Friday, 29 July 2016

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. 

Monday, 20 June 2016

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.

Tuesday, 7 June 2016

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.

Sunday, 16 August 2015

Spoil sport

Today, on my way to meet a friend for brunch I was enjoying the walk in the crisp morning air opposite Newport Park when I became aware of raised voices. I looked over to the parkland to see a man admonishing a young girl, who looked to be around fourteen. She was dressed in sports gear; on her back a bag containing what may have been a lacrosse stick, I can’t be sure, but she seemed to have just come from some type of practice.

The man’s stance was aggressive and his gestures intimidating. Not all his words were audible, however I caught “You’ve wasted my entire season!” then there were a few F-bombs thrown in for good measure. The girl was obviously distressed and humiliated. She dabbed a tissue to her eyes and trailed behind him. Then he stopped and turned on her again, screaming more abuse.

I was about to cross the road and say something, when the girl turned away from him and walked in the opposite direction, while he stomped away from her like a 2-year-old having a tantrum. The tension left my body as the distance between them lengthened.

I’m not sure what their relationship was. Was he her father, was he her coach; was he both? Please, no! It was telling that he was agitated and concerned that it was his season that was wasted, not hers. I wonder whose needs he was concerned about. It sounded like he was expecting her to do what he couldn’t. I wonder what sort of performance he expected to get from this young woman using those tactics. I was so glad she walked away from him.

All day she has come on-and-off to my mind. I have no way of finding out who she was, but if she ever gets to read this, I want her to know that she’s not a loser, he is. And, if he’s reading this I want him to know that the words ‘man’ and ‘coach’ in their true sense don’t apply to him. Bullies don't qualify.

If anyone should have been embarrassed about their performance today, it was him.

Wednesday, 29 July 2015

Stereo Stories @ VU Bar

Stereo Stories combines personal stories and popular songs, featuring writers and musicians onstage together. Stories of pathos, humour and love read with doses of jazz, soul, pop and rock. As writers read their stories about particular songs, musicians weave in and out of the narrative, playing parts of the song. 

Stereo Stories has been a hit at the Williamstown Literary Festivals and Newport Folk Festivals. The 90 minute VU performance will include some stories by students and lecturers of the VU Professional Writing and Editing course and some of the best musos in the land. 

THURSDAY 30 JULY, 7pm start.
VENUE: The VU Bar at Footscray Park campus, Building M.
Cost: $15, or $10 conc.
Bar and meals available. Books on sale.

RSVP TO or leave a message on 9919 2904. It helps the Bar with staffing.

See more about Stereo Stories here:

Friday, 10 July 2015

Call me 'cute'

Today I was listening to Life Matters on Radio National, in which comedian Dylan Moran was being interviewed and talking of life’s four stages: Child, Failure, Old and Dead. I understood the humour in that, but it got me wondering about where I'd sit on the continuum. I often still feel like a child and a failure (like most people who have lived long enough to screw up a few things), but I suspect that given my adult children have started referring to me as ‘cute’, I’m somewhere between the Old and Dead stages. It means I’ve hit that age threshold where keeping connected with the modern world are seen as me making an effort as the world moves away from me. Aww. Isn't she cute? 

Sometimes in your 20s and early 30s, middle-age and beyond looks to be so far away, that those in the younger age group are unable to conceive of what life is like so much further down the road. In fairness, what do they have to compare it to? Certainly not the depth of experience, the mistakes and the learning. Often there is an assumption that older people do the same thing every day. That they are not open to change, and yes, occasionally they try new things, which makes them, well—‘cute’. It’s hard for them to imagine that people continue to have dreams and aspirations and desires until the day they die. Sometimes these are silenced by other demands and by the perceptions and disinterest of others about how those in middle age and beyond should, or do, behave.

Coincidentally, the day before listening to the program, I had read an article in Overland Literary Journal, about emerging writers and questioning why it was usually young people who were entitled to emerge. As a more mature writer, and one not having had the opportunity in my younger years to follow this path, I do feel occasionally that I’m struggling with the perceptions of what I would bring given that I’m ‘emerging’ at a later stage. But it’s not stopping me. I will keep doing the work and finding new ways to improve myself. 

So, yes, I will remain ‘cute’ and possibly expand my cuteness. I’ve already warned my children that if I am hit by the proverbial bus, there is to be no reporting that the grandmother of *insert number at the time* was collected by the 903 to Mordialloc. No, no. They are to ensure that it adds—social worker, corporate trailblazer, writer, author, artist, teacher, mentor and a PhD candidate—to the descriptions of wife, mother and grandmother. While I love what those parts of my life give me, I was a whole lot of other things—ME—before them and I don’t want them forgotten because I'm ‘cute’. Some of my accomplishments started and carried through from my youth and others I have come to in later years. I have not stopped. Yes, I've been slowed down by heart surgery and chronic pain, but so what? The space between Old and Dead is full of possibility and vibrant, not just with desires and dreams, but with action and accomplishment.

In the interview, Moran said, 'People sort of look at older people and go, "Oh, they just wake up at the same time every day and they eat a cheese sandwich at lunch and they walk the dog." But it’s not like that. People are quieter about their inner life, but it’s still happening.'

He absolutely right and I'm not going to be quiet about it anymore. 

Image via The Nth Degree 

Tuesday, 22 July 2014

A hard act to follow

Recently, my father, Salvatore Romita, and I appeared on RN's The Drawing Room with Waleed Aly in a session on Stereo Stories, a wonderful website that is the brainchild of Melbourne writers Vin Maskell and David Linden. The idea behind the website invites us to recall a song, a time, a place. In my case, the song was Lilli Marlene and my recollections were of the song, as played by Dad on the piano accordion, and its history in our family. In particular, it was about Dad recording the song in 2007.

When we listened in to the session, which had been pre-recorded, Dad sat nervously on the sofa, fretting about whether he’d played well enough and answered Waleed’s questions without sounding as if he didn’t know what he was talking about. After Vin’s recounting the history of the website, Waleed asked Dad about his personal history with the piano accordion, an instrument he first was given as a gift by his father who saw the potential for music in his son. I then read my story and Dad played the song. Of course, with the magic of mixing, the music was beautifully interwoven with the narrative and the sound was perfect. Dad began to sob. Puzzled, I handed him tissue after tissue. We listened to the rest of the segment with Dad gulping and the continuous whoosh of tissues exiting the box. The segment ended with Dad, “taking us out” as they say in radio with the song, You Belong to my Heart. When it ended, Dad wiped away his tears and said, “I wish my father could see me now.” At nearly 89 years of age, and on national radio, he felt that his father’s faith in him had finally been confirmed.

This short story of just a few hundred words has given me so much more than the opportunity to share a slice of family history and a song full of memories. It has become a layered experience—a story about the story about the song. It has given me a chance to understand better my Dad and his dreams and aspirations. Together, we've performed this piece at two recent festivals—Williamstown Literary Festival and the Newport Folk Festival. Dad was a hit at each. At his age, his energy and enthusiasm for his music is inspirational and frankly, he’d never get off the stage if you let him stay there. I have learned much from him about living creatively for which I will always be grateful. 

The night after our segment, The Drawing Room featured the work of globally renowned singer-songwriter Bob Dylan. I'm glad they picked such a big name. After all, Dad's a hard act to follow. 

Stereo Stories in The Drawing Room featuring Salvatore Romita, can be heard here