If I could be grateful for one thing about having epilepsy, it would be that it makes me feel so much simple joy, so acutely. More, possibly, than other people seem to feel.
And for me, the joy of outdoors is paramount. I absolutely love being outside. I love walking, I love cycling. I love gardening and picking fruit. I love looking for birds and beasts and beetles . I even love swimming in the sea, cold and gritty and sploshy as it is on the East coast of England. And I can’t help noticing that the more I exercise outside the better I feel.
MsF is the same. Often a floppy, passive, pallid, ictal blinking creature under artificial light, she revives, like wilting flowers in a bowl of water, if given the support of exercise in fresh air. She is bright eyed, she is pink cheeked, she strides, she talks, she notices things in a way she often doesn’t at home.
The Great Outdoors – the undiscovered anti-epileptic?
Some days – particularly the dark days when she spends hours tiptoeing along the edge of seizure and can’t get off – we have the stark choice of sitting at home, or braving the possibility of problems and getting out. We always plump for the latter- and it has never – ever- ever- been a wrong call. Whether it was snow or sun, storm or shower.
Some of this is – I’m sure – due to the light-sensitive nature of her (our) epilepsy. MsF is always better outside rather than inside, whatever the weather.
Some of it is due to endorphins and what I might call the Fotherington-tomas therapy (Hello clouds, hello sky!).
Some of it’s due to simple delight.
In many ways MSF (and I) have been unlucky. However we are also very very lucky: we are able to walk, we know we can walk, we’re not afraid to walk, and we love to walk. Not that walking is as easy as it sounds for MsF. She is damaged by all these years of uncontrolled seizures: one leg, arm and shoulder are in fairly permanent pain and need braces and slings. She often has additional bruising to joints and spine. She may walk with a limp. She may hobble. She may have to adjust a caliper periodically, or bite her lip when climbing a stile. But she is dauntless
She is, I think, lucky to have a carer who supports her to be so active despite these problems. Many people look at the MsF’s of this world and tell them to sit down safely, so they will not be hurt . It’s a big temptation for a carer.. But it’s not what MsF wants for herself. She often tells me she is glad I enable her to ‘have a life.’
And I, as her carer, am immeasurably lucky to look after someone who is not prevented from activity by the level of their disability, nor by disinclination or grumpiness.
“Cribb’d, cabin’d and confin’d”
O it can be an enclosing, diminishing, desperately claustrophobic business living with a disability . Or as a fulltime carer.
I realise that my life is made golden by a mixture of great good fortune – and the generous spirit and lack of horizons that MsF places around herself – that allows us to enjoy so fully the glories of an English springtime.
One day at a time.