Stories

Stories >> Stories home >> One in a million...

One in a million...

...but that isn't always a good thing


Published by: Jai Breitnaur
Published on: 21st April 2011

With my beautiful white gown swishing behind me, I walked down the aisle feeling like the luckiest woman alive. But I wasn’t some spring chicken embarking on a new life with the man of my dreams. No, me and Rob had already been married for 40 years – and today we were renewing our vows.
‘You look beautiful, Mar, like you did on our wedding day,’ Rob grinned as I met him at the altar.
After promising to love and honour each other for a second time our family and friends, including our son Duane, 40, followed us to the reception.
And that’s where things were different from our first time…
You see, 40 years ago Rob was the life and soul of any party –
first on the dance floor and the last to leave it.
Even six months ago, he’d been chasing our grandson Carter, three, around the park. But then things had started going downhill.
First to suffer had been our sex life. Rob was prescribed Viagra, but he never got the prescription because, before then, he’d begun to wet himself.
‘Men of a certain age…’ the doctor had sighed sadly, handing Rob some leaflets.
Before long, Rob had started suffering from constipation, numbness on his left side and forgetfulness. Yet each time we’d gone to the doctor, we’d been told it was just his age.
One night, I’d watched Rob clumsily make his way into our bedroom, wearing incontinence pants like an old man, and I’d broken down.
That wasn’t my Rob. Why wouldn’t someone help us?
Back at the doctor’s, I’d demanded we see a neurologist. ‘He must have had a stroke or something,’ I’d said. ‘This has happened too quickly to be age.’
Rob had been referred for tests and, over the next six months, endured all sorts of invasive procedures. I’d kept myself busy organising the renewal of our vows for our ruby wedding anniversary.
And I was glad we’d made the effort, despite Rob’s poor health.
A few weeks later, we went to see the neurologist who finally had some news.
‘Well, it’s not a stroke,’ he said, but his face was grave. ‘I’m afraid Rob has a very rare condition called multiple system atrophy, or MSA. Every part of his body is slowly shutting down.’
There was a one-in-a-million chance of getting it.
I gripped Rob’s hand as he asked: ‘What’s the treatment? What can we do?’
The neurologist shook his head. ‘It’s terminal. All we can do is manage your condition.’
Letting out a cry, I flung my arms around Rob.
‘Now, now, none of this, Mar,’ he whispered. ‘You need to be strong for me. I’m sure we’ve got plenty of time.’
‘From the first onset of symptoms, you could have nine years,’ the consultant agreed.
‘See? You’re not rid of me yet,’ Rob whispered.
I couldn’t believe how brave he was being about his future.
Over the next few weeks, I did loads of research, read about people living with the condition.
‘Physiotherapy, speech therapy…’ I sighed going through the treatments Rob would need. ‘But this must be in the future?’
‘I guess,’ Rob smiled as I handed him a cuppa. His hand slipped, and the mug dropped to the floor.
‘Are you okay?’ I gasped.
‘Course,’ he said, forcing a smile.
But, over the next few weeks, it became harder for Rob to hold things – even a biscuit. He became so weak, we had to get him a wheelchair.
In months, the living room became a bedroom, and I was getting up at 6.30 each morning to give my hubby a bed bath and change his incontinence pants.
Just a year ago, he’d been running around after little Carter, now our grandson helped him drink his tea and change the channel on the remote. Rob was a shadow of the man he used to be.
‘Why don’t you put me in a home?’ he whispered one morning, after I’d had to change him for the third time in less than two hours.
‘Don’t ever say that,’ I snapped, then I started to cry. Rob pulled me on to the bed beside him and hugged me tight, his arms feeling as strong and reassuring as ever.
‘I can’t be without you,’ I whispered, laying by his side.
Soon Rob had a peg fitted to his stomach to feed him, and I needed to draw the phlegm off his chest four times a day so he didn’t choke in his sleep. It was horrid at first, not knowing if I was doing it right or hurting him.
Then, one morning in July last year, I couldn’t wake him. I dialled 999 and they rushed him to hospital, my son Duane driving us behind.
I couldn’t lose him, not yet…
He was stabilised, thank God, but when I saw him he looked so weak and pale. Sitting beside him, I took his hand as his face crumpled into tears.
‘I just want to go to sleep,’ he sobbed. ‘I just want to go to sleep and never wake up.’
I looked at Rob, confused. ‘I can’t lose you,’ I whispered, tears now pouring down my cheeks.
‘Be strong for me, Mar,’ Rob whispered. ‘It’s time.’
No! It wasn’t time! I couldn’t believe what I was hearing, I refused to believe it. This was just a blip, I’d be taking my Rob home soon.
A few days later, he was transferred to St Luke’s Hospice, Plymouth, for some respite care.
‘It’s beautiful here, isn’t it, Mar?’ he smiled as I wheeled him up to the bay window overlooking Plymouth Sound.
‘It’s like being on holiday,’ I joked. ‘The nurses have even given me a camp bed.’
The next day, Duane visited and Rob was in good spirits. But the next morning, he looked unwell.
‘Your cheeks are all red,’ I said, gently wiping my hands over his eyebrows.
‘I’m fine,’ he croaked. Then he sighed deeply. ‘I’m tired, Mar, I think I’ll have a sleep.’
‘Good idea,’ I smiled, getting up to leave. Rob reached for my hand.
‘I love you, Mar,’ he said tearfully, looking into my eyes.
‘I love you, too,’ I smiled, putting my arms around him and resting my head on his shoulder. I listened as his breathing slowed and, when I thought he was asleep, I looked up.
‘Nurse!’ I cried, my heart pounding. Rob was in my arms, still and peaceful – but his eyes were wide open.
The nurse called the doctor, who came in at the same time as Duane. ‘I’m sorry…’ he began, but I shook my head, still clinging on to Rob.
‘No!’ I cried. ‘He’s just sleeping!’
Duane gently prised my arms away. ‘He’s gone, Mum,’ he whispered. ‘And look how peaceful it was, just like he wanted. He won’t suffer any more.’
It was almost a one-in-a-million chance my Rob would get MSA, and he was a one-in-a-million guy. He gave me 40 fantastic years, and I’m lost without him, but at least he’s at peace.
Marylin Killone, 61, Plymouth, Devon