In April 2017, my daughter, Angela Gates, was diagnosed with an aggressive form of motor neurone disease known as progressive bulbar palsy. The life expectancy from diagnosis is between six months and two years.
Despite the unexpected trauma, Angela greeted this condition with a fierce determination to fight all the way, an attitude that is entirely consistent with her approach to life. But there is only ever one outcome with MND, and sadly Angela lost her battle on Sunday, 18 November. She was just 49 years of age. She died suddenly and peacefully, and the only positive her family can take from this is that she is free of this terrible condition.
While our thoughts are naturally with her husband, Tim, and daughters Victoria and Hannah, it’s also a time to reflect upon her life.
Conceived out of wedlock, born after her parents hurried into marriage, she was a cheerful child, one who could light up a room with her giggles. When she was eight years old, my wife and I split up and divorced a year later. Traumatic enough for any child, but life-changing for her and her brothers at such a young age, and yet she maintained her essentially bright outlook.
After leaving school and going on to college, she became a legal secretary, and eventually gave that up to become a mother at the age of 23. Unfortunately, it was not to be. Her first two children, Charlotte and Laura, were stillborn, but her pregnancies were so far advanced that the unfortunate babies had to be named and granted a Christian burial.
Angela greeted what many young couples would consider a complete disaster with her usual strength and stoicism, and her motherhood wish was granted in 1995 when Victoria, was born. Hannah followed a year and some months later.
It seemed at this point that her life was complete, and it was enhanced some years later when she successfully secured a degree from the Park Lane annex of the University of Leeds.
More trauma waited in the future, when her marriage to Derek broke down. This is neither the time nor the place to go into the reasons for that, but at length she settled down with the man who would become her second husband, Tim Gates. Angela was happy, content, planning to marry, when the devastating blow of MND hit her.
She would not let an irrelevance like a totally debilitating disease stand in her way, and in August 2017, it was my pride and pleasure to escort her into the wedding room where she would become Mrs Gates. I enjoy making videos, but pride of place in my collection is one that I did not produce. It’s the video of Angela defying the speech impediment imposed by MND to say, “I do.”
Despite her deteriorating condition, she never lost her sense of humour, and I recall her chuckling at my suggestion that once the arthritis finally cripples me, she and I could hold wheelchair races round the local supermarket.
We live some distance away, and the last time I saw her was about four weeks ago when she was recuperating in a hospice in North Leeds. She was completely without speech, communicating via a whiteboard and marker pens, but even then, she could still smile at my reference to her ‘Darth Vader’ breath mask, she could still pass the occasional flippant remark, and she was hellbent on getting home, back to a life which was anything but normal, but which she so desperately wanted.
At the same time, she never lost her selflessness. In conversation with my granddaughters, I learned that she had already made plans for Victoria’s wedding, scheduled for 2020. Angela knew she would never make it, so instead she planned to arrange for Hannah to deliver a card on her behalf. It’s entirely typical of Angela to be thinking of others when faced with her own insurmountable troubles.
Some memories come readily to me. On my 49th birthday, she sent me a card which read, “One to go to the big five-oh”, in response to which I commented, there’s nothing like reminding the old man of his advancing years.
When she was a baby, I’d been delegated the responsibility of bathing her in front of the fire. She was about nine months old, and she did not want to get out of the bath. So I left her to play while the water was still warm, and she was in fits of giggles as she used the lid of the soap dish to scoop water out and throw it all over the carpet.
I remember just a few years ago when she jumped out of an aeroplane, skydiving in aid of Tommy, the charity supporting research into stillbirths. I like flying, but as I said at the time, I prefer to stay inside the aeroplane. Naturally, she had an instructor tied to her back.
But that was Angela. Courageous, determined, good-humoured, filled with an overwhelming joie de vivre which let nothing stand in her way.
She leaves behind a husband and two wonderful daughters. She also has three brothers and a half-sister, and of course her parents – myself and my wife, my ex-wife and her husband – and we are all, naturally, devastated by her passing. there are also many, many friends, people whose lives she touched and illuminated with her selfless geniality and sparkling humour. Nothing can fill that gap other than our memories of Angela… Not Angela as she became, but Angela as she was; the bright, sprightly girl, the woman of indomitable spirit and courage, the girl with the smile in her voice.
Angela kept a blog Entitled ‘Little Legs’, a self-deprecating chuckle at her diminutive size. In its latter stages, she detailed the slow progress of the disease. The last entry was in April of this year. you can find it at: https://angie1926.wordpress.com/
Victoria too kept a blog, entitled ‘Daughter of MND”. A frank and open discussion on what she and her sister were going through as they watched their mother slowly deteriorate, you can catch up with that at: https://daughterofmnd.wordpress.com/
Tim wrote a short book detailing their life and marriage from his point of view. Entitled ‘Marrying MND’ it’s available from Amazon, and all proceeds from the book go to the Motor Neurone Disease Association, a charity devoted to helping sufferers, and contributing to research into this devastating condition. You can find more details at: https://www.amazon.co.uk/Marrying-MND-Our-minutes-fame-ebook/dp/B078W7BQYW/
My thanks go to the staff at Leeds General infirmary, and Saint Gemma’s Hospice, Leeds, and the MNDA for the care and assistance they gave to my daughter throughout this appalling episode.
A year and a half ago, just after Angela was diagnosed, I put up a post dedicated to my dog, Joe. He was terminally ill and we’d had him put to sleep. I said at the time that it was the most difficult post I had ever written in 10 years of blogging and 30 years of writing. This piece, dedicated to my wonderful daughter, has now claimed the title.
Angela, we love you and miss you.
Angela Gates: June 28, 1969 – 18 November, 2018