Blanket of Love

When I declared til death us do part to my imminent husband, Allan, in September 1984, I meant it. I just never thought it would happen. It was theoretical. For the last two years of his life, knowing Al’s cruelly random Parkinson’s/Lewy Body dementia combo was terminal, it was still only theoretical. Now, his ashes, his earthly remains, rest under some ornamental orchids in my piano room. His handsome face grins at me from its A4 frame on my dresser. Seven months since his death, I'm just beginning to understand that it did actually happen.

 With Allan I was always securely wrapped in a blanket of love. That's what is missing now. I still have my health, even better with new cataract-free enhanced vision. I'm physically in great form. I have my intellect, my interests, my friendship groups and friends. But that love to come home to that was only ever a phone call away has gone. The memory of it remains and I'm hanging onto that but I can't have Al's love reaffirmed by his hug or his hand to hold.   

Oh, I'm very busy participating in my days: listen to another audiobook, the more unfathomable the plot in a Lynda La Plante or a Jack Reacher the better. Stops me ruminating.   Organise my recycling, bike-ride or walk somewhere, always with a shopping list in my back pocket. It's good to tick things off. Chat to whichever willing shopkeeper I can find. Over-share. Garden. French class, German class, choirs. Busy. Busy. Busy.

 This is what I'm doing every day. Trying to entertain myself and get through the next 24 hours. With luck I'll manage a few hours sleep, preferably during the night. If not, I'm learning heaps from podcasts.

 Seven months on, I'm missing Allan doing the little that he could still do: in the evenings, sitting on his kitchen chair, facing the TV, flicking through free-to-air. I miss him shuffling through to me in the lounge after dinner, interrupting my absorption in yet another unmissable series, asking if there was anything we could watch together. 'Do you mind if I just finish this episode?' I'd ask. He never did. After a while I'd call him and we'd watch something that would appeal to us both. It was always my choice. I knew what he liked.

 He'd sit at the corner of his couch at right angles to mine, so close that I could reach across and briefly - as long as I could stand it - hold his icy hand. In all but the hottest weather, he'd be wearing a beanie, windcheater and puffer jacket to combat his cold sweats, a symptom of his Lewy Body dementia. He'd sit leaning forward, the pain and deformity in his back preventing him from reclining against the cushions.

 Throughout his illness, he only 'lost it' a couple of times. The first was when the GP told him he could no longer drive. Standing next to me at the kitchen sink, in reply to my asking if he was all right, he said, 'I'm absolutely gutted.' There was nothing I could say. The fact that I'd been doing all the driving since the previous Christmas when it became obvious that he was too vague and slow to be trusted behind the wheel was irrelevant. At least he'd known that if he wanted to he could.

The next time he expressed despair about his illness was the following year, maybe 12 months later. It was after 10 pm or so. Bed time. Time to clean teeth and retire for the night. TV was off. We'd had our drinks and customary squares of dark chocolate, our evening treat after we both quit alcohol a couple of years earlier. It should have been a cosy time but it never was while Allan had that illness. Every day was imbued with my fear of what would happen next. We hadn't yet stood up when I noticed Allan's face, so sad as he leaned forward and stared into the corner.  'Allan, what's wrong?' Well, what wasn't wrong? but we say these things. 'I'm just thinking depressing thoughts about life, the universe and everything,' he said heavily. I went to sit and hold him and reassure him that we were coping. Practically we were. But emotionally it was torture. Allan rarely said anything other than to express that through it all, he was just worried about me having to do everything because he was no longer able . He worried about me having to go on without him. Typically, I'd joke at this stage. 'Don't worry about me,' I'd say over his shoulder, because inevitably he'd be holding onto me. 'I'll be heading off to Europe with your money.'  Which is exactly what I'm doing.

 But at the end of the day - at the end of every day - I'm so sad and lonely without him. I had 45 years safe in that blanket of love.

Sugar, by Carly Nugent

I’ve just read Carly Nugent’s Young Adult novel, Sugar. Its protagonist, Persephone, aged sixteen, is initially bleak, confused, desperate, isolated and flat-lining with grief. A boy at her school has called her a cunt, she’s punched him in retaliation and they’re both suspended. She wants to understand why she deserved this appalling label from someone she barely knew and determines to find out. She also discovers a dead woman on a bush track and feels a connection with her. Persephone wants to understand what thirty-year-old Sylvia had done to deserve her death, believing this will somehow explain her own feelings of guilt. 

Persephone is the only child of Demi, also struggling with grief since the death of her husband, Persephone’s father in a car crash, twelve months earlier. Persephone had collapsed at his funeral and was subsequently diagnosed with Type 1 diabetes. In her grief, Persephone conflates both events. She feels responsible for her father’s death which she irrationally believes she caused. Diabetes is her punishment.

Demi and Persephone are temporarily providing refuge to Iris, a nurse and her son, Steven, both sheltering from a violently abusive man. Nugent sensitively examines the dangerous attraction of such 'love'. 

Through these and other characters, Nugent deftly explores grief, teenage angst, domestic violence and relationships...

