Swapping her wheelchair for a wetsuit, Gendi Roberts is determined not to let her life-threatening illness get in the way of conquering the State Open Swim Series as an elite swimmer.
Although the 18-year-old describes swimming as ‘life-changing’, she pays a heavy price for her passion. Each stroke causes her immense pain due to a rare degenerative condition called Ehlers-Danlos Syndrome (EDS), which has left Gendi with digestion problems, chronic fatigue, partial blindness and frequent bone dislocations.
‘I can pick up a pen and my whole wrist will dislocate,’ she tells New Idea. ‘I can be sitting on the couch and all of a sudden my knee will fall out of position.’
Gendi, whose 15-year-old brother, Oliver, also suffers from the genetic condition, is unable to remember a life without agony.
‘I was in constant pain when I was little,’ she recalls. ‘You know when you swing a kid around by their arms? Both my elbows would dislocate.’
Diagnosed with EDS at eight years old, Gendi admits it’s been an emotional struggle at times. ‘There’s been a few tears. I look completely normal but on the inside it’s not happening for me.’
As she doesn’t respond well to pain medication, she has learned other ways of carefully managing her condition.
‘I can’t walk very far so I have to be aware of how I’m feeling and hop in my wheelchair to save energy if need be.’
She lives with the fear of life-threatening heart valve problems and vein and intestinal ruptures, and also has to cope with harsh bullying.
‘There’s always someone who will pass a snide comment,’ she says – and it’s adults who have given her the toughest time.
‘I’ve had horrendous doctors who have told me that I’m a liar and that it’s all in my head. I’ve had people underestimate me simply because I have EDS.’
But Gendi refuses to let the condition hold her back. She is about to embark on a health science qualification at Otago University, and has exciting plans for the future: ‘I’ve always wanted to adopt a child and I’d love to travel.’
For now, though, she is focused on the water. The pool started as rehabilitation for her, but has become her salvation.
‘Swimming is the one thing that’s kept me going. It makes me feel pretty normal,’ she says.
‘It makes me forget about a lot of the problems that happen outside of the water, and it’s kept me much healthier. I’m defying odds at the moment.’
The teenager trains seven to eight times a week for at least three-and-a-half hours, and has competed at a national level.
She is adamant that, despite the pain swimming causes her, the confidence boost makes it worthwhile.
‘I’m pretty determined. I have a competitive side so I’ve always enjoyed taking on other people and showing them I can do it. People saying I can’t is the best motivation to go and do well.’
Sadly, because EDS is degenerative, Gendi knows swimming will not always be possible for her.
‘I’d quite like to get to another nationals and place again, then I’d be pretty happy to say I’ve accomplished what I’ve needed to,’ she says.
For now, though, this water baby is enjoying her sport while she still can and proving nothing can hold her back.
She has already completed in two out of the four State New Zealand Ocean Swims, and will finish the series with two gruelling 2.8km events: La Grande Swim in Akaroa on February 15 and King of the Bays in Auckland on April 18.
‘My main satisfaction is completing a race my body shouldn’t be able to do.’
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