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 reports on an inspiring trip to Japan to see her book hit the shelves.

Jo meets with members of the deafblind community in Tokyo.

Jo meets with members of the deafblind community in Tokyo.

The mighty aluminium aeroplane in its ceramic skin jolts against the firm tarmac runway; the wheels whirr as both rear wings curl down. I feel the vibration on my skin from the engines’ roar as it taxis in.

The reassuring voice on the tannoy, the ping of seat belts unfastening, bodies springing from seats to reach for the hat racks. I’m feeling an undercurrent of anticipation and freedom that comes from arriving at airports in far-flung destinations.

Tokyo, Japan.

Feeling weary and disoriented with jet lag, my heart races as a boxy car pulls into the parking bay against the reddening sky, the warm climate beckoning me. My eyes dart left and right as my driver, in his pristine white gloves, ferries me to where I need to be. My publishing house. My first book being printed in Japanese.

En route, I absorb the sights. American vintage cars at snail’s pace in the next lane, neon-lit skyscrapers, opulent shrines with towering gates amid sprawling public gardens dotted with weeping cherry blossom trees, a pink delight.

cherry blossomBreton stripes, floppy hats, cute brogues – an incredibly stylish nation. Ubiquitous bicycles and three-wheel scooters dart across the city. Long handled umbrellas almost seem like part of the fashion; if it rains or the sun breaks through, a bazillion umbrellas pop open – an array of symmetrical colours creating a ‘just hold it there’ artist’s moment against the backdrop of vibrant Shinjuku, home to the busiest subway station in the world.

I felt like a weed in a rose garden: not awkward or unwelcome, but in awe. I can blame my mother’s Dutch genes that I towered above most of the Japanese people, gracefully presenting themselves with such deeply ingrained elegance.

Without my even opening my mouth and spilling out some indecipherable Geordie, the Japanese took my outsiderness in their stride.

In a new place, it always feels overwhelming at first. It’s like my brain has to rewire itself to use my usual visual cortex. It gets hijacked, processing new information on surroundings to help me build a bigger mental picture of where I am; the lights and sounds and colours screaming from every wall.

The Japanese edition of Jo's book, Breaking the Silence.

The Japanese edition of Breaking the Silence.

I soon began to learn the local way of life: the simplicity of getting from A to B and how their interior design evolves around clean, orderly and uncluttered living. A becalming style from carefully placed furniture and tranquil flowing water, dainty paper lanterns and delicate bonsai trees. Bliss.

We could all use a little more harmony in our lives.

Breaking the Silence hit the Japanese book shelves amid a media frenzy. They seem to be interested in my ability to always look on the bright side of life, to overcome such adversity.

There’s talk of producing a film, not only to raise awareness but to offer a message to the younger generation about overcoming bullying and, when life feels so crap and dull, how to turn up the dial of brightness and positivity.

To have a Japanese actress portray me in my life story… is this really happening, I ask myself?

On my last day something close to my heart was on the schedule: a gathering with the Tokyo deafblind community allowed me to meet others just like me. It always, always has me feeling humble again and I do this to open doors into the lives of those living with Usher Syndrome all over the world.

Sometimes it scratches the surface, sometimes it will strike one’s soul and it’s the Japanese who have laid a path to make awareness of this kind happen.

I’m feeling beyond welcome with surprise introductions to the Japanese way of life, from removing my shoes at a restaurant and sitting at low level. At dinner, I’m just feet away from a private shamisen performance (a traditional three-stringed instrument resembling a banjo), and later I attend a tea ceremony.

Jo tactile signing with a Japanese womanFor someone who is very observant despite having little sight, I found everything to be almost a choreographic ritual of orchestrated movements. The serving and presentation of food alone had me mesmerised: pretty glistening oyster shells, makeshift bridges over edible water lilies and always a small amount of wasabi resembling a lime green caterpillar at the edge of my oblong plate.

The important custom of bowing may have given me pause in my first few days, in case my vague understanding offended my hosts. But I began to master and return a bow, expressing my feeling of respect and thanking, all in one.

The reality of coming home is often an anticlimactic end to yet another life-changing experience but I continue to be surprised by people’s generosity. We do live in a beautiful world and the more faith in humanity I encounter, the easier it is to overcome my personal battles.

As I carefully place my kimono on a hook in my bathroom, I softly smile and remember… at the end of the day, I do possess the greatest gift in life and that’s life itself.


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

Read the previous entries in Jo’s diary of firsts and lasts 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