On Grief, Joy, Loss and Hope

There’s a bin bag full of high-heels in the boot of my car.  They’re the first to fall, the first goodbye, the first little chip away at what would, if it weren’t for MS, otherwise still be a part of my identity.  The first casualty of my progressive illness.  The first real, tangible; “I am no longer able to”.  I wonder how many more reluctant goodbyes I’ll have to say over the years to come.

It could be worse, I know.  Stilettos aren’t exactly up there on the “things I can’t live without” list.  Cry me a river, right?  As far as grief goes, shoes aren’t a difficult loss; but when it comes to my MS journey, they’re the hardest loss yet.  And here’s why;

I can still remember my first pair of heels.  I think I was about 10 or 11, and my mum (I imagine at my stubborn request) had bought me a chunky-heeled, diamanté-adorned Marks and Spencer’s pair (think “my first heels: Early Learning Centre meets Barbie” and you’re probably along the right lines).  I can remember strutting up and down in front of the full-length mirror in my parents’ bedroom, socks still on underneath the strappy sandal-shoes, watching the way my feet moved in total and utter awe, probably imagining I was a busy London executive on her way to important business-come-artist meetings. I had strange yet precise ambitions for my future self at that age – most of them stemming from a woman I once saw leaving a London art gallery in a swishy satin skirt and glorious high-heels, purposefully tapping away on her Nokia. She was everything I wanted to be.

Fast forward seven or eight years, and wearing heels still made me feel good.  They made me feel confident, powerful, attractive – one step closer to that satin-skirt wearing London exec.  High heels are an armour, and a statement, and a childhood dream realised.  But for me they were more than that.  For me they were a symbol of hope, and health.  A 6-inch “fuck you” to multiple sclerosis.  They were freedom to choose, they were autonomy over a body that is out of my control.  Every night I spent cutting shapes on the club-floor, my feet hot and throbbing in ridiculous heels, every morning I spent massaging my toes after tottering the 3 miles home from town – they were all little ‘wins’ over MS, they were all little reminders that I was doing OK, they were all little moments of hope that I might always be doing OK.

Now, with my high-heels shrouded in black plastic, waiting for the charity shops to re-open so that they might find new homes, I’m grieving for that little girl in her diamanté sandals and pink socks, and for the woman she so desperately thought she wanted to be but never will.  It’s not the loss of the shoes themselves (I’m not quite that materialistic and I’ve kept one pair for sentimental reasons), it’s what that loss symbolises.  It’s the finality of the realisation that my mobility has declined.  It’s the first choice about my body, my attire, my identity, that has been taken away from me.  I will never take my mobility, my freedom, or my body autonomy for granted again.  With loss has come perspective.  And with perspective comes joy, and hope.

Have you ever been in complete and utter awestruck amazement at your own strength? A strength that was half-expected, yet half-surprising, and left you momentarily feeling a bit like The Incredible Hulk?  A strength that gives you a little buzz, a rush of adrenaline, and leaves you grinning like a triumphant Cheshire cat?

I felt like that today after I climbed a flight of steps on my lockdown walk.  I actually laughed out loud when I reached the top.  I may have appeared like I was on the verge of an emotional breakdown, but I bet none of the slightly concerned-looking witnesses have ever experienced a joy so pure, so heartening, so satisfying, so full of hope, as the joy I feel when I merely summit stairs.  I bet my rush was greater even than that of the people who had claimed said flight of steps as their own personal gym – I wanted to tell them as they ran repeatedly up, down, up and down; “appreciate that!”  I sure as hell appreciate my laboured ascent.

I have been forced to slow down, but now I can smell the roses, and that brings me so much joy.  I have learned to see the hope in life, in the smallest things – like climbing a flight of concrete steps.  Next stop; Nevis.

Nothing teaches you to cling to hope like living with a progressive condition.

Nothing brings you happiness like the joy of movement, when you start to lose it.