I first met our little mate Amanda in Kununurra, East Kimberley, in the late 1990’s; both of us were working with aboriginal communities. Amanda was working in women’s sexual health and I was with remote aged care, and this pocket rocket has been in my life ever since. Amanda has Cystic Fibrosis and as I’ve learned about people born with this condition, they are uniquely shaped by the CF gene and not only by stature but with dynamo personality.
Cystic Fibrosis is a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys and intestine. Long-term issues include difficulty breathing and coughing and frequent lung infections, and poor growth. The condition is life long and there is no known cure for cystic fibrosis. But defying all odds and the prognosis given to her mother and father with her toddler diagnoses, Amanda just celebrated her 50th Birthday! And we were right there with her.
The celebrations were in Bali and the party was combined with another CF legend, Caz, who was celebrating her lung transplant anniversary of 25 years. For Amanda’s 50th Birthday and Caz’s 25th Lungaversary we travelled from all parts of Australia to Bali, for the gold and silver party to celebrate the milestones of these amazing women.
Through Amanda over the years, I have met several awe inspiring humans with CF and with this week’s celebrations in Bali I met more; and their families and their partners and their stories, which can only bring our own lives into perspective.
Milestone celebrations bring reunions and what a reunion we had in Bali. Great mates from our early days in the Kimberley flew in from where they’d now made home, some with kids, some with out, some even with broken bones, like our friend Fiona who I declared win the best effort prize. Fi flew from Cairns, QLD with a terribly broken arm for which she was still sleeping in a recliner chair for pain. But as Fi said, “as if I was going to complain”. And that’s what living our best life reminds us – someone is always doing it tougher than we are.
This party had the recipe for all good gatherings; great venue, a fun theme, good food, great atmosphere, dynamic people and a magnificent ocean sunset. There was such excitement and as Amanda arrived flocked by the fellas in gold she had the biggest laugh and smile – we just couldn’t imagine being anywhere else.
Amanda had caught another chest infection soon after her arrival into Bali the previous week and she was crook. The gold dress that she’d had been excited to have designed and tailored in Bali had near strangled her during the dress fitting so in true Amanda style she simply threw it to one side, got frocked up in another dress and went to the party. Meanwhile Sophia, Fi and I were wanting to throttle the tailor who didn’t seem to understand the importance of the dress to Amanda – we wanted them to go back, fix the problem and come back with the perfect fitting dress for this special event, but our reaction compared to that of Amanda was just another reminder of us sweating the small stuff. Gold dress or no gold dress, it didn’t matter, what mattered was the 50 friends and family who were there .. besides, the fellas in their tailored gold shorts, shirts and wigs provided enough gold glitter for all.
The emotional speeches by Amanda and Caz began by genuinely thanking their parents for the CF gene. As did all speeches made during the week.
Amanda’s speech was a ripper – telling her journey simply as it is. There’s no ‘woe is me’ airs and graces or sympathy required by this dynamic little woman. Amanda prefers getting on with life and helping others – her dedication to the sexual health of the indigenous community is an inspiration. But with her decline in health of late, working in a hospital system has become an increased risk for lung infection and basically, as much as she hates to admit it, the time has come for Amanda’s hands on work with these clients to possibly come to an end. She sits on many boards and educates the community on cancer (yes that’s another story of hers), sexual health and cystic fibrosis in her spare time and if there’s a cause out there, she’s like a dog with a bone.
Caz’s speech was next. She shared with us her story of how her mother was told if a transplant couldn’t happen in the next six hours, they would have to turn off Caz’s life support. Miraculously the transplant happened and in time. Tragically, of course, this meant someone had lost their life and just as Caz’s family would have been jubilant, another family was devastated. But that family had made the decision to donate the organs of this young woman and this decision had given life to Caz. It was hard enough not to be emotional listening to Caz’s transplant journey but we all lost it when Caz further explained that the woman who had lost her life was pregnant; and how Doctors had saved the baby girl. Caz then shared with us that she is this baby girls God Mother; this girl, now 25 years old is Caz’s god daughter. There wasn’t a dry eye under the balmy Bali sky as Caz shared the story of the relationship she has with her donor family, her donor father even joined her own father to give Caz away at her wedding. There are exceptional people in this world and this story is filled with them, and so was this gathering.
Amanda and Caz and their partners thanked us with such genuine gratitude for making the effort to be there to celebrate these milestones with them in Bali. But it was us who were filled with gratitude.
