Sitting in the sun with us
I moved my chair into the sun
I sat in the sun
the way hunger is moved when called fasting. Jane Hirschfield
What can you say to someone who is dying? How can you help a family standing on a precipice of grief? How do you gift the girl with terminal cancer? I suspect that amidst the shock, sadness, and festive over-indulgence some of you will have spent time wondering what on earth you can do that is helpful to us. We are buoyed by the love we have felt from you in trying to answer that question. I can imagine precisely how difficult I would find it to know what the hell to do in your shoes. As for me, rather than mutely receive floral tributes, or fade away in dignified and remote splendour, I thought it was about time to let the torrent of words whirring around my head since Christmas start to fill the pages. And on what better subject to start than the mercenary, practical, deadly serious topic of what you can really do to help.
So, here’s the first thing. It is always, always better to say something than nothing. I know it is hard to know what to say to us. If it was me, I would probably assume that anything I said would be so ham-fisted that silence was the less insulting option. But we aren’t looking for words of great wisdom or succour (though goodness me, some of you have managed that). What matters that you acknowledge that this is happening, and show your willingness to walk this road with us. It won’t always be easy, but it certainly won’t always be doom and gloom. And yes, it’s better in a letter (you can have that one gratis, Royal Mail). But electronica works too. Whether hand written or typed the best missives are short, full of love, news and come with a breezy “no need to reply”. I love to read what you write to me, but I must confess a certain weariness with responding because it requires an acknowledgement of how I
am (it gets tedious to keep writing “doing OK, actually, in the circumstances”) – so don’t be offended if you don’t hear back. But friends, avoid the facebook one-liner “Hi Kate! How are you feeling?” You will not be rewarded. Responses will also not be forthcoming to those committing the cardinal sin of offering me no news about YOU. On my bleakest chemo days I have a low bar for amusement: surely your lives are more interesting than Relocation, Relocation, Relocation? So make an effort, people, whether you entertain, amuse, reminisce or inform.
Second, I must be clear that the looming grave has not lessened my desire for wordly goods (no ascetic Anglo-Saxon Wanderer am I). Everything I wrote about more than a year ago here still stands. My dearest mum has the flower rota going again. I feel resplendent sitting in luxury loungewear with a newly lit scented candle on the go. I predict my already deep vanity will increase in inverse proportion to the amount of hair I have: I may not believe in healing miracles, but I know the power of a good primer. I can still rock a directional wardrobe at home, on the way to school, or whilst walking the little black furball. Reading matter also remains welcome (box-sets sadly unnecessary for the couple who have seen it all). The knights have been ruined by Father Christmas, but as winter persists they – and we – will always be more than grateful for new plastic to add to the toy box (here is their frequently updated Amazon wish-list). Billy is currently dry for January but he is partial to a whiskey whilst I dry-heave next to him. I marvel at how nice stuff has the power to please. It shouldn’t be this way, right? I am an intelligent person who spends a not-inconsiderable amount of time pondering the meaning of life. And yet, nothing perks me up like a parcel. I muse that being frequently and luxuriously gifted (as I have been) is perhaps the silver lining to illness that dare not speak its name. My heart’s desire cannot be granted but that doesn’t mean I don’t desire stuff.
Third, life has to go on. We aren’t existing in a bubble of grief, because however bad things are, it’s not possible to live like that. We have our sad times and we cry about the future we won’t have together. And we have our joyful moments; when the dog eats a tube of wasabi or the boys play a game which doesn’t involve beating each other senseless. We have arguments about who takes the bins out, not just discussions about how I want our children raised. I don’t pretend we’ve found a new normal yet, but it’s coming, though I never could have imagined it would. In that vein, what we need are people who will go on living life with us. But we don’t need you to be different. We are still the same friends you have always had; and we love you for the people you have always been. Invite us for lunch. Take us on holiday. Go to the pub with Billy. Hang out with me and the boys after school. Come and stay with us. Tell us your happy news; up the duff? Hurrah. New job? Boom! You can even bollock on to me about your irritating jobs, children or husbands. I haven’t stopped being interested. I won’t stop rejoicing in your joys or commiserating when you develop a strange outcrop of old-woman chin hair. Just don’t put your special pity-hand on my sleeve or tilt your head à la Princess Di when we talk.
Alongside the fun stuff, there are practicalities foreseen and unforeseen for which we need your help. When I was first diagnosed, I didn’t want people I didn’t know to know I was ill. I feared being the sick, bald woman in the playground, the object of pity. Now I have no such false pride, and am beyond grateful to be living in a place where people stop and talk to me on our street, as well as part of a virtual community of dearest friends and family around the globe. Our needs will change (for sure, we’ll want food parcels at some point, but we’re ok now). So ask if you can help. And then ask again in 6 months. If you don’t hear from us, maybe just do it. The point is, the need isn’t static, and neither is what you are able to offer, because life will go on happening to you too. We know that sometimes it will be more, sometimes less; and sometimes we won’t need anything from you at all, just to be with one another quietly.
With any luck, this will be a long haul, and I shall be blathering on for years to come. So, some of you please save your cards, your emails, your visits and your presents. I know from experience that the hardest times are when the initial crisis has passed. When the rest of the world breathes again, and gets on with its own business – that is invariably when the night is darkest, and then we will need you more than ever. There will be more to say, in the fullness of time, about what you can do Afterwards*. For now, be reassured that my efforts to control this uncontrollable world will not end, and precise requirements will be provided (for I am nothing if not a Myers Briggs stereotype). But the point about it being a long haul is obviously even more true for Billy and the boys than it is for me now.
Finally, some thoughts on how to be with all this. I have been fruitlessly searching for an excellent article I saw last year in the Washington Post which provided the most brilliant description I have seen about how to help people through life’s inescapable, quotidian little tragedies. I have tried to recreate the picture which accompanied the article below.
As you try and decipher my writing, ask yourself honestly where you sit in my world. I think of it like a spiral. In the middle is me, the person with incurable cancer. In the next circle out is our little foursome of a family. Sort of in the same bracket, but sort of not, are the rest of the family – mine and Billy’s. Outside that, a handful of our dearest friends, god-parents to our children, best men and so on. Outside that – and this is a big, blurry, happy set of categories – others whom I love, but who are one degree removed: colleagues. Old friends from work, uni or school. Aunts and uncles. Outside that, people I know, but I’m not properly in touch with: former house-mates. Friend’s other halves. Billy’s colleagues. An old boss. Ex-boyfriends. School-gate mums. And so on, until you get to the world at large. Where you sit in these circles defines how you behave. Then, the rule is simple: you provide only support to those closer to the centre than you. And you expect support from those further out than you. So, to put it bluntly, you can only emotionally dump on people in circles further out than your own. I’m not averse to being wept on (it makes me feel special and a bit saintly) but in general, save your tears. Of course you are sad that I am dying, but most of the time I just don’t need to hear you snuffle snottily that you are so devastated that I am going to leave my children motherless. Hold it together, and weep on someone outside your circle. And think about what you can do – practically, emotionally or otherwise – to support someone closer to the epicentre. It doesn’t have to be me. It can be Billy, my Mum, my sister, my best friend. Anyway, this is a powerful and important rule and I suspect you will find applicable to almost any family crisis you find yourself involved in, whether you are rocked by the blast yourself or just dazed by distant aftershocks.
Right. That’s enough for now. I need to be off to re-angle my chair to catch the morning sun.
*I realise this era will need a name, like perhaps the Dark Ages. Anyway, we can come to that later.