The Joyce Girl by Annabel Abbs

a book review

 

image of The Joyce Girl by Annabel Abbs book cover

 

When I was seventeen, there was a Guggenheim exhibition at the Art Gallery of New South Wales. I went there with my art class, and returned, time and again. It was a window into the world of my art text books. Here they were. I stood as close as I could to Brancusi’s, Calder’s, Dali’s, Moore’s and Mondrian’s. I breathed the air next to them like I might catch some ions of genius leaking from the very spirit of each work. I stood back and squinted at them, turned my head and observed them in their minutae. It seemed to me, a spotty gangly teenager in a distant antipodean gallery, that these foreign artists were the master race; their works a gift from the greatest muse of creative expression. The soul of life itself.

The Joyce Girl is Annabel Abbs’ inspired story of an Irish girl in the 1930’s. She lives in Paris, right in the midst of the bohemian art world of my Guggenheim heroes. A dancer, dreamer and artist, Lucia lives in a straightjacket world of obligation and overwhelm. She is the daughter of James Joyce, celebrated writer.  She is known historically as integral to the production of Joyce’s lengthy work, Finnegan’s Wake. She is caught in the undertow of her father’s work, sublimated by her roles as dependent daughter and co-dependent muse. Her own genius, obscured first by the narcissism of her father, despised by her mother and brother and later destroyed by the inept machinations of mental asylums, is explored first hand. She is finally given voice by the author Annabel Abbs in this novel. Heavily based in the facts of Lucia Joyce’s life, we see first hand the struggles of a troubled girl trying to make sense of herself.

“An ephemeral arch of colour, swaying and dissolving. Flashes of imprisoned light. Trembling loops of movement. A wind washed rainbow, my bands of colour shivering and melting. I crouched and twisted. Needles of rain, spiked and hard. I stretched and spread my fingers, soft rays of warm sunlight. I was a swathe of luminous colour. I was the gold-skinned weaver of the wind. Sun-spangled sovereign of the cosmos”  -Annabel Abbs ‘The Joyce Girl’

I loved many things about this book. But, oh, Abbs’ descriptive passages of dancing! She is expert in describing this artform with a keen sense of the visceral experience of dance. I realised that my legs and feet were flexing and moving as I read, and I do love a book that transcends the brain barrier.  I enjoyed Abbs’ turn of phrase; sometimes, I felt she was touched by a Joyce-ian way with words which added depth and relevance to the experience of reading this book. It was immersive.

I so loved the characterisations of some of the artists I had studied as a teenager. That world of Bohemian Paris, where artists came for freedom and connection, was painted with a vivid hand. I felt like I had stepped inside my Guggenheim exhibition. That I could walk alongside Alexander Calder and listen to him expound on shape, form and movement. It was transporting.  And when the time came to explore the deeper psyche of Lucia, Abb’s sensitive writing captured the child Lucia with care. It was emotionally difficult to read, but a necessary and bittersweet journey with Lucia through the dark travails of her mind.

Most of all, I loved that Abbs gave Lucia’s story an audience. I doubt that before reading this novel, I would have read Carol Loeb Schloss’ biography of Lucia Joyce’s life, To Dance in the Wake. But now, I will. Lucia is a woman of history, of art, of feminism, whose story should be told. Abbs’ story of Lucia; childhood trauma, repressed memory, subjugation, dysfunctional family relationships, unrequited love, unfulfilled ambition and incarceration… I am certain is an echo of the many women whose independence and freedom were stolen during times when mental institutions were dangerous places and Psychology a fledgling discipline.

My own Great Grandmother was institutionalised when her children were very small. Now we assume she had undiagnosed postnatal depression. But I wonder who she really was, and now there is no way of knowing. These stories should be told. These voices should be heard.

I recommend The Joyce Girl. Thank you Annabel Abbs for writing this important novel.  I will take it with me on my own metaphorical dance of independence and freedom.

 

Source: https://upload.wikimedia.org/wikipedia/commons/0/07/Lucia_Joyce_dancing_at_Bullier_Ball_-_Paris%2C_May_1929.jpg
Source: https://upload.wikimedia.org/wikipedia/commons/0/07/Lucia_Joyce_dancing_at_Bullier_Ball_-_Paris%2C_May_1929.jpg

 

Top Tips for Chronic Illness Patients

These are my best ideas for dealing with chronic illness.  Got some I haven’t thought of?  Share your ideas in the comments, I’d love to know your thoughts…

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Learn: find out for yourself, anything you can on your condition so you can make good decisions about your care.

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Manage the symptoms:  follow the recommended treatments given by doctors, including taking all medications at the correct times. Use an alarm system or app to help you remember.
Plan for proper nutrition, engage in a recommended exercise program if you can.

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Observe:  Know what triggers your symptoms, if anything. Learn to pace. You know your limits better than anyone else.  Sometimes, challenge your limits a little. It’s okay to try things to better assess your capabilities as they change.

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Rearrange:  Identify the things in your home that can be re-organised to make daily tasks easier. eg. We have just installed a high bench in the laundry so I don’t have to bend down to do the washing. Changing things can help you maintain more independence.

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Enquire:  Ask away! Ask your doctor, social worker and anyone else involved with your care about the services available to you.  Ask online support groups for advice. These people have often been navigating these waters longer than you.  They will have invaluable ideas to help.

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Talk:  You need to continue to talk to the people in your life who are involved in your care. Don’t give up on expressing your needs.  If they don’t know, how can they help?  Just make sure you also keep up the listening part of the communication equation.  The talking and listening is so important, especially in your primary relationship. Try not to shy away from the hard conversations, persist with them until you find resolution, because in the resolution you’ll find peace and connection again.

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Redefine: what your roles and responsibilities are.  Discuss these with your partner, family, friends.  You might need to sometimes be assertive to help people understand the things you can and can’t do.

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Prioritise:  Decide what really matters to you in any given moment and congratulate yourself for prioritising that.  See if you are spending too much energy on tasks or people who are detrimental to your wellbeing.  It might be time to take some things out of the picture.

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Plan:  set realistic goals for your day and try to adopt a kind of structure. Eating at regular intervals can be hard to manage, but it is really important if you are taking medications.  Plan your food in advance whenever you can so that it will be easy to get to and eat. You might need to ask for help to get your food organised for the day. Avoid spontaneous activities if you don’t have the supports or circumstances in place to make it work for you.

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Reinforce:  how valid and useful you are by finding ways to empower yourself.  Being creative is a wonderful way to remember how unique and special you are. It’s also a great distraction.  Find ways to express your own skills and talents and explore all the ways you are able. This detracts from the focus of all the ways you feel dis-abled.  Think of things you can do and get into doing them.  For me, it’s writing… blogging has been a wonderfully empowering tool.  And I can do it in bed!

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Reframe:   Taking a different perspective from the negative is a powerful tool of choice. Being positive can be as simple as seeing the humorous side of a situation or reaching out to someone else who is suffering with some encouragement or acknowledgement. It can make an enormous difference to your emotional well-being.

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Distract:  If you like to be in control, this one is for you.  Man-handle your mind’s focus on your illness by wrestling it into another thought pattern.  Use some strategies recommended by psychologists. Listen to music, do some art, write; get your brain and fingers busy.

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Relax:  Stress worsens the experience of symptoms and leads to increased tension.  Deep breathing techniques, massage, meditation, yoga, tai chi are some things you could try (depending on your physical ability) to improve your relaxation.

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Laugh:  it’s the best medicine. If nothing in your daily experience is tickling your funny bone, seek out laughter.  Search online for funny videos, comedy channels or TV series.

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Get support:  It’s totally normally to be emotional about being chronically ill.  Of course you are!  There is grief for yourself, but also you may find self-blame, anger, frustration, hopelessness, despair.   Seek help among those dealing with your illness.  If you can, find a support group, online or in person. But also, use the mental health help-lines or seek professional psychological help. Friends, family, fellow-sufferers and health professionals can all help you find ways to let go of the sadnesses and find a pathway through.

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Let it Go:  take steps to accept that the old definition of yourself and your old life, prior to becoming ill is no longer relevant to this time you are walking through. Let yourself redefine and create a new meaning and purpose beyond your illness.  I have found that asking by myself  “What sort of person am I?”  rather than “What do I do?” I have a good starting point for this process.  Letting go is not something you’ll do once.  You’ll let go in stages, or you’ll let go over and over.  Just keep your focus on who you are. And be kind to yourself. This letting go is tricky.
*Are you in New Zealand?  If you are and you are registered with a ProCare GP, you may be eligible for funded sessions with a psychologist (no cost to you).  You can find out more about this service by contacting ProCare Pscyhological Services or your GP.   www.psychologynz.co.nz
Some health insurance policies cover psychiatric services or there is always the option to pay for the services of a qualified psychologist.  Call your insurance provider if you have questions about it.

Chronic Illness.  Top tips for dealing with chronic illness.

Passing Privilege

Unless you are brand new to this blog, you’ll know that I often refer to ‘Invisible Illness’ or even ‘Invisible Disability’.  I feel like my purpose is to lend a voice to all the people who suffer, in plain sight, with no one seeing what’s wrong.  I want to shine a light on the situations unseen by people busy with everyday life. The last six years have opened my eyes to an entire community within our community.  People who fly beneath the radar, struggling, suffering and desperately in need of kindness, compassion and understanding.

Invisible illness is any illness that isn’t visible or apparent.  The sort of situation where you have what they call ‘passing privilege’.  You can ‘pass’ as normal in a group of people. I am not so sure I would call it a privilege.  But if I look at it from the perspective of someone who has no choice but to be identified by their illness or disability, I guess ‘passing’ could indeed be a privilege.  But it is all relative.

The problem with ‘passing’ is that no one knows.  And if people don’t know you’re struggling, how on earth can people lend an ear, or a helping hand?  Worse, how will they know to hold back their impatience, intolerance, their rudeness? I have heard countless stories of people being treated rudely and with a harshness that would be hard to bear even if they were well. How much more soul-destroying such encounters can be when your whole existence is already an exercise in forebearance.  Worryingly, just-one-more incidence that confirms people just don’t understand can be the straw that breaks the camel’s back.

Recently over in the States, the Dysautonomia community lost a young lady to suicide.  Christina Tournant had POTS, and her final note expressed that she just couldn’t fight anymore.  All reports describe her as a high achiever, a great friend, a go-getter. You can see for yourself just how beautiful. She was at home on extended sick leave from university when she took her own life.
It can be so overwhelming, dealing with an illness nobody can see. You might fight for the short times you are upright around others and crash when you can do no more. You might push yourself far beyond your limits because the expectations of others are based on what seems superficially apparent.  You seem well, so why can’t you..? Carrying the burden of ‘passing’ can become too great. Feeling like you are falling behind your peers, letting your loved ones down, it’s painful.  Fighting your fight out of the sight of the community at large can be extremely isolating.

 

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Sharon recounts a recent bout of severe depression that afflicted her daughter, who suffers with a form of Dysautonomia.  Sharon was desperate to find help for her and turned to a patient forum on facebook:
I asked for help the other day for my daughter who was having, for the first time, waves of shocking depression that were out of her control. The responses I got were heaven-sent. I took her to emergency on Sunday and they were about to discharge her, back to her misery, when I suggested a drug that was suggested by a member here. I am thrilled to say that it worked a treat and the doctors were shocked. Sunday, there was no hope and on Monday, there was light again in our lives. So, we all learned that you NEVER GIVE UP….you never know what tomorrow will bring. Now we know what depression is really like. That you need to just sit and hug the person and let them know that they are not alone”.

Ana experienced such depression first hand when she was admitted into residential care. Ever since I can remember I have not wanted to be dead. But having an illness that no one understood, being so frustrated with its variability at a moments notice, and not being able to properly be a mother, I considered suicide. More so to enable my husband to then be “free” to have a proper wife and the kids to have a proper mother. But then two things happened.  I began to see a psychologist and I discovered an activity I could do with my limitations.  I began to sea-kayak when I could. I remember spontaneously laughing for the first time in 5 years when I had waves roll over the bow and crash into my chest. It was the best! I felt so free and alive, at one with nature. This was a major turning point in my life”.

We are so fortunate to have access to professional psychological help (see my post here about how to access this if you are in New Zealand) and there are additional wonderful supports available for people with invisible illness.  I can’t recommend highly enough, like Sharon, finding your people in facebook groups!  Finding online forums or patients groups will provide you with the sort of first-hand-experience/wisdom from others who have been where you are. Look for groups with excellent group guidelines to protect against anti-social behaviour. And remember, social media is all about making contributions.  Don’t just post about yourself, interact with the posts of others.  It is phenomenal the wealth of support, solidarity and good cheer you can find by connecting with others like you.

If you can’t find a group, start one for your area. As wonderful as online support groups can be, having the opportunity to meet up with others in real life is worth the effort. It’s also great to meet locals like yourself because they will have information to share about their own medical journey, the people they see and the pathway they’re travelling.  Ask in your online patient groups.  Put the word out.  Collect names of people living in your locale. Another bonus is that you will have some of your only social encounters built around your needs. There are a group of people here in Auckland that I have met up with.  We call ourselves the Auckland Recliners, because that is what we do!  Every now and then, we meet in the park, lie around on rugs, bring our own pillows and enjoy the respite of complete understanding.  It’s a beautiful thing, finding your tribe.

Even if you can’t get out to services easily, we have a wonderful telephone help service in New Zealand for people struggling with destructive thoughts.  If you are one of the people struggling because you ‘pass’ as normal, if you feel invisible, alone and are thinking scary things, please get help.
Phone Lifeline on 0800 543354. Life with illness doesn’t have to remain a purely deficit situation. There are things about life with illness that can lead you to a more rewarding quality of life.  It’s not always easy to see, but connecting with people who can help you is a great place to start.

And if you are not ill, but you care,  take time to listen to the answer to “How are you?” next time you ask it.  Read the body language of your friends. Approach from a place of open connection. Ask further questions, consider the fact that there are many in our world who suffer in spite of looking well. People endowed with the dubious ‘privilege’ of passing beneath the notice of others. Get to know the people in your circle. Find out. All is not always as it seems.