‘My aneurysm could burst at any time... I could be walking down the street or in bed and the next thing I could be dead’
Performer Donna Stewart has been plagued with a lifetime of health problems — and has only recently discovered the syndrome that has caused them all. She talks to Linda Stewart about life, health and how she is fighting back with her new Dolly Parton tribute show
Musical performer Donna Stewart has spent her whole life plagued with health problems, culminating in a brain aneurysm at the age of 47.
But after discovering she has a rare inherited condition that is the root cause of all her illnesses, she is determined not to let it beat her - and is set to go on the road in the new year with a new Dolly Parton tribute show tailored to her health needs.
Donna has been a musical performer all her life. She's been delivering her Dolly Parton act since 2011 - hailed as one of the best tribute acts in the country - and has sold out some of the biggest venues north and south of the border.
Born in east Belfast off the Cregagh Road, she has been on the stage since primary school. "The first thing I ever did was play Mary in Harding Memorial Primary School when I was four or five," she says.
"I've always done stupid wee concerts, shows and done singing groups throughout school. Then I auditioned at the Lyric Theatre to play Annie in about 1983/4 and did Peter Pan a year later in the Lyric."
Donna admits she lost interest for a while in her teenage years "because boys were on the go" - but returned to her first love at around 19 when she performed in West Side Story with Opera NI, going on to play Ado Annie in Oklahoma with the Ulster Theatre Company, a show that ended up going on tour.
She says she never even considered doing anything other than become a performer when she was at school in Knockbreda High.
"I always wanted to be a singer - I always wanted to be an actress. I was an absolute terror at school. The history teacher knew to send me down to the drama room - there was no point! I was just music-mad all my life and there was nothing else for it.
"I'm glad because I met various people because of music, people that I am still friends with today - for example, Emmanuel McStravick. We set up a musical theatre company 14 or 15 years ago and he's still doing shows now. Through Emmanuel I met my fiance, Niall Toman, who I'm marrying in May."
It's not everyone who can say that they met the love of their life because of a giant, voracious plant.
Donna explains: "When Emmanuel and I were doing Little Shop of Horrors [in 2002], I was playing Audrey and Emmanuel was Seymour. But we needed a voice for the plant and Emmanuel brought Niall down from Downpatrick to audition - and that's how we first met."
Over the years, Donna has produced and performed in an huge number of productions - from Godspell and High School Musical to Belfast City of Rhythm, not to mention the tribute shows.
"I had a tribute to Glee which followed everything they did. I've written tributes to Justin Bieber, Amy Winehouse, Hannah Montana," she says.
But always in the background were the debilitating health problems which often made it difficult for Donna to lead an everyday life.
She was born with congenital hip dysplasia which was revealed when the hip click test was carried out and she had to spend six months in plaster of Paris to try to get the ball and socket of her hip joint back in line.
Donna also has hyper-mobility. "As I grew up I knew I was really double-jointed - I can still put my legs right over my head. I also sit oddly with my shins back behind me."
Over the years, there was one health problem after another, including cysts, a leak in a heart valve, abnormal cells in her womb and arthritis. An MRI scan of her back revealed that she had osteoarthritis and degenerative disc disease and her doctor advised her to stop performing.
Donna didn't want to quit and kept going, taking strong painkillers to get through her shows - but this wasn't ideal either as the medication affected her memory and she began forgetting the words to songs she had been singing for years.
Eventually Donna decided she had to stop, but found it a shock to the system after years of performing, writing, directing and producing. She became severely depressed, putting on five stone and becoming isolated.
Just when things seemed as if they couldn't get any worse, a brain scan revealed that Donna also had a brain aneurysm. Her neurologists decided not to operate to remove the aneurysm unless it became worse, because the operation itself can cause a stroke, severe disability or death.
However, she faces the same risks if the aneurysm bursts which could happen at any time and without warning, and Donna fears she could have to learn to read, write, speak and walk again. For now, she has a brain scan every year and may have to undergo the operation if the aneurysm changes at all.
What she didn't realise was that all her symptoms were connected.
"I just thought I was unlucky. I kept wondering can I be imagining all this stuff, because there cannot be another thing wrong with me!" she says.
