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 follows her nose through childhood memories.

Jo filming with BBC Inside Out at High Force waterfall.

The crimson leaves cluster my driveway, a whiff of soft earth is in the air. A sign of the seasons changing once again, this time to my favourite time of the year. Autumn.

There’s a feeling of cosiness as we think of log burners to keep us warm and hearty casseroles cooking in the oven. That nip of cool air bites our cheeks to let us know frost and Christmas are around the corner.

Our lives are experienced through the five senses — the sight and smell of my colourful garden, the taste of a freshly ripened honey plum or bittersweet dark chocolate, the melody of a finely tuned instrument or the lilt of an Irish accent, silk on bare skin or the soothing touch from someone you love.

The ability to perceive our surroundings on five different levels and beyond is something society tends to take for granted. Senses. They’re extraordinary, but it’s only when you lose one – or two – that you realise just how extraordinary.

To me, the loss of one heightens another as smells hit my nose… more so in this season than any other.

“Swede and candle wax: I’m trick or treating, a black bin liner over my coat, spiders and eerie props carefully applied with sticky tape.”

Growing up on Weymouth Gardens in Gateshead, in the house where my parents still live today, the familiar fragrant lavender border by the patio sparks a childhood memory of Mum’s homemade ginger beer or Barr’s American cream soda, with a scoop of vanilla ice cream in my glass.

The thought makes me feel warm and fuzzy inside, with a smile always on the outside.

My determined Mum, on discovering I was profoundly deaf at the age of two, was adamant I was not to be treated any differently to my hearing siblings. Yet unbeknown to me, their whole world took a dramatic change.

Jo as a childAdapting to my deafness became second nature to us all, as a family. And how much I used my nose was instantly recognised.

It was normal for me to discover ‘dinner was ready’ without anyone raising their voices, or that my steamy bubble bath had been prepared. Imperial Leather soap meant Grandad was close by and Old Spice aftershave meant Dad was home.

Fascinating. How deaf people rely on their senses. Even if a neighbour called round; I would instantly know by the cold air gushing through the warm living room and their individual perfume or tobacco scent; rather than the fact they were standing just inches in front of me.

I was described as “a rabbit with a twitching nose” when my father arrived home, clutching a Chinese takeaway in its familiar brown paper bag. The aromas would instantly travel upstairs and interrupt my dreams, waking me from a deep sleep, and I would be eating from a small plate moments later.

Smells are like potent wizards that can transport you a thousand miles and through all the years gone by in an instant.

A whiff of the familiar adhesive, almost plastic aroma can magic me to Fenwicks’ toy department as a nine-year-old at Christmas time, clinging onto my grandfather’s hand; seeing his smile and the elegantly decorated Christmas trees.

Freshly applied creosote on garden fences: it’s the summer holidays and I’m playing out in the street in my roller boots. Swede and candle wax: I’m trick or treating, a black bin liner over my coat, spiders and eerie props carefully applied with sticky tape. Coconut oil takes me to happy family holidays in the Spanish sunshine; a musky scent brings back romantic memories of a past love.

“While I do still have my eyes that see in some shape or form, I will use them, cherish them and appreciate every day I wake up and blink open to this incredible world.”

We’ve all done it with freshly washed, ‘aired on the line’ bedding or towels. When you inhale deeper and as you breathe outwards… you feel a sense of happiness and of being as ‘fresh as a daisy’.

The aroma of a cooked English breakfast, baby talc on a newborn baby, rainy dogs, fried onions at the fun fair, percolated coffee – smells I probably wouldn’t appreciate as much or which wouldn’t allow my mind to wander in such a comforting daydream had I had all five senses in perfect working order.

Jo MilneThe world should spare a thought for those born with Usher Syndrome. For lives lived with a dual-sensory loss, deafblindness. For our shared hope a cure is on its way to pull back the curtains from our narrowing tunnel vision. To switch the light ‘back on’ as we deal with our frustrating night blindness.

This day may come in my lifetime, it may not. But as the saying goes; where there’s life, there’s hope.

While I do still have my eyes that see in some shape or form, I will use them, cherish them and appreciate every day I wake up and blink open to this incredible world. I see places I want to see and travel the world, making lots of visual memories.

I’m positive my three remaining senses: smell, taste and touch will equally colour in the bigger picture of my life as it moves along. And I would not have it any other way.


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