“My twin sister was asked to turn off my life support. I’m so glad she gave me more time.”

Steph-and-Ash-Holt

When I was diagnosed with epilepsy at age 16 it was a massive shock. Before then I’d been an ordinary, healthy, active teenager, and then suddenly I was dealing with this serious health condition.

The seizures I was experiencing – known as ‘tonic clonic’ seizures (previously called grand mal seizures) – would make me go stiff and then start shaking, lose consciousness, and sometimes I’d vomit or become incontinent as well. It was awful when it happened in public, especially at school.

As I got older I tried different medications, and eventually found one that stopped the seizures. It was amazing. After all these years I had my life back. I got my licence and was able to go out with my friends and live a normal life.

After a couple of years of being stable on my medication, my doctors decided to try and reduce my dosage to see how I’d go. A few days later I was jet-skiing with friends when I had a massive seizure and fell into the water – luckily my beautiful twin sister Steph was able to keep my head above water until the boat came back to rescue me, otherwise I would have drowned.

I was rushed to hospital where they stabilised me, but then I went into status epilepticus where I started having seizures that just wouldn’t stop. To minimise any potential brain damage, doctors put me into an induced coma and sent me off to ICU.

This was when everything went from bad to worse. I developed an allergic reaction to the drug they were using to keep me in the coma, called Propofol infusion syndrome. It caused me to have a heart attack and go into kidney failure, and I also developed rhabdomyolysis, where my muscles started wasting away.

Ash-recovery from seizure
"The sudden change of going from a fit and active young woman to not being able to walk was absolutely mind-boggling." Image: Supplied.

It was looking pretty hopeless and at one point my sister was asked to turn off my life support. I can’t even begin to imagine how she felt being asked to do that, and I’m so glad that she decided to give me some more time.

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I woke up after three weeks, and then the battle really began because my muscles had wasted away I woke up feeling paralysed from the neck down, and even lifting my head was a huge struggle. Initially I also had what they called ‘ICU delirium’, where I didn’t recognise anyone, and thought I was on the battlefield. It was completely disorientating.

Once I was strong enough to leave hospital I needed extensive rehab but as there were no age-appropriate facilities available I ended up in a geriatric rehab clinic, which was totally depressing. I had no one to talk to and felt completely isolated. I was facing what felt like a challenge I couldn't win when it came to learning how to walk again, but I was waging an even tougher battle with my mental health.

The sudden change of going from a fit and active young woman to not being able to walk was absolutely mind-boggling.

But I’m a fighter. I don’t give up. So, I knew I had to keep putting one foot in front of the other, and just keep going. Without Steph’s support I really don’t think I could have got through it, she’s always been my rock, always has my back. Our mum and dad aren’t in the picture, so it’s always been just us. She’s literally the reason I’m still here today.

After six months in the rehab facility I was strong enough to go home, and slowly began to get my life back. I was still doing lots of physio and OT work, but I was feeling stronger every day. I remember the first day I was able to run back on the hockey pitch, and even though I could only play for 10 minutes, it was an amazing feeling.

Then in 2014 my life changed again when I fell pregnant with my daughter. Becoming a mum to Eva, who is now three and a half, gave me purpose. I felt like she was the missing piece of the puzzle I needed to mend my broken heart. I am thankful, amazed and overjoyed every day that I get to be her mum.

Ash-with-Eva
"Becoming a mum to Eva, who is now three and a half, gave me purpose." Image: Supplied.

Eva and Steph keep me going even on the days when things feel rough. I’m going through a bad patch right now, suffering from depression, but I know I’ll keep going, for my girls. This experience has taught me to never give up. My hard work and persistence got me walking again, and I know I’ll always keep going even when I’m feeling at my worst.

I’m sharing my story to help raise awareness of epilepsy in time for Purple Day on 26th March.

I want people to understand that epilepsy doesn’t define a person, and you shouldn’t treat someone with epilepsy any differently to anyone else. When we’re isolated and treated differently it can have a huge impact on our mental health and wellbeing.

Just talk to us, learn about epilepsy, don’t sweep it under the rug. And I’d like to encourage everyone to learn basic seizure first aid, so they know what to do – it could save someone’s life one day.

Seizure First Aid – Tonic Clonic Seizures

Things to do:

  • Stay with the person
  • Time the seizure
  • Keep them safe; protect them from injury, especially their head
  • Roll them onto their side after the jerking stops (do this immediately if there is food/fluid/vomit in the mouth)
  • Watch them and monitor their breathing
  • Gently reassure them until they’ve recovered

Things not to do:

  • Put anything in their mouth
  • Restrain them
  • Move them (unless they’re in danger).

Not all seizures will require medical assistance. Call an ambulance if:

  • You’re in any doubt
  • Injury has occurred
  • There is food/fluid/vomit in their mouth
  • The seizure occurs in water
  • The person has difficulty breathing after the jerking stops
  • Another seizure quickly follows
  • The seizure lasts longer than five minutes
  • The person is non-responsive for more than five minutes after the seizure ends.

You can find out more about epilepsy from Epilepsy Action Australia (EAA) at www.epilepsy.org.au.

Mia Freedman speaks to former model Bec Craven, who caught a cold overseas and ended up with heart failure, on No Filter below.

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