Life, pain and the whole damn thing

In case you’ve almost missed it, this week was National Pain Week. Chronic pain has many sources and is not usually visible, which is why many of us who suffer with it are inevitably faced with the exclamation, but you look all right! Just a hint folks, not a good way to start a conversation with someone whose every fibre is screaming although you can't hear the vocals. 

I can't speak for the origin of the pain of others but I suspect conditions of onset might be common. Mine developed after lifesaving surgery and gave me a completely new set of challenges. It took three years to diagnose properly. By then, I was barely functional. I own up to being a major overachiever so I was resistant to the adjustments that needed to be made. I had a high-profile corporate career, a large extended family and community commitments. I wanted to get up, go, and keep living the life I thought I'd get back once my surgery was over. Luckily, a fantastic pain specialist, stints in a rehab hospital and a team of physios, osteopaths, occupational therapists and counsellors, all worked to help me get a new perspective on the situation.

The first thing I had to do was to develop acceptance. Notice that I used the word 'develop' – it took a while. On the days that I felt better, I rushed to do heaps of 'catch up' things then wondered why I crashed the next day. I learnt with practice to do something called 'pacing'. Ha! No mean feat for a woman who lived at a million miles an hour.

My specialist gave me a useful analogy one once, telling me to think of my daily energy availability as a pie (pizza if I'm keeping with my Italian origins). This has to be sliced up for allocation – your brain needs the energy to think, move and to process all those functions that run like background apps of which we're unaware. With chronic pain, the brain is also trying to get that pain under control so for that it grabs the largest slice of the pie/pizza (as any of you with hungry kids would understand). This leaves less energy for the background bits that have to keep running regardless. And, if on those days I'm trying to do too much with a smaller energy slice, it's no wonder exhaustion ensues. When I finally understood this and married it with what I'd been taught to help manage my pain – medication when needed, eating well, relaxation, massage, counselling, yoga and appropriate exercise - I achieved more.

One of the characteristics of my pain is that it is unpredictable. More correctly, the peaks in it are. It's always in the background and when I stop and mentally scan my body, I feel pain it everywhere. But there are days when for no discernible reason, it spikes and that can last for a while. On those days, I might not be able to put my feet on the floor without pain so it's hard to walk. Nerve pain fools me into trying to work out if the sensation is burning hot or freezing cold, any kind of stimulus is painful, my head gets fuzzy and concentration is a chore. I can't grip things, I can't sleep and I can't eat. Nausea sets in and fatigue can be a bitch. That's just the stuff that's easiest to deal with.

I've consulted anyone who is an 'ologist' in every field because chronic pain is a complex condition involving many body systems. All of this helps me to understand and to manage. However, chronic pain affects us physically and psychologically. It can be depression and is anxiety provoking. At times, I feel vulnerable as if my body is letting us down. The worst part of the condition for me was the initial loss of identity. After almost dying from the medical condition that resulted in the pain's offset, I was forced to give up my career and income, which was gutting. I identified with my job. I couldn't do as much for my family and friends nor be involved in the activities that I loved. Good counsellors and staying connected to people as much as I could, got me across the line, helping me understand that living life differently can have benefits.

Making changes didn’t mean giving up enjoying life. To the contrary, it meant that through learning to understand my condition, and how to manage it, I could go on living, even if it was in different ways and at a different pace. It isn’t perfect, far from it. I read avidly about new research and practices in pain management, I constantly try to improve how I approach it.

My suggestion to anyone struggling with chronic pain is to find a pain practitioner or a pain support clinic – advances in neuroscience are being made all the time, which practitioners know about and can apply to each person's situation. Read up on the condition, adjust to the circumstances where possible by following management strategies. There are websites and resources that you can hook into and follow. Stay connected to the world.

Chronic pain brought me a changed life. While this has its challenges, my life still  has potential, I still have contributions to make, there is still happiness and even joy. 

You don’t have to go home, but you can't stay here

'You don’t have to go home, but you can't stay here.'

That’s what my musician ex used to say to the audience at the end of every gig when people continued to mill around the stage and just didn’t want to leave. 

