I felt sorrow creeping up on me at the beginning of the week as chemotherapy beckoned and with it the prospect of the long, deep dive into a muffled world. It’s tempting to shrug it off – who wants to feel sad or be with someone who’s sad? – but rather than resist it or fight it, I need to welcome sorrow as natural and needed in this season of my life.
My friend Becca, a youth worker who is studying for a PhD, has had ME for the last two years. She wisely tells me that you can’t compare illnesses and hardships but it seems to me that ME is a particularly cruel and devastating illness, with no end in sight. She has written on her blog recently about the importance of accommodating grief, words that are resonating with me at the moment even though my illness is very different to hers: ‘Learning to accommodate ME is to accommodate grief. Every thing that I realise I can’t do, provides a new window of grief at this sadness that will not go away for as long as I am ill. Despite it being two years in, I am still grieving health and not living the life I’d hoped I would be. Sadness at not being able to do daily things that I so wish I could- cook a meal, walk home, see a friend, drive to the beach on my own, spend time with friends uninterrupted by tiredness and brain fog… Accommodating grief into my life feels like one of the most spiritually significant things I’ve had to do along the ME illness journey.’
Wanting to make the most of the days when I feel well, I’ve seen two animations at the cinema recently which explore emotions. Song of the Sea is the most beautiful and haunting film about a family coping with loss and grief. Ben and his silent sister Saoirse get caught up in a mission to save the spirit world that is in danger of being turned into stone by the owl witch Macha who captures negative emotions in glass jars in an effort to control the world around her. It’s the type of film that stays with you long after you have seen it, and I would say it is the better film of the two. Pixar’s Inside Out also centres on emotions and the role they play in the life of a young girl called Riley whose family move to San Fransisco. It’s much more ‘in your face’ than Song of the Sea but it had a profound affect on me.
You might want to stop reading it you haven’t seen the film and plan to, but lots has been written about Inside Out so this may not be new. Inside Riley’s head are five emotions – Joy, Sadness, Fear, Anger and Disgust – who control how she responds to the world around her. Riley comes from a loving family and Joy is used to being in the driving seat, with the other emotions letting her take the lead. With the move to a new city, to a house that needs a lot of work, with no furniture due to a delayed removal van and a stressed dad, it’s hard for Joy to stay in control but she tries none the less, especially as Riley’s mum asks her to be happy to support her dad. Whenever Sadness touches a memory, it turns blue which seems to threaten Riley’s happy foundations, and so Joy tries to contain Sadness by drawing a circle on the ground and insisting she stands in it. When Sadness is neglected she becomes whingey and difficult, refusing to walk by herself and needing to be dragged along by Joy who is trying to save the day.
When Joy and Sadness get locked out of the brain’s command centre, Fear, Disgust and Anger take over, and Riley decides to run away and return to Minnesota. Joy and Sadness make it back, of course, but the resolution comes not by getting Joy back in the driving seat, but by letting Sadness take over. She holds the core memories that define who Riley is and they all turn blue, showing how the move has touched the very heart of her identity. Riley finally tells her parents just how sad she is, and in her dad’s embrace she is able to feel safe and start to smile again. Rather than being banished or controlled, Sadness needed to be at the forefront for a time and after she has been paid enough attention, Riley is able to move on to a more nuanced way of feeling and understanding emotions. This rang so true for me; we need to sit with sorrow when she calls, until she has done her work.
But I have also been thinking a lot about self-pity – the toxic and self-indulgent wallowing in your woes that turns you in on yourself and distorts your perspective. It seems to me that there is a thin line between sorrow and self-pity, and while one leads back to life, the other only makes things worse. On Tuesday I had three appointments lined up – with my chiropractor which is my treat to myself before chemotherapy, with my oncologist and then with the CT department for a scan of my abdomen, and none of them went well. Self-pity tapped me on the shoulder when I missed my chiropractor appointment because the District Line had long delays. She nudged me in the ribs a couple of hours later when the registrar told me that I need a port fitted because my veins are getting damaged. She breathed down my neck when the nurse couldn’t cannulate me for a CT scan because those same veins are too inflamed in one arm and too fragile on the other, leaving bruises as a record of his attempts and leaving me afraid that chemo couldn’t happen the next day. It’s so tempting to think ‘poor me’ but those things are inconvenient or random rather than part of a cosmic plot to make my life miserable. When I look at what so many people are going through around me and in the wider world, I have very little reason to feel that I’m a victim.
Instead sorrow overwhelmed me when Jonny asked me later how my day had been and in talking about it I realised what was happening. A cancer diagnosis disrupts and destabilises your world, making you question what you thought you knew about it. A treatment plan offers a map to navigate this new territory and gives you a story to tell yourself – six treatments, surgery and I’ll be ok by Christmas. Then partway through things start to shift – the tumour isn’t shrinking much, my liver is malfunctioning, my veins can’t cope – and that map needs to be rewritten. I only have this one experience of cancer and so while the medical team know what to do and what adjustments to make and it’s just par for the course for them, I find it unsettling and scary. I need to grieve for the loss of control in my life, for the lack of ability to make plans and to stick to commitments. I need to grieve for my strong body that used to rise to any challenge and carry me through whatever was ahead. I need to grieve for the plans I want to make for next year and let them go, until I know what next year is going to look like. Being honest about that, having a good cry and a big hug helped so much and meant the run to chemo the next day was genuinely joyful and life-giving. Rosie, my chemo nurse and the queen of cannulas, put one in for the drugs and another for the CT scan and it was all fine.
Jonny tells me that Walter Brueggemann writes ‘only grief leads to newness’. Whenever things change, we need to sit with sorrow and grieve for what is lost so that we don’t get stuck in the old way of being and can embrace what lies ahead. Becca understands this and I think I’m beginning to get it. So here’s to spending time with sorrow when she needs attention. Here’s to resisting self-pity when she breathes down my neck. And here’s to the wisdom to know the difference.