Monday 29th June, Burleigh Heads QLD. – 24-year-old Quadriplegic Stephanie Johnson claims she is still coming to terms with a recent excursion to Burleigh Heads park late last week.
Ms Johnson – Wheelchair-bound with Spina Bifida since the age of five and whose every living function requires special assistance – was shuttled with two other severely disabled companions from their austere institution to spend an hour and a half staring out to sea from Burleigh Headland.
“While it was a treat to get some fresh air, I couldn't help but be concerned and upset at the distress many of the surfers seemed to be in,” she told your reporter, who visited her at the care facility..
Ms Johnson, who has no movement in her limbs and who is not likely to live past 30, tried to be philosophical as she recounted the trauma faced by the brave surfers who battled the hardships of not getting every wave they wanted.
“There was alot of swearing and anger out there, it was worse than in any hospital ward I've ever been in.
“If there was some way I could have reached out and helped those poor fellows, but I couldn't – hey, I can't even wipe my own arse!” she chuckled good-naturedly.
Sensing this reporter's discomfort at her arse-wiping quip, Ms Johnson quickly qualified her comments, saying “look, I know that's an insensitive thing to say, given the seriousness of the issue at hand – from what I saw, these surfers desperately need more waves to maintain a dignified quality of life.
“It makes you wonder about all those millions of dollars raised for research into conditions such as Cystic Fibrosis, Multiple Sclerosis, Schizophrenia, Cancer, etcetera, when clearly so much suffering is felt so keenly out in the water by these poor souls.
“I think the authorities should at least try to do something – I don't know, perhaps divert some funds away from medical research and towards trialling an artificial reef program – or at least counselling for those hardest hit by the condition of not getting every wave they want.
“The key here is not to give up hope – to hang on to the thought that maybe in this lifetime, by some miracle, this condition can be met head on.
“The funny thing is, I'd happily swap places with a surfer – just for an hour – to give them some blessed relief.
“This may sound bizarre, but I think I might actually enjoy the experience myself, I don't believe I'd even feel the need to catch a wave.
“I suspect I'd be quite content to paddle around, with my arms and legs doing what my brain told them to do, feeling the sun and the saltwater on my skin – even doing that duckdive thing through the waves – might make a nice change from the wheelchair and the bed.”
Tired from the effort of talking, Ms Johnson indicated she was ready to return to her favourite spot – a large window looking inland to the Gold Coast's domestic sprawl – where she would spend the afternoon alone with her thoughts until a rostered carer came to feed, change and put her to bed.
As she was wheeled away, Ms Johnson implored your reporter to “Tell all the surfers out there. Stay strong! It might be hard to imagine, but there's always someone who's had less waves than you!”
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Brilliant. Your best yet! Is poignant the right term to use?
ReplyDeleteGreat stuff, Gra. I did a heap of these Onion-style mock stories for Surf Europe back in the day, but all the Oz editors were too scaredy to run 'em (or possibly the stories were just crap). keep up the vital work and stay ginger.
ReplyDelete- DC Green
i shed a tear GM ... but seriously, so relevant and a good jab in the ribs. Hope all's well.
ReplyDeleteTimmmmaaaaeeeeeeee
dude, this chick you interviewed, she's right, man. surfers need to mellow the fuck out, man, and be thankful for everything. she makes a great point: if you can wipe your own ass, evreything else is gravy.
ReplyDeletedamn, she talks just like a surf journo. weird. maybe you could give her some freelance??
ReplyDeletethis was a realy touching article and she is more right than she knows i have had back problems my whole lif at age 15 i was parylized from my chest down i spent 3 years only able to move my hands and neck i couldnt feel anything from my chest down then out of no where i got feeling and movement back and top it all off i have had over 18 different operations most on my back all trying to prevent it from giving way it eventualy did though at 15 hense the reason why i was perylized for 3 years but even though i got movement back my spinal cord is so scewed that if i try comming off life support ill die we tried it once i was doing good for two weeks came close to going home but then had relapsed passed out died woke up a few weeks later unable to talk anymore and my legs completly dead again now i can't even get out of bed to get in a wheel chair because dang vents too big to take anywhere and batteries dont last long enough plus there is the pain in the ass part where i cant coff up flem i have to suck it out with a motor and a straw suffers have it great they realy need to learn self control to go with their working bodys and incase anyone ask i been diagnosed with spina bifida and the rest were birth affects so pretty much there were no medical terms for the manny other problems i had oh except for one arnil kiarie im not sure how to spell it but that was fixed long ago i never had a real life i grew up in hospitals my entire life had friends but never could keep any since i was more in the hospital than home im permentaly living in a nursing home just barely capable of feeding myself cant breathe on my own for more than 10 hours at a time and stuck in bed with no friends and barely any visitors but like MS.Johnson says should never give up hope which has been pretty much the only thing that keeps me going and i have a quick question if anyone knows of any ligit dating services for severly disabled people i'd highly apreciate it.
ReplyDeleteMask of darkness thank you 4 sharing your life in a few words i couldnt even begin to imagine what it would be like in a wheel chair or bedbound, im married and have 2 girls. i look up to people like you!
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