‘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!
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:
Sharing your life with someone whose every day is impacted by chronic illness can be rewarding – but it can also be extremely tough. It should come as no surprise that the most popular post on this site is ‘7 reasons why watching someone suffer is the worst’.
Watching is hard, and yet when it comes to surviving and thriving in long-term Watching, I think we often fall into 3 misconceptions.
3 misconceptions about Watching
1: Only people who are even-keeled, happy –go-lucky pragmatists can survive and thrive Watching over the long-term Watching. I’m not suited for this.
2: Watching is hard, and so I’m inevitably going to become cynical/bitter/depressed. It’s just a natural human response.
OR
3: When it gets hard, the Christian thing to do is ‘deal’ with it quickly, and move on. It’s not good to dwell on the difficulty.
Now there’s a certain modicum of truth in all of these. Some personalities might be ‘naturally’ better suited to watching; it’s understandable if you find yourself growing cynical or depressed; and it’s not particularly helpful to ruminate on your troubles.
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.
Did you know that it’s impossible not to have expectations?
Try it.
However vague, we always have some sense of what an event or a holiday or a job or a coffee-date will be like. Often, when we say we had “no expectations” what we really mean is we had “low expectations”.
Christmas and the holiday season bring a lot of expectations.
What comes to mind when you hear the word “Christmas”? Food, fun, community, isolation, stress – whatever connotations you have, they will form part of your expectation for the season.
The question startled me. It startled me so much that an answer burst from my mouth before I had time to think.
“No.”
My response startled me even more.
“Not as much as I used to,” I continued. As if an explanation would make that two-letter word more palatable. “Sometimes. But I mostly pray for her symptoms now.” A pause. “Do you think that’s wrong?”
“Perhaps God is strong enough to exult in monotony…
it may be that God makes every daisy separately,
but has never got tired of making them.” – G. K. Chesterton
There are 2 types of people. Those who celebrate EVERYTHING and those who wait for the really big, land-mark events before they break out the confetti.
I admit I am often one of the later. I don’t want to celebrate prematurely, I want to wait until I’m sure it’s something worthy of celebrating… and as a result, I don’t celebrate much at all!
The problem is life doesn’t always bundle achievements or seasons into boxes. There is often no neat, conclusive ‘end’.
This is especially true with Chronic illness. When you can’t celebrate healing or an ending, it can be difficult to celebrate at all.
And yet I think we are called to celebrate, even when there’s no miracle or no big event. Why? Well I could talk about being positive and practicing self-care and embracing your life and all the rather ‘in’ phrases at the moment…. but I want to give you more concrete reasons.
Contrary to popular belief, fairy godmothers are not trademarked by Disney. They do not always run around singing ‘bippity-boppity-boo!’ In fact, they may be closer than we expect…
A ‘fairy godmother’ is a type of character which charges into a dismal situation, waves their magic wand and fixes everything before disappearing in a cloud of fairy dust.
They exist outside of Cinderella – and in fact, are often viewed negatively by film critics. A ‘fairy godmother’, like a ‘deus ex machina’ can be a lazy way of resolving the characters’ problems and ensuring a happy ending by the two hour mark.
That said, how many of us would love a ‘fairy godmother’ in our own lives? A magic solution to all our stresses? Yes please!
Often as Watchers, we are tempted to try and fulfill the role of a ‘fairy godmother’ in our Loved One’s life.
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.
