The saying ‘opposites attract’ could have been written for me and my husband Dave.
When we met in 1995 through mutual friends we were both seeing other people, but even if we had been free agents, I wouldn’t have gone for him. He was a blonde builder who had left school at 16, I was a journalist and had always gone for dark-haired, academically minded blokes.
When we both found ourselves single two years later and Dave asked me out, I hesitated – but then thought, why not? He was fun, and that’s what I needed.
Three weeks later, he proposed and I said yes. A couple of friends thought I was being reckless, that I was on the rebound, but in those weeks I got to know the real, kind-hearted, family man that Dave was, and I fell in love.
Seventeen years later, we are still happily married and living in Florida with our three amazing daughters.
I have worked at my dream job on a national American magazine. Dave has coached little ones at YMCA soccer and basketball. For a long time, life was everything we dreamed it would be.
Then in August 2017, after experiencing issues with his legs and then muscle twitches all over his body, Dave was diagnosed with Motor Neurone Disease, also known as ALS: a progressive, neurodegenerative condition where the motor neurones that connect to muscles die, rendering them useless. He was 45 years old.
Most people diagnosed with ALS die within three to five years after having lost complete control of their bodies, and there is no effective cure or treatment.
I remember the moment we found out. Dave was quite level-headed considering – his main concern was for our daughters, and how much we should tell them.
He promised he would fight to make every day count, and was determined that this diagnosis wouldn’t define him or our lives.
As his wife, however, I was totally crushed. I’d never had a doubt that we would be together forever, that we would grow old together with our grandchildren and God knows how many dogs.
Yet there we were, our bubble burst, and I was faced with watching the love of my life gradually lose all movement and die a premature death.
Dave said to me at the time: ‘I bet you wish you hadn’t fallen in love with me!’ I wept, not because I was sad, but because I was thankful that even with this death sentence, I would get to spend every day with my soul mate. I knew then that we would make the best of it.
Dave’s progression has been pretty steady. For a while, we vowed to do everything on his bucket list, which included trips to Alaska and Cuba for our wedding anniversary.
Last summer we went to Yellowstone Park, cramming 3,000 miles into two weeks, but I realised it was probably the last time we could embark on such an undertaking.
Dave is now in an electric wheelchair all the time. A couple of fingers on his left hand work enough to drive his chair but that’s pretty much it. He can still just about talk and eat but it’s getting harder.
I have gone from being a wife and a lover to a full time carer, something that if I’m honest doesn’t come easily to me. I get him up, bathe him, dress him, feed him, take him to the bathroom – it’s not something I ever expected I would have to do for my husband and I hate seeing him lose his independence.
Inevitably it has changed the way we love each other, too. In some ways, our love is deeper and we are more connected on a spiritual level. We value the little things more, like a kiss and a hug, or my hand on his while we watch TV.
Dave tells me all the time how amazing and beautiful I am and how much he appreciates what I do for us all.
Looking after him is an act of love – when you can wipe another person’s bum, feed and bathe them, it’s love for sure.
We talk about what’s to come – he wants me to meet someone else so I won’t be lonely after he’s gone. Death holds little fear for him because he feels his parents will be waiting, so he is able to comfort me and talking about it has made our relationship stronger.
Death is one of the oldest taboos and I believe he will never be far away once his body has left this world.
Sadly, the passion isn’t there as much anymore. I think Dave misses it more than me but he is limited physically and I have such different priorities now – just keeping him comfortable and alive for as long as possible are the things I think about more than anything.
By the time bed time comes around I am mentally exhausted and just want to sleep, ready to do it all again the next day.
Dave once asked me: ‘If you knew I would get ALS would you still have married me?’ and without a doubt my answer was – and still is – yes.
The thought of not having our kids, or having lived a good life together and created so many memories – I’d do it all again just to have them, and to have him in my life.
To support Sharon and Dave in raising awareness about ALS, visit facebook.com/pg/livefasttakechancess/
Last week in Love, Or Something Like It: My husband became my wife and it’s made me love her more
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Love, Or Something Like It is a regular series for Metro.co.uk, covering everything from mating and dating to lust and loss, to find out what love is and how to find it in the present day. If you have a love story to share, email rosy.edwards@metro.co.uk
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source https://metro.co.uk/2020/05/23/husband-dying-als-caring-12720369/
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