Life in the middle; learning to live in the in-between.

Do you realize that all great literature is all about what a bummer it is to be a human being? Isn’t it such a relief to have somebody say that?

Hello babies. Welcome to Earth. It’s hot in the summer and cold in the winter. It’s round and wet and crowded. On the outside, babies, you’ve got a hundred years here. There’s only one rule that I know of, babies – God damn it, you’ve got to be kind.

Kurt Vonnegut

What’s in store for me in the direction I don’t take?

Jack Kerouac

Eva’s now finished round six of eight chemotherapy. We’ve settled into a groove: trepidation, slow decline, feeling like life’s moving at a snail’s pace, gradual improvement, returning of some degree of energy, better appetite, and three to four days of living as normally as possible. And then it goes again.

But we’re comfortable with this. We have found routine in the unsettledness, and we realise what routine-seeking beings we are.

Now the circular pattern reveals itself to be more of a spiral; we’ll call it an upwards spiral, like a long stairwell found in the tenements of Edinburgh. At the bottom, the five or six floors loom overhead, and the slightly dank smell drifts up to the frosted skylight fifty or sixty metres above. The broad, worn, cold stone steps which have been there since before Victoria was queen lead up and up and up.

So we’re ascending, but it’s an ascent towards getting Eva’s breasts chopped off and the premature end of her fertility, which is a weird thing to ascend to. We’re seeing the surgeon this evening, and Eva will discuss with him about getting a double versus a single mastectomy, prior to six weeks of a radiotherapy and then getting her ovaries removed – the latter to ensure there’s no rogue oestrogen floating around encouraging any remnants of oestrogen receptor-positive malignant cells to blossom and flourish.

Many people talk about the journey of cancer, or the journey of life, or the journey of a relationship, or even the ultimate journey: X-Factor (or whatever your country’s equivalent is). All of which implicitly imply this teleological, forward-moving, arrival-seeking, and goal-oriented process.

I’ve been reflecting on this living in the journey. Or another way of phrasing it is: to be living in the middle of what is happening now, without focusing on a destination or achievement. I have been considering this for a while (the past couple of years), but perhaps less consciously so. At the grand age of 35, I have an acute awareness of that well-known principle of time: as you get older, time speeds up. I’m actually a bit terrified of these 80 or so years being swept away from under me and forgetting to enjoy the ride as much as I should because I’m thinking about the destination of each stage. These last three months have thrown an anchor into the rushing current of life and have caused us to slow down and observe ourselves, our children, and how we manage this as a family. For this I am truly grateful. When all this started, I said that I did not believe that Eva’s breast cancer was somehow intrinsically meaningful or sent to teach us something by the cancer deities, but I was open to learning things through it.

So what are some examples of this difficulty we all experience trying to ‘live in the middle’ instead of just waiting for an end point?

In no particular order:

Children – waiting to have children, for children to grow up, for children to move out or move back in, or children to have grandchildren. Waiting for them to start school, complete school, to start university or complete university.

Career – waiting to get that promotion, to get a job – any job! -, or to become a millionaire so that THEN the dream can be pursued. Waiting for career aspirations and goals to happen, despite not working in a job that is enabling them. Tolerating a job that is having an adverse effect on our health because of a hoped-for end point of change or improvement or recognition.

Partner – waiting to meet The One, or waiting to leave the one you thought was The One, or waiting for The One to change into a better One.

Health – waiting to find the time/motivation/energy to improve our health. Waiting for that ten-day silent retreat to enable us to quieten the busyness of our minds. Waiting for our family’s eating habits to change so we can eat more healthily. Waiting until after the birthday or holiday or a religious feast until we change our diet or physical activity levels. Waiting until the kids are older or work is less busy or time has expanded until we improve our health.

Capital – waiting until we have The House to enable us to feel settled and comfortable. Waiting until we’ve worked hard enough to get a deposit together to buy any house to get on the property ladder to climb towards The House to make sure we are safely housed in forty years from now. Working this hard now for security then.

I’ve been doing a lot of soul searching the last weeks. It probably got a bit too much at times; my mind was whirring 24/7 and I was finding it difficult to be present in the moment. This time off work is for me to look after Eva, provide stability for our children, and to look after myself, and what I found was that the last months I have been waiting in the middle of a lot of situations; medical training to finish, cancer treatment to end, eldest child to start school, our baby to sleep through/sit/crawl/walk/talk/triple jump, my novel to be finished. Waiting, waiting, waiting.

And this rush to be finished is driven by anxiety. It’s driven by not feeling comfortable with the discomfort of lack of control and the inability to hurry the natural unfolding of life. It’s driven by the desire to achieve more, gain more control over our future, and the fear of missing out on.

So I have been learning about slowing down and sitting with this discomfort. It has had a very practical application: waiting whilst Eva goes through energy-sapping, life-changing treatment that is ploddingly regular. Just after I had charted my career path for the next three years (to the end (see?) of what has been a rather tortuous journey which formally began 16 years ago when I started studying) which would result in arrival at Fellowship, Eva’s diagnosis exploded my plans and halted this conveyor belt. After nine years of studying, and six-and-a-half years of working as a doctor, this enforced break is throwing up questions and possibilities that would have otherwise escaped me.

I’m learning that in the midst of illness and disruption to life’s usual pattern, as my career is put on hold, as we contemplate mortality and changes within our family, that there is a rich life to be lived. All the usual human emotions – love, sadness, anger, joy, – persist. The same things that brought meaning to life before are those which bring meaning now. Regardless of not getting on that elusive housing ladder, not making voluntary contributions to my super fund, or being able to ‘ensure’ I’ll rest easy when I’m 65 – and THEN I can slow down and have time to pursue what I want to in life – meaning and fulfillment are present here and now. Eva and I have never been particularly interested in material wealth or owning a house as soon as we could, for the very reason that to pursue that at this point in our life would mean sacrifices in other areas: Eva having to go back to work due to financial obligations rather than out of career choice when it suits her and our children best; me picking up more out-of-hour shifts, or choosing a more lucrative career in the city. Our choices have been to give us freedom in the present, and to be able to reduce stress as much as possible. We have not been stress avoidant (Eva’s a high school teacher, I am a doctor – not careers associated with minimal stress – and we moved to Australia with a seven month-old baby four and half years ago), but have tried to maintain freedom from financial or career or general social pressures to conform to expected norms.

And these ‘norms’ may be partially projected by us; we cannot solely blame others or society in general. The last months I found myself slipping in to thinking, ‘maybe if we’d just had $50,000 of savings lying around this would be less stressful’; or, ‘maybe if we owned our own home this would be less destabilising’; and initially, even the thought, ‘maybe if we didn’t have a baby this would not be so terrifying; he needs and deserves so much and we might not be able to provide this’. This is a thought that quickly altered as we gained the confidence that we would be able to provide the stability and love for him which we wanted, along with that for our eldest child, despite feeling emotionally and mentally fragile. As an added bonus, he brings joy and light into our lives and his big sister’s, which has been a daily boost to us. Nothing like baby cuddles and laughs to cheer you up. And we learned from our eldest child’s vivaciousness and energy and ongoing good humour that their needs are still fairly simple – if time-consuming, patience-trying, and energy-sapping.

This morning I’m sitting here after we met the surgeon last night. Eva had a good outcome from it; he agreed to do a double mastectomy which is what she has decided she wants. The road is far from traveled, but we are learning that in the travelling is where the joy is found. We have no idea where the destination will be, which is often exciting, occasionally unnerving, but ultimately we cannot control this. We can make decisions for today. We can decide to be creative, or to immerse ourselves in nature, or do something good for our bodies, or be present with one another and our children, or pursue new ideas and dreams. These are the things which we can invest in (I hesitate to say ‘control’ as seeking control is often counter-productive) and our belief in ourselves, the love of others, the benevolence of the universe (and all spiritual components which that may or may not entail), and the general beauty of life make us positive about our ongoing journey until our final destination.

Sometimes life is no more complicated than sitting at the window, writing, looking at the sea and sky, and drinking from your favourite mug. That’s where the living happens. Happy life in the middle, people.

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Tit tattoos and apricot kernels; vulnerability in action

‘The Way of Openness is about embracing and welcoming and being curious about whatever is in front of us, staying in touch with our feelings, and being open to the constantly changing nature of what comes at us. This Way is not easy, but neither is the life of running from discomfort and uncertainty, as we’ve seen. This Way takes practice. It takes courage. It takes love…

In the end, this is about whether we want to go through life running from what we find and seeking comfort, or whether we’re going to find the courage to be open to everything, to finally be free of the running. In the end, we find that there was nothing to be afraid of after all. It’s a wonderful place to be, this changing, uncertain, uncomfortable and miraculous world.’

Leo Babauta, Zen Habits

My wife is on day three of her fifth round of chemo for breast cancer. She started a new type of medication this week. We had gotten ‘used’ to the vague pattern of events with dual chemotherapy drugs she received for her first eight weeks of treatment; nausea and headache, tiredness and sleeplessness, loss of appetite and lethargy. We were starting to get a grip of the pattern of the fourteen days between each round of chemo.

And this week it is all change, again.

Now she is also thinking ahead to surgery. Single versus double mastectomy. Reconstruction or flat or prostheses (she’s considering tattoos over the scar(s); I’m thinking two large owls, with ‘two-tit-tattoo’ written in large letters for when people stare on the beach.) And she’s trying to figure out what the post-operative period will be like with a 14-month-old the size of a bull mastiff running around. And what will six weeks of Monday to Friday radiotherapy sessions be like at the hospital thirty minutes away? And how will menopause be? And will she miss her ovaries? And, and, and.

And so we find ourselves grasping at straws, seeking for definites in a world of shifting shadows.

For me, this period of change and chaos has thrown up a lot of questions about meaning and direction. Our two children, a five year-old who has just started school and a ten month-old just starting to walk, are a grounding, stabilising presence in their vivaciousness and neediness and joyousness and uninhibited expressions of emotion. (This morning, Friday 6am: it is the end of the third week of school and tiredness is evident; I had to console my distraught daughter who was unable to create a haute couture dress from pieces of felt for her doll. And then we embarked on this masterpiece, thank you very much):

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This enforced staying open is necessary and good. One of my favourite writers, Brené Brown, in her book Daring Greatly, says:

‘Leonard Cohen writes, “Love is not a victory march, it’s a cold and it’s a broken hallelujah.” Love is a form of vulnerability and if you replace the word love with vulnerability in that line, it’s just as true. From calling a friend who’s experienced a terrible tragedy to starting your own business, from feeling terrified to experiencing liberation, vulnerability is life’s great dare. It’s life asking, “Are you all in? Can you value your own vulnerability as much as you value it in others?” Answering yes to these questions is not weakness: It’s courage beyond measure. It’s daring greatly. And often the result of daring greatly isn’t a victory march as it is a quiet sense of freedom mixed with a little battle fatigue.’

This week I’ve been experiencing some of that quiet freedom along with battle fatigue. It started off with a couple of days of confusion and feeling aimless and wandering in a couple of areas in my life. Perhaps not aimless but struggling to choose one way out of about five options, and despairing at this new area of uncertainty and potential change. But then small glimmers of freedom started appearing.

I spoke with a guy whom I respect who is at the forefront of yoga in Australia – Duncan Peak. He is a world-renowned teacher and comes from a military and footie background. I reached out – an act of vulnerability – and he responded. I was reminded that through sharing and connection, when we are just ourselves in all our plainness and lack of specialness, the goodness and selflessness in others often presents itself. I think the opposite is true; when we remain closed and suspicious and fearful, or inauthentic and defensive, we do not elicit the kindness and love of others.

A few days later a neighbour – whom we’d never met before – turned up at our door. She had come across this blog and wanted to share with Eva her story of breast cancer. She spoke openly and honestly, with great humility and sensitivity. Again, vulnerability here lead to vulnerability and connection in person.

About two months ago I sent one of these blog posts to the Huffington Post asking about the possibility of it being published. After Elephant Journal published one post, I didn’t think any more of it. Until I received the email from Arianna Huffington yesterday saying she’d like to publish it. Again, this openness and vulnerability led to outcomes which were simultaneously scary and exciting.

Doors creep open, new friendships are born, deeper connections are made as we are curious and accepting and reaching out to the world around us.

It’s an ongoing struggle to accept the unknown, not be attached to definites, and to simultaneously approach this whole tumultuous experience with an attitude of curiosity and vulnerability. It is so much more tempting to close up shop, become hard, put on our game face, and attack this in a military-style onslaught of energy and aggression and overt shows of rejection. It’s humbling to remain open to others, the kindness and love, and even the unsought after advice (nice article sent to me this week advocating apricot kernels over chemo and radiotherapy because tumours love sugar in apricot kernels and then the cyanide in the kernels is released and kills the tumours. Who knew?)

Openness, vulnerability. Two fuzzy words with edges of steel. Nice concepts which are painful, at times, to embody. My mantra during a yoga session this week was:

I inhale strength and life;

I exhale fear and confusion.

Which could be rephrased:

I inhale true vulnerability;

I exhale disconnection from my self and others.

Wishing you connection, openness, and authenticity in your journey of vulnerability.

What is resilience, and how do we develop it?

If I never felt these extraordinarily pervasive strains — of unrest or rest or happiness or discomfort — I should float down into acquiescence. Here is something to fight; and when I wake early I say to myself Fight, fight. If I could catch the feeling, I would; the feeling of the singing of the real world, as one is driven by loneliness and silence from the habitable world… Anything is possible. And this curious steed, life, is genuine. Does any of this convey what I want to say? But I have not really laid hands on the emptiness after all.

Virginia Woolf, A Writer’s Diary

It’s no secret that pain, grief, and loss can provide opportunities for growth. I firmly believe they are not ‘put there’ to teach us, however. I think that is a belief of wearied humans who seek to explain why ‘bad’ things happen to ‘good’ people. I am interested as to how we can engineer a difficult or sad or hurtful situation to create a positive outcome. We are familiar with the maxim, ‘what doesn’t kill you makes you stronger’, but we are also aware that that is not true for many people. It’s good to acknowledge that tragedy can break people, and if it doesn’t kill them, their lives are irreparably damaged by these events.

So what can allow some people to develop a positive reaction to pain, and why are some people unable to do this? I think the difference is resilience.

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The concept of resilience wallows somewhere between the fads of green smoothies, CrossFit, mindfulness, and feng shui. So what is it actually? Among a number of definitions, this is one by Dr Ann Masten, a clinical psychologist and Regents Professor at the Institute of Child Development at the University of Minnesota:

‘Resilience refers to the capacity of a dynamic system to adapt successfully to disturbances that threaten the viability, the function, or the development of that system…I think it is also the kind of definition you can use across system levels, from a molecular level to the levels of human behavior in family, community or even societal contexts.’

During the last two months since Eva’s diagnosis with breast cancer, we have reflected a lot on whether we are ‘coping’ or not. Of course, coping is relative, and can be judged in many different areas. For us, our main areas of concern have been our own mental health, our relationship with each other, and our parenting of two small children.

And there have been some really dark days of feeling like we are not coping, or will not be able to cope, or are ‘failing’ to cope; and then there are other days we feel like frauds and feel like we should not be able to laugh or go out for breakfast or do stupid dances in the living room, because you shouldn’t do stupid dances or eat eggs benedict if you have cancer. You should be sad. Which makes you feel like you’re not coping. Etc etc.

Last week was particularly tough for us. Eva’s chemotherapy had to be cancelled because one of her subtypes of white blood cells, which are responsible for defending the body against acute infection, were dangerously low due to the chemotherapy’s effect on her bone marrow. We didn’t find out until we were at the hospital and Eva was sitting in the chair about to have her intravenous line inserted for the infusion. When the nurse threw her head on to the desk and said ‘oh no’ loudly (always an encouraging sign when a health professional does that, and which I’m sure I have done myself), we felt slightly unnerved.

We left the hospital with instructions to repeat Eva’s bloods in a week to see if they had normalised sufficiently to carry on with her treatment. Eva was in tears, and I joined her when a lovely old lady came up to us and gave us some encouraging words about getting through this, telling me I needed to be strong for Eva (as my chin wobbled and eyes sweated and I looked at the fascinating sign on the toilet door), which again reminded us that people are gorgeous.

The week was a mixture of a reprieve from the harrowing effects of chemo on Eva’s body, and the subsequent G-CSF (bone marrow booster) injections which make her feel like death warmed up. However, we fell into this limbo of waiting for the next stage of treatment, having been prepared for her last round of this type of chemo, and thereby having completed half her chemotherapy. Now, it was a waiting game. With the added excitement of trying to avoid any infection which her body would have minimal resources to be able to fight. We both fell into pretty low moods: deflated, tired, anxious, irritated, and general pissiness at the state of things.

But…we are still here. We still were able to engage in our daughter’s first day at school today. We are geared-up for recommencing chemotherapy tomorrow (neutrophils 3.47, thank you very much). We have made the decision that I will remain off work until Eva has finished treatment (kidneys for sale over on eBay, under the advert for mediocre male escort with odd accent available for $2.99/hr anywhere in Australia if Greyhound bus fares are included).

And life goes on.

I think there is nothing remarkable about how we are managing. My over-riding feeling about how I’m coping is one of ‘sounds reasonably together when he writes, but could do better; hides feelings of imminent mental breakdown due to some weird male pride and inability to articulate thoughts and feelings verbally.’

But here are things which are helping us to ‘adapt successfully to disturbances that threaten the viability, the function, or the development of that system’ – or build resilience, for short:

  1. Connection with actual human beings (in real life, not just WhatsFaceInstaTwittaLinkWeirdosAnnonymous)

And this human connection is TOUGH. It takes effort – effort by others (and thank God they’re making it) and effort by us. It is energy-draining and mentally taxing to try and communicate about how we are really doing, trying not to sound like a broken record or a wet lettuce. Not wanting others to feel uncomfortable by offering platitudes or not knowing what to say. Not wanting others to feel stuck or like they can’t say the right thing. Trying not to say platitudes ourselves, or say stupid things that we don’t actually think or feel.

But when we do…it is good. Eva has been better at this than I, but it is particularly tough for her during chemo weeks where communicating at all is an effort. I have made the decision to talk to someone professionally to help me process things a bit better, as well as make more of an effort to engage with friends face-to-face, or at least Skype-to-Skype. I also went out for a few drinks with a bunch of great guys on Saturday night for the first time in forever and a day, and I was surprised at how just having a laugh and making jokes about ways to confuse your Fitbit made me feel a whole lot better.

So, it’s psychology 101, but we need relationships to build resilience. Plugging on by your self, no matter how busy you are or how undeserving you feel of someone else’s time or ability to withstand your uncomfortable feelings – will not be helpful in ‘adapting successfully to the disturbance that threatens your viability’ (I think that could be a catchy title for a book on resilience aimed at men – ‘Adapt Successfully to the Disturbance that Threatens Your Viability!’, as opposed to ‘Making Your Inner Child More Resilient’).

2. Relaxing

It’s difficult to relax when you have cancer, treatment is beating the shit out of you, you have an oblivious 10 month-old, a dynamite-fueled 5 year-old, and you are trying to manage every-day life as well – which in and of itself is challenging enough. In my case it has included making decisions about work, how to make it viable to stay off my day job for some more months, how to get my daughter ready for school, how to make sure Eva feels as supported as possible and gets time to herself and does something nice now and again and gets some time for gentle exercise, and ensuring that I get some exercise so I don’t have a stroke in ten years’ time (yes, still catastrophising and imagining ten year-old Luca and 15 year-old Mia looking after their terminally-ill mother and hemiplegic, dysphasic father) and don’t melt in a ball of un-exorcised muscular tension and mental stress.

So relaxing, huh? Practical ways for us have been

  • yoga (thank you, thank you, thank you, India, for letting us bastardise and pervert this beautiful practice so I can do it online in my living room)
  • beach walks and swims (only possible in certain parts of the world; likely to cause greater stress in Scotland)
  • good food (eternally grateful for ongoing supply of cooked meals from incredible friends and community members, some of whom we’ve never even met)
  • nature (get your feet in some sand or mud or wet grass, and stare at the trees and smell your herbs – not THOSE herbs…well, actually… – and get hot or cold or wet and get away from where you are usually);
  • massage (check out Graeme or Geraldine’s magic hands at http://www.pureprana.com.au/ if you’re on the Sunshine Coast, also great for yoga. I’ve never once regretted one dollar spent there);
  • reading (an actual book, with pages, that you can hold in your hands and everything)
  • exercise (I bought some gymnastic rings just before Christmas as I could see getting out of the house to do exercise was going to be tough. Think of a walrus doing pull-ups and you’ll get a good idea of my current ability.)

There are lots of other ways, but you ain’t going to be resilient if you don’t build in relaxation.

3. Mindfulness and Meditation

Okay, mindfulness is about as clear as resilience which is about as clear as what Kim Kardashian does for a living (I am honestly not joking when I say I have NO idea who that lady is; all I know is she balances champagne glasses on her buttocks).

Mindfulness is NOT emptying your mind. Mindfulness is NOT an inactive and passive state of avoidance. Mindfulness is NOT relaxation. Mindfulness is NOT mindlessly colouring in mandalas (but it could be mindfully colouring in a mandala, being aware of the colours and hues, the feeling of the pencil on the paper, the response that you’re feeling to creating something beautiful).

Mindfulness is:

  • being aware of your thoughts – how often does someone ask you what you’re thinking about and you don’t know because it’s some weird and wonderful array of unconnected events which you can’t even keep a track of for three seconds after? Are you thinking about what you said yesterday to your boss? Are you wondering about what the scan will show? Can you not believe what your boyfriend said to you? Are you incredulous that that 98 year-old lady cut you off at the roundabout? Be aware of those thoughts, and let them pass through your mind without getting caught up in them. Don’t judge them as good or bad, as you then waste energy in an arbitrary, subjective weighing process. Thoughts are just thoughts; they have no power until you give them power.
  • being aware of your feelings – I used to have to use my wife to tell me what I feel. Which was usually at the end of a long, drawn-out argument where she had initially asked me why I was so grumpy, and I refused to believe that I was grumpy, until she talked me through why I was perhaps angry or scared or disappointed, etc etc, which I refused to acknowledge, until it was blindingly obvious even to me that I was grumpy because I was angry, scared, and disappointed after three hours of arguing with this fiercely intelligent lady. In the absence of a sensitive partner, start by giving some names to some of the feelings that you feel. Alexythymia (an inability to feel anything) is a pathological state which needs to be addressed and explored by a doctor, but an inability to name and identify feelings is very common. If you find it hard to identify what is anger or fear or irritation or sadness, give the sensation you are experiencing some other name that you can relate to. Even call them after animals and describe what they’re doing, e.g. ‘my tiger is prowling’, or ‘my giraffe is falling over’, or ‘my possum is hiding’. (We could make lots of humorous inferences from these, but I am far too mature for that.)
  • being aware of what is going on in your body – is your head tight? Is your stomach churning? Are your shoulders tense? Is your back uncomfortable? Are your hands tingling? Be aware of what makes these sensations better or worse, and ‘make room’ for them. We naturally react to perceived negative feelings in our body as a sign of impending illness or pain. This is obviously very helpful in many circumstances (e.g. central chest pain radiating to your neck and left arm with associated nausea and clamminess – phone 000/999/911, and then be mindful of these symptoms in the ambulance), but when we are already stressed, anxious, sleep-deprived, or it is on a background of years of difficulty identifying feelings, physical sensations can very often be related to our psychological state.
  • be aware of your senses – what can you hear? Where is the pressure on your body, and from what? Do you have a lingering taste in your mouth? Is there a faint smell of something – either pleasant or unpleasant (this is why yogis use essential oils; they eat so many lentils and legumes)? If your eyes are open, observe the space around you and ground yourself by naming five common objects – this is very useful if anyone has severe anxiety, or even panic attacks (which should be discussed with a GP or qualified mental health professional, not treated just by reading a cancer blog).
  • and accepting your thoughts, feelings, physical sensations, and sensory observations with a non-judgemental and inquisitive mind – which is what I am particularly shit at. Damn it. But seriously, this is the hard part of mindfulness; paying attention to our internal state without judging it. We have been taught and have evolved to judge certain sensations and thoughts and feelings as inherently bad or evil or dangerous. This is not a philosophical treatise on morality, but a description of how our psyche views our internal experience of the world. It is more useful and interesting to notice, ‘I seem to be really concerned with what my boyfriend said to me; but I am going to let it go’; ‘I am spending a lot of energy on imagining the scan coming back with a horrible result; I am going to let that go’; ‘I am aware my stomach has been churning for the past few days; I am not going to be scared by this but will acknowledge it could very well be a physiological reaction to the anxiety that I feel about this upcoming scan, which I am deciding to let come and go through my mind.’

It may sound like you need to be the Dalai Lama to achieve this, but you can learn it in some easy steps, and improve your ability over months. It is important to note, however, that there are some concrete things which mean some people have been unable to develop reasonable levels of resilience, and may struggle to learn and utilise resilience-building practices. These include:

  • Substance misuse
  • Mental illness
  • Childhood adversity (including poverty, abuse – of any kind, exposure to domestic violence and substance abuse, and poor relationship (disrupted attachment) with a primary caregiver)
  • Trauma
  • Chronic physical ill-health

These should be discussed and treated by an appropriately qualified person or team to help the individual improve their chance of developing resilience.

Kind of a potted overview of resilience.

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*Featured image property of my wonderful friend and excellent photographer, and a man of great resilience, Andy Rudman.

2017: How do we live by our values this year?

In every life there comes a point when you have to make a decision about how you will live.

It is this broken road with pitfalls and sharp turns and unexpected traverses that has brought me joy and adventure.

– Alice Walker

 

Something Eva and I have spoken about at times over the last weeks is trying to continue living by our values, even when life appears to be sub-par on some fronts. This has often been in relation to parenting; aiming to still parent by our values even if energy is lacking, impatience is more prominent, or our general tolerance of little people is less than usual.

This morning Eva was discussing about aiming to ‘make friends with discomfort’ in 2017. For her, the discomforts are many and multifaceted and are not limited to the discrete physical symptoms associated with treatment for breast cancer. The complex psychological effects of living with this illness and its treatment continue to surprise us, as well as the inevitable emotional instability associated with tiredness and stress and anxiety. The previous night we sat through a monologue by a well-meaning gentleman who was recommending alkalinated water, manuka honey, and purple carrots (no joke) for the management of cancer. Now, I’ve no issue with alternative medicine, but I do have issue with a lack of evidence for a treatment. I drank at least two glasses of wine during this, and our host fortunately then brought out the port. Eva listened very graciously whilst I imagined creative ways of hiding purple carrots about his person. Might have been a kick-start for him making friends with discomfort.

At breakfast Eva and I discussed further this making friends with discomfort and amended it to making friends with vulnerability and discomfort. The last weeks’ journey has been one of vulnerability in different ways. The sensation of being vulnerable to a life-threatening disease process; the vulnerability towards treatment; the vulnerability of our family to this massive emotional and practical upheaval; the emotional and psychological vulnerability we have all felt as individuals; and Eva’s more complex and deep-seated vulnerabilities covered in other posts about how this process of cancer will change many things about her (see A head of hair, a breast, two ovaries, and a slice of identity; Cancer’s haul.)

Another understanding of vulnerability is how we have related to others through this. This blog has been a vulnerable process, sharing intimate and partially-formed and conflicting and uncomfortable thoughts, feelings, and responses. There was the paradoxical wish to protect Eva and our family and close ranks, with the desire to be open and honest and share the intricacies of this process, as best as we were able. We recognise our need to be open and to involve others, but this necessitates vulnerability as we accept help and kindness and love and care, of quite mind-blowing proportions. I have tried to understand why it is, at times, uncomfortable to accept the care of others. The superficial answer would be pride; it is at odds with our individualistic and self-protecting society. But I don’t think that is the over-riding feeling for Eva and me. I think the vulnerability partially relates to receiving something that we don’t know if we will ever be able to ‘repay’ to others, and accepting that it is not something that necessarily should be repaid. We have tried to be conscious that people enjoy caring and giving and showing their concern in the midst of this hairy bollocks situation, and do not want to disrespect them. (Doesn’t that in itself sound snobby and self-protective? ‘I allow you to help me so that you receive the benefit of not feeling disrespected.’ Boak.)

The fact is, for some people, and we include ourselves in that cohort, it is just scary to accept that people might simply be good, kind, loving, compassionate, generous, and, frankly, beautiful. We grew up with an oft quoted Bible verse ‘call no man good’, and it was instilled in us that we were all born in to sin, we are sinners who are inherently evil and deserving of death, and that soon God will destroy the world and take a chosen few to the new Jerusalem whilst the rest burn in the fiery lake for the rest of eternity.

Funsies. Quite the way to form the world view of a child, regardless of what one believes.

I know it is not easy for many to unquestioningly accept kindness from others, but it has been a great lesson and experience for us. It has demonstrated to us the strength in being vulnerable; as we reach out to others and they respond, we feel supported and not alone and cared-for. We have asked for and been offered help, and it has been given unreservedly.

This evening I was thinking about values in relation to something else. I came across a core values list (http://jamesclear.com/core-values if you want some ideas) from which I chose six which have been significant for me over the past two to three years, but which I want to cultivate and focus on living by in 2017. They are:

  • authenticity
  • balance
  • compassion
  • determination
  • inner harmony
  • optimism

Authenticity to continue being open with others to engender genuine relationship. Authenticity to acknowledge the discomfort and vulnerability, to work with it, and not to repress it. Balance in my attitudes, views and opinions. Listening to and wanting to learn from others (purple carrot man excepted (joking, he was very nice, but it was late, I’d drunk too much, and we weren’t up for stopping chemo and surgery for dodgy coloured root vegetables)). Emotional, psychological, spiritual, relational and physical balance. Compassion for my wife, my children, people I meet in the day-to-day, people who have so much less safety or resources than me, and so much more suffering. And some for myself too, as it makes sense that unless we are compassionate towards ourselves with our own weakness and foibles and character deficits, we will find it difficult to show the same to others. Determination to care for others, to pursue my goals, to work hard at whatever I’m doing, to believe that I can make a difference. Inner harmony obtained by paying adequate attention to physical, spiritual, emotional and psychological health, and living by my values in my relationships, job, and creative endeavours. And optimism, that people are, generally, kind and good and thoughtful and loving. (Don’t worry, I’m not deluded.)

Wishing you all perseverance and hope in 2017; the commitment and strength to live by your values; and a lot of success with purple carrots and a mobile water alkalinator (I know someone who can get you one).

 

 

Life is Now

“Rabbits (says Mr. Lockley) are like human beings in many ways. One of these is certainly their staunch ability to withstand disaster and to let the stream of their life carry them along, past reaches of terror and loss. They have a certain quality which it would not be accurate to describe as callousness or indifference. It is, rather, a blessedly circumscribed imagination and an intuitive feeling that Life is Now. A foraging wild creature, intent above all upon survival, is as strong as the grass.”

Watership Down, Richard Adams (9/5/20-27/12/16)

Eva’s half way through her second round of chemotherapy now. On the whole, the side effects were not as severe during the chemo week, which is likely due to a change in the bone marrow stimulating injection which the oncologist thought she may have had a delayed hypersensitivity reaction to after round one. We changed to a short-acting variant which I gave her once a day for five days after round two. This reduced the vertigo which was so debilitating during the previous round, and the scary experience of the feeling of face-swelling and bony facial pain. The nausea, loss of appetite, tiredness, and general lethargy continue, and the tiredness is worse now in the post-chemo week than it was first time around. She now needs to sleep for a couple of hours each afternoon, whereas in week two of the first round she managed days without a sleep.

But more insidious, difficult experiences of cancer have been raising their head. They’re complex and convoluted, much more so than we would have expected. Again, this is me trying to process what Eva’s going through, and any reference to what people have said is not a criticism of any one individual. It is a reflection of how we struggle to deal with the situation, as do other people. There is no finger pointed at others, as we also try and give ourselves space to figure out how to ‘do’ this.

