Speechless at 40 — Kim Ballantine’s heartbreaking, raw and darkly funny memoir

27 Jul 2024

On Kim Ballantine’s 40th birthday, her husband brought her breakfast in bed, wearing nothing but an apron. You could say that her personal, naked chef left her speechless – literally. And she stayed that way for years.

Within days Ballantine was reduced to making strange, animalistic noises, uncontrollable laryngeal spasms, and communicating with her family in rudimentary sign language. Bewildered and fearful, she consulted a specialist. She was in for a shock.

The diagnosis was spasmodic dysphonia, a rare condition in which, essentially, the body’s vocal chords do not respond to messages from the brain in a normal manner. There was no known cure and no fully understood cause. The coldly clinical prediction was that Kim would never speak again.

Ballantine found herself reeling and afraid. The personal loss was profound – from health and voice to friends and the closure of her consulting business. Her specialist physician husband, Rob, was beginning to build his own practice and worked long hours. Their children were still in primary school. How could Kim be both wife and mother with no voice and severely compromised health? And what of her own professional and personal ambitions and aspirations?

Hours after receiving her life-altering diagnosis, Ballantine wrote on a piece of paper: “I will speak again. You don’t know how big my God is, how determined I am. One day I will have a story to share.”

Hot Tea and Apricots is that story. As heartbreaking, raw and painfully honest – and at times darkly humorous – as her memoir is, Ballantine’s is a triumphant story of hope and holding onto life. Read the excerpt.

***

There is a moment in a life that creates a chasm, a great divide, the before and the after, where nothing is ever the same. Sometimes there is more than one moment. The first for me is Thursday, 11 March 2004. Rob and I are sitting in Professor Chris Joseph’s office, hoping for answers.

I try to speak. A sharp pain pierces the left side of my throat. I retch violently. Spasms grip my vocal cords. I gasp for air but feel as though I am sucking against a balloon. I fight for breath, turning puce and hot from the effort. It feels like someone is pushing my head under water. Air, I need air. Finally, the spasm breaks and air rushes into my lungs. I am limp with exhaustion.

‘Kim, don’t try to talk. Just be quiet,’ says Rob, passing me a tissue.

Easy for him to say. I’m trapped in a world of silence inside a body that malfunctions at will. Trapped and terrified. Am I going to die? How will I survive this? And he tells me not to talk.

‘Dr Ballantine, the Professor says you can come through now,’ says a grey-haired, bespectacled woman addressing my husband. She gives me a kind smile as we walk past.

I stretch out my hand to greet the specialist. Incoherent guttural sounds come out of my mouth. Coughing spasms grip my body as I gasp for air and retch yet again.

‘When did this start?’ the Prof asks, brow wrinkled in alarm.

I look at Rob and bump his arm. I am desperate for him to tell it all. Tell it like it really happened. Rob, my headline person, married to a fine-print woman who is now struggling to speak. I bump him again. Nothing. I give up and grab my notepad in frustration. Reduced to whiteboards and notepads, single words have replaced whole sentences. I take the pen and write, big and bold: TURNING 40 WAS A BAD IDEA. BREAKFAST IN BED LEFT ME SPEECHLESS.

Prof Joseph laughs, almost in relief, breaking the tension. Rob shifts in his seat and nervously rubs his ear. He catches my eye and smiles. If only the Prof knew.

‘Well, let’s have a look at those vocal cords,’ says the Prof, leading me to the examination chair.

I open my mouth. He leans forward and sprays into the back of my throat. I retch. Our noses almost touch as he pushes the scope into my throat.

‘Your cords are very red, hey. Very red and very jittery and jumpy. They’re spasming quite badly, hey.’

I stare at him, frightened and alarmed. I don’t want to be ‘quite badly, hey’. I want to be ‘this is easy to sort out, hey’, but I sit, frozen; a deer caught in the headlights.

‘You okay? Want a tissue?’ He offers me a box of Kleenex. ‘Vocal cords normally move smoothly when you breathe or speak. With Kim they are jittery, jumpy and trembling. She definitely has spasmodic dysphonia and she has it really badly.’

Rob looks nonplussed. ‘What’s spasmodic dysphonia?’ he asks.

‘It’s a movement disorder. Somehow, the instructions for moving the cords become chaotic and unfocused. That’s why she can’t control her speech properly and has these strange reactions when she tries to speak. We really don’t know what the cause is except that it’s neurological. Not viral or bacterial, so not contagious.’

‘And the coughing? What is causing the neuropathy, the terrible burning sensation in her throat all the time?’ Rob asks.

‘I’m not sure,’ he replies, playing with the pen in his hand. He looks up at Rob, his bushy grey eyebrows moving together slightly. ‘Rob, you do know that this is chronic …’ Rob says nothing. They simply stare at each other.

What is the huge concern here? I am tired and overloaded with medical terminology. I want a solution and I want to go home. Mostly I want reassurance that I haven’t lost my mental faculties. I have not asked that question yet and the professor has not covered it. He eventually breaks the silence.

‘Kim, I’m so sorry this has happened to you. You’re so young and this is frightening. You probably feel like someone is trying to drown you when you can’t breathe.’

I nod, relieved he actually understands. I take my pad and write, then pass it to Rob.

‘She’s asking if there is a psychological component to this?’

‘No, not at all. They used to think so, but it’s purely neurological. Her biggest challenge won’t be the disorder, but rather dealing with society’s reaction to her. That in itself can lead to psychological issues.’

I drop my head. Great. So I’m speechless with the potential to develop psychological issues. Perfect. Just how I imagined celebrating my 40s.

‘Rob, from here she needs Botox injections to paralyse her vocal cords so that she can breathe. Usually works well. I’ll set it up now.’ He picks up the phone and dials.

Botox? So now I’ve joined the elite community of Botox users. Add that to the above description. Wrinkle free cords - I’d rather they got rid of my deepening frown lines.

‘Okay, so that’s arranged,’ says the Prof as he puts down the phone, scribbles in my patient file and shows us out.

Rob walks me to the lift. I stand inside, my back to the cold mirror. How quickly is this going to settle and when can I get on with my life? Chronic. The word is irritating me.

I touch Rob’s arm and mouth, ‘Chronic. How long?’

Rob looks away, avoiding eye contact. I touch his face and motion ‘How long?’ Again, he looks away. Why? What is he not telling me? Panic starts to rise and grips my gut. He kicks at something on the floor. Finally, he reaches for me, cups my face and runs his thumbs along the dark circles under my eyes.

‘Kim, chronic is forever. There is no cure.’

My stomach drops as my world involutes. What does he mean there is no cure? I can’t possibly never speak again. How do I live with constant laryngeal spasms, coughing, retching, unable to breathe and these rabid sounds that come out of my mouth? My mind cannot comprehend what he’s just said. Is this me for the rest of my life? What about my children? I want to scream “This can’t be happening to me!” Botox was going to fix this.

I move away from Rob and slump against the cold, clinical lift, numb, helpless and devastated. How can this be? I have no idea but I know, deep inside, that I cannot give up hope. Somehow I will beat this disease, breath by breath, spasm by spasm. I will beat it moment by moment, hour by day by year. I don’t know how but I will. My God is surely bigger than this and I will speak again. I have to. But how? The prof just said I never will.

The lift opens. I step out into the magnificent sunshine, into a future, uncertain and forever changed. DM

Hot Tea and Apricots: A Memoir of Loss and Hope by Kim Ballantine is published by Nurden Cross (R300). Visit The Reading List for South African book news, daily – including excerpts!

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