The generosity we’ve been shown has astonished us. I think it’s something to do with our characters and backgrounds – we both feel like you have to earn things, that you can’t just ask for things or be offered things. ‘Just asking’ or accepting feels incredibly rude and presumptuous. We’ve talked about this a lot over the years. We were astonished when people were so generous when we got married, for instance. Now that our child is ill…
I used to give a talk at postgraduate open days about how to fund your Masters or PhD, and the thing I put most emphasis on was how to leverage charities, trusts, foundations etc that have educational missions, that there are literally organisations out there who want to make society better through encouraging education, big and small, who will give you a grant to help you learn and study. So why am I surprised / taken aback at the charities that exist to make your family life better when your child has cancer / a cancer-like disease? I shouldn’t be. I know how it works. A friend of Em’s has just finished a stint as head of philanthropy for Cancer Research, ffs! But still.
Even more than that, though, is the generosity we’ve been shown by friends, neighbours, and colleagues. Actually let’s just call them all friends now. From people baking us bread or supplying us with frozen meals to make all the toing and froing between here and Bristol easier, to people coming round with souvlaki from the local Greek restaurant, to people walking up the hill and gardening for us while we were away (and when it was so sunny and the garden was going mental), beer deliveries late in the evening, Blu-Rays of films lent to distract me, to the people who text me shit jokes, or email stories about how badly behaved their kids are being, or send me photos of interesting things they’ve seen around town that might just take my mind of it for a split second, or post empty toilet rolls through the door so Nora can make a marble run like Topsy & Tim did, or who just text to say they’re thinking of us and wishing us well. It all has a positive effect.
Beyond that there have been offers of record club meetings, board games, dinners, and bike rides to fit around our needs and timings, and even though they’ve not happened yet because we can’t really plan anything at the moment, just the offers mean a lot. Even if we can’t accept right now, please do keep offering. We will accept, and they will happen, eventually.
And then there are the internet acquaintances, the people from groups we belong to (I say ‘we’ but I really mean Em) who we’ve never met, but who turned up at Bristol Royal Children’s Hospital with bags of toys, or who gave us a baby carrier on the understanding that we’d pass it on to someone else in need when we were done with it, or the entire forum who clubbed together and made up a care package of stuff – toys for the kids, gift vouchers, chocolates and a substantial cash collection (so substantial it freaked us out) for us – plus every little message of support sent by whichever channel or platform online; people I’ve no connection with at all stumbling on my Instagram feed and commenting / messaging.
I don’t know that I’ve been very good at this kind of thing in the past for other people.
I haven’t even mentioned the healthcare professionals.
What’s the motivation behind people, particularly strangers, helping out in situations like this? Love, altruism, a sense of social good, and just being a decent human being? The little rush of good feeling you get from helping someone in a tough situation out is an important part, too – Nora and I baked a cake the other day for someone going through a similarly shitty time; the cake and thought made them feel a bit better, and the activity, distraction, and sense of doing something good made us feel better. Mutual feeling betterness is good. (Well it made me feel better; I think Nora was faintly irritated at not getting to eat any of the cake.) There’s a little spiritual insurance going on too I’m sure, especially amongst strangers; there but for the grace of god, etc etc. And that’s fine.
In fact, a lot is fine. It’s fine to not know what to say or do, and to just click ‘like’ on a Facebook or Instagram post in lieu of doing anything else. It’s fine to be faintly irritated at me for not replying in a timely fashion, or sometimes at all, but it’s also fine for me to not reply in a timely fashion or sometimes at all, because, you know, a lot going on. It’s fine to pray for us, even though we’re god-denying heathens. I don’t believe in an interventionist god but I do believe in love, and at their best I think the two are the same. It’s even fine to avoid engaging at all with what’s happening to us, because it’s horrible and who wants to engage with horrible things? Just please don’t all do that. (It’s also fine for us to be occasionally pissed at you for not engaging at all.)
I put this on Facebook back at the start of this ‘journey’, and I’m going to put it here again because it might be useful:
A year or more ago a friend – I forget who sadly – was in crisis and posted a link to something very useful about how to offer support. I can’t remember the exact article but these are similar.