Mark Mardell speaks – quietly, powerfully

In September 2023, the BVA was honoured when former BBC broadcaster Mark Mardell joined our distinguished group of Patrons. Following a career at the forefront of reporting on national and international politics on TV and radio, Mark has spoken openly about his experience of living with Parkinson’s disease. Parkinson’s can significantly affect the voice, reducing loudness, clarity, fluency, intonation and modulation. He is a co-host of the acclaimed podcast ‘Movers and Shakers’: “six friends gathered in a Notting Hill pub to discuss the realities of life with Parkinson’s.”

At September’s study day, ‘Quiet Courage’, which explored psychological dimensions of voice disorders, Mark spoke movingly of how his voice is no longer the strong, dependable tool he had always been able to rely on. This is a transcript of his talk:

Nearly everyone feels a sense of nervousness when speaking live, particularly in front of a real, live audience. The fact that I have Parkinson’s both increases and decreases those nerves. After all, the fear is that somehow you make a dreadful hash of it all. Parkinson’s is a ready-made shield: an obvious excuse if I cough, splutter, lose my place, or drop my notes. I hope I won’t but know this conference will indulge me.

Indulge me too in drawing back the curtain on a domestic scene…..

 

That’s what my voice sounds like now!

The fifth time I’ve been ignored I crank up the volume as high as it will go and it comes out as an angry shriek: “I said I’ll do the dishwasher after I finish writing this piece! You just aren’t listening.”

Jo, my wife, snaps back “I hate it when you use that tone. You’re just being rude and aggressive.”

“It’s not a tone – it’s my voice – that’s what my voice sounds like now! You’ve got to get used to it”.

The trouble is, I haven’t taken my own advice. I haven’t got used to the way I sound now, and while it’s true, trying to be loud comes out like a petulant banshee wail, that’s at least in part because I do feel petulant: ignored, frustrated, angry and diminished. My voice was my not-so-secret power and Parkinson’s is Kryptonite to it, turning me into a low-decibel weakling.

More glimpses into the madness that is the Mardell menage in a moment, but first, a little background….

I have been a journalist all my life since leaving university, and never imagined not doing it. When I did my last World At One for the BBC, I declared on air that I certainly wasn’t going to go away and trim the roses. No retirement for me! I changed my mind in June 2020, not directly because I had Parkinson’s, but because I needed a break from the self-promotional slog of freelancing; I even put a hold on the book on Brexit I was halfway through writing. I did worry that my sense of self was so bound up with the job, it had been such a huge part of my life, that I might simply evaporate without it. Rather to my surprise it didn’t – for good or for ill.

 

Fascist pigs and tinned shoes

But my identity was about to get holed below the waterline. Torpedoed by Parkinson’s. Journalism is about several things in my mind but the most basic, most obvious is communication. Whether writing or broadcasting or using social media, what we are trying to do is tell people stories: setting out what you think and feel, and what other people think and feel. Primarily, even for somebody working in television and radio, that means typing, or for the hopelessly old-fashioned and romantic, writing longhand in a notepad. Parkinson’s makes handwriting very small, difficult to read even for the original author. I’ve just done a shopping list.

“What do you mean ‘shelters’?” asks Jo…. “Shallots”, I eventually decipher. And what do I mean by “fascist pigs and tinned shoes?” I dunno…. Ah! Maybe “figs? Figs, or another fruit, like cherries”.

As for typing, I was a fairly proficient touch typist, which in effect means rather miraculously, words flew straight from my brain onto the page without conscious mediation. I can still type and I can’t revert to one finger stabbing – my brain won’t let me – but it is deliberate, slow and laborious.

This alone has changed my life, further slowed down a routine already made much slower because of Parkinson’s. Who knew it could take 10 minutes to put your trousers on the right way? Answering routine emails and trying to do a daily diary takes up most of the morning. Given that Parkinson’s makes me wake up absurdly early, there is more morning to play with, but I feel like going back to bed by lunchtime.

 

“I used to be Mark Mardell”

But this is an irritation – only a partial assault on who I am. You know what the full assault is? Sounding quavery and wavery, sounding slightly drunk, and oh, so soft. The reason I say, in a yet to be broadcast edition of Movers and Shakers, “cue violins – sometimes I feel like saying ‘I used to be Mark Mardell’ ” is really down to my voice. [Episode released 14th October 2023]

Like many broadcasters, I suspect, who are not blessed with deep, dark voices like chocolate and gravy, I don’t actually like the sound of my voice. I always felt it was rather hollow, too thin. After 40 years of listening to it back at varying speeds and hearing it in edits, the same sentence over and over again, you get pretty used to this tool. If I thought of it at all, that’s how I thought of it: just another tool in the kit, like speed-reading, or good short-term memory for sounds and phrases. Not central to my very being. How very, very wrong I was!

Looking back, the first sign something wasn’t right was when I recorded my first and last documentary for the BBC as a freelancer: I kept stumbling over words and running out of breath. I kicked myself, but it happens sometimes, and I put it down to no longer doing this every day. I won’t say I thought no more of it, but I certainly didn’t think it was an undiagnosed illness. Maybe it wasn’t.

It was a few months after I’d been officially declared a Parky that it started to hit.

 

Losing my sense of self

I noticed people couldn’t hear me very well, and my voice was dramatically changing: much weaker, much less powerful, much less clear. Not only that – and here it’s a bit difficult to disentangle what is mechanical from what is neurological, if indeed a distinction can ever be made – but also breathier, slower, and a more awkward delivery. This has meant I’m more careful about what I say, planning interventions and interjections. As with typing, I became a conscious middle man rather than ideas becoming words flying straight from the brain without so much as a by-your-leave.

