Supporting the chronically ill, living life and finding hope
Author: Emily J. M.
Hi, I'm Emily. Two of my closest family members struggle with chronic illness, and I watch them. That's hard, and so I write about life as a 'Watcher', what it looks like to support them and find Hope.
‘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.
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!
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.
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!
Excerpts from Two Sisters and a Brain Tumour
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 -’
‘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?’
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…
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.
Did you know that it’s impossible not to have expectations?
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.
“There are people willing to be with you during the dark times.” May this interview be an encouragement that there are others out there too, struggling to love and seeking to give, all the while figuring out what it looks like to do exactly that.
It’s time… for the first interview with another watcher!
The blog series Another Watcher’s Story is a compilation of interviews with other people just like us who are in a relationship with someone suffering from a chronic illness: mental or physical. They may or may not be in an ‘official’ caregiving role, but they have a unique tale to tell.
1. How does your husband’s illness impact his life?
He is always in pain to some extent. It limits his ability to join in some family activities, but not too many.
2. What has been the hardest part of Watching them?
The way it has taken so much of his energy and focus away from other things. He is using it for the glory of God and so I am proud of him. He is, however, focused on things many people in the 40’s do not have to even think about.
3. How has this impacted you?
I have had to adjust my expectations. We are still working out how this affects our relationship and our family.
4. What have you learnt as a result of this relationship?
To be more supportive. To realize that he has limitations and I have to respect those.
5. How has God been present in this relationship?
Every step of the way. We both acknowledge His hand is how we found out about his disease. We believe he has lead David to start the Broken and Mended ministry.
6. Have you seen any fruits or purpose for their suffering so far?
We see how he and I can relate to others who are suffering.
7. What does Jesus mean to you? What aspect of his character has impacted you the most?
Jesus is my rock. I can not imagine going through any of life’s difficulties without him. I know that he understands each hurt and disappointment. I trust him with my future and know he will bring any good possible from this situation.
8. What’s the best piece of advice or encouragement someone has given you? How have they shown they love you?
Early on we had friends who would help out with the kids in order for me to be with David for doctor appointments and surgeries. It is wonderful to have a network around you to help manage life that cannot stop when you need it to.
9. What piece of encouragement would you give someone in a similar situation to your own?
There are people willing to be with you during the dark times. You do not have to pretend that you are okay with what you are facing. Lean on God for strength.
// Are you a Watcher? If so I’d love to hear from you. Please don’t think your story isn’t exciting enough, or your loved one’s affliction not devastating enough! There are no wrong answers! Contact me at email@example.com to be part of this series (you can remain anonymous!)