It's Not Yet Dark by Simon Fitzmaurice

Author:Simon Fitzmaurice
Language: eng
Format: epub
Publisher: Houghton Mifflin Harcourt

A life

The nurses are crying. This is the goodness of people. They have come out with me in the ambulance home and they are crying because they are saying goodbye after four months together. I’m crying, of course. Four months is a long time in a room with no windows. They leave and I’m home. In my bed. In my bedroom. I can’t take it in. It’s all wood and colour where my world has been white. It’s like butterscotch to my eyes. An orgy to my senses. I take it in.

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I recover, but everything is changed once more. My hands are very weak. I use my touch phone as a mouse for my laptop so I can write. My voice is low and difficult to understand but I can still speak. I’m on a ventilator. The biggest change of all. The defining change. I now have a little box beside me that generates my breath, fills my lungs with the air my weakened muscles can no longer provide.

That little box has saved my life.

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In the hospital I became aware that writing with my hands was becoming more and more difficult. An inspirational occupational therapist, Sarah Boyle, organises for a rep from a computer company, Nick Ward, to fly over from England to demonstrate an eye-gaze computer with me. It is extraordinary. A revelation to me. Freedom. My hands back, with the movement of my eyes.

Nick comes out to Greystones with my computer, funded by the incredible Irish Motor Neurone Disease Association. He is a gentleman with a droll British wit. He sets me up. A friendship is born. The computer enables everything: writing, internet, phone, text, TV. I’m driving my chair with a switch operated by my head. Try and stop me.

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Our lives have changed again. I now have a nurse day and night. A stranger in our home. Footsteps at night in the hall. But help, where before my wife and my family were struggling to survive. I no longer have to wake Ruth throughout the night. Independence during the day. Ruth starts to sleep, leave the house without fear. A life.

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I watch an Irish documentary about ALS and am struck by an element at odds with my experience. It concerns Professor Orla Hardiman, head of ALS research and care in Ireland. In the documentary she is introduced as ‘a tireless patient advocate’.

When I collapsed and blacked out in the Beacon Hospital, they put me on a ventilator to keep me alive. I woke up terrified and disoriented. When I gathered myself and realised the situation, my first thought was: I’m in the wrong hospital. I should be in Beaumont, under Orla Hardiman’s care. But her response was: ‘We do not advocate ventilation for patients with ALS.’

I and my family were beyond stunned. ‘Do not advocate.’

My sister Ruth is a powerhouse and she gathers every piece of information about home ventilation and we forge our own path. But I think of those who don’t have that support.

Ventilation and ALS is a sensitive topic.

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