‘It’s like living every day on the flip of a coin’
PUBLISHED: 11:10 24 April 2017
We all live with uncertainty but it’s how we chose to handle what life throws at us that makes a difference. Paula Meir knows that better than most. She told Sheena Grant more...
Most people live their lives never knowing what the future may hold. Paula Meir, however, lived most of hers thinking she did.
And that was the scary part.
Paula’s mother died of complications caused by Huntington’s disease, an incurable, fatal inherited condition that damages nerve cells in the brain and progressively affects movement, thinking processes and behaviour.
Paula, the youngest of four children, saw her mother battle alcoholism, attempt suicide, sectioned and cruelly sent to an institution as the disease took hold.
“Looking back, she was showing signs of the illness soon after I was born,” says Paula. “In the early 70s no-one talked about Huntington’s disease, but on average, people die 15 years after first exhibiting symptoms. And being hereditary there is a 50/50 chance I have the faulty gene that causes it.
“It’s like living every day on the flip of a coin, believing you’re normal and then remembering you’re not. It influenced every major decision I made - especially in my 20s and 30s. In many ways, it was the canvas on which I painted the rest of my life. Only for me, that life was likely to be over by the time I was 40.”
Having suffered a traumatic childhood because of Huntington’s Paula made a decision. She wasn’t going to let it ruin whatever life she had left.
“I didn’t want it to take any more years,” she says. “I had no real relationship with my mother because of it. It made me determined it wasn’t going to steal another 20 years. I refused to let the uncertainty define who I was or rob me of experiences.”
Keen to defy the cruel disease, Paula married young and had children - if you have the faulty gene Huntington’s tends to show itself around the same age it affected your parent. In Paula’s case, that would be late 30s or early 40s. Having a family early meant her children would be grown up by the time the disease, if she had it, manifested itself.
“The possibility of passing the condition on to my children haunted me, but not having a family and then discovering I didn’t have it also haunted me. It was an impossible position,” she says. “I hoped science would have found a cure by then if the worst should happen, something that hasn’t yet come to pass, although a lot of progress has been made.”
Paula has chosen not to have the test that now exists for the Huntington’s gene. One of her sisters has and is free of it. Another brother has died of the disease.
“Ironically, although living with not knowing has been incredibly challenging it was preferable to a definitive answer,” she says. “Instead I chose life, expecting the best but making provisions for the worst.”
Sadly, her marriage didn’t last and she raised two boys as a single mum - all while breaking the glass ceiling to become a global HR executive, spurred on by a drive to make enough money to manage should she become ill.
Along the way, she immersed herself in psychology and personal development in order to come to terms with her situation and is now a master practitioner of Neuro Linguistic Programming and executive coach. After more than 20 years of sorting out people’s problems, she firmly believes that even the remotely unsolvable can be solved, if we are brave enough to make the right decisions for us.
Although her early marriage didn’t last, Paula has since remarried the “love of my life” and is now living in Norwich.
“Not everyone has to deal with the possibility of an inherited condition like Huntington’s but we all have hurdles to jump,” she says. “Too many of us allow those challenges to define who we are and what we are capable of, or deserve.”
And that’s why, since taking a step back from her own frenetic work schedule and moving to Norfolk, Paula has written a book. Your Life Your Way is intended as a practical guide to help people manage the problems life throws at all of us, providing a witty, pragmatic, and entertaining read on how to overcome obstacles and live the life you always desired – regardless of the cards you have been dealt.
Ironically though, Paula didn’t, at first, even plan to mention Huntington’s when writing it.
“I wasn’t trying to hide it (although even some of my closest friends didn’t know about it),” she says. “I just didn’t think it was relevant. But when I started writing it became clear I needed to provide some sort of context. I couldn’t have done my job coaching people and sorting out their problems for 20 years if I hadn’t been though what I’ve been through. It doesn’t matter what situation we find ourselves in. What matters are the choices and decisions we make. There are always tough times but knowing how to manage those times can make a huge difference.”
“I wanted the book to be practical rather than academic,” she says. “It’s about the power of choice. The book is almost like a toolkit or a handbook. I would like people to keep it on the shelf and dip into it when they encounter something that needs a solution.”
And although her own future is still uncertain, with every passing year the burden she has always lived with lifts, just a fraction.
“My mother was in early 40s when she started showing signs of Huntingtons,” she says. “I’m 46 now and every year that passes my chances improve. There’s now a 35/37% chance of me having it.
“Each day is a new day. That much is the same for every one of us.”
■ Your Life Your Way is available online and in mainstream and Independent bookshops
Some tips from Paula’s book
■ Live in the now - we can’t change the past so constantly looping into re-runs of old conversations or experiences is actually a form of self-harm. It is much easier to access our very best in the present.
■ If your situation turns you into someone you don’t recognise or don’t want to be, pay attention to that. It won’t change until you change it. Use that realisation to fuel your first step toward change.
■ Lose our emotional baggage. Chose a different story, find your own silver lining, however slim or faint, and move on. We are not shaped by our experiences. We are shaped by what we chose to make those experiences mean.
More on Huntington’s disease.
Men and women with a family history can inherit the condition. Symptoms usually start to appear during adulthood.
Juvenile (children’s) Huntington’s disease develops before the age of 20. Only 5-10% of people with Huntington’s disease develop it at a very young age.
Research carried out in 2012 found 12 people per 100,000 are affected by the condition, higher than previously thought.
It’s thought that the number of people who have the Huntington’s gene and are not yet affected is about twice that of those who have symptoms.
Huntington’s Disease Awareness Week is May 11 to 17.