Merlin's Quest

I keep moving away from this blog, and then coming back, realising that this blog here is about the closest thing I've got to an actual audience these days.  I did have a few blog posts that I put up on my web page, but like a lot of my fabulous ideas, just creating stuff is only half of the creative process.  Getting that stuff 'out there' to an audience, is a completely different matter!  And not something I'm fantastic at.  So rather than leave a few isolated posts over there where nobody looks, I'm bringing them back home to my blog here.  They do represent a most intense part of my life, so they belong here.  

And when I've finished updating here, I've got some stories to tell about my creative journey over the last couple of years.....

But for now, this is a post that I published elsewhere on February the 6th, 2017, called 'Merlin's Quest'.

Merlin's Quest - Feb 6 2017

2016 was a huge year for the Little Big Mob.  After finally getting away from either being pregnant or breastfeeding for the first time in over a decade, I was going nuts with my creativity especially in its aspect of meditation and therapy, and making wood, wire, raw fleece and spun yarn sculptures of trees and snails and horses and puppy dogs, getting heavily involved in the Weave And Mend Festival out at Djanbung Gardens, and starting up a Stitch And Enrich every Saturday morning at Blue Knob Farmers market.   

 

 

 

 

 

 

Every Wednesday while Currawong was managing the Nimbin Farmers market in the afternoon, I was post hole digging and building garden beds in Mingle Park with whoever from the community chose to turn up and help me create a self organised Community Garden.   I also made some sculptures and a Labyrinth.  

 

 

 

 

 

 

 

A beautiful and talented photo journalist Michelle Eabry, was taking photos of me spinning and weaving, to do a  piece and possible exhibition and web directory, of local and sustainable fibre talent in our region.  I was in the middle of bringing together a stunningly talented group of women to form Nimbins own Spinners and Weavers Guild, and we were planning gardens of a rare cotton breed we're propogating, along with other natural animal and plant fibres, also with plans of getting a mill to process it all, and creating a local Cottage Industry.   

 

 

For a long time now our family has operated under the philosophy of living simply so that others can simply live, and greatfully accepting government payments so that our family can stay together, rather than having to break ourselves up to earn money elsewhere.  In return we give as much of our time as we can to our broader community.  I liked to say we were Market Schooling, being involved in three weekly Farmers Markets as well as our Nimbin Monthly Market.  

 

 

 

 

Currawong was also picking up the food for Nimbin Co-op from Lismore Farmers Market every Tuesday, and at all these markets our kids were forming relationships with other homeschoolers, farmers, artists, and passionate community members.  I also like to call us Hippy Wombles, making good use of what other people leave behind, and we fully Wombled out living next to Blue Knob Gallery and Cafe in a mostly furnished house, and affordable long term rent with labour exchange thrown in.  It was a fully beautiful house too.

 

 

 

Virtually all our clothing was handmade or handed down from local families who loved us, and knew there was a lot of us to clothe.  And just about all our food was local and sustainable, we knew where it came from, and it was extremely affordable, as it was boosted by our labour and stallholders giving the Little Big Mob their produce that they'd rather give away, than take home at the end of the day.  Our kids barely owned shoes, hardly ever saw doctors, and we were non vaccinating, alternative medicine seeking, close to the earth living, old fashioned Earth Punk Hippies.  All the big kids were in the process of going to a Rewild earth knowledge course on the weekends, at the same place where the yearly homeschool camps were happening, and we were in contact with a large and thriving homeschooling community.

Then Acute Lymphoblastic Leukaemia, or ALL found us.

When Leukaemia knocked on our door, we thought we were in the middle of treating an intense reaction to the two ticks that had bitten our 6 year old Merlin, one of the twins, within two weeks.  We were treating it alternatively with natural remedies and reflexology, and he'd pick up hugely after treatments, but go back down again too.  One night his heart hurt from palpitations, so we took him to Nimbin Medical Centre, where we were sent straight to Lismore Hospital - I've never seen emergency staff move so quick - and diagnosed quite quickly on the 10th of the 10th 2016.  I'll never forget that date.  As it was explained to me, if a body needed 100% of red and white blood cells, along with platelets.......he was at 5% for all of them.  Coming very close to organ failure most likely.  Not ticks at all.  It took me a little while for that first huge paradigm shift to sink in.  In a funny kind of way the ticks did us a favour, by getting him sick and in hospital at a favourable time for the type he had.

