Wisdom from the Book of Helen (or what to say in times of crisis)
A friend of mine whose daughter died during childbirth said - there is nothing following 'at least....' that makes it OK.
So right. So why had people tried, in an attempt to comfort him?
Our instinctive responses - though well meaning - can actually be quite hurtful. It's complicated. Could it be partly due to our lack of psychological education, and also the huge taboo about death? This genuinely could be usefully taught in schools along with cooking and budgeting - how to support those you love through bereavement or illness.
I remember learning about taboo in GCSE English. The Victorians were prudish about sex but had no trouble talking about death (apparently). We millenials can basically cope with talking about sex, but have huge difficulties talking about death. This also affects the way we deal with critical illness.
This week it's the birthday of my friend Helen, who was a constant striver, learner and teacher, right up to her early death from myeloma on her 38th birthday a year ago. When she was diagnosed, she started a blog and also set about educating her enormous network of friends on how best to support her. I would love to pass on some of her wisdom to you, in case you need it some day.
1. First educate yourself and prepare
Know that our first instincts can be wrong and you can do better if you give it a bit of thought. You might never have had to give this much thought before - I really hadn't. But others have, and you can learn from them. Try this Ten things not to say to someone with cancer (and what to say instead) for a quick glimpse into how it might feel to be on the receiving end of some of the stock phrases. It's no substitute for really listening and being responsive in the moment, but will start to get you in the zone. And this Cancer - the uncertainty factor.
Then watch this - one of the most moving TED talks out there, and definitely on my required TED watching list.
2. Don't assume anything, just ask!
Don't assume she does or does not want to talk about her illness. Or wants to go out, or stay in. Or laugh or cry. Anyway - it's going to change day by day, hour by hour. You can just ask.
Don't assume that your friend has enough support. Or that you are not needed, because there are many other much closer friends. Or because the last email two months ago said that she was OK for friends going with her to appointments. Things have probably changed. Just ask.
Helen really did have an enormous network of friends. To give you some idea, an email with personal updates sent to "just the closest" had 78 recipients. I was just a remote satellite in these constellations of some of the brightest, most sociable and loving friends I have ever seen. As her brother said: "The sheer quantity, depth and endurance of her friendships makes it hard to fathom how she did anything else."
So I was stunned when Helen took me up on some offers of help because she said "it's incredible rare" for someone to keep offering help, and yes - there were a couple of things I could do that she would really appreciate, if that would be OK. I was applying what she herself had taught me - don't assume, just ask.
You can also think of creative ways to make it more likely for your friend or relative to accept help. "I'm just at the supermarket, anything you need?" - kind of thing. Or a more general - "what are you up to today?" As your friend talks through their day, you can offer to relieve the load of one or two things, if it would help.
3. Yes, it is all about her.
Make space in your life and your heart to give her your time lovingly. She needs your support and hopefully enough people will be around to give it and be able to sustain the emotional and physical energy needed. And if you can't at the moment that's OK, but don't burden her with your guilt about it. Read this, it's brilliant - a simple guide that will transform how you think about the situation.
Show up, and gather your strength to be present and attuned, even if you can only hold it together for an hour before you go back to your own stresses. Or send a postcard. Or a photo. Or something. And if you need to talk to someone about your own reaction to her suffering, think carefully about burdening your friend or those close to her. You probably need to get over your grief, fear, disbelief that something like this is even possible, or at least try to contain it while in her presence.
4. And now... keep on living and enjoying your friend's awesomeness
I have so many lovely memories of Helen, including profound times we spent together at the end. She was brilliant company - intelligent, intense, funny, and seemingly interested in absolutely everything. Once you've educated yourself and prepared mentally (above), hopefully you can relax and enjoy everything about being with your friend that you always have.
The Book of Helen refers to an amazing book produced by Helen's brother Matthew in the days and hours after her death. Inviting friends and family to send in memories, "The result was a blizzard of images and a torrent of words of the highest quality - very Helen". 80+ pages in fact. It's a very individual tribute to an amazing person, but itself is a bitter-sweet handbook for love, friendship, work, fun, travel and living life to the full.