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