Today I updated my In Memoriam page, commemorating two friends who have died in the past nine months. It’s a page I always update with reluctance: my heart is heavy and I struggle to find words. It’s the one part of my website from which I gain no satisfaction in writing.
And yet before publishing the updated version, I took a moment to read through the tributes to the now seven people I know personally who have lost their lives while suffering from ME. Some were dearly loved friends; others less closely known but nonetheless a constant in my life. And what struck me as I read was the extraordinary courage that flowed through each of these lives to the very end.
Emily, Merryn, Alley, Anna, Kara, SJ and Sharon were not victims: they were handed lives of extreme pain and hardship, and they responded with a strength that almost defies comprehension. They all had times when their spirit was broken and they felt they could bear no more. They knew grief and fear on an overwhelming scale. They lost almost everything that they cherished, and then more. And yet through it all they found reasons to keep going. They wrung moments of promise from the bleakest of days, and lived as the very definition of courage.
As we approach ME Awareness Week (12th – 18th May) I, in common with many others, can summon little enthusiasm for “raising awareness”. There is a sense of futility in shouting into the void, and an unwillingness to confront a wider reality that rarely seems to change for the better. What I do feel, though, on re-reading the tributes to my friends, is a wish to acknowledge the courage that exists within our community. It is something that can easily be lost in the noise of awareness-raising, but which deserves to be recognised for the remarkable life force that it is.
And so, today, I honour the inner strength of us all. In addition to my friends who have lost their lives, I recognise those whose bodies have held on to life, but who have known often decades of intense suffering. Unseen by much of the world, they face their pain with resilience and determination. I never fail to be inspired by the tenacity of those who one might expect to be completely broken. There is such brightness of spirit among my many friends who often never even see the sunlight.
I also acknowledge those who, like me, can be considered relatively fortunate. Those of us who have seen improvements in our condition, but who now face the complexity of improvement after a lifetime of illness. There is immense privilege in beginning to taste life again when it had appeared lost forever, but it does not come without considerable struggles of its own. It takes courage to endure lengthy suffering; but it also takes courage to allow hope and joy back in when, unexpectedly, they reappear.
Special mention is also deserved for our loved ones, who witness all that we endure and carry it alongside their own pain. I’m particularly struck by the bravery shown by the parents of the friends I’ve lost. Their ability to face life after experiencing unimaginable loss is humbling. The strength of their children truly lives on in them.
It’s important to add that celebrating someone’s courage should never be seen as consolation for the suffering that demanded its existence in the first place. It’s possible to acknowledge extraordinary fortitude, while simultaneously railing against the fact that it was ever necessary.
If the wider world reads just one thing during ME Awareness Week, I hope it might be my memoriam page. For it stands as a tribute not only to those who have lost their lives, but also to all who go on, even when it seems impossible to do so.
Courage exists in the darkest of places: this is something that deserves to be known.
Image credits and descriptions:
Main image: A crescent moon in a starlit sky, over a snowy mountain. Benjamin Voros on Unsplash
Other image: A collage of photos showing, clockwise from top left, Emily Collingridge, Anna Fitzgerald-Clark, Merryn Crofts, SJ Lewis, Kara Spencer and Alley Briar Daley. Sharon is represented by a rose. Images courtesy of the families of the people named. Rose photo by Siora Photography on Unsplash.
A Life Hidden 