This wasn’t the mere snapping of a vital work tool. I wasn’t really working so didn’t have to give it up – that would have been terrifying – but I did have a sense of self to surrender. I hope I’m not bombastic or pompous, and I’m the same mixture of occasional overconfidence and deep insecurity that make up most of the human race. But, to be blunt, I’ve never been insecure about my ability to quickly absorb ideas and express them clearly. I was often the loudest person in the room, able to more than hold my own, often dominating the conversation. My wife was always telling me to lower my voice a little bit in public rather than booming out across the plains.

 

Not ignored but unheard

That’s gone – a distant memory of an innocently self-possessed past life. It’s most noticeable at home in a family setting, particularly when all or some of my grown-up kids are around. My wife always said it was difficult to get a word in edgeways when our eldest, Jake, and I were in full flow. Not now. I simply can’t get a hearing – I literally can’t be heard. There are always rolling rumbustious Mardell debates, whether over the best place to eat curry laksa in the capital, the humanity or otherwise of Neanderthals, or what to watch next on Netflix. And I feel like my views are being ignored – I’m simply not being heard these days. That hurts. It’s not me. I have to keep reminding myself to grow up and it’s because I’m quite literally not being heard.

I’m not being deliberately ignored or talked over. But it feels like that. In fact, it feels worse than that. Parkinson’s is a life sentence rather than a death sentence, but it does make you profoundly aware of your own mortality, and it feels like I’m already a ghost, silently and unhappily haunting proceedings. I feel like saying “hello – I’m still here, I’m not dead yet”. But I don’t. I wouldn’t be heard – they could stretch out their hands and it would go straight through me.

 

Speaking up

Well, well, well, two cheers for the defeat of the patriarchy in one small corner of Surrey, and it has made me reflect on voice as agency and power. Actually, I always thought I’ve been pretty good journalistically, attempting to give voice to the voiceless. For years at work, in the Radio 4 offices and foreign bureaux, I’ve tried to make sure those literally or metaphorically with a quieter voice, don’t get shut up, shut down or talked over. But that was magnanimity or morality from a position of strength. Now, I am the one who feels excluded and thus diminished.

In larger groups, I was forced to nervously wait for a gap in the conversation to insert myself into it. Trouble is, that would-be humorous aside or sharp-witted lunge is rather blunted by delay. By the time I find my voice, the moment has passed and I end up feeling even more left out than if I hadn’t bothered in the first place.

Friends have been understanding and accommodating, seeking out meeting places where the noise levels are low and we can all be heard. Equally, I’ve never been embarrassed about my condition; as a shop assistant or waiter leans in to hear what I am saying, I just tell them “I’m sorry, I’ve got a very quiet voice”, and most are understanding and helpful. I tend to leave it there – no need for a medical discussion with every conversation. But then sometimes, I do as Jo would say “play the Parky card” to get sympathy and a dialogue going (and more convenient seating…). Need an ice-breaker? Have you tried an incurable degenerative brain disease?

 

Letting yourself be helped

There are other strategies too. Oh, it’s important not to let others take your place but sometimes, you know you can no longer make that complex phone call to the gas people. Indeed, delegating tedious matters has long been a skill.

Or, no longer play master of ceremonies. My daughter Lucy, who used to work in hospitality, is particularly good at marshalling the Mardells: coordinating what everyone is eating, which with us, tends to be a constantly changing kaleidoscope, enough to confuse the most patient of servers, so that’s a real solution. It can have its downside too: celebrating our middle son Theo’s graduation, I asked for another bottle of wine, so the server looked to Lucy to see whether I was allowed to order myself. Does he take sugar? Dammit, I’m still paying!

 

Reframing the conversation

It is not just when there is a mass meeting of Mardells that my voice is a problem. It’s even worse when Jo and I are in the empty nest; she has become slightly deaf and never seems to hear what I’m saying, or critically, that I am saying anything at all.

I think sometimes it’s harder for those who are very close to accept change and cope with it. One of the most moving things I’ve read on the Movers and Shakers Facebook page is “my husband used to be my rock, now I have to watch him crumbling”. I’m not suggesting I’ve been a rock nor that the change is so terrible for me, but you get the point.

That exchange I began with is typical. We make all the obvious mistakes: we try to shout from different rooms, I expect Jo to hear me when I have the music cranked up, she interrupts me halfway through a painfully wheezed sentence.

We’re setting aside time to chat; that sounds oddly formal when we’ve been married 33 years, but doing it on the run doesn’t work. I need to stop feeling hurt and ignored, and the kids need to treat me with a consideration I’ve never needed before.

I never saw this coming, or that my voice was so central to my sense of self, to my very identity. Of course when I say ‘voice’, it is shorthand for the ability to communicate, to be heard. It shouldn’t have come as such a surprise though; after all, language, along with appearance, is how we project a sense of self. Indeed, it is one of the distinguishing features of humankind. My hope and plea is that those who have damaged voices, muted or silenced by disease or accident, are still allowed a voice in the wider sense. Even without language, we are still human.

Movers and Shakers launched in March 2023. The six hosts – Mark Mardell, along with Rory Cellan-Jones, Gillian Lacey-Solymar, Paul Mayhew-Archer, Sir Nicholas Mostyn and Jeremy Paxman – have all enjoyed successful careers in the public eye and are living with Parkinson’s. It was recently named ‘Podcast of the Year’ at the British Press Guild Awards.