Have a read, share, like and get the story around so that more awareness is created for this terrible disease known as Motor Nuerone Disease. Awareness and funding are the most crucial parts to finding a way to stop MND!
http://m.cleo.com.au/get-talking/news/2015/4/beyond-the-ice-bucket-challenge/
The ice cubes we dumped over our heads have since evaporated. And the Stephen Hawking biopic The Theory Of Everything reminds us again of the debilitating, and fatal, motor neurone disease. But the real story of MND is in those left behind by its consequences. For recently diagnosed Adam, 31, this means a beautiful wife, Kylie, 30, two kids, a dog named Peanut and a romance spanning more than a decade that wasn’t supposed to end this way.
The last time I saw Adam, 31, we were 11 years old and walking through Minnamurra Rainforest, South of Wollongong, for a primary school trip. Then, we didn’t know the genetic Motor Neurone Disease mutation he unknowingly carried and my early desire to write would be the reason we next meet up. On the two year anniversary of his dad’s death, taken by MND, I’m here to talk about his own diagnosis, and honestly, prognosis.
“It’s nice to finally meet you!” Adam’s wife Kylie greets me at the screen door. “I’m so sorry, we don’t have air con right now…” Adam hugs me hello with an awkwardness I can relate to. He was the tall skinny kid at school, and while he’s now expectedly kept his height, he’s much broader – a term I know he’ll think kind, as he tells me later, “I got fat!” He’s not, but MND has a taken an aesthetic toll.
It’s Sydney’s hottest day in 17 years, but Adam is wearing thick black socks. He limps through unopened packing boxes toward the dining table. Friends had banded together to build extensions on their home in preparation for future wheelchair access and they’ve just moved back in. “The support of our friends and family is one of the greatest things to come out of all of this,” Kylie tells me, and I’m pretty sure this public platform to thank them is the reason she said yes to the interview.
“Ah, the socks...” he says. I guess I wasn’t so subtle in taking notes. “My symptoms started at my toes and now they’re limp. I broke a toe when it caught under my feet, so I wear the socks to hold them together.” Segue done.
MND, as it’s known in Australia, might better be recognised as ALS (Amyotrophic Lateral Sclerosis), thanks to the Ice Bucket Challenge last year. The combination of genuine awareness and, according to Forbes, over $100 million in direct fundraising make it one of the most successful social media campaigns ever. The disease is a degenerative disorder of motor neurons in the brain and spinal cord, progressively wasting away muscles. Around 1400 Australians are living with the disease, and there is no cure. The general prognosis for those diagnosed is 2-5 years after symptoms begin to appear.
Kylie only whispers the word ‘widow’ once, while Adam goes out back to fix the sprinkler the kids, Ajai, 8 and Ciaran, 4 are loving like it’s 1989. “It’s scary to think of myself as that,” she says, her face not holding an ounce of the stress it should, but rather a quick contortion of heartbreak. “But, we still feel quite lucky.” It’s a unique combination of realism and positivity.
In the face of a disease that has no survivors, a fact they don’t shy away from, Kylie focuses on silver linings. “There’s something good about going through this young,” she says. “Before Ad’s diagnosis, we lived like everyone else does when life gets in the way – losing touch with old friends, taking things for granted and thinking a lot about the future.” She continues, “People do that though. We live like we’re not going to die. It’s a strange gift to be reminded of mortality. We live much more in the moment now, especially for the kids.”
At 16 Kylie moved to Adam’s high school, catching his attention rather dramatically – mid asthma attack. This was no damsel in distress act, though – his attempts to help were thwarted. After weeks of unwanted mid-pubescent boys’ attention for the new girl, she’d had enough – she’d wheeze on her own, thanks. But, being the fickle lot we are at 16, they won each other over and now hold a well-worn but affectionate title, ‘high school sweethearts.’
For a moment, it’s like I’m not there. Elbow on table, resting her head in her hand, she smiles at Adam. “Wow, it’s been a long time since I’ve thought about any of that,” she laughs.
Then, last year, Adam realised he couldn’t grip his toes. With the aid of his life-long family GP (who also diagnosed his dad), Macquarie University MND Research Centre, neurologist Dominic Rowe and months of painful and invasive tests, diagnosis was finally confirmed.
Packed away is a jar full of written moments, advice and memories on bits of paper for the kids to look back on. “There are things I don’t think I can show or teach Ajai, like shaving. I want Adam to film himself showing Ajai how, but he’s not ready for that yet.” Adam reiterates, telling me he thinks it’s morbid at this stage. But he does keep a diary. For now, it’s for no one to look at, and contains small words of wisdom and jotted down moments, good and bad.
It’s hard not to look at your own life when you meet people facing some of your biggest fears, and question the things you worry about. Life is relative, sure – but Kylie was just a girl, the same as any one of us, who fell for a guy, had beautiful babies and wanted little more than a life that was happy. And the thing is, she is happy. She reminds me at the door when I leave, “It’s a sad situation, but I'm not sad. I hope you felt that.”
Visit Adam's Facebook page: https://www.facebook.com/regalregiment/timeline
