Twenty years ago, Suzanne Maguire Phillips was told she had between two and five years to live. Photo / Andrik Langfield, Unsplash
OPINION:
It is now 20 years since, at the age of just 36, I was given what I believed to be a certain death sentence: a diagnosis of Motor Neurone Disease (MND).
Told I would have between two and five years to live because of the severity of this neurological condition, I was advised to put my affairs in order. I never dreamt I would see my boys grow up, or that I would become a medical anomaly, a “miracle”, as people have termed it.
But somehow, I have survived. One of the few – like the late Professor Stephen Hawking – who defies the odds and lives for decades with this terrible disease.
MND is a fatal, rapidly progressing disease that affects the brain and spinal cord. It attacks the nerves that control movement so muscles no longer work, leaving people unable to move, talk and, eventually, breathe. Nobody is clear on the causes – there are thought to be a combination of genetic, environmental and lifestyle factors. In 5-10 per cent of cases, but not in mine, there is a family history of MND.
My symptoms began slowly, insidiously. One day, about seven months before my diagnosis, I noticed that my arm felt weak and heavy when I made a cup of tea. When that didn’t go away, my then-husband, a dentist, advised me to see my GP.
I wasn’t unduly concerned. Neither did I worry when, following my appointment, I received a letter asking me to go into hospital for a battery of tests. I was a healthy, busy woman, with two young sons; it couldn’t be anything serious.
The tests were extensive – five days of lumbar punctures, painful needle muscle tests, blood tests and MRI scans – but nobody said what they might be looking for. Perhaps I was in denial – I was convinced I’d be given a clean bill of health – but I was called into hospital for an urgent appointment.
My husband and I were in the process of separation, so I took my mother, Eve, with me. I remember she stood behind my chair as I was given the diagnosis. I had never heard of Motor Neurone Disease, but as a GP’s wife, my mother knew exactly what it was. Even though her heart was breaking, she realised how much I would need her, so she remained calm and strong.
The doctor, Professor (now Dame) Pamela Shaw did her best to prepare me in the kindest way possible. It was a terrible shock to learn that I would soon be in a wheelchair and probably have only a few years to live. I was so scared, I don’t remember much of what Prof Shaw said.
We didn’t discuss symptoms that day in any detail. But later, when I was mentally ready, I researched them. My greatest fear was – and still is – choking to death, should my throat muscles fail. Reading about MND online only fed my fears because all the stories I found were the worst-case scenario ones – people who declined rapidly and were gone shortly after diagnosis.
My first thought at diagnosis was for my sons, Lance, then only nine, and Aron, just seven. All I could think was that I wouldn’t see them grow up, go to university, meet partners and have children. I made the decision not to tell my sons about my illness until it was necessary; it was too much for them to cope with on top of my separation from their dad.
My way of dealing with this was a resolution to get on with life as normally as possible – although I would ring my mother two to three times each day for months, begging her to tell me I was going to be OK. I wondered if I would live to see another birthday.
The only treatment option at the time was a drug called Riluzole, which has a modest effect in slowing the disease, giving patients a few extra months of life. We moved from Sheffield to Doncaster, to be nearer my mother.
I decided to make the most of whatever time I had left, taking the boys on the holiday of a lifetime to Disney World, so they could make memories. I also began writing a children’s book with my mother as a legacy to leave them. Writing it kept my spirits up and gave me a sense of purpose. It allowed me to lose my head in a fantasy world where anything was possible.
Just over a year after my diagnosis, I met my partner, now my fiancé, Lee, while I was visiting an old friend. We got on like a house on fire. At the end of the evening, my friend told Lee about my MND.
Between our first meeting and our first date, he went online and researched the illness. Wonderfully, it didn’t put him off me, and our relationship blossomed. We got engaged four years later. Lee told me he wanted to spend the rest of his life with me, no matter how bad things might get.
Although I couldn’t plan for the future, and knew I might suddenly begin to deteriorate at any time, I permitted myself to live month by month instead of day by day. If I was going to go down, I would go down fighting. This illness wasn’t going to take away my smile or my ability to laugh.
But as the months passed, it gradually dawned on me that I was still walking, still able to dress and wash myself – contrary to what I was told to expect. I put this down to strong family support and remaining positive, which some believe does make a difference in survival with MND.
I did eventually tell my boys about my diagnosis while they were still young, but I don’t think it sank in right away. My disease progressed so slowly that they were able to absorb it gradually, as they overheard conversations or saw me struggling with opening jars or losing my balance. Now, if I fall, my adult sons will pick me up together, one holding me under each arm.
Over the years, they have seen me laugh a lot but also cry buckets – MND can make it hard to regulate your emotions – and they have grown into caring, sympathetic, patient young men. But I don’t want them to have the responsibility to care for me forever – they need to enjoy their own independent lives.
Though it’s been slower than expected, my MND has progressed a little over the years. My hands have become more clenched, with my index fingers curling into hooks, making it hard to put a cup down. I sometimes find it tricky to lift a top over my head and have to ask for help.
My balance isn’t great, resulting in a few bad falls, although, thankfully, no broken bones. I now have grab-rails in my house to prevent that. I am weaker and my speech is a little slower now, and sometimes slurred, particularly when I’m tired. I do get frustrated when people ask me to repeat things. However, I can still walk and I can still drive.
Living so long – when most people with MND are not so lucky – has left me with survivor’s guilt. Why am I so lucky? Why am I not in a wheelchair, when everyone else I’ve met with MND uses one?
Nobody knows for sure. Occasionally, people have even accused me of lying about my condition, or told me I must have been misdiagnosed. But I’ve been tested and retested, always with the same result.
For me, the hardest thing is to have made and lost so many friends with MND, to have become attached, and then to watch each and every one of them deteriorate and die. I’ve never met anyone else like me, and that can be lonely.
My neurologist says I’m a medical mystery and he wishes he saw more patients like me. He believes my survival may have something to do with my being diagnosed at a young age, like Stephen Hawking was. I don’t know why I’ve been allowed to watch my children grow up, when others don’t get that chance. But I am so very grateful for every day.
- As told to Hilary Freeman
- Spellbound Chronicles: Blood Line (Matador) by Suzanne Maguire and Eve Maguire is available from Amazon and Troubador. The profits go to MND Research.
‘Mum had lived and died with this secret,’ says writer Mary Garden.