At one point, she thought she had ME, but her doctor now believes that Donna has Ehler-Danlos syndrome (EDS), one of a group of rare inherited conditions that affect the connective tissues that provide support in the skin, tendons, ligaments, blood vessels, internal organs and bones. "Everything happens a bit early [with this syndrome] - for example, I've gone through the menopause and I'm only 47 - and they say it is life-shortening," she says.
It was a lot to take in and Donna found herself living day-to-day, trying to come to terms with her EDS and all the problems it caused.
But strangely enough, it was Dolly who shook her out of her depression. Donna was sitting in the car one day when a Dolly Parton song came on called Better Get To Livin'.
Donna describes Dolly as motivational and recites the lyrics that gave her such a jolt: 'I said you'd better get to livin', givin'; Be willing and forgiven'; Cause all healing has to start with you. You better stop whining, pining; Get your dreams in line; And then just shine, design, refine; Until they come true'."
Just when she had been thinking of giving up, those lyrics made her "have a word with herself".
"My aneurysm could burst at any time. I could be walking down the street or in bed and the next thing I could be dead - it's more common than you would believe. And I realised that I had to grab on to life as much as I can because it's so short anyway," she says.
"And I said to myself I am not going to stop doing this. I am going to find a way to do things within the creative industry. It was a boot up the backside and away you go."
Donna says she sat down with a pen and paper and tried to figure out a way she could deliver a new Dolly Parton show, tailoring it to her physical needs while keeping the quality and attention to detail.
The show has all the pizzazz of a Dolly Parton show, but Donna has recruited some friends to sing while she sits to play the guitar or banjo.
"I've decided to play the guitar so that I can sit down. I play the banjo, and I've three guitars which are all copies of her guitars. I've added a couple of friends so I can go off and sit down and come back onto the stage as if nothing had happened.
"I decided I wasn't going to let anything beat me. I lost all the weight and generally looked after myself a lot more. Over time I felt much better. I will never be in fantastic health, but I will fight for every single step if I have to.
"I had been punishing myself something awful in the shows over the last two or three years - it would be a three-hour show and I would be standing all the way through in high heels and wearing two or three wigs at the same time," she says. "The only thing you can do with EDS is manage it. But I've been managing it all my life, before I even knew I had it."
Donna has two sons from a previous marriage, Scott Holmes (20) and Jack Holmes (19), who are both away at university. It has been a bit of a balancing act to find a way to get the most out of life and family with a life-shortening syndrome while taking good care of herself.
She says: "Now I've learned to pace it. I plan things meticulously so I can get every single stick out of life that I can, but not overdo things. You don't want to lose out in many ways, but you don't want to make yourself worse."
Donna says the new show is carefully choreographed so she can get breaks whilst still paying homage to Dolly in the most authentic way possible.
"I still wear real hair wigs that are styled by Northern Ireland's top hairdressers. I have too many dresses and costumes to count and all are close replicas of Dolly's. I have a ridiculous amount of shoes - all that I know Dolly would approve of, though she might steal them as we are the same size," she says.
"Dolly has a saying 'It takes a lot of money to look this cheap' and I couldn't agree more. She is a hard act to follow - it's not just a matter of putting on a bad synthetic blonde wig and speaking in a dodgy southern American accent.
"Getting it right is all-consuming and mega-expensive, from the very phrasing in her songs to her attitude, all the grindstones and rhinestones that have made up her life and of course all the love and warmth that comes with her - once you have absorbed all that and been meticulous with attention to detail, then you can truly say you can perhaps be close to a worthy tribute to her.
"I definitely give it my best. I hope audiences enjoy my new show as much as I enjoy performing it! I think Dolly would approve."
EDS a result of faults in genes
Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones. There are several types of EDS that may share some symptoms, including:
- joint hypermobility
- stretchy skin
- fragile skin that breaks or bruises easily
The different types of EDS are caused by faults in certain genes that make connective tissue weaker.
EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling. Some of the rare severe types can be life-threatening.
Donna is performing in Dolly's Rockin' Country Club at Crumlin Road Gaol on Saturday January 19 2019. To book, call 028 9074 1500 or online at www.crumlinroadgaol.com/book.