Let me introduce someone to you: Gemma Everson is the author of Supercharged Superhero, a story she wrote for her daughter to help her navigate through the emotions and eventual acceptance of her dad’s chronic illness. It’s a wonderful book that uses poetry and cute illustrations to help a child understand what it’s like for a parent to have M.E.
This is a story not just for families like hers but for everyone: it’s ideal for building empathy for any child in understanding chronic illness and disability, and how we all have magical powers even when hard times come. I wish this book had been around when my boy was smaller, and I hope people spread the word about it because it deserves to be widely known. Now that most of us are in lockdown, this is even more relevant.
Gemma’s story is that her husband, Tom, became suddenly ill in Summer 2017 following a Land’s End to John O’Groats bike ride. This was shortly after their second daughter was born, and their eldest daughter was just 3. He spent many months isolated from the family, fatigued by the smallest of tasks that left him bed-bound for days on end. As a member of the Royal Navy, Tom was sent to a Naval Recovery Centre where a diagnosis of M.E (myalgic encephalomyelitis) was eventually given.
Throughout this time, their eldest daughter was struggling to come to terms with this new version of her dad and after one particularly difficult week of saying “Daddy is ill/poorly/sick”, Gemma realised she needed to give her daughter a new narrative which would enable her to understand what was happening. That is when ‘Supercharged Superhero’ was born.
I’m thrilled to have her here on the blog sharing three lessons she’s learnt through caring for someone with chronic illness.
1. Chronic illness is isolating.
Not only for the person involved but for other members of the family too.
When Tom was first ill I remember the overwhelming sense that M.E was not something that people understood or could relate to. I remember a friend of mine saying “Oh I know how he feels, I’m always so tired!” which really cut deep at the time. The symptoms that Tom was experiencing were so much more than just tiredness. I was desperate to connect with people who knew what we were going through. That was hard but I am so fortunate that God has given me people in my life who are either living with chronic illness or living with someone with chronic illness. These people have been and continue to be such a support to us.
Isolation comes in other forms too. Family outings, meetups with friends suddenly became about just me and the girls. Many of our friends understood that Tom couldn’t manage a full-on day out but it didn’t stop us both feeling like ‘flakey’ friends – letting our nearest and dearest down time after time. Tom not being there became the norm for them and our daughter.
2. Self-care is key.
When Tom first became ill, our second daughter was just weeks old. I developed anxiety which was partly post-natal and irrational but there was also a very real anxiety that was a direct response to the situation we found ourselves in. The future seemed so uncertain as we grappled for a diagnosis and learned that no cure for M.E existed. Life was turned upside down and although only young, our eldest daughter definitely knew something wasn’t right.
I was trying to be everything to everyone at that point and a few months in I started to break at the seams. It was at this point I received some counselling and was advised to find opportunities for ‘me time’. Easier said than done with two small children and an ill husband, but God stepped in and I found myself on an Alpha course which gave me the space to think and pray about our situation.
It took months and lots of tears, but with the help of my family, friends, church and God I built myself back up. A big part of this was prayer and gratitude as well as Bible journaling and writing. I have periods of time, like everyone, where my focus can slip and life gets in the way and I really notice a shift in my attitude and thinking.
3. Learn to adjust.
“Things are just a bit different now,
That doesn’t mean I should be sad.
Time together’s more precious than ever,
Slowing down’s not really so bad.
We get to enjoy the little things,
The bits we used to miss.
When we were always rushing round,
Doing that and this!”
A quote direct from my story which is speaking to me so much at the moment as we sit in isolation during the Covid-19 pandemic. The whole world is having to stop and rethink their way of life.
Today I sat with our daughter who is now 5 and she asked me a million questions about the Covid-19 situation: When can I go back to school? When will they find a medicine? Will we be ok?
I didn’t know the answers so instead talked to her about what we could do instead of school, how we could still talk to her grandparents and friends. I talked about fun activities we could do at home and in the garden, online workouts, video chats and lots of special time with her family.
As the words poured out of my mouth it seemed so familiar as I remembered another bedtime conversation almost three years ago: When will Daddy get better? Will medicine make Daddy better? Is Daddy going to be ok? Questions I didn’t know how to answer sufficiently so instead reminded her of the things her Daddy could still do and the love he had for her regardless of how much energy he had in his battery.
The key to our daughter accepting her Dad’s condition was acceptance and adjustment. Children are so adaptable, more so than us adults and as soon as she got the language and tools she needed to move forward with this new version of her dad things became so much better. Where they had once rolled around the living room floor for hours at a time, they now read books together, play games and sometimes simply just sit and enjoy each other’s company. It sounds simple, but I look at some ‘able’ families as they rush around at weekends trying to fit in so much and I realise what a gift it is to just be still together. A gift that hopefully many will come to realise in the coming weeks or months.
Supercharged Superhero is out now, with options for buying signed copies here.
To follow Gemma Everson’s writing, check out her website.