Eva has lost most of her hair now. I think she looks beautiful, and Eva is not particularly hung-up about her appearance. She feels more comfortable not covering her head at present as she does not want to feel like she has something to hide, or she is covering her head to ease other’s discomfort at her appearance. She also does not want – at this stage – to be faffing around with scarves, trying to create a turban in the heat and humidity when we are trying to get out the house with two kids in tow. This lack of head-covering has resulted in some humorous interactions:

A: ‘Have you gone Hare Krishna?’

Eva: ‘No, I’ve gone chemo’

B: ‘How often do you have to get that done? Is it a one all over?’

Eva: ‘No, it’s chemo all over.’

C: [On meeting this stranger for the first time, who had been told she had breast cancer] ‘Are you coping? You are. Good, good.’

Eva: [half shrugged shoulders in response to the answer which person provided for her]

Well, humorous on one hand, but arduous on the other. It was a struggle to identify what one should or could feel when another woman tells her that it was ‘liberating’ when she shaved her hair off (when she was much younger, of her own volition). Yes, when Eva had her short hairstyle for one week she did enjoy the ‘freedom’ of it. Now it is a mark of not even the underlying disease process, but the treatment for this disease process. It is hard to always ignore the sideways glances from people – who mean no ill and are doing it almost automatically. It is hard to know what to do or say or feel when virtual strangers tell you that you’re beautiful, when in a way, you don’t really care if you’re beautiful or not; you just don’t want to be doing this life-changing treatment, at all, getting your boob chopped off, your ovaries wheeked out, and missing out on your baby’s first Christmas and, in some ways, his last months of baby-dom.

This leads to another internal conflict. Eva has to submit herself to an unpleasant and energy-sapping treatment every two weeks for an illness which she had not yet felt any negative effect from. This is a psychological struggle in some ways; of her own volition, she is entering this four-month stage of near hibernation where she has what is colloquially known as ‘chemo brain’, where she feels (much more) exhausted by two young children than usual, where being out of the house for a couple of hours results in a massive physical drain. She wants to enjoy life, but the energy to do so is so tightly allotted, that it’s a real consideration as to how she spends it. The oncologist describes it as the human body’s extreme inefficiency in its conversion of chemical energy into what we can use. She describes an elite athlete as being someone whose body runs at about 20% efficiency (the ability to exchange stored energy into a usable substrate). We mere mortals shuffle along, and can be knocked off our feet by a day or two of gastro or a strong viral respiratory infection. Chemo is like that for four months, to a greater degree, and it worsens over time. Eva’s body is easily exhausted. This takes a lot of getting used to for her who ran a very tight ship in our household and with our kids. And she struggles with the pseudo-guilt of leaving me to manage the children and other day-to-day chores of the house, and looking after her to some degree. I hope it is a good lesson for her; I suppose this is a benefit of having a partner or spouse – there is someone there whose job and pleasure it is to care for you and your home and your children when you are not able to. But it is a difficult change in role for her.

On a more relational level, she finds it difficult to relate to other people in a way that is comfortable for her all the time (which is admittedly impossible, but also something you probably just want when you feel like shit for weeks on end. Small talk and platitudes are about as helpful as a hairbrush to her just now). On one hand she craves human connection and understanding and communication; but on the other hand she is so tired at times that it feels too much of an effort to do so. She struggles to listen to others in certain circumstances due to ‘chemo brain’; it feels difficult to follow conversations, especially when several people are involved. She also – I think very understandably – finds it difficult to listen to what other people are struggling with in life. She is very much cognitively aware that others’ lives and struggles and difficulties continue despite anything that she might be going through, but she does simply feel too empty (at present – this may change over time) to listen to a lengthy explanation of another’s problem. This raises feelings of guilt and inadequacy – both common feelings at present – which in themselves take energy to challenge and rid one’s self of.

(Ad endum: I discussed this Eva at morning tea, and we concluded that this was not quite an accurate depiction. I’m acutely aware that this is my interpretation of what Eva tells me and from how I know her, but of course I will not always be able to accurately translate that to the written form. She is very brave (and trusting) in not censoring or editing what I write, which is often about her reactions and thoughts. So it’s more accurate to say that Eva loves hearing others’ stories when told with genuineness and self-insight and honesty. People who have done this have been an encouragement to her throughout the last weeks. What she struggles with is when others present her with worries or concerns which are an expression of their own anxiety. She finds this difficult, at present, because with chemo brain and her own life-changing illness, she is not cognitively able to engage with someone to help them process their own concerns at the level which she would usually. SM.)

On a more existential level, she feels simultaneously a pressure and a hope when she hears of other ‘survivors’ who found their vocation or calling or passion in life once through the other end of cancer. At present it feels enough to get through a day where she can have some pleasant interactions with a baby and a four year-old energy-bomb, eat enough, and try and get out the house. Never mind become a life coach or personal trainer or motivational speaker or write the next great Australian novel as a dynamic cancer-survivor-to-be. She’d like to just be able to play with her kids without feeling wiped out and frustrated and impatient.

Without delving into personal details, there is also a sense at times of, how much suffering is enough? These are not words that Eva has used, and are probably more a projection of my own when I look at Eva’s life. There are a litany of things which have happened in which make me think, fuck, give her a break. This is potentially rather simplistic and perhaps self-pitying and introverted. But really, what’s the play here? What is this achieving?

So today Eva had most of the day by herself to try and process some of what’s been going on. The last four and half weeks have been such a non-stop onslaught of information and new experiences and future decision-consideration, she has not even read the basic leaflets about breast cancer which she was given. She has not been able to write and work out her own thoughts and feelings. Thankfully, she has found this blog useful as it has been to her what I hoped it would be: someone who knows her well being able to try and order and express and organise this insane experience into some sort of coherent narrative when her usually razor-like brain has been too dulled and drained and overwhelmed to be able to have the space and time to do that herself. One of the nicest things she has said to me was that ‘it feels like [I am] holding a space for her’ with this blog.

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And none of this detracts from the things which we are grateful and thankful for: our friends and family who continue to convey their love and support; our two healthy, vivacious children; our wonderful health system; my understanding employer; our general comfort and safety and privilege in which we live.

