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:
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’)
- eating food prepared by others, shared with others
- the beach
- the sea
- 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.