Hazel

Alan and I met on 14th June 2006.

We married on 14th June 2014 after eight years of absolute bliss.

On 5th June 2019, after a couple of months in Marie Curie Hospice, he looked me straight in the eyes as his lungs failed to take one more breath.

Nine days later, on our 5th wedding anniversary, I sat by his coffin, saying my last goodbyes.

On 21st June we held his funeral. It was his 65th birthday.

Alan, the man at the centre of my world, my formerly fit and healthy husband, who people called a hero and inspirational, was no more.

Even though we were told back in November 2017 he had a life limiting disease, even though I had prepared for his death, when it came it was still an awful shock.

I had grown up with the expectation of meeting a man, getting married, having a family and growing old with my chosen partner. Life didn’t work out that way.

After a failed marriage in my 30’s at age 49 I had a good job, a good social life, but I was not happy. I was childless (for medical reasons) and felt empty. I yearned for a soul mate. Someone to share my interests with. Someone who I could rely on, love, and be loved by. Meeting such a person was not happening naturally, so I tried internet dating. And that is how I met Alan. From our blind date on 14th June 2006 the happiest chapter of my life began.

After the shocking news that Alan had Motor Neurone Disease in November 2017, I went into grief. It was hard to accept he was going to die in 6 to 24 months as he was so fit and the initial symptoms were minor – loss of strength in his right arm. However the disease progressed quickly, causing weakness in other limbs and breathing issues. From day one I kept a daily journal, and notes of all medical meetings. Poems started to spring up in my mind so I put them in the journal too. In less than 6 months from diagnosis, I went from high flying business woman, to full time carer, secretary, housekeeper, ‘nurse’ and provider of as much love and support as I could muster.

Quite early on after his diagnosis we decided to ‘go public’, using Facebook to keep everyone up to date on Alan’s progress and educate people about the disease. Sometimes I poured out my feelings of sadness publicly via social media, which usually resulted in copious messages of support from friends and family. Despite such support, at one point I felt so completely heartbroken, I called the Samaritans. Discussions with a bereavement counsellor, a few months later, revealed I was in anticipatory grief.

Life with MND was exhausting. Fundraising events and a steady procession of friends, family and medical professionals visiting Alan at home meant there was never much time to rest. Despite everything he and I managed to stay positive and avoid becoming absorbed in self pity. We were deterimined not to let MND define us and to live our lives to the full.

The holiday adventures we had enjoyed before diagnosis did not stop. We went to Vietnam for two weeks in April 2018 – using a wheelchair to get around. During the summer of 2018 we did a road trip to the top of Scotland, and holidayed in Wales twice – again using a wheelchair, and renting disability friendly properties to stay in. In December 2018 we rented a fully adapted cottage in Yorkshire and hired in a carer to help me with hoisting and all Alan’s personal care needs, because by then he was 100% paralysed, on a ventilator 24 x 7, and being fed via a tube in his stomach because he had lost the ability to swallow. In the last few weeks of his life, he lost the ability to speak.

Three weeks after Alan died, I rented a remote cottage in North Devon and started writing a book. A true story about love and a positive life with MND. Drawing on my journal notes and the poems I composed, it chronicles the last 18 months of our life together.

During his illness Alan had told me what he wanted me to do after he died – including travelling, being pampered and finding someone new but I have found returning to life as a single person tough – made harder by the arrival of Covid. 2020 was to be the year I picked myself up and started living again.. He would be horrified to think I had been confined to our home instead of carrying on our adventures with him in my heart. But writing the book, which will be my gift to the world and a legacy to the man I loved so deeply, keeps me going. I want to see it published and start doing talks around the UK to promote it. The profits from it will hopefully help find a cure for this most horrible, neurological condition, and support Marie Curie, Macmillan and Myton Hospice. But more importantly. I hope it will inspire other families who face life with MND.