Jackson Lee

Baby steps  are giant strides in long road to recovery for victim of rapid onset paralysis

For Jackson Lee November 15 marked a biblical-like miracle moment.

He cast aside his crutches and walked unaided for the first time in three-and-a-half years.  Last week there was another milestone reached, he conquered the first step on a set of stairs. 

Both achievements are huge for this never-give-up victim of the body-paralysing affliction Guillain Barre Syndrome (GBS) that robbed him of his mobility. 

His walk may been only baby steps for a metre or so but it was a major triumph for the now 30-year-old who was felled in his tracks by GBS on July 18, 2018.

It put him in intensive care for 150-plus days and confined him to Rotorua and Waikato Hospitals for almost 10 months.

Jackson’s name will be familiar to followers of In Profile’s predecessor Our People which featured in the Rotorua Daily Post.

There we wrote of the condition that rendered him a helpless tetraplegic and traced his progress through to his homecoming in May 2019.

Now we reconnect with Jackson as he shares his experience highlighting the physical and mental hurdles GBS has forced him to wrestle with. 

But first a quick outline of his life before GBS. 

In 2018 the IT business Jackson founded at 21 was prospering. He and his fiancée Kam West, the law student who is now his wife, took a trip to Europe. 

In Paris he developed raging ‘flu. Whether it was that, dodgy water from a Vatican City drinking fountain which tasted “off,” or something totally unrelated that triggered his GBS, remains unknown. However the day he returned to his Rotorua office desk he had difficulty typing, his fingers were all over the place.

His legs felt weak and at Kam’s urging he saw GP Dr Lauren Taylor.

GBS battle begins 

“I’ll never be able to thank her enough, if it wasn’t for her I could have died.  

She knew a bit about GBS and sent me to A&E. Kam was teasing me about man ‘flu but within an hour I lost leg function, it was terrifying. Things quickly became more serious, there were tests, a lumbar puncture, I was put into ICU.

“The next morning I still had the use of my hands but the doctor said they’d put me to sleep for two or three days. I woke up three weeks later in Waikato Hospital’s ICU. I couldn’t move anything, was on a ventilator and very heavily sedated. 

“Most people there were unconscious; I was experiencing the trauma of seeing and hearing people dying. In essence I was relatively healthy, my brain was healthy, this is where I got the appreciation of my condition.

“Eventually I was flown back to Rotorua’s ICU. Because my body couldn’t regulate my temperature I felt like I was sitting in the Sahara Desert, yet I was covered in cold flannels.

“The pain was constant, the only way I can describe it is it was like someone running a scalpel all over my body. To counter it I was pumped full of Fentanyl which is 50 times more potent than heroin, drug addicts seek it out on the black market.

“The only way I could communicate was by using an eye chart, I was spelling out words with my eyes. It was very tough but ended up being quite funny.

I had to learn to swallow again, my swallowing function had died.”  

Progressing to a ward

After more than three months in both hospitals’ ICUs Jackson was transferred to Rotorua Hosptial’s Older Persons Rehabilitation Service unit (OPRS). There he learnt the meaning of another type of pain.

“My room backed on to the maternity unit. I listened to many women giving birth. I’ll never forget the two giving birth at the same time. It was like a screaming competition to see which one would push their baby out first.”  

By the time Jackson was moved to OPRS he could talk and eat a wee bit. He’d been living on 100 grams of juice an hour and lost more than 50kgs.

“That’s how skinny I got, I was still completely immobile. I felt helpless, someone had to feed me, toilet me, shower me, shave me, clean my teeth. It was the summer period and I got really depressed. I was experiencing what it’s like to be a tetraplegic which really gave me an appreciation of the things I can do now.”   

Bouyed by Kam, loyal friends and intensive physio he began to heal but progress was agonisingly slow. 

After six months Jackson was dealt another demoralising body blow. With his home ruled out as unsuitable to return to, he was told he was being sent to what amounted to an old folks’ home in Hamilton

He appreciated he’d taken up a public hospital bed long enough, but he was gutted to leave his home town, friends and what extended family he has. He’s an orphan without brothers or sisters.

“I did research on the place I was being sent to, it didn’t have a rehab facility which meant I’d have to lie in bed there until my body healed. To me I was basically being chucked out on the street, I was beyond depressed.”

A friend with elected DHB contacts intervened. 

