Jackson Lee and his partner Kam West. Jackson is recovering from Guillain-Barre Syndrome. Photo / Ben Fraser
Jackson Lee and his partner Kam West. Jackson is recovering from Guillain-Barre Syndrome. Photo / Ben Fraser
2018 can't end quickly enough for Jackson Lee.
It was a year that began with such promise; Cloud IT, the business he founded at 21, was going gangbusters, he and partner Kam (Kamiria) West settled into their first home, a great month in Europe mid-year followed, their wedding was setfor December 15.
That all went down the swanny on July 23 for this formerly fit 27-year-old. His hands and legs began to turn numb, his GP sent him to the ED, very soon his mobility was shot; next stop ICU from where he was flown to Waikato Hospital and put in an induced coma.
Rotorua and Waikato hospitals' ICU units were to become his home for the next 142 days.
In mid-December he transferred to Rotorua Hospital's rehab unit where he lies, his limbs immobile, his hands bandaged boxer-style, his feet bound like a mummy, physios work on his wasted body (he's shed 43kg) virtually non-stop, a nurse holds a drink, he sips it through a straw, Kam brings him a kebab, she grips the stick as he nibbles at the meat.
The rare virus Guillain-Barre syndrome, which attacks the nervous system, has paralysed Jackson but he's finally on the recovery pathway, his lost speech has returned and he's gained sufficient strength to be allowed a few hours at home.
There were many times it was feared he wouldn't make it this far.
With his parents no longer alive and without brothers or sisters, 26-year-old Kam's become his family – his lifeline – his everything.
Her life's in limbo too, her law studies are on hold, she's managed, then sold, Jackson's business and postponed their wedding indefinitely, now he's within easy reach she's rarely away from his side.
It's fitting the first words he whispered post-coma were "hi beaut". He's always called Kam "beaut", for beautiful.
Eyes brimming, Jackson expresses his gratitude to the partner he began dating in 2012. To him she's "amazing, the most incredibly positive person ever".
Jackson Lee being prepared for an airlift between hospitals. Photo / Supplied
Tears aren't new to him, with Kam's visits limited by distance there were times in Waikato's ICU when Jackson openly admits to crying with loneliness, isolation and frustration.
How did this Guillain–Barre business begin?
Its starting point was probably Paris, where Jackson developed a hefty dose of flu. Returning home on a plane full of coughing, spluttering fellow passengers didn't help.
He brands that trip "a flying germ incubator".
JACKSON TAKES UP HIS TRAUMATIC STORY:
"I went straight back to work, when I was typing I started missing letters, I felt my fingers starting to go numb. I went to stand up and wobbled, was feeling fine but Kam made me see my doctor.
"She mentioned the possibility of Guillain-Barre syndrome, I'd never heard of it, as a precaution she referred me to ED. I was still feeling fine but within two hours lost the use of my legs, my body was closing down. I was so scared I couldn't go to sleep in case I wouldn't wake up again.
"I was transferred to ICU, from there I was choppered to Waikato, they told me they'd be putting me into a coma, I'd be asleep for up to a week, I didn't come around for almost a month.
"I had terrible dreams, some were so dark they were almost 'mortitus' (sic). In one better dream I was convinced Kam and I had a baby boy, when I woke up I asked her where our baby was, she said 'we don't have a baby'.
"When I came to in Waikato Hospital, I was totally ventilated, had tubes and devices everywhere, I was so heavily sedated it felt like I was on horse tranquilisers, they kept me 100 per cent calm. My nervous system was so shut down I couldn't even move my eyelids.
"After two months, when I could twitch my shoulders, I was allowed back to ICU here [Rotorua Hospital].
"The only way I could communicate was with an alphabet chart, it was frustratingly slow, then the TalkLink Trust* brought me an eye-activated computer, thank God I'm a nerd. I can send emails, go on Facebook. If it wasn't for technology I'd have gone insane.
"I started to talk a bit, my body slowly came back to life, it's still waking up thanks to the physios and occupational therapists, last week my thumb twitched.
"I can never praise or thank enough the brilliant doctors, nurses, hospital staff here and at Waikato who've brought me out the other side, it's been so weird going from being independent to 100 per cent dependent.
"Rehab feels like the last step of my journey. My stats have been fed into a computer which analyses all Guillian-Barre data from Australia and New Zealand, that gives me a discharge date of February 2, if I don't make that I'm determined to walk out of here on March 24, my birthday. I may look like an idiot walking but I'm convinced it will come back.
"In the last couple of weeks I've been able to go home for a few hours, including on what was meant to be our wedding day and on Tuesday for Christmas, the best present ever.
"It's amazing to be able to feel the fresh air, listen to the birds, see my dog, Sunshine. Kam once smuggled her into ICU, Kam's my number one love, Sunshine's my number two.
"I'm talking to make people aware about Guillian-Barre. I want to join its society ... a member's visited me. We're totally in sync, he knew my frustrations, my goal's to carry that work on.
"I've got nothing to complain about"
*TalkLink Trust's dedicated to providing a means of communication for those unable to do so unaided.
• 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.
• First symptoms usually tingling or numbness followed by progressive, extreme muscle weakness, muscle and joint pain, eye muscle paralysis, difficulty breathing.
The Rotorua mayor is patron of this country's Guillian-Barre Society; 15 years ago her sister developed complications after a severe attack.
She now has a "certain quality" of life but lives with a permanent tracheotomy and night ventilation.
"Her mobility is limited but she remains cheerful and glad to be alive," her sister says.
She describes the society's interactive website as very helpful to sufferers and their families. On it neurologists and other clinical experts answer questions and those affected tell their stories.
Her message to Jackson Lee: "Hang in there and be patient."
Three Rotorua Guillian-Barre victims have words of wisdom for Jackson's road to recovery:
Harry Edward, lawyer: "You just have to be patient, things do improve but really slowly."
Rosemary Michie, former Rotorua district and Bay of Plenty regional councillor: "Persevere, be patient, even if you can't move do your exercises in your mind."
Paul Farrell, real estate agent: "Only think positive thoughts, not negative ones; small steps lead to bigger ones."
