Jackson and Kam Lee. Photo / Andrew Warner
From total paralysis a year ago to latest 'look no hands' feat – charting the Christmas to Christmas progress rare disorder's victim's made
'Tis the season not only to be jolly but the time of year when miracles are embraced and celebrated.
This Christmas week Our People may not bring you a miracle in its entirety but it's one that's well on the way to full-blown miracle status.
It's a year on since we introduced Jackson Lee who was struck down by Guillian-Barre Syndrome (GBS), the rare body paralysing disorder that attacks the nervous system.
Then his prognosis was unknown, some sufferers never recover, some soon "come right", others, like Jackson, do so at their own pace.
Today we can report he's considerably better than when we first met.
"Considerably better" are words we choose with care. The truth of the matter is Jackson's a long way from being mobile without the aid of his technological whiz of a wheelchair (it allows him to stand upright) and assistance from those who care for him, but the impressive progress he's made these past 12 months is a miracle demanding celebration.
Last Christmas Jackson couldn't so much as twitch a muscle, rehab physios worked continuously on his wasted, totally immobile body.
That followed the 142 days he'd spent in Waikato and Rotorua hospitals' Intensive Care Units – much of that time in an induced coma.
Flip the calendar forward to the here and now and we learn Jackson's been hospital-free since May 6 and is bursting to show us his progress. He's now able to lift a hefty water bottle out of the fridge, open it and pour it without spilling a drop.
This time a year ago a nurse held a cup as he drank through a straw, swallowing was difficult.
But in Jackson's world, these are mere trifles compared with the achievement he most treasures – he and partner Kam West are now a married couple.
With GBS scuppering their original wedding day, set for December 15, 2018, he secretly chose a date of considerable significance to them both, July 23.
It was the day GBS began to make its presence felt, within hours of returning from a trip to Europe. In Paris he'd contracted a hefty dose of flu – it's generally held that was his GBS trigger point.
"I just wanted to remember that date for good things, not bad ones." It's a line he delivers with a sly grin. That grin's because he literally caught Kam on the hop, she'd been excluded from his plans until the last possible minute.
She takes up the story:
"All I can say is thank goodness I had the dress I'd bought for our original wedding day, the rest was rush, rush, rush. We contacted a celebrant, she married us at her home, my flowers came from the supermarket, just my family were there." (An only child Jackson was orphaned when young).
As for the reception? "That was dead easy, we bought KFC and had it out in our garden - it was a fabulous wedding, no stress."
Jackson plays us the pictures Kam's family captured of the newlyweds in the Government Gardens and at the Lakefront. His big-screen TV has become the storage base for the meticulously dated pictorial records of each watershed he's reached.
He's big on celebrating them, to mark his 28th birthday and while still in hospital he had his head shorn to support Leukaemia and Blood Cancer NZ's Shave for a Cure, it featured on this newspaper's front page on March 25.
There was another biggie on October 4, the day he ate a slice of pizza unaided.
"It wasn't elegant but finally I'd fed myself, I can now use a fork but my food still has to be cut up, hopeful not for much longer."
Last month he began attending QE Health's gym. Until then he'd had no formal physiotherapy to build up his strength and reactivate his stagnant body parts.
He'd been going it alone, working non-stop at home on a pedal machine, attempting push-ups, stretching and boxing.
He's alternating his QE time with aqua jogging at the Aquatic Centre, with that's come a bonus he'd never imagined.
"Once I hit the water I discovered I could extend my legs fully and move them. Wow, that was amazing."
In Kam's words he was "freaking out with excitement".
Since then he's achieved a "look, no hands" first, standing unaided on the pool's bottom step.
Kam isn't Jackson's sole carer. Rachel Reedy who looked after him with such devotion during his time in Rotorua Hospital's rehab unit, couldn't bear to let the couple go it alone. She resigned her job to spend five mornings a week with her favourite patient.
"Rachel's become part of our family, she does everything I still can't do, puts up with a lot of my s***."
Until October "everything" included a daily bed bath. It took until then for a disability-friendly bathroom to be installed in the home the couple bought as a doer-upper shortly before Jackson's body crashed and burned.
An access ramp was installed much more quickly, both were funded by Enliven, the organisation dedicated to helping the disabled regain at least some semblance of independence.
Then there's Kam's 10-year-old nephew Rahi West, he's appointed himself Jackson's "butler", doing his fetching and carrying and supervising him in and out of his mobility van.
The ramp and van have been Jackson's passport to "real life".
This ocean lover's first out of town trip was to Thornton "just so I could go to the beach, see the sea, but I couldn't get the chair down onto the sand".
A friend's wedding in Taupō followed.
That's where the couple discovered the beauty of a truly wheelchair friendly motel.
However not all accommodation branded "mobility friendly" are created equal.
At an Auckland hotel heavily promoted as caring for the disabled, instead of helping Jackson out of the van as promised, staff locked him into the car park while Kam was organising their pre-booked stay before whipping out for a spot of shopping.
That hiccup was in stark contrast to the reason they were in Auckland, it was to attend a Friday Jams Rhythm and Blues Party at Western Springs.
"The support they give people in wheelchairs is amazing, we didn't have to line up and were escorted to the best position in the venue, we so appreciated that."
The biggest progress for both is Jackson's recently farewelled specially equipped hospital bed needed to turn him five or six times a night. That task fell to Kam.
"It was horrible, I got very little sleep, it was far more exhausting than getting up to a baby."
As a former IT company owner, Jackson's latest accomplishment's been building himself a new voice programmed desktop computer, replacing the eye activated laptop that TalkLink Trust donated him when his communication skills were negligible.
He can now click a mouse, but slowly.
The new machine's hastened plans he began to formulate when his brain worked but his body didn't.
"I'm working on setting up a business that's going to revolutionise the way Kiwis find jobs, it's going really well."
There have, of course, been low points on his road to recovery. Jackson's hit home in January.
"When everyone else was out in the sun, having fun at the beach, I was only just coming to understand I have got what I have got, the limitations it's placed on me. That was when I took a reality check and realised the only way to get over it was up to me, I was the one who had to do the work, when that clicked I came out of my sadness and got stuck in."
Jackson's view of his future comes without frills or false hope.
"In ICU you see people dying around you or who will never recover.
"I'm just happy to be alive, I'm not aiming for anything to happen at any given time, I realise I've got a long way to go but know I'll get there, I'm stubborn."
JACKSON AND KAM LEE (KAM NEE WEST)
Born: Jackson: Auckland 1991; Kam: Rotorua, 1992
Education: Both: Owhata Primary Mokoia Intermediate "She was the pretty one". Jackson: Boys' High; Kam: Lakes High, Waikato University (planning to return next year to law studies put on ice while caring for Jackson)
Family: Jackson: Parents deceased, grandfather (Orewa), "some" cousins; Kam: Father and four sisters (Rotorua). Mother deceased
Interests: Jackson: "Kam, our dog Sunshine, technology, computer games. I love cars, trucks all motor vehicles. When I was able bodied I liked gardening, walking in the Redwoods, going to the gym, fishing, the beach."
Kam: "Jackson, my family, Sunshine, the law, gardening, the gym, renovation programmes on TV."
On the disability they're living with: Jackson: "Suddenly finding myself disabled was scary, the hardest thing was letting go of my independence." Kam: "I won't pretend it's been easy, it's been very emotional, but it's all about perspective."
Personal philosophies: Jackson: "Impossible is an opinion not a fact, nothing should stop you."
Kam: "I don't have one."
"If you’re loyal to them, they will be loyal to you."