Why Leah Jay participates in the Big Freeze: to rid the world of MND

Climbing for good: Newcastle woman Leah Jay on her Everest trek in 2017.As she pushed towards the summit of Everest in the pre-dawn on May 22 last year – every step in slow motion, gasping for breath in the high-altitude air – Leah Jay thought not of her discomfort, the cold, the dark, the sheer drops on either side of the narrow ridge she was traversing, nor even the elusive prize that lay a just ahead at the top of the mountain. Instead, her thoughts were consumed by the struggles and fears of another.
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Leahwas thinking of her teenage son, Elliot, and the ordeal he had endured 10 years earlier when he was suddenly struck, then swiftly taken, by motor neurone disease.

“I was constantly thinking about Elliot and what he experienced,” Leah says softly. “I was trying to imagine what it would be like to be 19 and facing death, with your body deteriorating, and you can’t speak and you can’t breathe … that was my driving force.”

In 2007, Elliot Jay was an intelligent, fun-loving teenager who, in his mother’s words, “sucked the life out of life”.

Early that year, Elliot had started to limp and stumble a little. Leah, a well-known Newcastle property management specialist, wasn’t overly concerned.

Suspecting a sporting injury or some other minor ailment, she sent her son off to the GP.

“We had no idea what we were in for,” she says. “It took four or five months for Elliot to be diagnosed with MND but over that time he was rapidly deteriorating. The progression of the disease through his body over those few months – it was fierce.”

Motor neurone disease, or MND, is an unforgiving disease. It attacks the muscles that allow people to move, speak, breathe and swallow. The nerve cells, or neurones, that control those muscles degenerate and eventually die, stripping the sufferer of the ability to perform all bodily functions.

Change of life: Leah Jay got herself fit to meet the challenge of tackling the Seven Summits. Picture: Liz Kalaf

Sometimes the progression of the disease is slow, such as in the case of Stephen Hawking who lived with MND for more than 50 years. In Elliot’s case, the onset was rapid.

“There’s no cure, we knew that straight away,” Leah says, “Elliot accepted it. He knew he was on borrowed time. So what he decided to do, which was what I decided to do from that point, was live every day.

“He took the reins and made sure we all had memories of the last 10 months of his life that we’ll never forget. Strange as it may seem, he led us on that journey. He directed it; he directed the end of his life.”

By early 2008, Elliot was bedridden and his body was failing him. His ability to speak was starting to go, too,but while he still had the use of his voice, he delivered to his mother some blunt advice that sowed the seeds for what would blossom into her passion for mountain climbing.

“He said to me one day, very matter of fact, ‘Mum I’m going to die’,” Leah recalls. “And I don’t want you to become one of those mums who goes weird because their kid has died. Go and enjoy life.

Leah Jay, on her son Elliot, who died of MNDTHE CHALLENGELeah Jay, conqueror of six of the world’s Seven Summits (the highest mountains on each continent) and one of a small group of Australian women to have stood on the summit of Everest, allows herself a wry smile when she recalls the genesis of her mountain climbing exploits.

“Elliot would be laughing his head off about all this,” she says. “We used to go down to Burwood Beach so he could go surfing and he would tease me because I struggled to walk back up the hill on the way home. Seriously, I was that unfit.”

After Elliot’s death, there was an inevitable period of mourning for Leah. She had her days “when you just can’t get up off the sofa”. She started walking and doing yoga, and found that being active and outdoors were good for her mental health and emotional wellbeing.

Near what would have been Elliot’s 21st birthday, an opportunity arose to trek the Kokoda Track to raise money for MND research. Leah completed the trek with her daughter, Emily, Elliot’s father, Geoff, and a group of Elliot’s friends who had remained a strong support unitsince his death.

“It was goddam hard; I really struggled,” Leah says. “But I got through it and then I started to think, ‘OK, what else can I do?’”

A trip to the Himalayas triggered an interest in trekking, which in turn led to an ascent of Kilimanjaro, the highest mountain in Africa at 5895 metres, and the most accessible of the Seven Summits.

All of a sudden, mountain climbing was on Leah’s agenda.

A few more trekking trips to Nepal followed before Leah took on her next major challenge in 2014: a technically difficult Himalayan mountain called Ama Dablam.

Successfully completing that climb was “huge”, she says.

“I thought, if I can do that, I’ve got a good chance of summiting Everest and climbing all the other peaks of the Seven Summits.”

Leah scaled Russia’s Mount Elbrus in 2014, followed by Aconcagua (Argentina), Carstensz Pyramid (Indonesia) and Vinson Massif (Antarctica) in 2015.

She got just short of the summit of Denali, in Alaska, the highest peak in North America, in 2016 before bad weather halted the expedition.

“You get on a roll,” Leah says ofher transformation from an exercise-agnostic middle-aged suburban mum to advanced mountaineer. “Each mountain is a little different, and you learn new techniques.

“Climbing mountains is a lot of mental toughness as well. You have to develop confidence and learn to overcome fear.”

By 2017, Leah felt she was ready to tackle the big one: Mount Everest.

TOUGHENING UP On the way up: Leah Jay traversing through the mountains on her Mount Everest trek.