We were raced up to Brisbane after two transfusions, lights flashing, straight to Lady Cilento Children's Hospital, and from the amazing and dedicated staff at Lismore, to the two women ambulance drivers, to each and every one of the staff I came across at Lady Cilentos, I noticed this earnest tendancy in all of them, once they'd noted my alternativeness, and newbie status in Cancer Land, to tell me everything in their power that they could think of, to prepare me for what was coming.  The empathy and compassion of folk that seek out these healing modalities, or work closely to support them, are some of the most amazing people that I've ever met.  They were so gentle with me.  

  

Currawong had to stay with the rest of the children which was an equally intense journey, but from the start, it was me and Merlin, and I realised quickly that it was up to me to make this extreme path we were on as good as I could.  And very quickly I came to think that I'd had as much judgement about who got cancer and why, and how I would react to that situation, as I'd had about caesareans, and who got them and why, which were judgements that I'd had to face, challenge and humble within myself, when I had my 5th birth as a caesarean.  

 

From life experience, mainly from the intense bits and births, I knew the best way to ride this roller coaster was to be greatfull for the gentle earth angels placed along our road, indeed to everyone for their time and energy, and to surrender.  There was nothing I could do about what we were given to deal with, but everything I could do about how I handled it, for Merlins sake.  

Nonetheless, it was a massive paradigm shift on every level as you may appreciate.  In many ways I felt like Daniel going into the Lions Den of Big Pharma.  And had to very quickly wrap my head around what was going on, and how to approach it.  The first few days were spent getting his blood counts back up to somewhere near normal, as well as his platelettes, and getting a port-a-cath put in just under his shoulder bone, close to his heart, so as not to burn out his veins with chemotherapy.  And his first Lumbar Puncture and spinal chemotherapy were given within three days of the start date.  The night before his first chemo was the longest and darkest night of my soul in my living memory, and after talking long and deep to Currawong, I messaged everyone I knew and trusted, my beloved facebook Brain Hive, from Ayurvedic Masseurs, to Osteopaths, to Naturopaths, to Acupuncturists, to just about every alternative path you can imagine, as well as Oncology Nurses, and Western Medicine Practitioners as well, and asked them if there was any alternative.  

 

And at 5.30 in the morning, at that incredibly alone moment, my accupuncturist asked me to please ring her, feeling how freaked out I was.  In response to my pleas for an alternative, she said "Darling, there's no other cure for leukaemia in children, maybe for different things, but not for this, and you are in the very best place you could be to heal your child.  There is magic all around us sweetheart, and modern western medicine is magic in it's own way when it's needed, and this is certainly one of those times."  I was sobbing to her, "But we're going to destroy the immune system that I grew in my body, and that I fed with my breastmilk" and she replied very directly with "And the immune system that is going to kill him......."  There was no reply to that one.  How could there be really?  She said all the things I needed to hear, from someone who I trusted deeply from my own physical experience, and she helped me deal with my reality.  And I'm incredibly fortunate in that all the people I trust and asked for advice on this journey from my alternative world, echoed this opinion, and supported us in the path we took.  Along with advice about bits and pieces from natural medicine and alternative energetic work that didn't impede the progress of destroying the leukaemia cells in his body.  We collectively came up with the metaphor of hitting the reset button on his immune system.  Destroying it so we could build a better one.   

 

I fell off the horse a few times, but always got back on again quick enough, helped by the extreme empathy of the staff, from Cleaners to Specialists, who accepted me for who I was, and went to great measures to offer an Integrated Approach, bringing together the best options between Alternative and Western Medicine - after discussion - so that everyone was validated for their personal values.  As well as being gently informed, that with a healing rate of 98% for the protocol we were going through, with this hospital connected with hundreds of others throughout America and Europe and their collective experiences, that if we chose to withdraw Merlin from the hospital and their healing plan, they would go to court to remove him from our care.  It almost feels disloyal saying that, given the deep and affectionate relationships that were being formed in our rapidly growing new community.  But it is the stark reality of the situation.

