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15 June 2011

Silence and the gift of speech

Born with cerebral palsy, an everyday health incident as an adult left Lesley Potgieter severely handicapped. Here is her account of what it is to lose your voice and more.

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Lesley Potgieter was born with cerebral palsy, which was well-managed throughout her life. But after what should have been an everyday health incident as an adult, she became severely handicapped. Here is her account of what it is to lose your voice and more.

This is not a story as it has no ending. It is an extract, a fragment of my life.

I had pneumonia. The doctor said there were no residual implications. I disagree, but I’ll let you be the judge.

I let out a silent scream. I peer at the bedside clock. It is silent, too. Alongside me I hear the soft sound of my husband breathing. In the dark I converse with those I love, imagining life as it used to be.

In the real world, I open my mouth and a stranger speaks. The words are clear when I form them, but come out muddled and unrecognisable. Consequently I am silent most of the time. I am a statue, a mime artist, as I painfully try to communicate. Sometimes it’s a comedy with me as the punch line. I laugh along with those who surround me; it is my only defence.

I have cerebral palsy. I may look, act, even speak the same way. Up until I got pneumonia, my relative sameness was an illusion we all shared. But pneumonia turned out to be the kicker for a congenital hemiplegia I suffered at birth, and everything changed.

At first, we were all flummoxed at the change. Eventually a speech therapist named it, and named the effect: she explained to me, to my family, that it was as if I had suffered a stroke.

But the business of life must be lived, and that is what my husband and I do, with this new version of me. Of course I was slower, but we still laughed at the same jokes; we had two beautiful children; the world had not stopped – it had just taken an unexpected turn.

At first, my loss of speech – the absence of my constant chatter – held a certain novelty for my husband. We chose to deal with it as we had with other difficult times in our relationship – with laughter. We had fun as I tried to express myself and my husband tried guessing what I was saying. It felt like a game of Pictionary and charades. Sometimes we landed up in fits of laughter.

But sometimes I feel like an alien. I appear to be the same, most of the time, but then I’ll have a day on which my arm twists up like the branch of a tree and the reality crashes in.

It is the whispers I fear, and the ignorance that fills me with rage. The whispers allow me no reaching out; they deny who I truly am or who I wish to be. Consequently I'm alone and aloof, marooned for the most part by my own making. I keep my own council. I have learnt over time it is safer.

The surprisingness of children

Refuge came from a surprising source, our children.

I've always believed in being honest with them. I hoped that by explaining exactly what was happening, I would help avoid misconceptions others may pass onto them. So I answered their questions truthfully. I gave them the opportunity to be angry and upset, explaining that these emotions were normal. I listened when they needed to talk.

Given this outlet they seemed to accept what was going on. They developed an extraordinary matter-of-fact attitude to situations. In the beginning, when speech was beyond me, I would clap and stamp to attract attention. This caused confusion for the family pets, and whenever I clapped or stamped, four concerned figures would make their way towards me. When I started to regain a voice – a voice that sounded like it was coming from the bowels of the earth – my sons found a likeness to a character they identified with: Darth Vader from Star Wars. They interpreted for me when no-one else understood; when the adults around me became exasperated, my children had patience. It was as if God had blessed them with tolerance beyond their years.

I had always loved reading to, and then with, my children. What upset me the most, now, was that I could not reward them with a gift we shared: being transported to other worlds through books. But a surprising gift lay in store. My sons began reading to me. Simple books. One or two pages at first, but as they became more fluent, the stories became more difficult, and the pages read were longer.

But it is terribly hard for my sons. At night when they go to bed and all is still, I hear an unfamiliar voice telling them a story. It's my voice, retelling a book I had recorded for them. It is these moments that make the situation unbearable for me.

Hero dog

Another source of amazement was my canine companion. From the moment I returned from hospital she had been by my side, licking my neck in the hope of my voice returning, responding to my grunts and groans. Each morning, at the sound of the alarm, she's at my bedside, following me to the boys' rooms, being my voice when I am unable to wake them myself.