At the time her Everest preparation began, Leah was already in the habit of running eight to 15 kilometres four days a week, doing strength training twice a week and yoga another two days. For Everest, she amped the training up further: running six days a week, sometimes twice a day, extra, high-intensity strength workouts, hill sessions, a fresh food diet and absolutely no alcohol.

“For Everest, you have to get right outside of your comfort zone, you have to be 150 per cent prepared,” she says. “I’d deliberately get up at 4.30 in the morning when it was cold and dark and horrible, because when you are on a mountain you have to just get up and go. You can’t wait until the sun comes up and it’s nice and bright.”

About seven months after that rigid training ritual began, Leah trekked up to Everest base camp to begin the final preparation for her climb. She would spend eight weeks on the mountain in total.

From base camp, an attempt to scale Everest requires several rotations. To acclimatise and build up their red blood cells, climbers have to climb to camps one, two and three, spending various amounts of time at each, before descending to base camp again to regain their strength.

Leah’s expedition nearly ended after the first rotation and her first experience of ascending and descending the notorious Khumba Icefall, an avalanche-prone, unstable landscape of jagged pinnacles, sheer ice walls and wide crevasses that are crossed by narrow ladders.

“I was so petrified after that first climb through the icefall that I just couldn’t face the thought of going back up; the thought made me physically ill,” she says.

“I rang my daughter, Emily, and told her I thought I had bitten off more than I could chew. But we talked about it and she convinced me to go on.

“I think it was the fear of failure that made me change my mind, and knowing that I had been through way worse when Elliot was dying. I thought about Elliot and everything he had to face and the fear he had to overcome, and I decided that surely I could go out and climb up a few more ladders and go over a few more crevasses.

“Plus, I had had in my mind that if I could get to the highest point on the planet, then that’s probably the closest I could get to Elliot. So that thought played a massive part in keeping me going.”

Incredibly difficult: Leah Jay crossing a crevice on her Mount Everest trek.

Leah pushed on, but the mountain had a few more challenges to throw at her. Arriving at camp four before the night of her summit attempt, there was a dead body on the ground, a stark reminder of the potential dangers that lay ahead. The victim had attempted to summit Everest without oxygen. His climbing mate was alive but gravely ill, and succumbed a few hours later.

On the night of May 21 2017, Leah and her expedition group left the relative comfort of their tents, precariously perched on the South Col at camp four, to begin their final ascent, hoping to reach the summit around dawn.

“Everything is difficult at that altitude,” Leah says. “You are in survival mode. You can’t eat, you can’t sleep, you don’t have a lot of energy but you have to draw on your reserves. You can actually feel your body dying.”

Climbing in slow motion, Leah made it to the top – then promptly went blind in her right eye, courtesy of an aneurism that struck as she stood on the summit. The problem would eventually clear but the loss of vision on one side made for an ‘horrendous’ descent back to camp four.

But before that setback, Leah had the opportunity to experience her fleeting few minutes on the roof of the world, soaking in the stunning view and savouring her personal triumph. She had achieved what she had set out to do. Not just in reaching the summit, but in making a spiritual connection with Elliot.

“As I got to the summit, I felt I was the closest I could be to Elliot here in this world,” she reflects.

“He was there. I felt his presence and I felt a huge sense of relief that I had been able to do it.

“I had climbed as high as I could to try to reach him.”

THE BIG FREEZELeah Jay on her mission to honour her son Elliot. Video by Amy De LoreLeah Jay is just back from Denali. It was the only one of the Seven Summits she failed to conquer on first attempt, so she returned in May to tick it off the list. Unfortunately, bad weather struck again, and at the moment she is undecided on a future attempt. She admits, though, that her climbing campaign really climaxed with Everest last year.

“It sort of tied things up with Elliot,” she says. “After Everest, I found a total sense of peace and centeredness that I really hadn’t experienced before.”

What started out as a very personal journey for Leah has segued into a platform for advocacy. People love to hear about her mountain climbing adventures, so she has become, reluctantly, a popular public speaker and, in turn, a front woman for the MND cause.

This time next week, she will supporting more than 20 sliders launching themselves down a slippery dip into a pool of icy water at the No 1 Sports Ground, as the chairperson of the Big Freeze, a super-charged version of the ice bucket challenge popular on Facebook a few years ago.

Each slider is tasked with raising at least $5,000 for the charity Fight MND. Among the participants will be Chris Fanning, who was diagnosed with MND in February, and his wife and children. Many of the sliders have a direct connection to the disease through family or friends who have been afflicted.

Leah was a slider in last year’s Big Freeze, which raised more than $109,000. This year the target is $150,000.

“I never set out to do any of this, but it does help to raise the profile of MND and I’m fortunate to be able to use something that I enjoy doing to promote that cause,” Leah says.

“What drives me to keep going is awareness of the disease, and funding for a cure.

“As soon as we can find a cure to eradicate this beast of a disease, none of us will have to do this any more.”

The Big Freeze Newcastle will be held from 2.30pm on Saturday June 23 at No 1 Sports Ground. For more details, or to support a slider, visit Newcastlefreeze南京夜网 or phone 0499 014 954.

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