“When she let them know what was going on things were swiftly changed and moves made to get me home. A ramp was installed, the bathroom adapted to take a wheelchair and I was given a special bed to help Kam turn me over. I was still being physically turned every three hours.

Things got better from there on in apart from his physio being stopped.  By then he could move his arms from the elbow to his wrists, but his hands and legs remained immobile.

Red letter day

 May 6, 2019 will always be a red letter day for Jackson and Kam. 

“That was probably one of the best days of my life, it was the day I came home. My mood completely changed, I got this joy about life, this happiness I hadn’t had for almost a year. It was a massive boost of confidence, I’d got very institutionalised, my beautiful wife made it all better, she was strong which made life a hundred times better for her and me.”

It’s inaccurate to describe Kam as Jackson’s wife at the time of his homecoming.  The big wedding they’d scheduled for December 2018 had to be shelved, Jackson was “otherwise occupied” in OPRS.

Two days before the first anniversary of him contracting GBS he decided they’d waited long enough; on July 18, 2019 they wed. It was a year to the day since Jackson became incapacitated.

“I thought we’d make the date a day filled with love and happiness, not a sad day. We found this awesome celebrant who let us use her house, only Kam’s family were there because the ceremony was organised in such a rush but it was a much much better day than the one we’d planned.”

In the days following the wedding Jackson, Kam and his carer Rachel Reedy continued with the exercise routine they’d figured out between them.

Jackson considers it a personal streak of genius that he enticed Rachel away from the hospital where she’d been his health care assistant.

“She met me in ICU where she was scared she’d kill me.”  Rachel’s been with him since his homecoming.

Becoming fit again

“We got 1kgs ankle weights and tied them to my wrists to help me lift them, then progressed to a chest press with a wooden plank. It wasn’t PC what we were doing but I wasn’t just going to lie in bed all day.”

The progress he made escalated when they discovered the Aquatic Centre had a hoist to lift him into the pool. He now swims several times a week.

It’s not unfamiliar territory for Jackson, at 10 he set a freestyle record there he believes still stands. At the time he was a  Rotorua junior rep swimmer.

These days he wears a special snorkel mask so he can focus on his body not his breathing. 

After returning to swimming he joined QE Health’s gym and met the man he describes as “the most amazing physio ever.”   

His name’s Whatarangi Dixon and he too has endured GBS.  It was Dixon who coaxed Jackson into taking those first steps this profile opened with. Reflecting on those steps Jackson says achieving them was one of the best feelings ever. 

“When I achieve milestones everyone claps. I don’t see it then as a big deal because I’m so busy concentrating but later I do see it as a big thing and I celebrate with KFC.”  

Back in computer land  

Out of the gym and pool Jackson doesn’t sit idle, he’s harnessed his IT skills by writing computer codes.  His business was sold when he was in hospital.

Initially he operated the keypad and mouse with his eyes. As his dexterity’s improved he’s back using a conventional computer and allied devices.   

 “I taught myself from scratch how to write three or four different languages of code.   I kept in touch with Provincial Education, one of the companies that used my company’s services before I got sick, I do programming for them.”

Provincial Education has rewarded him with an Inspirational Award.

He’s built appointment apps for Profiles Gym (he’s an active member) and Wilson Bros barbers “in return for free haircuts for life.”  

While Jackson was in hospital Glen Atkinson of Wilson Bros shaved Jackson’s head on his 29th birthday to raise funds for a cure for leukaemia and blood cancer. Leukaemia claimed his mother’s life.

Talking of his overall recovery rate, Jackson acknowledges it’s had a lot to do with his mental state.

“I have learnt not to lose focus but to concentrate on what’s most important for my health and recovery. Physically I’m not yet 100 percent, but that doesn’t stop me doing 90 percent of the things I want to.”       

About Guillain-Barre Syndrome 

Pronounced ghee-yan bah-ray it’s a rare autoimmune disorder where the body’s immune system attacks part of the peripheral nervous system.

Cause unknown but onset follows viral, bacterial or parasitic infection

Both genders affected, men more commonly than women

Between 50 and 80 NZ cases a year.  Several were triggered by Havelock North’s campylobacter outbreak of 2016 which was found to have been caused by contaminated drinking water

First symptoms usually tingling or numbness followed by progressive, extreme muscle weakness, muscle and joint pain, eye muscle paralysis, difficulty breathing

Hospital treatment imperative

Recovery period variable

Approximately 5% cases fatal

   - Sources various