How I took control of my Huntington’s story: by author and life coach Paula Meir
Today we hear from Paula Meir, a trained life coach, author and someone who is living at risk of developing Huntington’s disease. Paula, who has been an advocate for the Huntington's community for many years, will be sharing how the disease both influenced and overshadowed many of her life decisions and how she took back control on realising it had all become too much.
“Everyone has a story. It doesn’t matter who you are, where you are from, or what you do, we are driven by powerful stories. Here is mine.
Back in 2013, I was wracked with stress. Juggling duties as a single mum with two boys, alongside a globe-trotting corporate career, was taking its toll. My physical and mental health was being slammed. Following months of illness (polyps, acute sarcoidosis, even a broken ankle) I could sense breaking point just around the corner. Then one day, in a meeting room in Covent Garden, an epiphany screamed out. Following another senseless, and deeply political work meeting I realised I was done.
I handed in my notice.
Thing was, I didn’t have another job to go to. Hoping my 20 plus years in the people industry would serve me well, I did a “Dick Whittington” in reverse. Packed up my stuff and headed away from golden pavements.
I set myself up in business.
Fast-forward seven years. I’ve authored my first best-selling book and now run a successful global life-coaching business. And it’s fair to say, I’m happy.
Thing is, this was never meant to be my story. And, in my mind, I had no right to be happy.
And that’s because Huntington’s Disease was my story.
I grew up in a flat above a lawn-mower shop, in a local village where everyone knew each other and everyone’s business. Back in the seventies and eighties little was known about this cruel disease. And our local doctor’s surgery wasn’t interested in understanding or diagnosing it either. Mum was written off as a hopeless alcoholic and was taken from our house kicking and screaming by men in white coats (otherwise known as being sectioned) into a psychiatric hospital miles away, an institution previously labelled a lunatic asylum. My teen years were characterised by a series of traumatic incidents which many in the HD community will recognise and may have experienced. The impact was deep, lasting, and I learnt very quickly how to live with being over vigilant, operate in survivor mode and keep it a secret for most of my life. My schoolwork suffered (I left with very few qualifications), and the toll on my mental health significant.
Being at risk I married early. Had children to ensure that they would be old enough to cope when I became ill (not IF I became ill). And made a decision to live life as fast as possible. Every major decision was driven by childhood experiences. Every choice propelled my life’s story. And that story was Huntington’s disease.
Every year I showed up to see Dr Rosser for my neurological check-in at the University College Hospital in London. A gentle jog through familiar physical and mental work-outs, and then shuffle off for another 12 months awaiting the disease to present.
And then I made a decision at the age of 43. I dumped my job and (in the nicest possible way) I dumped Dr Rosser.
What happened?
I had an epiphany. In that meeting room in Covent Garden, I realised my entire life had been driven by my cruel and all-encompassing Huntington’s story.
Far too many people live a life dictated by their negative experiences. Determined to remove myself from a terrible and fatalistic narrative, I set about re-writing my story. I discovered how to become more confident, powered up my self-esteem, and performed a piece of neurological magic.
As a 43-year-old stressed, single parent, struggling to hold body and mind together, I realised something. My experience of life had determined the choices I made, this created my life-limiting story.
I switched this round.
I took control of my story. This led me to make different choices. My choices now define the experiences I have.
My life today is a far cry from the pre-ordained path of my childhood. People like me don’t deserve success. There was no silver spoon, no family cash, no right to happiness. From that point, I decided that I would rather live a life not knowing my fate. But truly LIVING, rather than constantly be living in the shadow of Huntington’s disease’s potential.
Taking control of my story was empowering in the extreme.
I discovered the power of education and over the past few years have read more books than I would ever have thought possible. I racked up a bunch of qualifications and accreditations. The scared young girl who stared down the barrels of her mother’s Huntington’s now runs a successful business and helps people across the world make the most of their lives.
Depending on which study you read, 90-95% of all our actions are driven by our sub-conscious. Feeding positivity into the sub-conscious doesn’t require anything other than conscious thought. And that’s why I say “if I can do this anyone can”. I’m not a happy-clappy, do-gooder ‘airy-fairy’ person, but I do believe happiness is only a thought away.
I’m acutely aware life coaches have a bit of a “touchy-feely” image. That’s not me. Pragmatic and practical are my watchwords. I’ve got Huntington’s to thank for that!
People living in the Huntington’s community face tremendous daily challenges. I have an acute personal understanding of how this horrible disease impacts individuals and families. But I am passionate about the power of self-determination and taking control of our own stories, whatever they may be. Whether you have the disease or whether you haven’t, or whether you don’t want to find out, the way you live your life is up to you, and only you.
So, my philosophy is relatively simple. We are all products of our childhood. But by taking control of our story, by making better choices, we can have a different experience of life, whatever we decide that to be.”
Thank you to Paula for that fantastic insight. Huntington’s can very quickly take control of your life, Paula is a brilliant inspiration for taking life as it comes, making your own decisions and putting your happiness first. You can buy Paula’s book, ‘Your life your way - a practical guide to getting your s**t together’, via our online shop. All proceeds go to the Huntington’s Disease Association.
If you are affected by Huntington’s disease and are in need of support or advice, please contact us on 0151 331 5444 or email [email protected]. Our dedicated phone line is open 9 am – 5 pm, Monday – Friday with specialist advisers waiting at the other end to offer you support.