It’s an imperfect situation, with us trying to muddle our way through the cascade of emotions and feelings. We struggle with ongoing anxiety which is a challenge to being mindful and present. We are communicating with so many loved ones, which again can disrupt our attempts to be present in the here and now. We are trying to parent like we want to with the normal challenges that come with having two young children. We don’t expect perfection from ourselves, but setting our expectations at the ‘right’ height is a never-ending game, changing from hour to hour. And a lesson we have been trying to learn in other areas of our lives over the last years is to do nothing out of fear: not to be reactive and controlling because of a real or imagined perceived threat. It comes back to sitting with our own discomfort and pain, the anxiety and worry, and being big enough for it. Being big enough to love children and one another as we wish in it. Being big enough to connect with others. Being big enough to live out that Life is Now.

A head of hair, a breast, two ovaries, and a slice of identity; Cancer’s haul.

This afternoon I shaved Eva’s head.

Her hair started falling out within hours of the second round of chemo on Tuesday. It was preceded by her scalp becoming exquisitely sensitive. Within hours she felt like her hair was ‘lifeless’ and just like an ‘attachment’. The last three days have been difficult for her as she has been picking clumps of hair off her arms or shoulders or neck. An eye-opener today was when our nine-month old son grabbed a fistful of hair out of her head. At this point Eva decided she wanted it shaved.

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For some reason, at some point in the past I had imagined Eva with short hair (probably catastrophising about her having cancer knowing me). And she rocks it just like I had envisioned. The photo doesn’t show it, but it is already patchy. We know that this is just another temporary step; a vague attempt at alleviating some of the inevitable inconvenience and discomfort that lies ahead. When Luca saw her he was completely unperturbed. Mia (4) came home from the neighbours and immediately said that it was ‘beautiful’, and that she wants hair this short too. She said it looked like a zebra because of the areas of patchy white amongst the dark hair. She was on the verge of tears in the shower when I said that we would leave it a couple of months before we consider cutting her hair shorter…

I decided to shave my head, too. Partly to demonstrate solidarity with Eva, but also because my personal grooming has been somewhat lacking the last weeks whilst being off work, and I was starting to look a little too mountain-man’ish. For the first time in my life I wore a cap when leaving the house yesterday purely because my head looked like a bush.

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The solidarity shaving may seem cliched and/or pointless, but when she sat across from me at lunch and said she wanted to shave her hair as it was ‘just depressing’ picking up hair all the time, I had a strong sense of not wanting her to feel more alone in this. It is her experience and journey, but we and our children are inextricably linked in it. I find the thought awful to imagine her being alone with overwhelming feelings or thoughts or fears; and it’s my place to share what I can with her, and accept what I cannot.

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The day before Eva’s second round of chemo, the gynaecologist phoned. He had inserted Eva’s Mirena (a hormone-releasing coil) a few months ago, and we had wanted to discuss with him whether this would have any implications for the prognosis of the cancer. The Mirena (if I remember correctly) releases a progestogen (synthetic progesterone); Eva’s cancer is largely insensitive to progesterone but is highly sensitive to (i.e. its growth is promoted by) oestrogen. He said that the Mirena would not be a problem, but that he was going to discuss with Eva’s oncologist the benefits of removing her ovaries. This is to remove the source of oestrogen, and to reduce the risk of Eva developing ovarian cancer in the future. Breast and ovarian cancer can share the same genetic mutation (BRCA1 and BRCA2). Getting breast cancer at the age of 36 makes it highly likely that Eva carries one of these genetic mutations. Likely from her (absent) father (bastard). (Have I mentioned that he’s not been around for 32 years?). (Bastard).

We saw the oncologist yesterday who agreed that a bilateral salpingo-oophorectomy (ovary and fallopian tube removal) would be prudent.

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I’m not well-qualified to discuss the components of female identity, but as a fellow human being who believes that maleness and femaleness are perhaps not as polar as some would believe, I can definitely give it a clumsy shot.

Eva has been very up-front since she was diagnosed about the physical implications of treatment: mastectomy, nausea, hair loss, tiredness, and deconditioning for a start.

Some things have come as a shock. She had not heard of lymphoedema before, and the potential for this should there be damage to the lymph drainage of her right arm when the surgeon removes the lymph nodes in her right axilla. It dawned on her, slowly, that chemotherapy and oestrogen-blocking medications had the potential to render her infertile and give her an early menopause, respectively.

But now the finality of having her ovaries removed is sinking in. Last year she had her left fallopian tube removed when it ruptured due to an ectopic pregnancy. A few weeks after the emergency operation she received a call from gynaecology saying that the pathology results confirmed that it was a fetus in the tube which had caused it to rupture. Until that point, Eva had not given much thought or emotion to the ‘lost’ pregnancy; she had been more absorbed with how her physical health impacted her ability to interact with her very boisterous (then) three year-old daughter. The unexpected phone call and description of a fetus, and the image of it lying in a sterile kidney dish in a pathology lab was confronting and left her in tears.

Now, her ‘biological’ clock has been shunted forward by fifteen or sixteen years or so. She will lose her ability to reproduce, her menstrual cycle, and the influence of oestrogen. She will probably need to start medication for bone protection to reduce the risk of osteoperosis. She will require another invasive procedure to remove her reproductive organs. All of which will be on the back of having had a breast and axillary lymph nodes removed, and radiotherapy, and probably still being bald. And we’ve not even considered a double mastectomy for prophylaxis, or breast reconstruction. FFS.

What do these external and internal changes do to someone’s identity? What do they mean for someone’s gender identity? What are the potential consequences for a sense of femininity which a woman has had all her life? How, if it were a man, would he feel even having his pectoral region and nipple removed, or his testicles removed as a prophylactic measure? I think men may be better able to imagine these implications for themselves, even if it is difficult to empathise with what a woman goes through.

I don’t know what all the implications are for a woman, and it would be arrogant for me to presume that I did. I don’t think they necessarily need to change one’s identity, but I think the reality is that when you look in the mirror every morning, you’ll be very aware of the absence of a breast (or the presence of a prosthetic breast, should she decide that one day). You will be aware of not having a period every month. You will be physiologically aware of not having this pulse of oestrogen. You will be aware of the sociocultural stigma around being a young woman with no hair.

I think Eva is secure enough that it will not result in any sort of identity crisis; but I think it would be naive to presume that her (or anyone going through these rapid, unheralded, multiple changes) would not be challenged to adjust to this physically – never mind emotionally and psychologically – changed person. Regardless of whether we had finished our family or not, a young woman is going through an iatrogenic (medically-caused) menopause years before she ever imagined. Her body is being mutilated (her words, not mine); and yes, of course she knows that without it being ‘mutilated’ she would die, but it does not alleviate the grief or loss for what was or what could have been.