 

I learnt, and so did a whole bunch of other alternative friends and community round the country, that leukaemia doesn't discriminate.  It doesn't matter what you do, how you live, and what protective diets and behaviours you employ.........cancer hits everyone, regardless of all age and social distinctions.  A massive cross section of every available cultural group is represented and goes through that hospital.  A great humbling and challenge to connect despite differences.  I've met some of the most inspiring and super hero like people in there, than I've ever met before.  The Captain Starlight workers, who bring smiles to the darkest places you can imagine.  With songs about booger, grass and pineapple thickshakes.  The volunteers who work hard all day, and then come in at night to play with my sore and sad son, letting him take them on the playing journey he came to know and love involving a pop dice game and plasticene.  The nurses who listened to me at 2am in the morning pour out my anguish, questions and tears while he was asleep.  The doctors who cared as much for my little boy as they cared about their own children, and cried with us in our deepest moments of pain for what we were watching him go through.  The other parents and children, and how they cope, and weather the storms with their own communities support around them.  The caterers and cleaners who did special little things to acknowledge and love us, one even brought us in hand made sausage rolls for Merlins cravings, with ingredients from his garden.  Some of the most amazing people I've ever been priveleged to meet.

 

And our son, Mr Merlin Radbod Post, twin of Maxamillion Hercules Post, both born in such an amazing manner that it launched me into international homebirthing and blogging fame.......is the most incredible kid I've ever been honoured to care for in such a huge way.  In fact the only one.  Our first week and a half was fairly standard for standard risk Acute Lymphoblastic Leukaemia, we even got released to Ronald McDonald house for 4 days, as we hadn't quite got organised with a house to move into close to hospital yet.  

 

 

On the 4th day out, we walked a lot, signing the lease for our house in inner suburban Brisbane 5kms from hospital, overlooking horses in a large series of paddocks and with a rainwater tank, and Merlin complained after that his leg hurt. When he woke up in the middle of the night not able to walk, I had the sinking feeling that we were going back into hospital, and I was right.  In one day he had his port-a-cath accessed by a needle for the first time, got an x-ray, ultrasound, MRI, intravenous chemotherapy, and a hip operation..........and didn't complain once, and INSISTED on moving himself slowly but surely from hospital bed to examination bed, even holding onto a wee for 40 minutes during the MRI, with a foam form resting on his bladder, and modestly waiting till privacy and a hospital bottle to finally evacuate.  I told him the complete truth from the beginning, and told him that I'd only ever force him to do something if I absolutely had to, and he met all his challenges with logic and reason, and a great and developing love of all the staff that he dealt with, as much as they came to love him.  He impressed me so much with his stoic nature, that we all agreed to change his name by Deed Poll to Merlin Stoic Radbod Post, when this whole process is over.  

 

He actually responded really well to the actual chemotherapy, with a few ulcers right in the beginning that didn't really impede his eating and cleared up quickly, but overall he got healthier the more blood, platelets, and chemotherapy he got.  It was just the side effects that were bastards.  We were admitted back into hospital with a candida infection in his hip joint, that ended up requiring three operations of hip washouts to fix, along with an intense and rare case of kidney stones that were actually sludge - the remnants of dead leukaemia cells building up and creating a huge amount of pain to pass.  To fix the kidney stones we needed to pump massive amounts of fluid through his body, which caused him to swell up almost as big as Augustus Gloop in Willy Wonka and the Chocolate Factory.  And also had a really adverse reaction on the hip infection that was prone to too much fluid.   

