I’ve just finished reading ‘When breath becomes air’, a wonderful, heartbreaking book written by Paul Kalanithi, a neurosurgeon, about his experience of having terminal lung cancer. He died aged only 37. There is so much wisdom and insight in the book, that I’m sure I will be thinking about it for days and weeks to come, but given that I had already written most of this blog when I finished it, one passage in particular stood out to me: “Grand illnesses are supposed to be life clarifying. Instead I knew I was going to die – but I’d known that before. My state of knowledge was the same, but my ability to make lunch plans was shot to hell. The way forward would seem obvious, if only I knew how many months or years I had left …….. The truth that you live one day at a time didn’t help. What was I supposed to do with that one day?”
After I had my breakdown in the early 2000s, therapy helped me emerge from the fog in which I had been subsisting. I had cognitive behavioural therapy which involved looking at my stories about myself, my life and the world, and challenging their validity. One of my most prominent and persistent stories is that I am lazy. When, in response to a question from my therapist, I would finally say ‘it’s because I’m lazy’, she would say ‘ok, so, let’s look at the evidence for that’. As we looked for evidence I would quickly realise that my laziness is in fact nothing more than a self esteem sapping story. Yet that story still runs. Even now, my inner voice tells me I’m lazy on an almost daily basis, and ‘looking for the evidence’ has become an almost reflexive habit.
As a child the value of hard work was drummed into me. My mother began her working life when she was just 12. After their parents died, each of her older siblings took one of the younger ones. My mother went to work in service with her older sister Kathleen. My parents were both from County Cavan in Ireland, but they met, married and brought us up in England and as for so many migrants, a strong work ethic underpinned their dream of building a better future for their children. When we were growing up, my mother had four children to care for aged within seven years of each other. She had a job as a district nurse, and we had a small holding, growing all our fruit and vegetables, and keeping pigs, chickens and calves at various times. At Christmas time, my parents sold oven ready chickens. After they had each done a day at work, my mum would cook dinner. After we’d eaten, us kids would get ready for bed and my parents would go down to the shed for several hours of slaughtering, plucking and preparing chickens. If we needed them, I had to put the light on in the upstairs toilet as a signal. How little I appreciated then how hard they worked for us. I feel ashamed now that we teased them for falling asleep in their chairs on Sunday afternoons; they must have spent 20 years being utterly exhausted.
My mum was determined that I would have opportunities that she never had. She took me to ballet and tap lessons every week, she made tutus for me from scratch. I had piano lessons, I had ponies. I was clever, so I was sent not to the local comprehensive or grammar school but to La Sainte Union Convent, a direct grant school in Bath. The fees were paid for, but my parents had to find the money for everything else – the blazer, hats (maroon felt in winter, straw boater in summer) gloves (maroon wool in winter, white cotton in summer), uniform shoes, PE uniform (white aertex shirts and scratchy wool culottes) etc. I don’t remember my mother ever telling me that I had to ‘earn’ any of this, but I do remember while still at school, feeling strongly that I had to make the most of these opportunities, and live up to my parents’ hopes that I would do well and ‘succeed’, although what that meant, beyond being financially independent, was never clear.
Since then, however hard I have worked, I have never quite silenced the voice in my head that says if I tried a bit harder and got a bit more organised, I would be a better person. I would Marie Kondo the entire house, I would write menus for the week and never waste any food, I would read all the business books sitting on my desk, and write multiple brilliant (obviously) Slideshare presentations, I would work out a budget and stick to it. Rather than the long ‘to do’ lists that I habitually keep and never get to the bottom of, I once started keeping a ‘done’ list. It made me feel good in the short term but didn’t solve my problem; no matter how much I’d ‘done’ I’d still never done quite enough.
For a while, when I was first diagnosed, the voice that says ‘you’re lazy’ was silenced. In contemplating the possibility of a life cut short, my ideas about what it meant to be ‘productive’ were turned on their head. But as the initial rush of fear has faded and I’ve moved from crisis mode to treatment mode, and come to believe that I may live to be an old lady (or not), I too have to think about “what I am supposed to do with that one day”.
So far (touch everything wooden in the vicinity) I have not been completely incapacitated by treatment. I am increasingly fatigued – the steroids I am on keep me awake at night and I need to sleep during the day. I have ‘chemo brain’ meaning that I don’t have the concentration, clarity and stamina necessary to complete projects, but I can walk, read, cook, write, even tidy if I have to (although I fear the house will not get Marie Kondo’d now or ever). The voice is back, just a whisper, telling me I’m lazy, I could do more.
Right now, it’s relatively easy to answer. The most productive, ‘successful’ thing I can do is everything I can to make treatment as successful as possible whilst limiting the suffering involved. Right now, sleeping 4 hours during the day is productive if that’s what I need to heal, spending 3 and a half hours in the hospital trying to find the b & b (bladder and bowel) ‘sweet spot’ is productive if that’s what it takes to limit radiation damage. Writing is productive if it helps me make sense of what is happening to me and keeps my brain active. Putting on make up and spending time choosing what to wear is productive if it makes me feel good.
But was it productive to get involved in a fight over sexism and unconscious bias in my industry? I felt I had a duty to do so, and I think it was the right thing to do. I don’t want to withdraw from life, to feel that my life has shrunk to my cancer, but this fight has left me feeling sad and angry and I have lost at least one friendship as a result. Was it a good use of my limited energy? Perhaps not, but if no-one speaks out, nothing changes. I have a niece and step daughters growing up in a world where white male privilege is alive and well.
I feel I need to use this opening and this time, to once and for clarity on what it means for me to be productive, to be ‘successful’ once I get beyond treatment and am able to either pick up my life just as it was, with the same priorities, or maybe to change them. Right now I am working with an idea I read about recently which is to think about being ‘deliberate’ so that everything I am doing has intention and meaning and I’m not just floating through the days.