Written by Jo Milne


Jo Milne: A diary of firsts and lasts

Since the world watched her hear for the first time, Jo Milne has been on a journey into sound, all the while knowing her world is getting darker by the day. This week she trumpets the value of past disasters.

Jo at Durham Cathedral

Jo on top of Durham Cathedral.

I’m standing under the inky blue starry sky; I can hear a distant roar of waves crashing to the shore and the cold breeze bites my cheeks. The magnificent coastline illuminates the darkness of the North Sea.

I’m here in an assemblage, all of us huddled together for a spooky atmospheric play, set in the shadows of Tynemouth Priory and its castle; eerie cackling, robed monks and cries echoing against the medieval ruins.

My friend, also called Jo, carefully guides me through the pitch-black historic graveyard. Moonlight casts a streak of light among headstones; I read with fascination, careful in my steps as I tread alongside past kings of Northumbria, all buried with their secrets from thousands of years ago.

A life without sadness would be uneventful. I’m even starting to appreciate my own past disasters, sometimes even laugh about them. It may not seem like it at the time, but old humiliations do become essential parts of a fine story.

Later, I’m on yet another guided tour, this time at the breathtakingly beautiful Durham Cathedral. They too had heard my story and wanted to give me more visual memories as I listen to tales told with such enthusiasm.

I look up to admire the carved stone vaulted ceiling, its architecture and the ornate sculptures of past saints and bishops, their tombs secured behind vaults as they lay at rest.

“To make yourself fully blind before your time might seem an odd thing to do, but for me it had become a way of life. If I was going to lose my sight, I might as well do this sooner rather than later.”

I climb the spiral stone staircase, my 71-year-old mother in front of me; both of us giggling at the whole prospect of what we’re doing. It’s times like this with my dear Mum, I’m reminded why I have such an incredible zest for life.

Age and ability should never stop us finding joy; accepting our limitations and focusing on the ‘can dos’ lets my grateful heart take great pleasure.


In front of Tynemouth Castle.

On reaching the very top, I take in the breathtaking panoramic views spanning rolling green fields, the River Wear and Durham’s trademark cobbled streets, where a mass blanket of rain-soaked yellow leaves borders the pavement. There is no mistaking that we are in the height of autumn.

Later, we retreat to the university library to view an intimate display of books and artefacts dating back hundreds and thousands of years. A copy of the vivid jewelled Lindisfarne gospels: my eyes glisten as I look at the gems in amazement.

Beautiful illustrations in Hebrew and Latin, the neat handwriting of Queen Victoria. An embroidered bible carefully placed on a pristine white cushion.

As I lived my life – or, should I say, existed – in those few years after my Usher Syndrome diagnosis, in some twisted logic I thought if I stopped looking at all these beautiful things, it might not hurt me as much when they were taken from me.

To make yourself fully blind before your time might seem an odd thing to do, but for me it had become a way of life. If I was going to lose my sight, I might as well do this sooner rather than later, closing my eyes to life before they were closed without my say-so.

But I was only hurting myself. It’s excruciatingly painful but once we truly accept our fate, a natural buoyancy restores tranquillity. Having our share of difficulties just tends to make us appreciate things more and accept that life is rich with nuances of emotion. I’m finally gaining some perspective and even a little wisdom; any hurt we encounter is part of being alive.

Jo in Halloween fancy dress

Having devilish fun at Halloween.

As I host a party on Halloween, my home is decorated floor to ceiling. The aroma of pumpkin pie escapes the oven; a black velvet bat hangs from my pendant light. Trick or treaters tap at my door, children squeal with delight at our costumes and attempts to dance to Thriller.

I have to double glance as I don’t instantly recognise my guests behind face paint and masks… but I recognise their voices, something I would never have imagined being able to do last year.

I glance across the island in the centre of my kitchen; webs and spiders stick to my devil’s red wig, I notice everyone is deep in conversation and the sudden bursts of laughter make me stop in my tracks. I relish the diversity of my family, friends, acquaintances, and even the kindness of strangers this week.

With only five to nine per cent vision in each eye, I feel as if I can see more than I have ever done. I’m really not afraid anymore… and the eyes can be really useless when your mind is blind.


Jo Milne’s book, Breaking the Silence is out now. Her Facebook page can be found here.

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Written by Jo Milne

Gateshead-born author of Breaking the Silence, ambassador and campaigner. Jo has Usher Syndrome, a rare genetic condition causing deafness then the onset of a retinal disease leading to gradual loss of vision. Those who know Jo describe her to be inspiring as she continues to wring the joy out of life. @jomilne10