Book review: Learning to Live in Smaller Spaces, Aging with Myalgic Encephalomyelitis. By Linda Crowhurst

I find aging with chronic illness to be a  very strange experience, especially when that chronic illness is the  much maligned, misunderstood, misinterpreted Myalgic Encephalomyelitis.

Large swaths of time disappear into an empty, nothing existence, where time appears to have stopped altogether, the only experience being pain and isolation from everyone and everything, even yourself, whilst at the same time, finding it has simultaneously jumped or leap- frogged over most major events without even a smile of recognition or suitable celebration.

No contact possible, the family gatherings mount up and fall over with neglect and you are no longer thought of or expected to participate.  Visits, become painfully impossible, dialogue then becomes one-sided. You have nothing to tell except excruciating agony and a disappeared life, so tiny by comparison that the normal person simply would not know how to exist within it, so small the experience, so inadequate the celebrations when seen from worldly view.

You try to cling on to who you were, to talk as if you know about things, as the years go by and they diminish into unreality, a life once lived becomes bizarrely unrecognisable to life lived now.

So many things lost. No social life. No children. No holidays. No careers. Little money. Little status. So many hopes and dreams let go of, not possible at first, still not possible 25 years on and so you learn to adjust, to see the world differently, to hope in goodness rather than specifics. You become disconnected from the outside. You are filled from the inside, if you are filled at all.

You learn to live in smaller spaces, in new ways, you focus on the moment, for any other moment beyond now is unpredictable, unreliable, uncontrollable. And when the next moment comes, it is still mostly empty of all possibility. And yet you carry on, holding on for better moments, new ways forward, hope an elusive star that shines, at intervals, to guide you forward.

There is a deep sadness about the passing of time, that cannot be comforted away, for it is lost, even to memory, for the mind-blanking spaces of paralysis destroy everything in sight.

And so the 25 years of our marriage – which should be and still are – an amazing celebration, have to be celebrated in a totally alien way to most.

For despite the horror, the torment, the despair, the torture experienced again and again, and all that living with Very Severe ME throws at us, still, for us at least, their is a solidity, a continuity, a flow of love, that beats all illness, that transcends all suffering, a constancy of commitment beyond the impossible, where most would have walked away and given up with the sheer impossibility of most moments, yet we have stayed together and amazingly continued to love each other, finding meaning within our lives, forging a way forward, despite the negation, the neglect, the downright harm done by some and the almost complete dearth of medical integrity that is required yet rarely found in this particularly medically ignored disease.

And so when it comes to our Silver Wedding, we look back together, unable to  share our celebration with others, unable to have a party, unable to go out to a pub or a restaurant or a cafe or to go anywhere at all, to have a special meal.

Yet we hold on to each other on that most special of days and we find a depth of meaning in the simplest things that we have shared together – moments when we have clung on and survived the most desperate of experiences.

So many memories of beloved garden birds who have become our friends; the robins, the doves, the blue tits, the great tits and the blackbirds, who have graced our lives down many years, so many precious moments with our two much loved Corgis, one now sadly gone, greatly missed, both who have loved us and blessed us beyond imagining, awards won, videos made showing the truth of this devastating neurological disease, proud as anything of all the numerous things Greg has done for us all down the years, especially speaking up at the Gibson Inquiry in Parliament, publishing books, articles, creating websites, developing the MOMENT Approach, to try and keep people safe, always committed to truth and integrity – no small feat as an unwaged carer, caring for his tortured wife.

We feel proud of all the things we have had to fight for and all the times we have won.

Our hearts shine when we look at our garden, grown from nothing, one plant at a time, over many years, when we think of the huge pleasure, from the smallest thing: seeing a ladybird snuggling in a Hollyhock bud, holding our breath while a baby robin jumped on my foot, feeling the wind in my face, easing the never-ending pain for one tiny moment, no centimeter of my body, pain-free, focusing on the pure, elegant beauty, of a single rose, opening to the bluest sky above it, waiting, then finally seeing the tiny sheaths of grass emerging as they push through the soil, growing our own lawn from scratch.

The triumph of Greg baking me a sugar-free, dairy-free, hydrolysed oil-free, amazingly delicious, gluten-free cake,  a hand held, a look of love, a candle lit every year at 3pm, a prayer said; all these things are a great strength, holding me against unimaginable pain, so many intolerable moments held in love, triumphing purely because of that love.

A marriage vow stronger than iron. That indeed is something incredible to celebrate!