And did I forget to mention WHAT IT'S LIKE TO LIVE WITH TYPE 1 DIABETES? This was the thing for me. Diabetes is as much a presence in this narrative as any other character. Author Carly Nugent, herself living with Type 1, nails what it is to live with this dark passenger, with whom I've travelled now now for more than forty years. If you've ever 'sympathised' with someone's diabetes - 'oh, you poor thing it must be awful!' - or casually dropped some remark like 'my friend's dog died of diabetes' or suggested that a person with diabetes should eat lemons or cinnamon because it cures diabetes or... I could go on with a whole conference full of crap that I've endured over the years, you should read this book. Let Persephone enlighten you.

Not only is Persephone dealing with one of the hardest things for anyone to suffer, the loss of her father and all the other issues that beset any sixteen-year-old, she also has Type 1 diabetes as a constant companion. Diabetes, the needy child who never grows up and moves out, constantly ready to potentially kill you if you don't keep your balance on the tight rope, a metaphor which Nugent uses in Sugar.

I've often been grateful that I wasn't diagnosed until I was twenty-five. I had my own demons during my adolescence and diabetes would have been the perfect weapon against my family or myself. Type 1 diabetes is best held in check by obsessive routine. Even so it's a constant challenge. Nugent seems to encapsulate all of this in Sugar, where each chapter begins with a blood glucose value. For me, this added another layer of tension, knowing what I know. I was desperate to advise Persephone and save her, so real was she. 

I was totally immersed in Persephone's world. The characters were credible, the story beautifully written, including a great exploration of the power of the 'c' word. I could see the bush tracks along which she 'escaped' with her dog, Hermes. I've read books and seen films about Type 1 diabetes, but this is the first I've read that really connects with my own experience of living with this particular chronic illness.  

Warm regards, Carly Nugent. If I could have found you on social media I would have dropped you a line.

Correction: the dog's called Berenice, not Hermes 😊

Pandemic pondering

How was my lockdown? Since you ask, I've had too much time to explore every orifice, mostly metaphorically speaking. It doesn't help that something  compels me to keep a journal, the constant writing of which rarely amounts to anything other than something that may later make me chuckle. Or not. 

One day in August. I'd finished one journal and the process of getting out of bed and walking to another room to get a new notebook made me lose my train of thought. What was I writing? I wrote. For some reason, I decided to answer in my nascent German. Ja - yes - heute habe ich Deutschklasse - today I have German class. Unutterably boring, but it took slightly longer to compose in German. Had to think about whether the adjective 'deutsche' needed to stand alone with a lower case 'd' or if it was part of a compound noun thus requiring capitalisation. Jeeze. See what I mean?

So the pandemic. Suppose it helped that last year we'd been through something so much worse on a personal level. Who could have imagined that, in his awful dying, our daughter's young partner had been somehow gifting us the strength to proceed relatively unscathed through the forthcoming global crisis? 

And really, all my co-morbidity, Diabetica, and I have had to do during the pandemic is avoid actual as opposed to virtual human contact. My personal shopper and husband, Al and I have everything we need. Just had to keep fit, for so long only within a five kilometre radius. 

Which led me on my bike to Fawkner Cemetery. Found it simply by heading north rather than south on the Upfield Bike Trail, thus avoiding congested paths. Apart from the deceased, none of whom I encountered on that visit, I spotted perhaps 20 other souls minding their own business in all that peaceful landscaped treed acreage. I pedalled around, stopped to read a few headstones and plaques; relished the mature ghost gums - my favourite trees. Also had a bit of a cry. Seemed like an appropriate place to allow it.

Took Al with me on my second ride to the surprisingly lovely cemetery. I inhaled it all, through my mandatory mask. Thought I wouldn't mind having my ashes under a towering ghost gum by the creek, sneaked in by someone with a trowel, on a bike ride . Who'd know? 

I parked my bike by the curb in the Italian section and worked my way along, giving Al a bit of a commentary. I have a compulsion to share my inner monologue with him telling myself he enjoys it. I dawdled along, companionably pondering the lives of the people in the photos who'd had all their dreams by 1967 or whatever year they'd died. At the last grave, I turned to Al. He wasn't there, having quietly pedalled off. Made my hair stand on end for an instant, wondering whose presence I'd so clearly felt by my side as I practised my Italian pronunciation all along those headstones.

Bit disappointed not to have a ghostly visitation on my third solo cemetery cycle, given how many potential spirits surrounded me. What I did get was a comforting sense of inevitability. So much life lived in its fullness, whatever that might have been. A tiny oblong slab marked the brief life of a two day old infant; so much hope and sorrow a hundred years ago. 

Whatever business those thousands of people had been in the middle of, whatever plans they'd had, whatever they still wanted to do, all those who'd lived and died, they'd had whatever life they'd had, for what it was worth. That was all.

You tend to think about your own mortality when you spend time in cemeteries. let alone during a pandemic. Contemplating it all and dreading death just isn't worth it. No one is getting out of the world alive. 

But somehow, all those dead people, and all those who'd loved them, got through it. I find that reassuring.