At first, I was too consumed by what was going on with my eyes to notice what was happening to my speech. It had been more than a year since I was diagnosed with blepharospasm, an unusual neurological condition which causes the eyes to spasm and close involuntarily. Sometimes I would blink only to find that I couldn’t open my eyes again no matter how hard I tried. It was confusing and frustrating. I was scared.

By that point, I hadn’t been able to drive for many months. Walking down the street had become a challenge, especially in bright sunlight or on a windy day, both of which seemed to make the spasms worse. When lockdown came, it was a blessing. I could work from home. I could keep my camera off during meetings. No one needed to know that my eyes were held open with micropore tape, the only way to get through the working day.

When I first began treatment, my visits to Moorfields Eye Hospital felt like a quarterly game of visual Russian roulette. The gold standard treatment for blepharospasm consists of injections of botulin toxin (Botox) into the muscles around the eyes. The right dosage injected with pinpoint accuracy into the intricate musculature around the eyes. Each time, I braced myself for multiple injections – eyelids, cheeks and forehead – a process of trial and error which often left me black-eyed and, more than once, temporarily blinded for weeks on end until the Botox wore off. With each failed attempt, I felt my confidence, my independence and my hope gradually slipping away.

Still, if I thought then that losing my sight, albeit temporarily and in a spasmy way, was unbearable, it was nothing compared to losing my speech. Gabor Mate writes about ‘When the Body Says No’. I sometimes wonder whether blepharospasm was my body’s way of imploring me to slow down, to listen. Instead, I put my fingers in my ears and carried on. When I refused to take note, it pulled out the big guns – ‘this will teach her, this will hit her where it hurts’ – my voice.

In my work, I used to train people in the art of effective communication; how to make an impact, how to deliver an engaging narrative. I’ve always been good with words. I used to be able to talk freely and clearly without giving it a second thought. I was eloquent, interesting, funny, witty even. Although an introvert at heart, much of my work involved presenting to and training others. I was comfortable speaking to large groups of people. I was a good friend, a great confidante, the parent my kids came to for empathy and advice. And I would just get things done, make those calls, tick things off the list.

Now, speaking takes a lot of effort. The words I think and the words I speak aren’t always aligned. Perhaps the same is true for all of us; we continually make decisions about what we say and how we say it, reframing our thoughts in the moment. For me, I edit my thoughts based on what I can physically manage to say before my breath runs out or before my voice becomes strained and strange. Conversations have become transactional and clipped, generally devoid of humour and joy. My default has become saying the bare minimum. Occasionally around family or close friends I let my guard down and say exactly what I want to say, regardless of how it sounds or how long it takes. And if they dare move the conversation on before I’ve made my point, I’ll clap my hands indignantly to silence them so that I can continue! But most of the time, I say very little, leaving a maelstrom of thoughts, opinions and wasted quips whirling around in my head.

The subtleties of human communication are just that – subtle; so subtle, in fact, that we don’t even acknowledge them until they are missing. Timing, intonation, pace, pauses are all part of the intricate dance we perform in everyday conversation. If any of those are slightly off, we notice. We get frustrated if someone doesn’t come up for air – more monologue than conversation. We grow impatient or uncomfortable when pauses in conversation are a fraction too long. I regularly get a sideways look when an exclamation comes out a little too high, a fraction too loud.

Now, I’m acutely aware of these conversational niceties and how their absence affects people’s reactions to my speech disorder. Sometimes their empathy shines through in a whispered response to a whispered question. Others are simply curious. Some, thankfully not many, are condescending responding slowly and loudly to my stilted questions.

I listen with envy to the free and easy conversations going on around me. I want to join in but often feel bereft when I do. I watch conversations move on, quickly becoming out of reach, once it’s clear I can’t join in.

I now know how it feels to be ‘othered’. In spite of everything, I am grateful for that.

Paula Coniglio, a former Corporate Communications Specialist, spent much of her career helping businesses communicate more effectively. All that changed when, in 2021, she was diagnosed with a rare neurological condition, severely impacting her speech. Paula describes writing as freedom, enabling her to connect with people in ways she is no longer able to in person. Her writing draws on her experience of living with chronic illness, exploring themes of hope and loss, resilience, identity and belonging. She is married with two grown-up children, and lives in Bristol, UK. Words Fail Me is her first published piece.