Robin Tait
Robin Tait (left) is a retired academic, who completed his Ph. D. in Sport Management at the University of Oregon. He has spent his professional life reading, writing, researching or teaching about sport. Robin has written three fiction manuscripts and a number of short stories. Besides sports, he is interested in travelling, and in working on his rain forest block on the Gold Coast. Valerie Runyan (right) has a Masters in Communications and has spent her professional life working in higher education. Asked what has been her biggest achievement, she responds “being Nate’s mom.” Valerie is now enrolled in a Juris Doctor to further her skills to advocate for people with disabilities.
Chapter 1: Departure
Fitting four people, five giant suitcases and a wheelchair into a small four-wheel drive isn’t easy. OK, we have four giant suitcases and one case just slightly smaller. But there are two carry-ons as well, and they’re as big as aeroplane carry-ons are allowed to be. Anyway you look at it, by the time we get all those cases, the wheelchair and four bodies into the car, we’re sandwiched in pretty damned tight.
The drive to Melbourne airport is uneventful, except that the small giant, which is balanced on the back seat, keeps tipping onto Val, my wife, or the other way onto Nathan, my 17-year-old disabled son. I’m driving carefully because I don’t want the small giant to tip onto Val, who’ll give it to me, or onto Nathan, who can’t lift his arms to protect himself, and because I don’t want to have to brake suddenly and cause the top suitcase in the back to shoot forward and bang Val in the back of the head. Otherwise, it’s a smooth trip, about 90 minutes, but for some reason Nathan starts getting agitated.
At the airport, we have a brief argument about where to park, but there’s no heat in it. We are, after all, going on a holiday for three weeks; first four days in Fiji, two days in LA, then two weeks in Costa Rica for a wedding. We park the car in a disabled parking bay where Jane is sure she’ll be able to find it for her drive home.
In the short walk from the car to the airport, Nathan lets us know he is not happy. He never complains unless something is hurting, and he is complaining now. So, we don’t go to the check-in first; we leave Jane with the suitcases at McDonalds and take Nathan to the parenting room to work out what is bothering him. There’s a couch in there, so we’re able to get him out of his wheelchair and onto the couch and search for the source of his discomfort. It’s easy to find, we think.
Nathan is wearing a condom catheter, a condom with a tube that leads to a bag strapped to his leg. We haven’t been using these things for long. We found out about them about a month ago, when we were looking for solutions to Nathan’s unique, long distance travel problems. The problem seems to be that the condom, which is made of sticky, clingy plastic, has caught hold of some hair in that oh so sensitive place, and is pulling them hard. Ouch!
‘How do we get it off?’ I ask, fiddling fruitlessly with my son’s abused appendage.
‘Just rip it off,’ says Val. ‘One sudden tug.’
So, I tug, suddenly and hard, and Nathan, who is totally incapable of voluntary or controlled movement, nearly lifts off the couch. The condom holds on grimly. Bad move. My poor kid.
There’s no other way but to claw, ease and bully the bloody thing off, though it brings a good tuft of Nathan’s pubic hair with it. Now he’s not just complaining, he’s wailing.
We settle him as best we can, apologising profusely and wringing our hands at our clumsiness. Then we get him into his chair and go back to where Jane is waiting patiently at McDonalds amid our pile of luggage.
‘He needs Panadol,’ says Val as she delves into her handbag, ‘and I need…’ She turns to me. ‘Go and ask for a cup of hot water and a cup of cold water.’
She gestures with her head towards the McDonalds counter. This is a chore she won’t do herself, and she knows that I, like her, hate asking sales staff for change, directions or anything that’s not to do with them making a sale. So, she won’t look at me as she throws me these orders, because she knows I’m going to be ticked. But I can’t make a fuss now, my kid needs these things. I go to the McDonalds counter and get hot and cold water.
Nathan gets all his drugs, some of his food and most of his fluids through a peg in his belly. Val gives him the Panadol using a feeder tub and a syringe, and Nathan promptly throws up all over Val, Jane and himself.
There’s a guy right by us in McDonalds, eating a Big Mac. He does his best to ignore us, but God knows what he’s thinking.
We take Nathan back to the parenting room and discuss what to do. Not getting onto the plane is a possibility that haunts both our minds, but neither of us mentions it.
‘It obviously wasn’t the condom,’ says Val.
‘Could have been,’ I reply. ‘That part of the body, it’s so sensitive, any kind of hurt there can make you nauseous.’ I can say stupid things sometimes. When I was a kid, I got hit in the nuts by a rock in a slingshot fight with some mates, and I’m remembering that pain and the accompanying nausea as I offer this ridiculous explanation. But Val is as desperate as I am to find a solution. She accepts what I say and we decide not to abuse Nathan’s penis with another condom, and to rely on his nappy until we get to Fiji.
We go back out into the real world with a thin veneer of hope that we’ve found the right solution. Jane tells us the guy eating the Big Mac in McDonalds had wished us good luck.
We head to a bar, for a farewell drink and to kill some time. We order three glasses of champagne, but we’ve hardly touched them before Nathan throws up again.
Back to the parenting room for another clean-up and a search for answers. As I’m getting Nathan out of his chair someone starts banging on the door. Val goes to the door and talks to an irate cleaner who wants to come in, and wants us out so she can do her job. She has to wait. She’s not happy about it, but our ability to be sympathetic to the needs of others is low right now.
We realize now that the condom was not what was bothering Nathan, and we’ve got a significant problem. His eyes are glazed, but it’s the nasty cough he’s developing that really worries us.
A cough – so what? Nothing deadly about a cough.
Well, not usually. But Nathan only has one functioning lung; and we were told in his early years that the biggest threat to his well-being would be chest infections and lung problems. And here we are about to embark on a five-hour plane trip, with reduced oxygen levels, and our boy has a chesty cough that’s bringing awful green stuff from deep in his lungs.
Yeah, we have reason to worry.
Our stress levels are rising, and even though we’re going, we hope, on the most ambitious holiday we’ve had since Nathan was born, we start to bicker, and this time there’s heat in it.
We rejoin Jane and our pile of luggage. ‘Should we get on the plane?’ Val asks.
‘Don’t be bloody silly,’ says Jane. ‘You can get to Fiji and then see how he’s doing.’
Jane is down-to-earth sensible. She has been one of Nathan’s carers for a long time. She knows him almost as well as we do, and her conviction reassures us.
There is still quite a wait before our departure, and we spend most of it in line, studying Nathan for clues that will tell us how he’s feeling. Val and I want to be happy about our impending holiday, but, given Nathan’s uncertain state, being happy is hard.
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Tripping with Nathan: A Different Love Story
$16.00 (GST-inc)Born with cerebral palsy, Nathan spent his life in a wheelchair, requiring 24/7 care. He and his parents were up against government inertia and entrenched community attitudes that stigmatise the disabled rather than seeing their potential to live life to its fullest. Nevertheless, Nathan and his parents saw the Rolling Stones, visited orangutans in Borneo, travelled to Costa Rica, the USA and Fiji, and went skiing in Falls Creek. He was even given a starring role in the Commonwealth Games as one of the opening ceremony dancers.
This is a story of resilience and determination, with lessons that will help us all understand that people with disabilities have an inalienable right to contribute in the community in which they live.
