Back in November 2019, I was contacted by Gemma Everson. An author, wife, and mother, she had written a book – Supercharged Superhero – a story of her family coming to terms with M.E. The book was written for children but at the same time explained an illness, fraught with misconceptions, to adults too.
Gemma shared her story with me. Her husband Tom, a previously fit and well person, had been struck down by M.E. following a 1000-mile bike ride for the Royal Navy. The fatigue he experienced following this gruelling ride had only gotten worse, leaving him eventually bed-bound. At the time they had a newborn baby and a 3-year old. Gemma’s life was spent having to simultaneously care for both her husband and bring up the 2 children. Their 3-year old was increasingly concerned about “Daddy being ill” and Gemma knew she had to do something about this. She decided to change the narrative, find a way of explaining it, in the aim of bringing about acceptance of the “new normal”.
Before even reading Supercharged Superhero, I knew it was going to be the book that I, and families around the world, desperately needed. With a 2-year old myself, I knew I was going to need to explain my M.E. to her in the future. I knew there needed to be a book that explained it properly but didn’t terrify children. I knew there needed to be a book that combined both acceptance of the condition and joy of a new way of living.
I wasn’t disappointed. Supercharged Superhero was as beautiful as I hoped it would be.
The book starts with the introduction of Tom, the real-life superhero in Gemma’s family, and his adventures with his 3-year old. I smiled reading about their “rough and tumble”, bike rides, picnics in the park, knowing full well this was like reading my own story. Life pre-M.E. being full of energy, playing with one’s little ones, no activity being out of reach.
Then all of sudden in the story, life for both Tom and his family changes.
Tom goes to bed to recharge his “battery” like all of us do each evening. Except his battery didn’t charge. It stayed stubbornly on low. He tried again. Night after night, day-nap after day-nap, the battery refused to charge fully. His battery was broken.
This concept of a “broken battery” is well-used amongst the chronic illness community to describe life with M.E. but the way Gemma describes it is truly wonderful. She manages to expertly combine the reality of living with limited energy reserves, with the adventures of a superhero character. Combined with the illustrations of Hope Gwilliam and Becky Rawlins the story brings to life the experiences of so many.
Reading about Tom becoming bed-bound broke my heart more than any other book I’d read. I knew that feeling. I knew the feeling of desperately wanting to get up and play with your little one, spend time as a family but being truly unable to do so. I really and truly felt for the family.
And the bit that hit me the hardest? The bit that pulled on my heartstrings the most? The 3-year old’s attempt at making Daddy better: some batteries from her box, a magic wand, even extra portions of broccoli. None of which made any difference. This book was truly beautiful. I knew I had to say yes to Gemma to helping out in any way I could.
The end of the book really makes it come into its own. The 3-year old daughter suddenly realises that Daddy hasn’t gone anywhere after all. He still is the superhero she once knew and loved. Things are just a little different now. Days are planned out, things take their time, but most importantly, the daddy that the daughter always knew and loved, is still hers. A “partly-charged, fully-loved superhero”.
“So when we put on our hero capes,
We always have a chat,
Decide on one fun thing to do,
Before his battery runs flat.
This is my Superhero Daddy,
He likes to take his time.
He can do some things,
Always fun things
And he is forever mine.
He’s super-fun, super-cuddly,
And makes me burst with pride.
A partly-charged, fully-loved superhero,
Who will always be by my side.”
The book Supercharged Superhero is the book that the M.E. community so desperately needed and wanted from an author. Gemma has filled that hole so very brilliantly and for that, on behalf of the chronic illness community, I am eternally grateful.
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