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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16 thoughts on “‘Hurry Last Days!’”
You’re not going – I won’t let you. xxx
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OK honey, you’re the boss.xxx
Oh Barb, your stoicism, your gritty grab on reality and your sense of humour ( that lovely anecdote about Margaret Olly) is so moving. I wish you a merry Christmas and happy times with the ones you love.
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Merona my friend, Merry Christmas and thank you for all your online and offline support. Here’s to your European Xmas – let it snow, let it snow, let it snow. Love Barb.
Barb – I am so saddened to hear your loving partner Francis also has this dread disease. I only hope she has someone as loving as you to look after her when she needs help. I admire your determination to keep Francis from becoming solely your caregiver, we have a very delicate line to walk when it’s our partner who cares for us.
I was unaware of the passing of Stella Young. I had watched some of her presentations on disability & admired her POV & her feisty attitude.
For me, I can report a slight improvement in my breathing just recently. It is so nice to be able to walk to the kitchen without pausing to catch my breath halfway there. I am still breathless once I get there, but my pulmo has noted some improvement in my PFT scores since I have been using Tudorza. He says this is common with this new inhaler – to get some slight improvement & I am reaping the rewards. And believe me I am rejoicing in the benefits. Who knows, some day they may find Tudorza has a longterm negative effect – but in the short term I’ll take whatever improvement I can get!
Please accept my very best wishes for you & Francis to have a very Merry Christmas & an especially Happy New Year!
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I decided not to medicalize my blog, mainly because it’s a huge responsibility giving advice or feedback. There are far more qualified than I but I do know a helluva lot abut Copd from the inside out. And the comments section is a good place to address specific issues, if people want. (I love it BTW).
Now your new inhaler has some nasty side effects – the longer we take these drugs the more complications later. (She says, with her steroid induced osteoporosis).
I have switched from Spiriva inhaler back to nebulising Ipratrpium bromide (that’s in your inhaler). I find it stops me urinating properly when inhaled and is more effective nebulized (mixed with salbutamol) with less side effects. Weeing normal! Of course cataracts are a worry with the neb vapours.
Breathing better is always worth the sacrifice though, which is why I’m trialling high dose ibuprofen, as per a current study in the US that thinks this over the counter anti inflammatory may be the holy grail for COPD. I am taking 600mgs three times a day and after 3 weeks have noted a small but significant improvement. The problem is, it’s rough on the stomach. To be cont. . .
Sorry to be a pain Barb, but do you know some of the side effects of Tudorza? I have no problem urinating as I have had incontinence problems since my hysterectomy (lots of endometriosis attached to my bladder). I am happy to breathe better now but would just like to have some knowledge of what might be coming down the pipe.
Benz, they ALL have side effects, sorry if I alarmed you: “The FDA says although the trials showed no serious side effects from using the drug (the most common ones were headache, inflammation of the nasal passage (nasopharyngitis), and cough), they warn that:
“Tudorza Pressair may cause serious side effects, including paradoxical bronchospasm, new or worsened increased pressure in the eyes (acute narrow-angle glaucoma), or new or worsened urinary retention.
So if you’re weeing ok, all’s good 🙂
Benz, no Frances doesn’t have Copd – I’m sorry, I meant she lived with mine – we are a threesome, her, me and Copd. She’s as fit as a Mallee Bull as we say down here.
Thank you for your thoughts on caring. Yes, everybody must have to find their own way through but there’s no rehearsing for this thing. So glad about your improvement – I will look into the inhaler you mentioned. Any improvement is wonderful, isn’t it. And it’s a good time to do a bit more exercise when you feel better. And it’s not minus 20!!
Anyway my friend, we’re both still here and Christmas is round the corner. Wishing you and your loved ones a Merry time and a happy New Year.
Oh, I’m so glad Francis doesn’t have COPD! Sorry for the misunderstanding, but it’s a great relief to me. Yes, we are having mostly nice weather here in Alberta – not too cold & some snow on the ground which is how Christmas should be in my mind.
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We gave up on trying to have a northern hemisphere xmas in 30+ degrees – great pavlova weather, though. Cheers.
As usual your post spoke my mind. I find myself wanting more aloneness than I used to. I love the inner life now that there is not much of it left. Speaking of medications I also have asthma in addition to copd so many meds I cannot use. Lately after a half year of every other month of relapses I tried marijuana. I make up a tea with coconut oil and drink 2 to 3 cups a day. My insane coughing has diminished greatly. The last 5 months have been relapse free. Exercise is something that I can hardly tolerate now. Just the business of living is all the exercise I can manage now. I love reading all your posts and once again am so glad I found this site.
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Lyn, thank you for your intriguing contribution. So good to get some well time under your belt, isn’t it?
I would love to hear more from you, and about your experiences.
It’s Christmas Eve and I’m feeling very lucky to be alive; to be cherished.
Hope all’s well with you and good luck with keeping up the exercise.
All the best my friend, talk again soon.
Barbara – Your writing remains bold and compelling. You give us the reality of what you and Francis face on a daily basis and I so appreciate your acknowledgment of Francis for she is going through her own hell on earth. I know this hell well as I’ve lived it with Tom for 27 years.
“Hurry Last Days” the title has been whirling around in my head for days.As usual beautiful BARB an amazing article filled with imagery.Your writings reach the deepest corner of my heart , & I as all your other readers
wish I’m sure that we could just **kiss it better, find a WIGGLES band aid , just rub it !! or take 2 disprin & lie down ** My dear father who was a local GP / treated our family thus constantly !
Barb we are so happy to know you are having a little extra time with Francis & your other loved ones. What a poignant tribute to Francis who is indeed a very special woman . You have incredible insight
& are so thoughtful & brave trying to help so many of us through maybe your last days
Our whole family will never forget you ,your gift to us has been so precious. You have taught me so much about giving ,edification ,acceptance, love, being open & non judgemental. I thank you very very much.
I love you ,I will miss your wisdom ,your warmth your humour your strength in sending messages out to others whilst fighting to live yourself .
I pray you pass over peacefully & as pain free as possible & find what you desire.
I know your faith is strong ,I believe little Matisse will be skipping in a field of wildflowers & will welcome you to rest & watch
As our 3.5 yr old Holly said at Christmas time as I started to copy her ballet dance moves with the bopping older cousins “NO GANMA ,you can’t dance now coz you are the Audience”
Another cute comment = ” Ganma , what was that thing you said we had to remember to forget ??”
Also whilst reading me a story she told me to ” Sit quietly please Ganma ,put your listening ears on & remember we do not have any questions during my story ”
Little Nievie Lou & Rod’s 2 yr. old said going to bed ” I LUB OO DARLING ”
Happy New Year BARB & FRANCIS .I am glad you are able to express your love so fully to Francis . I am humbled by your frankness in bearing your soul . ALL OUR LOVE, JULES , KATE, INDIA ,COL LOUISE et al xoxoxoxoxoxoxoxoxoxoxox
I really love your wit and the way you blog. Far different to how I blog. All your pages are delightfully put together.