‘I can’t do anything. I can’t leave the house. I can’t keep my plans… I’m useless.’
‘I’m useless.’ Who hasn’t felt that way sometimes? Often our Loved Ones with chronic illness, who can’t always do what other people can, can feel this more obviously. They may not use the words ‘I’m useless’ but if you listen carefully to their frustrations and yearnings you may hear it all the same.
‘I’m useless.’
How can we respond when someone feels this way in the context of Chronic Illness?
This is the first post in the series Responding to Misconceptions in Chronic Illness. Each one will begin with a statement about chronic illness such as, ‘I’m all alone’ and follow with a ‘letter’ from a Watcher in response. So without further ado, let’s begin!
Just as in previous years, what follows is the posts which received the most views in 2022. Have a look, you might encounter an ‘oldie but a goodie’ for the first time, or, like me, be reminded of posts you’d entirely forgotten about!
But first I want to introduce this year’s post series:
Responding to Misconceptions in Chronic Illness
As a Watcher, you might have heard your chronically ill loved one voice a sentiment along the lines of:
‘I’m no use to anyone’ or, ‘I can’t serve God like this’ or ‘I’m all alone, no one really understands.’
As a Watcher, everything in us often wants to cry, ‘no! That’s not true!’ — but is that best response? What do we do when our loved one keeps voicing these beliefs? Is a response even possible? Ought we protest each time? Are our responses even helpful? After all, we’re not the ones whose every day is impacted and restrained by poor health.
This year we will be exploring these questions and more, in a series of articles formatted as letters. Each one will begin with a statement about chronic illness such as, ‘I’m all alone’ and follow with a ‘letter’ from a Watcher in response.
One thing that may have stood out to you by now is that these ‘misconceptions’ are not the sole possession of our chronically ill friends! I’m sure all of us have thought them at times. For various reasons we’ve felt incapable, handicapped or restrained by various life situations, and thoughts like these slip out so easily. And so it’s important that we spend some time mulling over them in the presence of God, and ask ourselves whether they hold any truth and how exactly we ought to respond. I’m excited for this journey, even as I suspect it will be a challenging one for us all, me included.
But before we begin this series (a new article will be posted every two months) I have the pleasure of introducing the top pots of 2022!
As has this one! I quote: “Some things in life are opposites. They can’t coexist because they cancel each other out. Fire & Water. Tiny & Huge. Sometimes I am tempted to add ‘Sickness & Christianity’ to this list.”
These post are only a tiny selection of all the articles available on the Called to Watch website. Feeling bored? Navigate to the ‘all posts’ section and find more ‘oldies but goodies’!
// What was YOUR favourite post last year? Did it make the list?
How is Watching going for you? Are you in a season of relative peace or does it feel like troubles are knocking at your door and crowding out your view of Jesus?
Whichever it is, (and maybe it’s both!) I’ve been doing a bit of thinking lately about the most important reminders for our Watching journey. The theme of Called to Watch this year is Watching for the Long Haul, and so far we’ve reflected on:
But if there were two things I could always have at the forefront of my mind as I Watch, two things which would make a real difference to the way I Watch and equip me for the long haul, it would be these:
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.’
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.
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.
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:
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.
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.
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 questionsand 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 reactionis 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.’
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!
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.
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:
Many of us are probably well acquainted with this idea. A tiny niggling pain, a doctor’s visit, a diagnosis – and suddenly, nothing will ever be the same again.
We constantly live on the edge of this uncertainty. All of us – every day, every minute.
Covid19 and chronic illness
For as long as I can remember I have known I will not have my mum forever, and yet that split second phone call during my lunch break at work when I heard she had a mass in her pancreas still changed everything.
For as long as I can remember I’ve devoured books where dramatic things happen. Kids die too young; people are wounded in battle; last minute inheritances save the day; all is lost and all is rescued over and pver again. Yet I still remember exactly where I was when I found out that my ten year old friend had died suddenly from an undiagnosed brain tumour.
Likewise, I suspect that while many of us may “know” the speed with which reality can be remade, these past few weeks of of COVID-19 have also come as a bit of shock. No one really expects a pandemic. Not many people imagine that soon their actions – perhaps already severely curtailed by disease or circumstance – will be hedged further by governments seeking to prevent disaster.
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.
It’s the end of the year… again. Each year seems to go by quicker than the last, doesn’t it? We joke about it, but sometimes it can be disheartening.
We can feel like nothing has really changed and we’re caught in an endless loop. Over and over again – Christmas, New Year, Easter, a birthday: one year older, work, holiday, another year gone by –
Life can seem like on unending circuit, particularly if you (or your loved one) have a chronic illness. This is because:
