Andrea Hayes (37) on living with chronic back pain - 'Paralysis could be down the road for me'
Broadcaster Andrea Hayes's sunny smile masks a lifetime of living with chronic pain. She and her husband David Torpey tell how they cope while raising their daughter and fulfilling their professional ambitions
Published 22/02/2016 | 02:30
To see Andrea Hayes in the flesh, all blonde and radiant and effervescent, you'd never think there was anything wrong with her. You'd scarcely imagine that beneath the bubbly, warm exterior lies someone who lives with constant pain, as she utterly refuses to let it define her. Andrea, 37, has just written a book on living a pain-free life, and she is unfortunately well placed to tackle the subject.
While searching for a cure for the persistent and debilitating lower back problems that had plagued her since she was 15, Andrea tried healing, acupuncture, massage, and personal trainers who specialised in back problems - all to no avail. The experts suggested various ailments to her as the root cause of her problems, such as polycystic ovary syndrome, candida, endometriosis and irritable bowel syndrome.
In her desperate quest to cure the pain, Andrea was examined in the UK, where she was diagnosed with spinal stenosis. Scans revealed small disc osteophytes, or bone spurs, on her coccyx (tailbone) that were putting pressure on her spinal cord and nerves. While she had many different treatments for the condition, including medication, nerve blocks and rhizotomies (the destruction of nerves in the facet joints by burning them with radio frequency currents), none properly fixed the problem.
As a last resort, Andrea planned to have her coccyx removed, but was devastated when she attended a pain management clinic at St. Vincent's Hospital in January 2010 and discovered the pain was never going away. She couldn't quite believe it when she was informed that, for some people, and sadly this applied to her, a 'pain gate' is left open in the brain after the original reason for the pain has passed. So in her case, pain wasn't a symptom of what was wrong, it was a disease in its own right. "You have chronic neuropathic pain," explained the doctor to the disbelieving TV and radio presenter. "You will always have this pain."
As if that wasn't enough to contend with, Andrea was diagnosed last year with the rare brain condition, Chiari malformation type 1. It occurs when the cavity that holds the brain is too small, and the lower parts of it are pushed downwards towards the spinal cord. This can cause pressure and block the flow of cerebrospinal fluid, the clear fluid that surrounds and protects the brain and spine, carries nutrients to the brain and removes waste.
"The symptoms are neck pain and losing the power in your arms," Andrea explains. "Paralysis could be down the road. As a child, I suffered hearing problems that required multiple operations on both ears, and this is related to the condition. The options are decompression brain surgery or to maybe to get a spinal fusion in my neck, but I'm trying to stay away from surgery and am seeking alternatives like harnessing the power of the mind."
Despite living under these trying and dispiriting circumstances, Andrea has a drive and ambition that pays testament to her strength and positivity. "I have so much pride in her, as she knows that she has a life to live and has an amazing ability to fight whatever arises," says her husband David Torpey. "Andrea takes the reins and just goes for it."
As the youngest of four, Andrea was a quiet child growing up in Beaumont, partly due to her hearing problems, which left her a bit isolated. She had a vivid imagination and chatted to a lot of imaginary friends, and now, still deeply religious, recalls speaking to Mary and various saints and angels.
She fully expected that she would emigrate like her three older siblings, but when she was almost 20, and enrolled in a film and TV course at DIT, Mountjoy Square, the former head girl of St. Mary's Holy Faith in Killester met David in Cafe en Seine. She lied about her age initially, saying that she was actually 25, because he was almost ten years older. There was a huge chemistry between them and they chatted nonstop all night, but Andrea clearly didn't harbour romantic plans as they got food afterwards and she ordered garlic chips. "I told him it didn't matter, because I wasn't going to kiss him or anything else," she laughs. "David lived in town, so I asked if I could stay the night at his place. It was a different time then and more innocent, but I never really left."
Although Andrea told her parents, Marie and Brian, that David was one of her friends for a long time, she ultimately admitted her real age to the man himself. He didn't mind as he knew pretty instantly that she was the girl for him. "Andrea is stunning, and I find everything about her attractive," he says. "I think she's gorgeous, but beauty will fade, and it's how the person is an individual that lasts. On one of our first trips to Blackpool, I noticed that she has a magic way about her, and when she engages with people, even strangers, she really cares and it's palpable."
Andrea's career began at Windmill Lane Studios, where she did everything from post-production to managing the sound studio. She also worked in Lillie's Bordello as a part-time hostess. Her dad Brian became ill around that time and died in 2005 of kidney cancer aged 58, but David asked his permission to marry Andrea before he passed.
"I think Andrea's dad saw that I was totally smitten when we lived with them while we were building our own house," says David. "He was kind of nervous about his youngest child, as he always believed that if someone tried to hold her back, it would be a disaster. He knew he was dying, so he wanted to be sure about me. Andrea is outgoing and quite feisty and I'm more reserved, so people wouldn't put us together. As he got to know me, her dad saw that I was able to set her alight rather than hold her back."
The long-haired David, 46, was born in London and lived there until he was eight with his Irish parents, Pat and Mary, and older brother. The family came back and settled in Dundrum, and as a youngster, David was always artistic. "Dublin in the 1980s wasn't the greatest place to be for a cockney little lad from London, but I had a really good group of friends," he says. "After a year studying fine art where I did painting and sculpting, I did a degree in graphic design at DIT, and saw myself moving to New York or London."
David's emigration plans were derailed when he met his business partner, Darrell Kavanagh, with whom he founded Image Now in 1992. The design, film and creative consultancy has produced some of the most high-profile corporate identities, and has worked with clients including DAA, 2fm, TV3, Eir, Bank of Ireland and Dublin Bus (see ImageNow.ie)
As well as the more traditional branding and design, they have set up another division called Brighter than the Sun, a visceral imaging company specialising in the areas of digital scenery and projection, 3D animation, motion graphics, video and video mapping. The idea evolved because David designed the original Riverdance identity for John McColgan and Moya Doherty, and also worked extensively on their new show, Heartbeat of Home. "It's kind of fun and organic at the moment, and I'm also working with another group in New York who run Broadway shows and tour them around Asia," he says. "Luckily, I have the support of my lovely wife who has pushed me on to do this. It's easy enough to sit back when you're successful, but that is another thing Andrea and I share - the drive to better ourselves and to constantly improve."
The modest David admits to being terrified when he spoke at TEDx last year in New York, but Andrea convinced him to do it. They encourage each other in the right ways, as he reins her in at times and she pushes him out. "We are quite yin and yang, as I'm introverted and like my space, whereas Andrea is quite the opposite," he says. "We are like one person at home though, and it's weird how alike we are."
David proposed to Andrea in Dubai in 2005 and they were married in April 2007 in Venice. The fact that he loves animals was hugely attractive to her. "I love David's long hair, his face, his smile and eyes," she says. "I also liked that he was well able for me and kept challenging me all the time with conversation."
While Andrea was blissfully happy with David, her health problems were getting her down. By mid-2005, she thought her busy, demanding lifestyle was to blame for her pain. so she gave up her jobs at Windmill Lane and Lillie's. At that point, she started doing continuity work for TV3. Her career at the station developed and she became the presenter of Animal A & E. Now freelance, she fills in presenting Midday when Elaine Crowley is off, and presents the annual Coming Home for Christmas show. With a very successful series, that exposed puppy farming in Ireland , under her belt, she is currently working with the station on a show about dogs that explores the reality of the pound situation. She also presents a weekly radio show on Sunshine 106.8
Andrea and David always longed to have a family, but it took careful planning because she had to come off her pain medication to become pregnant. "There was one month where we could do it and I was convinced I would become pregnant then," says Andrea. "I really believe in positive thoughts and told everyone I was getting pregnant, even though they thought, 'Oh poor Andrea', because David and I were together for 14 years at that point. We were very lucky and it happened for us that month, and our daughter Brooke is four now."
Andrea was ill after giving birth as she had a spinal leak and lost cerebrospinal fluid, which meant that David had to do everything initially, including giving Brooke her first bath and feed. Andrea recalls him being amazing, and when her medical issues were sorted, she looked to him to show her what to do. Brooke is currently in Montessori and is full of energy and joy with a very strong spirit. "I always said to Andrea that if we can give her independence and strength then happy days, because everything else after that is easy," says David.
As if she didn't already have enough to deal with, Andrea was diagnosed with POTS (postural orthostatic tachycardia syndrome), which means that when she gets up in the morning after lying down, her blood pressure doesn't regulate properly, which makes her collapse. With characteristic stoicism, she doesn't mind because she can pick herself back up again, but last year, before she had been diagnosed, she collapsed on her way to Brooke's bedroom and was unable to get up. David was away on business, and as she came around, Andrea's beloved 11-year-old labrador/retriever cross, Dash, was licking her face. "Dash was amazing," she smiles. "He kept pushing me and eventually got me down the stairs."
Mindful that most people suffering chronic pain don't have a platform, Andrea's book is full of insights, helpful techniques and tips. One thing that helped her was hypnosis at the Goldin Clinic, because it made her realise the strength of the power of the mind. These days Andrea tries to create a positive mindset, and refers to what is happening to her as 'sensations' rather than 'pain.'
"I'm trying to manage everything better, so I'm looking to myself for the cure rather than the doctors," she says. "Paul Murphy in St. Vincent's hospital is a pain specialist and he's amazing. He wrote the foreword to the book and has been so good to me, because he knows I have a different approach to most people in that I want to be off the tablets."
Andrea and David hope to add to their family, but need to wait until the circumstances are right with her health. "David is amazing, as a lot of people don't know that I'm in hospital a lot, and he has to drive me and look after Brooke while dealing with his work responsibilities," says Andrea. "I don't talk about it to anyone but him, so he was the only one who knew I was in bits when I went to interview Richard and Judy, for example. David had to wait around for me because I was so unsteady. He is so supportive, even though I have such bad mood swings on the tablets, lose my sex drive and just go a bit mental. He has been there all through my twenties when we were looking for answers, and was very central to that journey. He has always been the biggest support to me."
David says it's terrible to see anyone in pain, especially someone you dearly love, and while Andrea doesn't complain, he knows instantly what's going on by her movements or facial expressions. "If she's not in good form, I know she's having a bad day," he explains. "From the day we first met to now, the love I have for Andrea hasn't changed throughout the highs and lows. I am still smitten, and every day she makes me smile in some way."
Pain-free Life; My Journey To Wellness by Andrea Hayes is out now. (Mercier, €14.99)
Tune in to Sunshine Meets…. every Sunday at 7pm on Sunshine 106.8