When we opened the Collab we did it like many other first time biz owners. On a wing & prayer, using every penny we had plus our parents (big bank of mum & dad)
I knew it was going to special and even if it took time to get it off the ground, it didn't matter because Neil was the ultimate secure back up support.
Lol. If only we knew what was about to go happen.
When GBS hit.
3/4 weeks after opening Neil had a sore throat and some numbness around his eyes, it was odd but we were sure it was just a funny side effect from the throat.
Two days later he text me after our sunrise class, 'Helen i can't move', i laughed thinking he was over exaggerating. Until i walked home and saw him being held up outside the apartment, my stomach dropped and i knew something was deeply deeply wrong.
After rushing him into Prince of wales and being gifted an ED Dr who knew the very unknown GBS symptoms ( it acts like a variety of other things that people often go mis-diagnosed).
GBS is essentially when the immune system starts attacking the bodys peripheral nervous system, it has 7 varients and no timeline of when the attack ends.
Neil was taken straight upto ICU, the Dr thought his lungs were about to collapse.
During the next 36 hours my crazy healthy 33 year old partner suddenly turned into a fully paralysed, struggling to breath shell with complete vision loss.
All in 36 hours.
Read that again.
We were terrified, the other side of the world from our families and google delivered the news that GBS could happen to anyone, anytime, at any age with a diagnosis of Paralysis for life.
For the next 5 or maybe it was 7 days Neil's body was shutting down, with our main concern that the paralysis was affecting his ability to breathe. His lung capacity went down to 1 litre and i was told very clearly to prepare for the worst.
Inside the hospital we covered Neils ICU bedside with every crystal/ healing oil/massages/ good news stories and legit played Krishna Das on repeat.
Outside of the hospital we weeped, questioned every belief, contemplated life without him and i hugged my dad alot. Oh and red wine, a lot of that too.
With the Collab now just 5 weeks old, 20 classes to deliver (15 that i taught) and life to pay for, it's safe to say it was a really really difficult time. Okay, it was fucking awful. Maybe the worst so far.
GBS doesn't care about your bills or your rent or your new business, it just shows up in your life like a category red tornado the weather forecast never ever predicted.
Syd friends covered classes for free, old friends covered bills & rent payments whilst i sat praying Neil would survive and tbh that a miracle would arrive. Little did i know what the universe would deliver.
Infact at one point i remember thinking, surely they let you out of lease agreements for stuff like this? I wanted to just close the Collab, how was i ever going to make this work? what if Neil passed away? what if i was about to become a full time carer?
In the weeks that followed we fought early intubation, opting to wait and see what Neil's body would in real time rather then guessing. Neil was in a locked in state, meaning he was fully paralysed but he was fully awake and functioning normally. I knew his mental strength, ability to meditate and visualize surpassed anything i've ever known. ( i call him the unlikely yogi )
The comeback king
Sure enough his lung capacity very slowly started rising, his fingers started to wriggle and for the first time in what felt like a life time we could share some words.
He moved from ICU to HDU to the Neuro ward in a matter of 14 days.
After what felt like 3 years but was infact 3 weeks later, where he was 12kgs lighter, with little to no eyesight my brave hero walked himself out of the prince of wales and came home.
It was euphoria.
I sang John Legend 'love me now' at the top of my lungs, saged the house like a hippy and felt like every belief i had questioned was back to remind me it was all going to be okay.
Now what no one talks about in these stories is what happens after, when the person comes home and you're meant to return to 'normal' life. When infact everything is anything but 'normal'.
- When you gotta go to work and look after your partner, who can no longer shower alone or walk 100m down the street.
- When the second income has vanished and suddenly you gotta figure WTF you're going to do to pay your rent.
- When your wondering if and when and how things are ever going return to some sort of basic normality, if your partner will ever be able to see with both eyes again.
How could this syndrome just happen to anyone, like me or you, at any age, at anytime. It was baffling.
Then the GBS foundation found us.
Jade from the foundation found out about us after a friend was crying about Neil on a bus (thanks universe) she got my number me and text me every single week asking if she could help us.
From the moment we met Jade it was like meeting a long lost friend. Her mum had passed away from GBS when she was just 12 years old and the charity had been created in her loving memory. She listened to our story, she understood what we had been through and she said those unexpected magic words 'what can i do to help you'?.
She explained that the charity absolutely supported people in every stage of recovery. Funds were there to be used. Whether it was treatment, adaptions to our home, transport and where needed; help with finances whilst we got ourselves on our feet.
Now, i don't need to tell you that this is a very rare offer from a charity. This intimate level of unique support, not to mention that GBS is a syndrome that most have ever heard of. How were we lucky enough to not just find, but be approached by a charity that intimately understood, and were ready to support us, today?
After walking through the neccasary steps the charity supported us with studio rent payments, all Neils recovery appointments from acupuncture to and became a life line of support.
I honestly don't want to imagine what our journey would have looked like without them, and i sure as hell don't want anyone else who is hit with GBS to know either.
We felt fully supported, heard and most of all; not alone.
Neil's recovery has been so fast yet so slow, he regained full movement in his body, full vision in his eyes and feeling in his hands and feet from acupuncture (paid for by GBS) over the following 12 months. Which is such a credit to his determination and dedication to living life.
Its taken him nearly 3 years to get back to work part time, and the same to return to his love of running/ cycling and being a general spiderman.
He is now back to his thriving legendary self.
I don't need to tell you that the studio has gone onto be a support/beam of light for so many. I chose to share Neils story the moment i returned to teaching ( 7 days in) and i believe that the honesty, truth telling and vulnerability is what built our space to be such the incredibly special place it is today.
GBS, the foundation and Neil's commitment to surviving will forever be what made us.
And that's exactly why i continue to give back.
To all the other Helen & Neil's out there who need our support.
To all the people, of all ages, who are healthy/ strong/ rich or poor, all over Australia who GBS will sneak up on.
I want to give them what we had and i know that if you read this far down, you want to help me too.
I hope our story has reminded that obstacles can hit us at anytime, but our ability to overcome them even when the odds are completely stacked against us, is bigger then we could ever comprehend.
That no matter how far away we are, how bad things might be, we are never ever alone. Reach out, ask and receive support.
I hope i've reminded you the power of community, and to get in and amongst yours.