I felt like that at the end of this year's Williamstown Literary Festival. I didn’t want the gig to end.

This year there was an extra special buzz. The thirteenth festival, it entered adolescence and is maturing into one of the 'must go to' literary events. 

As a writer and book lover, I'm excited to have the WLF on my doorstep. I was proud to be part of the program this year, with the opportunity to be in discussion with Olga Lorenzo and to be part of the Stereo Stories Live event with my 90-year-old father, Salvatore.

I've done many Stereo Stories gigs, but I was particularly nervous that night because I'd realised how much bigger it had grown, judging by the sea of faces in the audience. Then I looked around the table and there I was in the company of fantastic writers and musicians, Vin Maskell (founder and MC), Paul Bateman, Rijn Collins, Brian Nankervis, Andy Griffiths, Clare Boyd-Macrae, Zoe Krupka, Smokie Dawson, Jack Gramski, Peter Maskell, Anthony Shortte, Rob Gador, Stephen Andrew, Jennifer Lund and of course, my dad, Salvatore Romita. Not only was I suffering from nerves, but also my Imposter Syndrome kicked in.  

After we had performed our piece, Lili Marlene, (me reading, Dad playing piano accordion) we helped him off stage as he leant heavily on his walking stick. The audience continued to applaud him. He was moved by the reaction and the kindness shown towards him. 

That night for me was the epitome of what the WLF is about – a warm, appreciative audience, a love of words, a love of stories, and generosity of creative and receptive spirit.

Sadly, for this year, I've been forced to go home but I'll carry that memory with me until next year's festival. It will be fantastic as always. 

We know how to do words in the west.

Dancing with Dad

My father is over 90-years-old and today, I accompanied him to another funeral. These occasions are becoming more frequent and emotionally harder for him. Most of his friends are a decade, if not more, younger than him, as was the friend who died this week.

I know all my dad's mates. They are the youthful men of my childhood; their now middle-aged children were my playmates. Funerals are some of the only times I see them. We turn up knowing the formula: the apologies among the living for not catching up more often, the sea of dark clothes that ripples as the attendees move and join in the rituals of goodbye. The inevitable question: how to sum up a life in a few minute's eulogy?

Dad's hands shake as he holds the service booklet. His friend's face smiles from the cover. On the back, his friend is pictured as a sombre young man. The few sheets of paper in between try to hold together the story of the years that connect the two images. 

Dad leans to me. "I saw him a little while ago. He didn’t look well.' His voice cracks as he goes on. 'He said to me, Friend, I think they're coming for me.' He turned away, gulping back tears.

We don't always know when death will come but at Dad's age, it's closer than most. I have no idea of what it feels like for him to attend a funeral. I can only imagine the thoughts and emotions that engulf him. Overly protective, I flounder trying to work out how to ease his distress. All I can do is rest a hand on his shoulder. It feels inadequate.

In the seat ahead of us, a young mother wrangles a toddler. He looks to be about 13-months-old and he's just found his feet. He explores the world, gurgling happily, while those around him mourn. Suddenly he notices Dad and stretches his arms towards him.

Dad reaches to pick him up.

The bub's mother whispers, 'He's too heavy.'

Dad shakes his head and mouths it's okay then collects him in his arms.

The toddler explores my father's face with his hands, trying to lift off Dad's glasses, using a language all of his own. Dad offers the child his thumb, which the toddler readily grabs and they press their cheeks together, pretending to dance. The toddler laughs. Dad's face glows as he smiles.

Just as suddenly, the bub turns back his mum and leans toward her. As his mother cuddles him, he smiles broadly and watches Dad over her shoulder.  

In that small space of time, Dad's tears ease.

It reminded me of something a friend told me years ago—that babies bring their own love to the world. I wonder if that bub sensed a need in Dad, who was a stranger to him.

I'd like to think that my friend's theory about babies' love was right; that somehow the love had stretched across the nearly ninety years between this baby and my father, and given Dad a few moments' comfort.

As the mourners surged out of the church, the toddler and his mum were swallowed into the crowd. We didn't see them again.

Maybe we'll see them at the next funeral.

I hope he and Dad will dance.