Written by Jo Milne


Jo Milne: A Diary of First 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’s been thinking about coping with loss. And listening to Bowie.

milne lossAs someone who was born deaf and lived nearly four decades without sound, I liken the life-changing moment my cochlear implants were ‘powered’ to an exclusive backstage pass which the hearing world owns 24/7. Music.

Nothing comes close to that powerful sensation, so overwhelming as my auditory nerves become alive and my brain processes tunes and notes it’s never had to before. Like jumping into an ice-cold bath on a sunny day, all in a matter of seconds.

Since music became such an important part of my life, I’m starting to learn that when a cultural icon dies, a tiny piece of our own identity dies too. Like a sense of losing a period in our lives that the artist represented, a childhood memory or an era that sparks those memories.

The recent and all-too-soon passing of David Bowie left behind a global outpouring of raw intense grief. We may have only viewed him from a distance but it seems many felt he gave us permission to be ourselves.

Musicians walk alongside us: our emotions, way of feeling – everyone has a song for that connection. It’s fascinating.

Life has a funny way of biting you hard on the backside when you least expect it. As part of our human psyche, we’ve been born to possess those sensitive qualities, yet we’re not particularly equipped to deal with profound sadness. Grief. Loss. The kind of unimaginable pain when gravity weighs down our hearts.

Coping is a strange and personal concept; whether someone dies or in my case, due to Usher Syndrome when a part of you dies. My hazel green eyes. The eyes that once navigated as I drove the length and breadth of the UK in my Beetle – always opting for a scenic route, taking in the rugged coastline or winding country lanes.

“I took solace in the fact that everyone has moments where it feels like the universe has a personal vendetta against you.”

Those eyes which memorise routes daily to allow me to walk through crowded streets without bumping into anyone, and most painful of all, the eyes which study faces of those I love so they’re imprinted in my memory forever. Particularly my beautiful niece’s sweet smile; the unmistakable gap between her teeth; a mirror image of my sister Julie’s.

I think you live with it the best you can. Yes, I have gone on, I have done things; I get up and continue every day since I refuse to just give up. I have days where I gasp and ache for air that only comes in short insufficient bursts. Days when breathing is no longer the autonomous, thoughtless process it should be. Days where I plead with my head and heart to stop thinking too much; to inhale, exhale. To me it is perfectly reasonable to take a step back now and again and be sad, because it IS sad.

The world can be hard and cold. I could not understand in a million years how I was expected to cope. In fact, I wanted to blame the universe, but I realised the universe wasn’t doing this to me personally – to the temporary speck of dust that is my life. I took solace in the fact that everyone has moments where it feels like the universe has a personal vendetta against you.

There are worse things than going blind; don’t pity me. Encourage and support me. If anyone is to do something for me today, take note of the reflective quote, which David Bowie’s wife Iman shared with fans: “Sometimes you will never know the true value of a moment until it becomes a memory.” So please live in the moment, a moment you’ll never have again. Try not to obsess with the past or future.

As I listened to Bowie’s Five Years, I was gobsmacked I hadn’t yet heard this track, the doomsday fantasy in which the world ends and that serves as an epic opening to his album The Rise and Fall of Ziggy Stardust and the Spiders From Mars.

To me, lyrically, it paints the most vivid imaginary setting that a song can portray, with a sense of panic in his voice as it builds into a messy crescendo.


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