I try to stay positive, really I do. And most of the time I manage it. ‘Life is good, just different’ is one of the many throwaway lines I have to describe my (our) weird existence outside the normal. We still have fun, we still laugh, we still seek out special experiences and try to give the children adventures and giggles. Mrs W works especially hard on that front, selflessly supported by our local beaches and Domino’s Pizza deliveries.
I know I have a chronic, incurable disease that is usually progressive, and certainly is with me. After all, I’ve moved from diagnosis of an invisible illness 11 years ago, to a lurching left foot six or seven years ago, (I looked drunk basically, and mostly I wasn’t). Onto a walking stick, then a crutch and briefly two crutches. Speedily onto a wheelchair, though still ambling round the house with a stylish granny walker. A bit like a zombie but better dressed. And any day now I’m taking delivery of a powered wheelchair. A funky one at least. It’s got a gorgeous red seat ladies…
I know too that the illness will almost certainly progress further. I just don’t know how fast it will go, how bad it will get, or indeed what bizarre new symptoms I’ll have to experience down the line. My neurologists don’t either. Nobody does.That’s all part of the scary deal with multiple sclerosis, and through years of experience, a heap of counselling and the odd wobbly patch – mentally and physically – I’m generally acclimatised to the painful, exhausting and sometimes degrading future I face.
But every so often, right out of somewhere left-field, you are pulled up short by a mini tsunami. An emotion or an event or a comment that suddenly brings back all the primeval fears. Suddenly makes you look metaphorically at your reflection and realise just how ill you are, or worse gives you a stark glimpse of what is to come.
A couple of weeks ago a merry horde of our best friends descended on our new house, a couple staying for three nights, rising to a glorious crescendo of four families and fourteen people sleeping over on the Saturday night. It was a delightfully raucous time, full of food, booze and hilarity. I had to sneak away on numerous occasions to the bedroom for downtime, but these guys have known me for years and I love them for accepting me at face value. Pyjama days and all. It was brilliant, and we can’t wait to see them again…
My first scared-person-in-headlights moment was on the Saturday when three of us sat down to a game of cards. ‘Sevens’ now you ask. I won’t explain the rules. Anyway, my left arm and hand have been rubbish for a good couple of years now. Poor sensation, poor dexterity, and a tendency to ‘claw up’ uncomfortably when I’m feverish or tired. It’s a while back that I stopped dealing cards or fastening my top button. And cufflinks? Forget it! I could still hold the playing cards though, and place them with my relatively good hand. Until that Saturday two weeks ago.
Suddenly my right hand was almost as bad as my left. I was cringeworthily, embarrassingly slow at sorting the cards I’d been dealt. And equally bad at playing each card. It was horrible. Sitting totally unfazed by a granny walker standing beside me, I hated every moment of that half hour of hand crappiness. Because multiple sclerosis had snuck up and caught me unawares. Because it was new to me.
The next day, with everyone preparing to leave, I was chatting over coffee with one of the dads. And without warning or any clumsy gesture, the (fullish) coffee mug simply dropped out of my hand. Now I know we are all capable of spilling drinks and dropping pasta on the floor. We’ve all tried to get red wine stains out of carpets with the salt trick. But I knew, instantly, that this was MS. My hand, my better hand, had simply failed in a basic task.
The coffee was mopped up and a fresh one poured. No fuss. Soon after everyone left and after a good rest, I found a handy playing card holder on Amazon – now delivered – and resolved to hold my coffee cup by the handle from now on. The problems were solved, and thankfully the strength in my right hand has returned to baseline anyway.
Love this Mark. I watched an old video the other day and it absolutely shocked me to see me climbing and running on soft play equipment with my three year old (this was seven years ago). Worse still was the expression of shock on my daughter's face when she realised that I used to be able to walk properly. Please know that you're not alone, your writing is so brilliant and reflects exactly the way that I feel x
Heartbreaking that bit. Yes, I could walk a mile or two with firstborn, and there is a lovely pic of us jumping in tandem when he was 4ish. But now neither boy (7&12) has any recollection of me not disabled… Thanks for your kind words. Onwards together!
Thank you, kindred spirit. Ace blog. Keep going and carry on. I remember mowing the lawn, or mechanical Zimmer, and my 3 year old encouraging to go faster as she tried to push me along (26 years ago)…0MG how things change.
Thanks Dean. Yes, lots of bittersweet memories of mobility…