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Do or die!

If I can't live my life, I"ll live my dreams instead...


Published by: Elizabeth Barnett & Jai Breitnauer
Published on: 4th August 2011

Walking back from the bar with a couple of pints, I smiled at Mark. My best friend since school, I’d known him for as long as I could remember. We were dead close. So close, we could easily be more than just friends.
But I’d never let on about how I felt – didn’t want to lose him. He’d always been there for me as a friend, from protecting me from bullies in the playground to propping me up when I discovered I’d inherited the Huntington’s disease gene from my dad.
I couldn’t risk telling him my feelings, then lose him totally if things didn’t work out. Too busy thinking, I walked straight into a chair.
‘Whoa there!’ Mark teased. ‘No more beer for that lady!’
‘But I’ve only had a shandy!’ I cried.
‘Yeah, right,’ he grinned, clinking my glass. Then he saw the serious look on my face. ‘Clancy, what’s wrong?’
‘I’ve been bumping into things for weeks,’ I sighed. ‘I can’t put my make-up on because my hands are shaking, and I’m dropping things at work. I’m worried it’s the Huntington’s.’
‘Slow down,’ Mark soothed. ‘Even if you do have Huntington’s – and we both know that carrying the gene doesn’t mean you’ll suffer from the disease – the symptoms don’t start until you’re in your forties. You’re only 27.’
I nodded but, deep down, I was sure something was wrong. I’d been watching Dad deteriorate my whole life, knew all too well what happened when the disease set in.
So I made an appointment to see my consultant.
‘I’m afraid you are suffering symptoms,’ he said sadly after doing some tests. ‘Sometimes, when the gene is passed from a man to a woman, early onset can happen. I’m sorry.’
Devastated, I walked out to the car in a daze, drove straight home.
Back at the flat, the first person I called was Mark – I didn’t want Dad to know, sure the guilt would kill him. ‘I’m dying,’ I sobbed when he arrived. ‘It’s all happening too quickly, there’s so much I wanted to do…’
‘Clancy, you’ve got years not months!’ he cried.
Putting one hand on my chin he lifted my tear-stained face… and kissed me!
‘What about the Huntington’s?’ I whispered. ‘I’m going to end up in a wheelchair, unable to speak.’
‘Not for a while yet,’ he smiled. ‘And when you do, I’ll care for you.’
Within months, Mark and I had moved in together. He made me so happy, I almost forgot I
was terminally ill. We even decided to have a baby, despite the risk of passing on Huntington’s.
When Sophie was born, I was so happy. But a few days later, I took her to see my dad. He looked at her, cradled in my arms, and saw how they shook. That’s when I told him. ‘I’m so sorry,’ he whispered. ‘I never meant to hurt you.’
‘It’s not your fault Dad,’ I smiled. ‘You didn’t even know you had Huntington’s when you and Mum had me.’
But I’d known… Looking at little Sophie I suddenly felt sick. What had I done? ‘We’ve been so selfish!’ I sobbed to Mark later.
‘It’s a lottery, Clancy, she might not even have the gene,’ he tried. But I was adamant, no more kids.
As Sophie grew up, she took everything in her stride – my condition, and the knowledge she could have it, too. God knows how, though. By the time I was in my mid-thirties, I had to use a wheelchair, slurred my speech and shook all the time.
I had to give up work as a chef and was too embarrassed to go out. If it wasn’t for Mark forcing me to come with him to the supermarket, I’d never have seen the light of day.
‘You can’t waste your life wondering what might have been,’ he insisted. ‘You need to take the bull by the horns.’
‘Hmph,’ I grunted, staring grumpily at the ad for Alton Towers showing on the telly.
‘I’d love to go there!’ Sophie grinned.
Suddenly, something in me snapped. ‘Okay then, let’s go.’
‘It’s a theme park love, with loads of rides…’ Mark began,
but I waved him silent.
‘I know, I’m not an idiot,’ I barked. ‘But you’re right, I’ve hidden away too long. If I don’t start getting out and doing a few things soon, I won’t be able to.’
A few weeks later, as we waited in the queue for the Corkscrew, I smiled at Mark nervously. ‘Are you sure they’ll let me go on?’ I said. I’d be mortified if I got turned away.
‘Of course, I phoned and checked beforehand,’ he grinned.
Just then the ride assistant waved us forward, and Mark pushed my wheelchair up the ramp. Before I knew it I was being lifted into my seat, the neck brace was coming down. Maybe this wasn’t a good idea.
Clutching my Mark’s hand, I held my breath as the carriage creaked to the drop point. We hung there for a split-second. ‘Awesome!’ Sophie gasped. Then suddenly we were plunging into a black hole, spinning round, doing a loop the loop.
‘That was amazing!’ I gasped as the ride juddered to a halt. ‘Can we go around again?’
I spent the whole day on the wildest rollercoasters we could find, and I’d never felt so alive! Back home, I decided this marked a new chapter. ‘Right, I’ve made a list,’ I smiled to Mark. ‘All the things I want to do before I die.’
‘Good on you, love,’ he grinned. As he read, his face whitened though. ‘A parachute jump! Love, it’s important to have dreams, but you need to be realistic.’
‘I’m bored of being realistic,’ I snorted. ‘It’s time to live a little.’
‘Well, there’s no way I’m letting you do a parachute jump,’ Mark said. ‘But leave the rest with me.’
Over the last couple of years, he’s been as good as his word. I’ve been in a Ferrari, had a flight in a helicopter, ridden a horse and presented the match ball at Derby County FC. I’ve met loads of famous people, like Shane from Boyzone and Peter Andre – and we still visit Alton Towers every year!
Sadly though, I’ve also seen my dad die. He wasn’t able to speak at the end but, as Mark pushed me to his bedside in a wheelchair, the sadness on his face broke my heart.
‘I love you,’ I told him before he slipped away. I hope he heard me.
Sophie, now 13, can’t be tested for the gene until she turns 18, but she’s in no rush to find out her fate.
I’m in the final stages of Huntington’s now, and I’ve been clear with Mark. Whether I’m here for another couple of years, or just a few weeks, he and Sophie aren’t to mope around when I’m gone.
I wasted some of the best years of my life because of Huntington’s, I don’t want them doing the same.
Clancy Walker, 41, Derby