Today we hear from Paula Meir, a trained life coach, author and someone who is living at risk of developing Huntington’s disease. Paula, who has been an advocate for the Huntington's community for many years, will be sharing how the disease both influenced and overshadowed many of her life decisions and how she took back control on realising it had all become too much.
“Everyone has a story. It doesn’t matter who you are, where you are from, or what you do, we are driven by powerful stories. Here is mine.
Back in 2013, I was wracked with stress. Juggling duties as a single mum with two boys, alongside a globe-trotting corporate career, was taking its toll. My physical and mental health was being slammed. Following months of illness (polyps, acute sarcoidosis, even a broken ankle) I could sense breaking point just around the corner. Then one day, in a meeting room in Covent Garden, an epiphany screamed out. Following another senseless, and deeply political work meeting I realised I was done.
I handed in my notice.
Thing was, I didn’t have another job to go to. Hoping my 20 plus years in the people industry would serve me well, I did a “Dick Whittington” in reverse. Packed up my stuff and headed away from golden pavements.
I set myself up in business.
Fast-forward seven years. I’ve authored my first best-selling book and now run a successful global life-coaching business. And it’s fair to say, I’m happy.
Thing is, this was never meant to be my story. And, in my mind, I had no right to be happy.
And that’s because Huntington’s Disease was my story.
I grew up in a flat above a lawn-mower shop, in a local village where everyone knew each other and everyone’s business. Back in the seventies and eighties little was known about this cruel disease. And our local doctor’s surgery wasn’t interested in understanding or diagnosing it either. Mum was written off as a hopeless alcoholic and was taken from our house kicking and screaming by men in white coats (otherwise known as being sectioned) into a psychiatric hospital miles away, an institution previously labelled a lunatic asylum. My teen years were characterised by a series of traumatic incidents which many in the HD community will recognise and may have experienced. The impact was deep, lasting, and I learnt very quickly how to live with being over vigilant, operate in survivor mode and keep it a secret for most of my life. My schoolwork suffered (I left with very few qualifications), and the toll on my mental health significant.
Being at risk I married early. Had children to ensure that they would be old enough to cope when I became ill (not IF I became ill). And made a decision to live life as fast as possible. Every major decision was driven by childhood experiences. Every choice propelled my life’s story. And that story was Huntington’s disease.
Every year I showed up to see Dr Rosser for my neurological check-in at the University College Hospital in London. A gentle jog through familiar physical and mental work-outs, and then shuffle off for another 12 months awaiting the disease to present.
And then I made a decision at the age of 43. I dumped my job and (in the nicest possible way) I dumped Dr Rosser.
What happened?
I had an epiphany. In that meeting room in Covent Garden, I realised my entire life had been driven by my cruel and all-encompassing Huntington’s story.
Far too many people live a life dictated by their negative experiences. Determined to remove myself from a terrible and fatalistic narrative, I set about re-writing my story. I discovered how to become more confident, powered up my self-esteem, and performed a piece of neurological magic.
As a 43-year-old stressed, single parent, struggling to hold body and mind together, I realised something. My experience of life had determined the choices I made, this created my life-limiting story.
I switched this round.
I took control of my story. This led me to make different choices. My choices now define the experiences I have.
My life today is a far cry from the pre-ordained path of my childhood. People like me don’t deserve success. There was no silver spoon, no family cash, no right to happiness. From that point, I decided that I would rather live a life not knowing my fate. But truly LIVING, rather than constantly be living in the shadow of Huntington’s disease’s potential.
Taking control of my story was empowering in the extreme.
I discovered the power of education and over the past few years have read more books than I would ever have thought possible. I racked up a bunch of qualifications and accreditations. The scared young girl who stared down the barrels of her mother’s Huntington’s now runs a successful business and helps people across the world make the most of their lives.
Depending on which study you read, 90-95% of all our actions are driven by our sub-conscious. Feeding positivity into the sub-conscious doesn’t require anything other than conscious thought. And that’s why I say “if I can do this anyone can”. I’m not a happy-clappy, do-gooder ‘airy-fairy’ person, but I do believe happiness is only a thought away.
I’m acutely aware life coaches have a bit of a “touchy-feely” image. That’s not me. Pragmatic and practical are my watchwords. I’ve got Huntington’s to thank for that!
People living in the Huntington’s community face tremendous daily challenges. I have an acute personal understanding of how this horrible disease impacts individuals and families. But I am passionate about the power of self-determination and taking control of our own stories, whatever they may be. Whether you have the disease or whether you haven’t, or whether you don’t want to find out, the way you live your life is up to you, and only you.
So, my philosophy is relatively simple. We are all products of our childhood. But by taking control of our story, by making better choices, we can have a different experience of life, whatever we decide that to be.”
Thank you to Paula for that fantastic insight. Huntington’s can very quickly take control of your life, Paula is a brilliant inspiration for taking life as it comes, making your own decisions and putting your happiness first. You can buy Paula’s book, ‘Your life your way - a practical guide to getting your s**t together’, via our online shop. All proceeds go to the Huntington’s Disease Association.
If you are affected by Huntington’s disease and are in need of support or advice, please contact us on 0151 331 5444 or email [email protected]. Our dedicated phone line is open 9 am – 5 pm, Monday – Friday with specialist advisers waiting at the other end to offer you support.