Words that hurt: happiness, joy.

Phrases that hurt: ‘Rich would want you to be happy’, ‘I hope you’re enjoying…’, ‘May you find peace’, ‘this will help you heal’, ‘try and find something to smile about today’.

Phrases that help: ‘tell me about Rich’, ‘don’t hold it in’, ‘just be you’, ‘you are hurting’, ‘I wish I’d known him’.

And the best way to ask after someone experiencing profound bereavement? – ‘how is today?’ If you ask ‘how are you?’, then frankly you’re not really thinking about the person in front of you or at the other end of the phone. How the f*** do you think I am? Is the way we want to respond. But instead, of late, I just don’t bother responding at all. Because if they can’t imagine what the devastation of loss like this might feel like, and I haven’t got the energy to explain, even if I thought they would learn from hearing an explanation, then it’s just not going to work.

Why do these words and phrases hurt? Because they dismiss the pain. They tell us (incorrectly) that ‘happiness’ is the normal state to which everyone should aspire, even when happiness is at best fleeting. Telling or expecting someone to seek joy, denies them the right to feel the depth of love and agony on physically losing the person who gave them meaning.

And this is the word that resonates most with how Rich and I have always lived our lives: meaning. As soulmates, we lived for each other, and I still live for Rich. I know that many people don’t believe in soulmate relationships, perhaps because they haven’t experienced one, but from day one it’s how Rich and I recognised each other. Finding each other gave us a renewed sense of purpose. Together we felt able to ask ourselves the question ‘If not us, who?’, and decided that it was time to start acting on our hopes to make the world a slightly better place. Rich sought to bring about change for others living with disability, and his legacy will continue – I and others will ensure that.

Meaning and purpose, as opposed to happiness and joy. Joy was not a word Rich would ever have used, and it definitely wasn’t something he sought. The cult of happy. If you’re not ‘happy’, you’re considered ‘wrong’. Happy is ‘right’, grief is ‘wrong’. We live in a society that finds it easier to witness anger than pain. Anger is seen as acceptable, whereas the pain of grief has to be hidden away. It’s seen as something to be gotten over quickly, whereas the reality is that the pain doesn’t diminish. Not one iota. When you lose someone that means so much, how could it? But mourning is discouraged, and we’re expected to manage the pain in private, rather than going public with it. I’m sorry, but I love Rich too much to comply. And I want to the whole wide world to know. And then I want to make things better for others who are living and will live this nightmare, because keeping it in, shutting it all away, doesn’t work. Grief is love.