So I suppose this is some sort of eulogy. We are very aware of the gift of medicine that is allowing Eva to be treated so well and completely and efficiently in this blessed and wealthy and generous society in which we happen to live. We are thankful for our two amazing children.

It is goodbye to that thick, glossy, long hair which I fell in love with at 17. It’s goodbye to a breast that has fed two children and has marked Eva’s passage through adolescence and young womanhood. It is goodbye to that reproductive stage of Eva’s life, and that somewhat magical and mystical cycle that is responsible for producing the human race and causing women a pain in the….well, butt isn’t very accurate, so uterus – every month. It’s goodbye to body parts and hormones and a certain appearance.

And this is sad and painful and unexpected, despite knowing it is in the name of a greater good. It deserves to be considered and acknowledged. In this surreal process which has swept us up, I want to stop and say that Eva, and any woman (or man) going through a process like this should have the right to grieve and feel loss as they move forward.

Shit. This is shit.

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When Feelings Get Complicated

Last week Eva chose to get her hair cut short in preparation for the likelihood of losing her hair after the next round of chemo (starting tomorrow). A lovely friend from kindy offered her skill and time to cut Eva’s hair. We sat on the deck on a hot morning, seeking some shade under the large pandanus tree. Mia helped to spray Eva’s hair before Nicola cut it. That morning, Mia had been concerned that people would laugh at Eva because she might look like a boy. We spent some time looking at Google images of women with short hair, and Mia was reassured that short hair on a woman would not detract from her mum’s loveliness. Nicola plaited Eva’s thick hair and tied it off, and Mia has proudly kept it.

Eva is as stunning as ever; of that there’s no doubt.

 

One of our friends, Paula, made some headscarves for Eva, which Mia and I attractively modeled:

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We have continued to receive home-cooked meals from the kindy families (and others). We have had people make baby purees for Luca and provide playdates for Mia. People have labelled Mia’s school clothes, provided a cleaner, offered to do our laundry, our Christmas shopping, and buy groceries. Friends have offered to fly in from the USA and New Zealand, other parts of Australia and Europe. Others have provided support which have made it possible for me to be at home to look after Eva and the children, for the time being.

And it’s a strange mix of absolute gratitude and wonderment at peoples’ care and kindness and thoughtfulness…and discomfort. Discomfort at ‘being a burden’, or feeling like we’re creating a bit of a drama, or like we don’t deserve this. I have this subconscious line of, ‘well, no-one’s died’ echoing in my head sometimes. But then I reflect how oddly close to home and reality and potential that could actually be. And it all feels so bizarre.

Eva’s felt increasingly better over the past four to five days, although today she got very out of breath carrying Luca around, and walking up the street to our house (an incline which a few weeks ago we would run up – me pushing Mia on her bike, and Eva pushing the pram).

I think going from being a doctor to being the spouse of a patient is a difficult and confronting transition to make (for me). I try and imagine myself being at work at the moment; perhaps trying to assess a suicidal teenager, or assist a family who are unable to manage the behaviour of their autistic child, or trying to work with a young person with anorexia nervosa who may have a body weight which puts them at risk of sudden death, and communicating to them and their parents the need to be hospitalised and medically stabilised.

And I find I am not capable of doing that at the moment, and this is hard. I feel like I can hold my shit together as much as I need to for my family on these days (although teething/crawling/face-planting/nappy rash baby, emotional/over-tired/over-stimulated pre-schooler this afternoon, and looming chemo tomorrow, made me breathe a few ‘what the f**ks’ a good number of times today). I feel in some way guilty for not being able to be at work and do my job in a stretched service with patients with real needs…but also find it unthinkable to not be with my wife and children on a daily basis just now. In reality, there is not a workable solution to having all three of them adequately looked after during the chemo week, and I wouldn’t want anyone to be doing it as much as I want to. Perhaps I am grasping at controlling this situation as much as I can? Perhaps it is just the hard reality of having a seriously ill spouse and a baby? A combination of them all, I suppose.

In my job there is a lot of emphasis placed on knowing the limits of one’s capabilities, knowing when to seek second opinions and the input of senior colleagues, and of liaising with a multidisciplinary team to achieve the optimum outcome for a patient within the real-world, often complicated situation, in which they currently live. I don’t think I have ever been averse to constructive criticism or identifying areas for improvement. But it is something else to think and know: I shouldn’t be doing my job at the moment.

In a sense, I have become a patient. There is probably a psychological toll at present which is significant enough to impair some of my decision-making abilities, to potentially skew my ability to work in a professionally empathic manner with the requisite amount of emotional and psychological self-reflection, and to also affect my cognitive abilities in stressful, charged, and unpredictable clinical situations.

It’s an odd situation to be in. But why should it be? If I had cancer, or had broken my leg, or had a chronic physical illness which was exacerbated and required time off work – it would be clear. And as I reflect, I recognise that I – a psychiatry registrar – still carry prejudices and preconceived ideas about mental illness, people’s ability to ‘cope’, and the shame and embarrassment that can be associated with not feeling like one is coping as one previously could.

As I spend the hours of the day trying to organise a family and think about what needs done and consider the practicalities of our future and think about Christmas and going to Centrelink and trying to prepare for the coming week and wanting to look after myself to be in the best shape to care for my family and spend time with loved ones visiting from interstate and communicate with loved ones near and far and liaise with super funds and training colleges and and and….

insidious thoughts bubble away subconsciously: ‘it’s just a bit of stress, Simon. Are you really this anxious? How are you going to cope if things get worse? Tim [or Graeme or Andy or any other person I can think of] wouldn’t feel like this.’

And it goes on and on. The song is on repeat and it becomes a negative mantra.

So, what brings me out of it?

  • my wife, who is still so frigging sensible and wise and logical and fun, it’s mind-blowing
  • my children, who are beautiful and fun and lovely and full of joy and are being their own amazing child-like selves (that’s this moment’s positive spin. They’re sleeping just now.)
  • my extended family and friends, who are thoughtful and kind and supportive and loving and are wishing us the best and sending us strength through their messages and gifts
  • our community, who have stood up like nothing on earth and are caring for us in the true sense of community (communitas – ‘an unstuctured community in which people are equal…the feeling of great social equality, solidarity and togetherness’)
  • yoga
  • tennis
  • writing
  • eating food prepared by others, shared with others
  • the beach
  • the sea
  • praying
  • breathing into it
  • wearing one of Eva’s headscarves, designed by Paula, with its own black rasta-style pony tail:

 

 

Feelings do not fit into neat categories generally, and especially not when major illness is involved. So best just to stick your headscarf and fake wig on, smile, and whisper a gentle meditation.

 

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