow the link below!

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Are Trust and Chronic Illness really compatible?

‘I trust you.’ ‘I believe you.’ ‘Okay.’ Expressions of trust can seem simple, and can be a great gift to those who receive them. When we trust another person, we show respect, bolster confidence, and validate experience.

We are effectively saying, ‘I hear you, I believe you know what you’re talking about, and I am going to assume that you are capable and autonomous until proven otherwise.’ We are demonstrating a ‘firm belief in someone’s reliability, ability and truthfulness’ (thank you, Oxford Dictionary).

So far that sounds quite straightforward. 

Yet in the context of chronic illness, trust can often be accepting your chronically ill Loved One’s assessment of their capabilities, believing their description of the situation, and assuming they have valid ideas, dreams and motivations.

Still sound simple?

Continue reading “Are Trust and Chronic Illness really compatible?”

The beautiful gift of trust in chronic illness

‘Relationships are built on trust’ – that’s a phrase you hear often. But have you ever considered that trust might be more than a necessity? That it might actually be one of the greatest gifts you can give someone, particularly someone who is living with a chronic illness?

The Oxford dictionary defines trust as the ‘firm belief in the reliability, truth, or ability of someone or something.’

Think about that for a moment. With this definition in mind, how would you feel if someone said, ‘I trust you’? I’d feel pretty good. I’d feel recognized, validated and affirmed. I’d feel more confident in myself. I’d feel challenged to ‘keep up the good work’. All that from three words. 

Continue reading “The beautiful gift of trust in chronic illness”

Stepping into 2021 with trust

Welcome to 2021 my friends! 

What. A. Year. 2020. Was. 

I, like many of you, had made multiple plans… and they didn’t all come to fruition! I took a sabbatical from this blog, and also tried to take a sabbatical generally, but due to the wonders and the horrors which made up 2020, that didn’t quite happen. 

Due to Covid, I was more active on Called to Watch than the word ‘sabbatical’ might suggest! I was also published on several other online spaces, including Eternity News, Lupus Chick, Penetrating the Darkness and Chronic Joy (where you can now LISTEN to my posts!).  If you haven’t seen those articles, check them out!

What. A. Year. 2021. Will. Be.

It might be nice to dream of brushing 2020 under the carpet as we enter 2021 with hopeful hearts, determined to have a Better Year. I’m all for hope, but I suspect many of us will begin this year still processing what has happened and dealing with the changes in everyday and global life. That’s more than okay, and therefore this year on Called to Watch I want to focus on TRUST.

Continue reading “Stepping into 2021 with trust”

A Christmas gift to you, dear Readers

What. A. Year. It’s my prayer that you are all able to take some time over the holidays to reflect, grieve and rejoice over 2020. I am planning on doing so soon. But for now, let’s all take a deep breath, and celebrate!

I promised some exciting news before I left on my Sabbatical-Which-Didn’t-Happen. Now it’s time to deliver… and what better time than Christmas? My heart longs for my exciting news to be a gift to you all, dear readers and fellow Watchers. It has certainly been a gift to me. A gift of God’s kindness, a demonstration of his faithfulness.

For a while this year I wasn’t sure I’d even have this gift to offer you, so uncertain was life with COVID and other circumstances. But because of God’s goodness and generosity, I can – and so I pray you will join me in celebration.

Two Sisters and a Brain Tumour: My Christmas gift

What is this mysterious gift, I hear you ask? 

It’s this: Next year in August, my memoir, Two Sisters and a Brain Tumour will be published by Elephant House Press!

It is the story of my sister and I, the tumour which changed our lives, and the God who saved them. In 2015 my younger sister was diagnosed with a brain tumour, and my life was irretrievably altered. We went on a tumultuous journey together, and this is the story of that journey – the tears, the laughter, the crazy, quirky things which happen when you’re in hospital for 3 months, and the many kindnesses of friends, family, and strangers alike!

If you’re anything like me, you find ‘hospital stories’ rather depressing, and sometimes dry! I give you my word, I’ve done my best to make sure this story is anything but that. Rather than coming up with a list of ‘lessons learnt’ Two Sisters and a Brain Tumour is simply me opening up the window of our lives for three months, and inviting you along on the journey. 

I’ll be sharing snippets of the memoir on the blog up until publication, so here’s three little snippets from the first chapter as an early Christmas gift!

(mock cover)

Excerpts from Two Sisters and a Brain Tumour

A beginning

           You can read an x-ray and tell someone they’ve broken their wrist.

You can glance at a CT and tell someone they may have kidney stones.

You can’t study an MRI and tell someone they have a brain tumour.

Even if it’s true.

I haven’t quite finished my final year of radiography, but I still know this much.

**

A phone call

          ‘Jasmine had her MRI today. You know, the one the doctor -’

‘I know.’

‘Anyway, they gave us the printed out scan right then! All the pictures. Is that normal?’

I shrug out of habit. ‘I don’t know. So there’s no report yet?’

‘No just the pictures, and Emily, I think she has something.’

‘Has something? Has what?’ A brain? Unexpected, certainly, but hardly worth a phone call. I crane my neck. Or a missed bus.

‘I don’t know, I can’t read it properly. I just looked at the brain and there’s something there, and I thought you’d be able to read it. When are you home?’

**

A reassurance

               The back of the graffitied bus shelter rubs against the high wall of Rookwood Cemetery. It’s the largest burial ground in the southern hemisphere, according to Wikipedia. Ironic, really. A Health Science University campus, dedicated to saving lives, across the street from an overgrown, sprawling reminder of death.

Annoying little sisters don’t have ‘things in their brains’. The MRI will be normal.

I relax on the metal bench. It can’t possibly be otherwise…

*end excerpt*

Want to read more? For updates and more snippets throughout the year, add your email below. 

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Don’t worry, I won’t be flooding your inbox. Neither of us have time for that!

New monthly posts will begin again next year, and for now here are some of my reflections on Christmas, the New Year, and holidays in the context of chronic illness:

Christmas + Travel
New Year

May you have a refreshing and blessed Christmas. Thank you for Watching, and for joining me on the journey.

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