I’m not ready to say goodbye: approaching the etiquette of grief. #autism



Yesterday I visited a dear, dear old friend. She is not dying, she is living – though time is closing in.

I had left it late, not wanting to impose, not knowing how to approach this illness. We kept saying we would meet – but we didn’t find the moment.

Text messages came sporadically, and then a sudden miraculous phone call before a visit to Rome in the spring. On impulse I had sent her the wedding photos I found in a drawer.

Later she wrote me a formal thank you, in her beautifully neat and steady hand. Realising this was a way to connect – as cards can be read out loud and enjoyed as part of a conversation – I wrote, and wrote, newsy greetings on arty postcards.


I’m sitting in a turkish cafe which claims to be the oldest coffee house in Europe (!) waiting for L who is sitting an exam close by.  How I wish you could be here with me…

And on I would go, without mentioning the illness, hoping to send her what she wanted most – infusions of life, laced with plenty of humour. What we best liked to do was talk (for hours, about what I don’t really know) and laugh until we were hoarse. Her uproarious laughter is what rings in my ears when I think of her.

When she called in the spring, it had been like going back in time. I got the photographs! How lovely of you. Her voice was the same voice. I was astonished, overwhelmed, delirious. There was a moment of hesitation, some momentary confusion, and her confidence evaporated cruelly. But it was only a moment. I love you, she said. I said, me too! I hung up with the firm idea that we would meet after Rome, but we didn’t.

Time passed, and I waited. In the summer I began to send photographs, videos, and a stream of messages from Spain. A hospital bed had been installed at home.

What can I do, I asked? Write, write…she loves to get cards from her friends. So I’ve been sitting in cafes, writing family news. I’ve reminisced about the old times, filled with do you remembers.

And in the past few weeks I sent messages to the family, but my need for clear signals probably got in the way.  I’ve been wracked by hesitation and worries about etiquette. Without a blueprint I admit I’ve been quite lost.

Then suddenly a message arrived, she wants to see you.

Yes, yes, I’ll come anytime, just say!

But we lost the thread again. They must be full tilt, I imagined.

A friend called, and said, I went. In the end I just went. 

But I couldn’t just go. And the waiting (not knowing how to proceed) was agonising.

So I radioed in my condition. Please forgive me for troubling you at this difficult time…I opened out my autism like steamed envelop.

The message came a few days later. Come, come now.

And so I did, and travelled through the filthy autumn night, a darker winter threatening  with each curve of the road, with each swish of the wipers, not knowing, just not knowing what I would find.

As I rattled in the back seat of a hired cab I became drowsy and sank into a reverie where memory enfolded me. Unpicking the years, each one (more than 30) was brightened by her smile and the laughter which crackles in my ear at the thought of her.

The door is always open, the text message vibrated as the car sped closer. This is code for don’t ring the doorbell (I decided). I imagined that it might disturb her.

She is tired the message vibrates again, so very tired.

Sustained by my memories I pushed at the handle with more self possession that I knew I had. I’m entering a zone of trust, I thought. I am here at last and I am welcomed, SO welcomed.

I want now to record and relive this moment.

She is tired, she is so very tired. And I’m not certain that she knows precisely who I am, but she is who she always was, and gorgeous in her acceptance of this ‘stranger friend’. I furnish details of our connection, reminding her of all her kindnesses to me over the years. Did I really? She asks breathlessly. Yes! Yes! I smile.

We lock eyes for moments at a time searching for one another. She is so tired. Sleep I say, and I will sit with you.

Will you really? That’s incredible, she says, sinking back. She closes her eyes and I survey her face, registering each feature. She is still beautiful, if not more so.

A nurse approaches brightly with a cup of tea. She can hold the cup and drinks deeply, with great speed. She brightens a little but remains so very tired. We hold hands. I tell her I love her and that she is my dearest friend – she says, you too. It’s like hearing a distant echo – but I know she means it because her heart is open with acceptance (it always was).

She’s so very tired. Would you like me to leave? I ask. My question is returned, and so I sit a little longer eking out my time. Finally, I break the spell, I mustn’t overtire her. As I begin to take my leave she reaches out to me and we hug. Though it is not a hug in truth – it is the deepest embrace to which we both hang on unwilling to let go. I have never known one like it.

She is gifted at hugging, and I leave in a state of grace, saying, goodbye my darling, to which she replies with the same.

I left with the promise to return. I’m repeating myself I know, but she’s not dying, she is living – and I’m not ready to say goodbye.




Published by soniaboue

I am an artist.

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