Who said: ‘Not a day goes by that I don’t wish that I were dead’?
That is the question.
When you live with a terminal illness, you live with a terminal illness—cheek by jowl, breast bone to breast bone, crotch to crotch. A tight embrace. Not much respite, save some hours here and there. It is possessive. It is jealous. It is ever-present and always demanding your attention. It will never leave you. You sweat and grunt under its yoke, yet to slip your harness you need to make the sort of hard decision that Hamlet turned over in his famous soliloquy. Or not.
Only in meditation, contemplation of exquisite beauty, at complete rest and without stress; drugged or fast asleep, can I enjoy normal, automatic, unlaboured breathing. I can elude my illness when I am absorbed reading, writing or watching a play or film. And music is a reprieve, but any excitement can take my breath away. Or fears. Or tears. The very stuff of life.
On this unsmudged morning with a wedding in the village later on, and everything festooned and primed for feasting and fun, I long, as I once did, to sprint down the bush track, jump nimbly over the tree roots, tip toe across the baking hot sand, dodging bluebottle bladders, to tumble into the sea. Another person. Another time.
Fellow travellers in The Departure Lounge know our memories and our imagination are our best friend and our worst ex friend. I am glad of a lively mind that is inclined to make the best of things. And mostly I do. Resilience isn’t born, it’s made. But I have black days too. And no day starts well.
Healthy people (can) spring out of bed in the mornings. Sick people can’t. It takes me ages to get up and get going. At best I’m really only fit for public consumption between the hours of 11am and 3pm weekdays. On other days, I should have a card like the Southern ladies, ‘Miss Otis Regrets . . .’
I once met the legendary Australian painter Margaret Olley in 2007 outside a funeral she had gate-crashed. There’s a photo somewhere, her leaning lazily up against the sandstone wall of a church in Kings Cross, smoking; me wishing I could smoke too. Hearse in the foreground. Ms Olley died of emphysema. She was very crook that day and I remember vividly she remarked that she was like a department store with its sale signage: ‘Hurry Last Days’! She laughed wheezily and died four winters and many glorious still lifes later.
I’ll never forget reading how Gillian Mears wakes up. I first read this brilliant, then youthful author in 1996 (The Grass Sister) and I was envious of her dazzling talent and its likely stellar trajectory. She was a leggy horse-riding beauty enjoying runaway success. A lucky girl, I thought.
It was sad and shocking to open the Sydney Morning Herald in February and read Gillian’s words:
“Not a day goes by that I don’t wish that I were dead.
It would be so much easier than living in a body beleaguered now by advanced multiple sclerosis. I’m in my 17th year of living with this disease and I’ve very nearly had enough.
These days, I get up at three in the morning. No point to even attempt to sleep in for, somehow, my once lovely horse rider’s legs are doing their best to resemble a pair of warped crowbars. Sometimes I can’t find the strength to untangle them for 10 to 15 minutes and I swear and howl. What do they think they’re trying to be? The Little Mermaid in terrible reverse? My legs pleaching into a tail.
Most days, I wake disappointed to do so, disappointed that I haven’t peacefully died in the night.”
Thankfully, most days I wake, still thankful. Still up for it. But I can see the road ahead to my deep north, narrows and becomes steeper.
While Australia was grieving loudly (several front pages worth) for a young cricketer cruelly struck dead by a bouncer, some may not have noticed the passing of a tiny giant, Stella Young, a disability activist, comic and writer who at 32 died suddenly from Osteogenesis Imperfecta.
Stella grabbed my attention as a guest on ABC-TV’s The Drum. She was mesmerizing, a tiny figure atop a wheelchair, all dolled up, wearing outrageous shoes and explaining that it sickened her the way people used ‘crips’ as ‘inspiration porn’. (Crips can call other cripples crips, just like gingers can call other gingers ginger). Or as Stella put it:
“I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people.”
Stella said you get pride by practising.
So it’s nearly Christmas. We’ve been together, Copd and me, for probably quarter of a century. Stage 4 is no picnic, but it can be managed. I ride the dragon.
Which brings me to the humbling admission that my beloved Frances is also lumbered with my disease – a third party in our relationship. But like other couples who get to invoke the ‘in sickness and in health’ clause, and, no matter how much she helps me out, I always want her to be first and foremost my lover, not my carer. Romance will find a way.
For fellow travellers, the-leaving-of-loved-ones scenario is the really bad part of this trip when one goes alone to a bleak place and hugs the cold wind to one’s chest. As W.B. Yates said, ‘Now that my ladder’s gone, I must lie down where all the ladders start, In the foul rag-and-bone shop of the heart.‘
There is some comfort in knowing that every human takes this trip – with or without awareness. It’s hard leaving, but I know it’s harder being left. For I have been left behind, too many times. And this year death takes no holiday.
I hope Gillian Mears is granted her wish to die peacefully in her sleep, and Stella Young her wish that the world becomes a more equal place. She made it so by her presence.
For me, every day is welcome because I wake up beside the woman I have loved for 22 years. How lucky am I?
And for Stella and her snazzy shoes, here’s another girl who left far too soon. Kirsty McColl In These Shoes.
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