‘I feel like I have lost 18 months of my life’

Liz Mizen
Liz Mizen
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Liz Mizen used to pride herself on her independence. She cherished her sporty car and was always dashing off somewhere.

Now her biggest aim is to make it to Portsmouth on her own one day.

For someone whose life revolved around taking care of her family and the children she worked with, that loss of freedom has been hard to deal with.

Everything changed in an instant for Liz when she was struck down with a devastating bleed on her brain.

Within days of returning from an enjoyable holiday in Italy, she was in a medically-induced coma, fighting for her life.

While she can’t remember what happened over the next four weeks, husband Kirk and their daughters, Kelly-Ann and Charley, had to live through it all.

‘She woke up screaming saying “Take this pain out of my head”,’ explains Kirk.

‘We called an ambulance and she was taken to QA for some tests.

‘You know it is bad news when they call you into a room. They told us at about 3am that she was being transferred to Southampton with a bleed in the brain. They wouldn’t elaborate any more than that. It was a horrific time.’

As doctors monitored Liz’s condition closely, they discovered she had a heart condition called endocarditis.

A build-up of pressure had caused the plum-sized blockage on the right-hand side of her brain to ‘explode’ and that’s what had caused so much damage.

For Liz and the family it had come as a complete shock. Her only symptoms had been virus-like sweats and some unusual black markings on her foot.

‘I don’t remember the first three or four weeks,’ says Liz, as she sits in her conservatory at her home in Lee-on-the-Solent.

‘I don’t remember being in the neurological department at all. I was transferred to cardiology where they found the fault with the heart and said that’s what had caused the bleed.

‘It was a case of having open heart surgery to repair my valve and before that they’d put me in a medically-induced coma for 11 days. ‘It’s one of those conditions that can lie dormant in people for months at a time. ‘They said how rare it was to have endocarditis as a woman and even rarer for it to have caused the bleed.’

She adds: ‘It’s very strange. I have lost that part of my life. I can only imagine now how awful it must have been for Kirk and the girls to go through that.

‘For a long time I couldn’t even think about it. I feel like I have lost 18 months of my life. I couldn’t do anything, it was very frustrating.’

While the endocarditis was treatable and Liz’s heart could be repaired, the after-effects of suffering a brain injury have been life-changing.

Today – almost three years after the bleed – she’s still dealing with what happened.

The 46-year-old had to give up the job she loved as an inclusion worker at Grange Junior School, in Gosport. She can no longer drive and her vision was so badly damaged that she has to wear glasses and needs special lights to help her see. Liz’s memory has been badly affected but she’s learned to write everything down. Thankfully, her speech and mobility have returned but she still has problems with balance and can’t go anywhere on her own.

Finding ways to cope with the emotional and psychological side effects has been even harder. Liz’s life might no longer be at risk but picking up where she left off wasn’t an option.

‘The biggest fear was that it was going to happen again,’ she says. ‘I’d be crying as I went to sleep saying to Kirk “If I don’t wake up, you know I love you”. ‘I remember trying to fold a blanket and not being able to do it. The first time I stripped the bed it took me three hours to put the duvet cover back on. Even now I’ll do things and think “That’s how you do it”. ‘The fatigue at the beginning was so bad. I’d get up and have a shower and I’d need a rest. I’d have a fear that I’d do too much and something would go wrong and that stops you from doing things.

‘I didn’t know who I was any more. I couldn’t walk, or drive, or see properly, or talk.’

Kirk watched his wife shut down. He could see Liz was frustrated but she couldn’t explain what she needed or wanted.

‘She wouldn’t speak,’ he adds. ‘She wouldn’t tell me what she wanted.

‘From when it happened to about a year ago there was no life in her. It wasn’t really Liz.

‘But I understood and I kept asking questions and if I didn’t get help I would shout for it.

‘You meet some amazing people - but under the wrong circumstances.’

What changed for Liz was that she found Headway – the brain injury association. And Kirk says that finding the charity was like watching her wake up.

Up until that point Liz had felt lost. She struggled to make sense of anything, let alone what had happened to her. But going to the support group meetings was like finding the light switch she needed. ‘I didn’t know anything about Headway,’ she explains. ‘I had an appointment at the psychologists and I tripped at the top of the stairs. As I got up there was a little poster on the back of a door in the stair well. It was for Headway and was appealing for volunteers.

‘I just said “We should see what that’s about”. It was meant to be.’

The charity’s base in Portsmouth is at the St James’s Hospital site in Locksway Road.

Liz was nervous about attending her first meeting, but she soon discovered that those around her understood what she was going through.

‘The best thing about Headway is that when I go through the door and say something, nobody is judging me. You can feel completely relaxed. They will understand. A lot of people don’t. It really was a massive turning point for me.’

Group work helped Liz understand everything from how the brain works to how her family had been affected by her injury. She joined a gardening group and now grows her own fruit and vegetables at home. And the arts and crafts group helped her discover a love for making homemade cards.

In time, Liz’s confidence began to grow, her feelings of frustration started to disappear and she began to have hope. She’s done so well that the charity has now made her one of its mentors.

 ‘For the first 18 months after it happened I spent my time thinking not nice thoughts. I doubted that I would ever be right again. ‘Now I know I’m the same person, just doing things differently. The biggest thing I’ve got from Headway is that build-up of my confidence and someone having a belief in me.

‘When they put me through as a mentor I thought “Someone does believe in me”. I just felt useful and for so long I hadn’t felt any use to anybody.’

She adds: ‘The way you see yourself completely changes. It’s like you’ve lost all control. The frustration is just overwhelming. ‘I could spend my time saying “Why me?” But I don’t. Saying that isn’t going to change anything.

‘My overwhelming goal now is to get to Headway on my own. It would mean changing buses and catching the ferry and I’m sure one day I’ll achieve that.

‘Something like this is bound to change you because things aren’t what they used to be and you have to change to that.

‘Acceptance is the biggest thing. In the last six months I’ve found acceptance and that’s allowed me to do so much more.’

While Liz knows she won’t be able to return to the job she loved so much, she now hopes to train as a counsellor, so she can help others going through the same experience.

‘I’ve always said that what has happened has happened for a reason, so I can do some good for people who are going through the same thing. ’I still feel that some good will come out of this. It’s taken a long, long, time. But in the last six months I’ve started to feel myself again.

‘I’m becoming the same person I was - even though I don’t think I will ever be the same person.

‘Every day I’m glad for being here. I have a completely different outlook on life.

‘As a family we have always been close but this has pulled us together. ‘We had a really good life. We had holidays three or four times a year, if we wanted something, we got it.

‘But those things aren’t important any more.’

FACTFILE

Headway – the brain injury association, gets no government funding and relies solely on charitable donations.

The Portsmouth and South East branch of the charity already runs its own shop in High Street, Cosham and has just opened a second, in West Street, Fareham.

Liz Mizen’s daughter, Charley, works for local hairdressing firm Strands and the salon’s team organised a fundraising night at the Crofton Club, in Stubbington, in aid of Headway – raising £1,600.

To find out more about Headway, log onto headwayportsmouth.co.uk, or call the free national helpline on 0808 800 2244.