She lies in my dressing room as I shower, and barks to let me know someone has arrived. She is my all-round protection. She neither judges nor shares her opinion, she merely loves. And that is powerful and comforting.

Guilty emotions

I watched my mother punish herself. I understood. But it was not her fault. No one was to blame.

At night when sleep was impossible, I realised that I, too, was battling irrational guilt. I felt responsible for this interruption to our lives. It was not what my husband had signed up for when he married me, and it was not how I wanted him to see me. I have become an unfair burden.

Not least of my guilt stems from the fact that we went from being a very loving couple, always hugging and kissing, to a physically separate couple. My body had become extremely touch-sensitive, and was unable to handle his hugs, his kisses. One of the hardest losses – perhaps even harder than not being able to talk – was the loss of physical closeness. It makes me feel ostracised and alone.

Progress – or not

There are degrees of progress, and success is subjective. I had gone from being unable to wake up, to doing the children’s breakfast. Instead of taking 15 minutes to fetch the boys, it was taking me 10. It took me until the middle of the morning to feel exhausted, instead of immediately after I had woken. Still the speed at which I was recovering came under debate, and I often felt like a mannequin in a shop window as people spoke over or about me instead of to me. According to them, there was no improvement. If they had asked, I would have been able to point out areas of change. But no one did, so I didn’t either.

Some say I am lucky not to be more disfigured, and for the most part I would agree. However, sometimes it is a curse. My birthday is coming up and all I want to do is curl up and disappear. I am tired of smiling for everyone. I am tired of being placated as if I am a child.

How the world becomes a threat

One of the difficulties about the position in which I find myself is that I have no means of voicing an opinion. For instance, the other day the security company came to fix the alarm system. Being greeted by a friendly face, the technical controller smiled and walked in. When he realised my disability, the terror that crossed his face made me want to laugh out loud. Obviously, this had not been handled in the course entitled ‘dealing with the public’. When he recovered from his shock, he spoke a little louder, as if I were old. I left him to his duties.

A while later I returned to discover that in my absence he had reclassified me as deaf, and he had developed an elaborate set of hand gestures to use when explaining things. I found myself wanting to push his face into the milk tart I had made for my guests.

I don’t think people quite realise what a gift simple speech is. It's taken for granted that when a question is asked, you answer. I feel I am living in a vacuum and screaming to come out. It takes all of my energy to get something out, only to be told: “can you repeat that?” Or they pretend to hear me, but I can tell by the impatient way they tap their fingers or glance somewhere else that they aren't listening. I hold my own council.

Another example is a party my sons attended at a games arcade. In my former life, I would have told them the rules, given the limits where they were allowed to roam, and sat back and chatted to other moms. But now I had no means of communicating, and I spent the time watching vigilantly where they went. At one point, I lost sight of them. I scoured the rows but couldn’t see them. Had someone taken them? Had they seen something more attractive outside the doors of the arcade and decided to investigate? Eventually I found a security attendant. He simply couldn’t understand what I was trying to say. I retrieved my pen and notepad as fast as I could and scribbled down my problem, only to realise he was illiterate.

There was a happy ending: after a while I found my two adventurers safely strapped inside the swaying pirate ship, screaming with delight.

It’s 18 months down the line…

It has been 18 months since I’ve heard my own voice. What I long for the most, and what I've always taken for granted, is the gentle touch of human interaction, and it's this void that has made this period unbearable. I fear that by the time touch returns, my sons will have outgrown childish cuddles and spontaneous affection. Though I long for their warm embrace, I fear they feel I am rejecting them.

I do know that each of us has our own unseen war. For now this is mine. The ending is unclear. Perhaps the lesson is self-acceptance, but I have learnt that people talk without listening, and speak without hearing. I have learnt the true meaning of love, that children are a marvellous gift and that speech is often only a noise to fill up the emptiness around us. Hearing is being able to distinguish a true sound when it is uttered. For now, I wait to hear my own voice.

(Lesley Potgieter, Health24, June 2011)

 
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