Aussie mum’s brave battle with locked-in syndrome

'All I could do was blink'

Four years ago, Rachel Capps, a mum-of-three and lawyer, woke up with a spinning head. She went on to have a catastrophic stroke which left her unable to move anything except her eye lids. Now 45, she shares her remarkable story with that’s life!

Biting into a chicken schnitzel sandwich,  it tasted like the best thing in the world. I was enjoying lunch with my husband Shane, then 42, and kids Isabella, then eight, Joshua, seven, and Harrison, six.

I chewed carefully, not only to savour the taste, but also because I had to. Otherwise, I could choke.

Just six months earlier, I’d been a busy mum and lawyer. Now, sitting in my wheelchair in the hospital cafe, just eating a sandwich was an accomplishment.  How did it come to this?

In May 2013, I’d woken to discover my head spinning, as if I was on a high-speed carousel. I knew instantly that something was seriously wrong.

I woke Shane, who called an ambulance right away. By the time paramedics came, I couldn’t walk and my jaw moved wildly. My mouth filled with blood as I bit my tongue. Then the world went black.

Supplied: Shane and I on our wedding day

For the next few days I drifted in and out of consciousness. Eventually I felt more lucid, but my limbs were heavy and I couldn’t move.

All I can do is blink, I realised in horror.

‘You’ve had a stroke. Sometimes life throws these little curve balls,’ I heard a doctor say.Little? I thought. This is a monster!

Shane appeared at my bedside. ‘This won’t be forever,’ he said encouragingly. Unable to reply, I hoped that he was right.

Soon, it became clear how serious things were. I’d suffered a massive brain stem stroke.

I’m double-jointed, and the doctors thought that this, combined with actions like running for the train with my heavy bag, had caused whiplash. A tiny tear then caused a blood clot which had travelled to my brain.

Left with locked-in syndrome, all I could move were my eyelids – and even that was hard. I couldn’t speak, chew or control my bladder.

I’m awake in a dead body, I realised.

Supplied: Isabella and I when she was a baby

To signal my needs, I spelled out words with a communication board. The nurses and Shane followed my eye movements to spell out each letter. It was frustratingly slow, but it was my lifeline.

When the kids came to see me, it broke my heart. 
I longed to hug them again and tell them I loved them. But all I could do was blink back tears.

My best friend Iesha read me inspiring stories about recovered stroke survivors.
I can do this, I thought.

As Christmas approached, I’d been in hospital for six months when we held a family party in the hospital garden.

Watching from my chair as everyone ate and chatted, I sank into myself. As the sadness and frustration built up, I wanted to explode.

After everyone left, I turned to my iPad. Thanks to therapy, I had slowly learnt to type with one finger.

I want to die, I wrote
to Shane. At that moment, Joshua peered over my shoulder and read my words. I felt terrible.

Supplied: Shane has been my rock

Still, I began researching euthanasia. I just couldn’t face a future the way I was.

Euthanasia is illegal in Australia, and I couldn’t starve myself to death either. 
I can’t let my family watch that, I realised.

In time, my determination and will to live returned.

One evening, I was surprised when lots of visitors arrived in my room. Among them were my brother Mark, my friend Jo, Iesha and her husband Yuggi.

Together, they revealed matching butterfly tattoos made from my initials – RC. 
‘You’re our butterfly coming out of a cocoon,’ Iesha explained.

Their touching commitment to my recovery strengthened my determination.

Supplied: At work on my book

My weekly regime became occupational therapy, and rehab at the gym. Eventually I could even go down to the hospital cafe for a family meal, which was wonderful.

By the time I went home in October 2014, I could move my head side to side, eat, and use my index finger.

I had a carer by day and at night, Shane looked after me. 
I added hydrotherapy and a special electronic bike to my rehab, but it was hard to get used to sitting at home.

When I was little, I dreamt of becoming a writer.
Why don’t I try to write my story? I thought. The tales from other survivors had meant so much. Maybe this is my destiny?

I already typed short messages each day, but it was painstaking with one finger.

Often, my other fingers skimmed the screen, so I accidentally opened other programs or deleted my work.
Slowly but surely, I bashed out each step of my journey.

For seven months, I poured my heart out. When
I finally finished in January, I was delighted.

I’ve already had some interest from agents and plan to have my book published.

Being locked in has had a huge impact on my life. But it has allowed me to fulfil my dream of being a writer, too.

It would be amazing to hug my family again or say ‘I love you’. Until then, I want to write as much as I can.
In that way, my stroke has set me free.

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