 

And the whole time he was virtually the picture perfect patient, loving of and loved by the staff, and the teachers from the Lady Cilentos school, and the visitors that came, from loved Nimbin community, to old church friends, to new Brisbane friends, to an amazing 80 year old Buddhist Monk and his entourage who continues to this day to blow our minds, to all the other amazing people that showed up in our lives as the Equal and Opposite to the dramatic turn that our life had taken.  And then when we were just about ready to go to our new home in the inner city, our eldest son Griffyn got chicken pox, and went into quarantine under the house in his basement man cave, and we had to wait 21 days to see if he had passed it onto the other kids or not.  Merlin and I were put in isolation too, as we definitely couldn't be exposed to it or expose other people - it was almost very fortunate that we'd been in hospital when it hit - and it looked for a little while like not even Currawong and I could see each other.  We were devestated.  We missed each other already so much, after never having been parted more than a few days in our entire 17 years of hot blooded love.  As we both had natural immunity from getting measles as children, after a few days isolation we at least could see each other again, but our fractured family was feeling anxious.

All in all, from the moment we walked out of our old house on the 10th of the 10th 2016, till we finally got to move into our new home and be reunited with the rest of the Little Big Mob, was 7 weeks and 2 days.  The weirdest part about that, was moving into a house full of my family and donated possessions, and feeling like a complete stranger to it.  While we were in hospital the rest of the mob had been taken under the wing of the local Catholic community through St Vinnies being contacted, and asked to help out with furniture.  A local volunteer for Vinnies was coming round regularly to bring furniture, clothes vouchers, bags of Bakers Delights seconds, and anything else she could think of to help.  We got out just in time for Christmas, and to everyones delight, we were gifted a Christmas tree and decorations, along with splendidly wrapped presents for everyone including 'mother' and 'father', and the cats and dog!!  Also food vouchers and gift vouchers, and presents so good that you would have thought we'd all been interviewed to assess the perfect gift for the individuals.  All from generous patrons of St Vinnies and its extended community.  Another large amount of judgements faced, challenged and humbled.  

 

 

And in a kinda delicious irony, Senior Constable David Henderson, who some of our friends back in Nimbin are on the alleged wrong side of, took a personal interest in our families story after reading about it on facebook, and felt touched by it as a father of 5 himself, and sent us up an awesome present for Merlin wrapped in Christmas paper and Police bunting, along with some other pressies for the rest of the mob, a lovely card and letter, and some groovy police paraphenalia.  I reckon we must have been the only hippies from Nimbin around, with a present from a Senior Constable wrapped in police bunting under our tree :)  More judgements gone.  All our family agreed it was our best Christmas ever.

 

So with our amazing Christmas, with presents wrapped in actual paper instead of the pillowslips I normally 'wrap' them in, along with the school attached to the hospital that our kids are really loving attending, (and we are too, as it's the perfect halfway mark between homeschooling and school, with incredibly compassionate and flexible staff), and our lovely old Queenslander house, overlooking horses in paddocks, and with a lovely big pool as part of our rent, where we can have our cats and dog as well, and all the amazing people who have turned up, it's been a massive and tumultuous Roller Coaster of a ride.  And at the moment anyway, is well and truly achieving our goal of making this experience as positive as we can for everyone in our family.  We're aiming for having this time in our memories as a largely positive experience, despite the tradgedy of leukaemia in one so young.  

 

 

 

 

 

Not only leukaemia hit us, but two of our dear personal friends also died during this time, one of them an old friend from South Australia who was running our Nimbin Market music stage, and another the mother of 4 of the most gorgeous children we've ever met.  That hit hard.   

 

 

  

And then supposed 'friends' of ours decided they'd move into our house while we were away, moved everything around, chucked a whole heap out, took what they wanted and shoved the rest under the house or stacked badly on my studio things, and bluffed their way through making a total mess of the place for a few months.  I've also been perimenopausal the whole time.  Lucky me.  And there's been a lot of adjusting to do with family relationships both in our inner family and our extended biological family.  Unfortunately old family dramas reared their ugly heads at the worst possible time with my biological family, triggering nasty old patterns, and proving tricky to overcome, but we're starting to get used to big downs to the ups.  

