Can you believe it’s been seven years since you and I – for better, for worse, for richer, for poorer, in sickness and in health – pledged ourselves to each other, ‘til death do us part? Seven whole years.
Do you remember our wedding day? To be honest, I wasn’t ready. I knew something significant would happen when I booked that appointment with a neurologist, but I didn’t expect to get hitched, to you. We’d have dressed for the occasion if we’d known. I’d heard your name, of course, from your decades-long relationship with Stephen Hawking, but considered you, at best, an acquaintance. I hadn’t noticed it was you stalking me, running your deathly, long fingers down my spine, tracing each nerve, sending shivers down my muscles, then pulling out the ground from under me. For months, years, you’d been grooming me.
Tears toppled down our cheeks as Densil and I were formally introduced to you. The neurologist was clearly uncomfortable in her matchmaker role, procrastinating before naming you and obfuscating so that I had to ask if I’d understood correctly. Yes, she was telling me you’re a serial (and parallel) murderer of your spouses; typical survival is two to three years.
You’d think we’d have pulled out then, but we had no choice: I was already locked in to becoming locked in. It didn’t happen straight away. I didn’t notice a honeymoon as we were struggling with shock and fear and grief but, looking back, I still had my body then. I could still tap numbers into my phone and hold it to my ear and talk to my Mum, my siblings through tears, sharing this terrible news, and love. I could still tenderly hug Densil and our darling Kimi, snuggle together in bed, reach in to kiss her so-soft cheeks, and try to explain. I could still walk to the station and catch the train to the city and climb the steep theatre steps and sink my bum into the seat and convey the proffered malteasers to my mouth and join the standing ovation. I could still sit at my laptop and book an uncomplicated family holiday to Tasmania, and jump on a plane and traipse around the art gallery and rug up to enjoy little penguins waddling up the beach and lie supine in the grass to watch sunbeams and gum leaves dance. I could still meet up with friends for beer or coffee, and embrace and hold hands and weep and laugh and talk, about life and death and faith and uncertainty and love and work and ways to live. I could still go to the pool, adjust my goggles, and in communal solitude glide through the water, arms and legs working together, head turning sideways to gulp the air, then afterwards I could peel off my chlorine-scented swimmers, lather shampoo through my long hair, and stand under a hot shower to wash myself new. I could still work, collecting books from the library to read on the train, scribbling notes, meeting with PhD students, discussing drafts with colleagues, writing and rewriting, finding examples to make lectures engaging, circulating amongst students to answer questions, Skyping collaborators, speaking at conferences. I could still collect Kimi from primary school, pick up some groceries, decide what to cook for dinner, and sit eating in front of the TV. And when I felt exhausted, as happened more often, more quickly, I could still walk down the hallway, s(h)it on the toilet, wash my hands, brush my teeth, put on my pyjamas and occupy my half of the bed.
As you took over my body you took these things from me, from us. You have taken and taken and taken: my arms and my legs, my fingers and toes, my trunk and neck, my breathing and voice. You have not yet rendered my face an immobile mask or stolen my swallow but I know that these too are in your sights. A year ago you very nearly took my last breath. Through some combination of expert medicine and attentive care and family love and grace and luck I was revived. And compounding my good fortune, we were given the chance to have surgery and full-time care to enable life-prolonging ventilation.
After seven years with you I’m feeling the itch (actually, right now, it’s more the annoying tickle of something in my right eye; have you tried finding the words to explain how you want someone else to wipe your eyes?). I have had enough of you; I want a divorce, to go back to my old life.
But it’s here that the metaphor falls over. I know I can’t be rid of MND, but it turns out there is much to appreciate, enjoy, love about this life, even with MND. I am lucky to have had these seven years, a gift unimagined when we were given the diagnosis. I’m lucky to have such an excellent health care team. I’m lucky to have technology and equipment that allows me to to communicate, breathe, have my throat cleared, be toileted, showered, moved, sleep. I am lucky to have carers who attempt to implement my peculiar eye-wiping instructions, who (to quote Densil) ‘take the piss’, who care for me in so many ways. I am lucky to have had fabulous holidays, shows, outings, work and awareness-raising projects. I am lucky to have connected with such extraordinary people in the MND community (and grieve for too many gone). We are lucky to have had such wonderful, generous support and love and friendship from our beautiful communities. I am lucky to still live a life enriched with dad jokes and chocolate and art and birds celebrating rain and saxophone and feline closeness and beer and public broadcasting and niece photos and reading and puzzles and writing and coffee and visitors and more. And I am lucky, so lucky that my real family, my gorgeous Densil and Kimi, have been with me, and I with them, with love, kindness and cheekiness, for better, for worse, for richer, for poorer, in sickness and in health.