Natalie Adler, 22, South Caulfield, Vic
Waking up in the morning, I struggled to open my eyes. The lids were heavy and I could only see a tiny slit of light. 'I can't open my eyes!' I told my dad Fred.
He looked at my swollen sockets and grabbed his keys. 'We'll go to the doctor,' he said.
At the surgery, the GP took one look at me and referred me to an ophthalmologist. She pried open my lids and inspected my eyes. 'Do you have problems with your sinuses?' she asked.
'Yes,' I said, worried. 'Why?'
'There's nothing wrong with your eyeballs so this looks like a sinus infection,' she answered.
'My head does feel a little stuffy,' I said, relieved.
The doctor gave me some antibiotics to fight the infection. 'I've never seen anything like this before. So we'll have to just wait and see if the antibiotics work,' she said.
'Hopefully I won't miss too much school,' I said to Dad. It was 2004 and being in year 11, I couldn't afford time off.
Over the next few days my eyes opened fully. But a week later they spasmed shut again.
Scared, I went back to the GP, who referred me to more specialists. I spent the next nine weeks having blood tests and brain scans, but no-one could work out why my eyes kept closing.
Despite all the treatments I was given, my eyes continued to spasm shut. Eventually a pattern developed and it would happen every three days. I'd wake up with my eyes closed and they'd stay that way for three days.
I'd prise open my lids with my fingers but my sight would go blurry and I'd get headaches. Being functionally blind was scary at first but I got used to my routine - I had no choice. I went to school when my eyes were open and I stayed in bed when they stayed closed.
But towards the end of the year, with the pain increasing, I had to drop out of school. 'I can't live like this,' I sighed to my mum Lillian. 'Don't worry, we won't give up,' she insisted.
After trying different specialists I eventually found one who gave me hope. He specialised in neuro-ophthalmology. 'You have blepharospasm,' he explained. 'It's an involuntary spasm of the eyelid muscle. But instead of shutting for a few seconds, yours shuts for days.'
'At least I know what it is now,' I said, relieved. 'We'll inject you with Botox every three weeks to relax your muscles and stop them spasming shut,' the specialist said. 'At least I'll have no wrinkles,' I joked.
After being injected with the Botox, my eyes stayed open for five days and then would shut for one day. Although this was an improvement and helped numb my facial pain, my life was still restricted due to fatigue and nausea. I continued this treatment for two years. But by July 2007, the effects of the Botox wore off and I was back to my three-day cycle.
My specialist continued to look for a cure, but then my left eye clamped permanently shut in December 2008. 'You'll need to have a myectomy,' he said. 'It's a surgical procedure to remove some of the muscles responsible for eyelid closure.'
'Will it work?' I asked.
'There's a 50 per cent chance we can cure you,' he replied. In the worst-case scenario, nothing would change.
'Let's do it,' I agreed.
In May 2009, I went in for the operation. 'Good luck,' Mum said, holding my hand.
Hours later, I hazily woke up. I couldn't open my eyes due to the swelling but hearing my parents' voices, I felt relieved. 'The operation went well,' Dad informed me. 'We won't know exactly how effective it is until the swelling goes down, but the doctor was pleased.'
It's now been three weeks since the surgery. The swelling hasn't completely gone down and we won't know for another month if the operation was a success. But in the meantime, I'm hopeful and taking each day as it comes.
Blepharospasm Blepharospasm is an abnormal, involuntary blinking or spasm of the eyelids. Most people develop blepharospasm without any warning symptoms. It may begin with a gradual increase in blinking or eye irritation. Some people may also experience fatigue, emotional tension, or sensitivity to bright light. There is no successful cure however Botox, medication and a myectomy can reduce the severity of the symptoms. For more real stories, click here. |