 

As you might imagine, all of this has led to a great Questioning of Everything.  Landing us deeply in the world of Ultimate Paradox.  Everything Known has become Unknown.  Everything up for Renewed Assessment.  A curious side effect for me personally, has been a massive triggering of my Complex PTSD.  The complex bit is the extremely creative imagination that I've been using all my life really, to whitewash my often ghastly reality growing up especially, with a complete renovation of my external world, turning shit things into something good.  A handy and necessary survival skill in essence, that I've employed heavily throughout my life.  But with this extreme life experience, all my skills and limited supply of whitewash are needed for this journey with Merlin, and there's just not enough for the rest of the world, and a lot of my whitewash has faded, leaving the skeletons of some fairly dysfunctional relationships bare, and with not enough left to refresh the coat.  I was going to go to psychotherapy to help me sort the fabricated from the real reality, and there's no need now.  Without my whitewash it's clear.  Our lives have forever changed.

So we've got to stay close to Lady Cilentos for at least the next 3 months, as we were told we must for the first 6 months, and most intensive parts of his chemotherapy treatment.  But for the next three years all up of his leukaemia healing process, we have to be close to a major hospital for his normal chemo, and visiting Lady Cilentos in Brisbane every month or so, and if any complications happen again, we'll be sent straight back up here.  After the first 2 months of chemotherapy, all the leukaemia cells left his body, and the rest of the protocol is making sure it stays away.  It's like the first few months destroyed the weeds, and now we're spraying regularly to keep them gone.  He's not to swim in public pools, only private ones or the sea or running creeks or rivers, and he has to stay out of the sun, maybe for the rest of his life, so we've become adept at juggling rainbow umbrellas around him everywhere we go, as a family sport.  

 

 

We have to do our best to protect him from all viruses, funguses, and bacterial infections as we destroy his immune system to build him a better one, so going out in crowded public places, where he can be coughed or sneezed on, is to be avoided.  We've also made a massive paradigm shift in matters of shoe wearing and personal hygeine, as he can't touch the soil for the next three years, and we now have cupboards stocked full of cleaning products, and I've been known to chase him round with water free hand sanitiser, along with the rest of the mob.  He can't eat takeaways unless they've been made fresh, he can't go near cut flowers, and all in all the changes in our lives have been massive and absolute.

 

You may appreciate that being away from all those markets and our networks, not to mention our affordable rental situation, has taken us away from existing happily and sustainably to overextending ourselves a huge amount.  There are many support networks like the Red Kite Foundation, and the Starlight Foundation, and social workers within the hospital helping us out hugely, but the price of feeding our mob from supermarkets for a start, including buying water as we're all used to living on rainwater, not to mention the cost of accessing alternative treatments, as well as paying what we can for the chemotherapy along the way, is a challenge.   We've also had to take out a loan and buy a car to drive around the city in, as our daily driver back home - the massive pink, red and purple camoflague painted Toyota Coaster - just wasn't going to be practical for driving round the city in.  

 

Rent is double what we were paying back home, but we're so greatful for the pool in this heat.  A dear friend raised money in the beginning as a fundraiser, and our local community back in Nimbin has been, and continues, to give through a series of jars in shops for local donations, created by our beloved friend.  And another dear friend is thinking up everything she can to raise money, like a dinner out together with friends and a cover charge as the fundraiser.

All this has helped us out so much, but we've still got a long way to go, and are getting a bit daunted by finances as we come up to car registration time.  We explained to the guy we bought it off sight unseen what our situation was, and he promised there were no surprises, but unfortunately he was dishonest, and there was.  A lot of the clothes that were handed down to us back home, are just not really appropriate for city life and going to school, so we're having to source new clothes and shoes.  I'm pulling out all the stops I can to try and turn my meditation and therapy of spinning and weaving into an online business, and in the process of writing out this story in more detail as a book to help with fundraising, but we could use some help.  If you have it that is.  We're also reinvigorating our old and hardy dream of starting up a Studio/Gallery and Fibre Retail shop, anywhere in the zones where we can easily access our hospital.

 

 

 

 

Our entire lives have just been picked up, spun around quite a few dizzying times, and then put down again, facing which direction we're not completely sure of yet.  All we know is that we're alive, with a good chance of us all staying that way, and together. And that old Law of the Equal and Opposite reaction is dancing a merry dance in our lives at this time in particular.  In such extremities, the only acronym I can come up with that truly describes how we're traveling, is Everything's Fucked And Fantastic.  EFAF. 

And in equal measures.