Tom Gockelen-Kozlowski: ‘Most people don’t realise how lonely hearing loss can be’

Hearing Loss: The Musical most recently played at Edinburgh Fringe this summer. Picture: Supplied. (Image: Archant)

Tom Gockelen-Kozlowski's one-man show charts his journey from Daily Telegraph music critic - interviewing names like Nick Cave and Jonny Marr - to confronting his deafness, chemotherapy and a diagnosis of a spiteful genetic disease called Neurofibromatosis 2 (NF2). Here, Tom tells us about his comedy show and his ambitions in comedy beyond it.

How did you find your way in to music journalism?

When I was growing up I loved music, learned all the Boyzone dance moves and played in bands with embarrassing names like the Home Service and Miss Marple. But, let's be frank, I was too rubbish.

So I ended up standing outside of the Daily Telegraph until they gave in and let me have an internship. One 70-word demolition of a Keane album later, I became a regular reviewer. I ended up interviewing Nick Cave and Jonny Marr and hanging out with Charlie from Busted for a whole night. Great guy, crazy days.

Tom worked as a music journalist before deafness - and a nasty genetic disorder - cut that career short. Picture: Supplied. (Image: Archant)

But you realised you couldn't carry on in the profession at a Foo Fighters gig in 2011 - is that correct? What did it feel like when you realised this dream career was going to be cut short?

I was really lying to myself about my hearing for a long time. I was at this one gig though, and Dave Grohl kept talking and everyone around me was reacting and I didn't have a clue what he was saying. I think he was talking about their next album but… you just really need to pick up on those details and it took all of my confidence away. Or it was the straw of a million moments like that made me run away from it.

By the time I was diagnosed I'd already talked my way out of continuing in music journalism. I guess I thought I'd just wrecked my hearing by being stupid and going to too many gigs.

Can you tell us a little more about NF2?

If you knew me and didn't like me NF2 is the disease you'd probably pick off the shelf and send me in the post. It is a genetic disease which means I grow tumours around my body on my nerves. They really like to grow on your ear nerve and I have a couple of apricot/golf ball sized guys there. But I have dozens more and it can leave you blind, immobile and disfigured. Not even people who use wheelie suitcases on the tube deserve to have NF2.

You wrote a piece in The Guardian where you say that when life becomes uncertain, and you're struck down by a serious illness, "people grasp every opportunity out there." Has your diagnosis had a positive impact, in some way?

I wouldn't be performing if it wasn't for NF2 I don't think. When certain doors close off, it can make the ones which are open become clearer and I love the face-to-face nature of comedy and the creativity.

Journalists rarely get to see people sniggering at the half-formed jokes they've crept into an article. I also was quite happily living in my able-bodied world, ignorant of the challenges and huge achievements of people living with disabilities.

I did a kids show about disability with my childhood best friend (also, by coincidence, blind) in Australia this year. Of all the things I've done, getting a 10 year-old kid to high five you because she's got Down's Syndrome and you've got NF2 and disabilities are cool - to have a position where you can change people's perspectives, raise issues and celebrate diversity - well that's amazing for me.

What came next for you?

I've been touring Hearing Loss: The Musical, on and off, for two years and I'm still getting invitations to perform it in new places. But coming to Islington and performing the show in the same borough as I first previewed it feels like a neat place to pause for a little while. I have new shows to write and I'm making the gradual leap/stagger towards making my life one of a fulltime comedian.

Without ruining the narrative arc of Hearing Loss: The Musical, the NHS have done a brilliant job in safeguarding my hearing - and my life really - with a lovely drug called Avastin. I dedicate a song to Avastin during the musical and it's the one most people say they have in their heads six months on. Anyway, it seems like I have the gift of some time where I'm able to perform a comedy musical, so - yes - there's more pratting about on stage planned I guess.

When did you get the idea for Hearing Loss: The Musical?

Most people don't realise how lonely hearing loss can be. When you've asked somebody a couple of times to repeat something and then they say "don't worry, mate" it's like being carved out of society. I know that sounds melodramatic but when it keeps happening that's how it feels.

Then there's the general isolation of having a disease nobody's ever heard of - at least with cancer your HR department will organise a fun run and a bake sale. So I decided that I needed to "come out" as an ill person, as a disabled person, as a person with two worryingly big tumours between my ears. Obviously the only format that suited was a self-penned comedy musical.

What can an audience expect from this show?

There'll be songs, there'll be jokes and thanks to your taxes there'll also be - I promise - an NHS-funded happy ending. If you love a sing-a-long emotional rollercoaster powered by laughter and the human spirit - and who doesn't? - then this show will be for you.

I read that the message of the play is 'Don't be the idiot I was and get your ears checked out if there's something wrong.' What did you mean by this?

Oh well, I was a teenage boy when my symptoms were setting in and every teenage boy likes to imagine that he's destined to be the prize stag, the perfect specimen, and will ignore evidence to the contrary, so I ignored it all - for years. Typical bloke. So I hope the show is a bit of a shove for anybody who suffers hearing loss and is ignoring it to get it sorted out. I know a couple of people who have gone for tests after seeing the show and, well, they're fine. Which is great. No, I'm happy for them. I am. Well done guys. It's fine.

Hearing Loss: The Musical is at The Bill Murray on Thursday, October 24. More details and tickets here.