In the lead up to Bali I had questioned myself if I should be going. I had been away from Broome and my businesses so much of late. Bali had snuck up on me and I hadn’t given it the time, nor excitement that I would normally enjoy in the preparations of going overseas. I literally packed the night before and worked right up until I got on the plane. I felt terrible and thankful all at once; terrible for questioning why I was going and so very thankful that I was there. Listening to these amazing women and the other CF power houses that gathered in Bali, and their partners, families and friends reminded me how much gratitude I have for good health, genuine friendships and life.
After the Sunday recovery and following dinner many of us dispersed throughout Bali to further explore. I headed up north of Ubud for three nights, to an airbnb amongst the quieter surroundings compared to that of Bali’s Legian Beach. I had found the perfect place to immerse myself in relaxed surroundings to reflect, write and design. I slipped into my perfect routine of a long, lazy breakfast, hours of writing before my daily massage, followed by a few hours of millinery design, sleep, work (yes, we can do all) and then in the latter cool of the afternoon I would head out for an adventure; stopping en-route home for dinner at a local open air cafe/restaurant, as suggested by accommodation staff.
Because I spent time at the accommodation writing and designing, I had established a relationship with the gorgeous staff Susan, Made and Jero. It was Jero who invited me to join her family for a ceremony in their temple. I instantly accepted the opportunity. On Wednesday Susan arrived at my room to check out my wardrobe for something temple appropriate to wear, of which of course, there was nothing; after all I’d packed at the last minute with the priority being gold!
Susan returned with a sarong and two beautiful Kebaya (the gorgeous lace traditional blouse worn by Balinese ladies), none of course that would fit me. So we improvised and she left me to get ready. I was a tad nervous at the thought of wearing a sarong to a temple for a ceremony and my capacity to dress myself to ensure the sarong didn’t hit the floor. After all I live in Broome, my extent of experience tying sarongs was loosely over my bathers for around the pool. But Susan taught me well and before I knew it Made pulled up on the motorbike out the front and I was side-saddle “Like true Balinese woman” he said, off to Jero’s Village. I hadn’t asked how far away we were going and given I hadn’t been on a motorbike since Mandora station in 1996, and I’d never ridden side-saddle, I was starting to get a tad worried that I might not be as capable as I may have been in my youth. We travelled past rice paddy’s and into the forrest where the road was narrow and undulated with hills, poor Made was struggling to get speed up on the motorbike with Flic side-saddle on the back. Part of me wanted to laugh out loud – which would have been an excellent echo in the cool of the forrest but explaining my outburst to Made would’ve been too difficult so I just held on and wished that my friends could see me now.
We pulled up at Jero’s home and she quickly whisked me into their family compound to further dress me a tad more appropriate; after all I only had the bottom half traditional Balinese. I met her mother and father and there were kids and people and dogs and chooks and a really lovely atmosphere. She offered several Kebaya to me but they were all too small. After putting the call out to the ladies eventually one came back that fit like Cinderella so we were on. Next was the corset to tidy me in there and again the call went out .. coming back with one that fit. Jero was worried I’d be sick tied in there but we women do many things for fashion and squeezing into clothes was just one skill mastered.
I was ready, and as we left the compound everyone nodded in approval, some with a giggle and a smile. Jero heard the music start and said her son had started dancing so we needed to get there. In the dolly steps that a tightly wrapped sarong commands my size 10 feet struggled with the quick pace but we made it in time to watch her son and I was in awe. Kids of all ages in traditional clothing were dancing traditional moves and everyone from the village was coming together to watch. I fit in almost perfectly … actually I stuck out like you know what but at least I was dressed the part. As the kids finished, the teenagers were next and then the adults and I was front row for the show with Jero and her lovely mum. Kids would do a double take and giggle at me but everyone made me feel welcome. I was the only foreigner to be seen and the only blonde hair in the village.
Next it was time to enter the temple and while that may sound easy – it was not. There were hundreds of people trying to get in at the same time, all carrying offerings and wearing traditional dress and determined to get through those stone entries. Jero and Susan grabbed my hands, and with mum behind me pushing and them pulling we somehow made it through the crowd and through the gateway into the temple, then over the kneeling crowd and right up to the front! Then it was quickly down on our knees, on the crumbling rock ground of the temple. I can’t tell you the last time I knelt on rock or how long I was going to cope at this but I sternly told myself to deal with the discomfort. After all here I was, dressed in full Balinese traditional dress, front row to a crowd of hundreds, in the Pura Melanting temple in the village Klusa Payangan, for the ceremony for money!
Jero taught me what to do as we carried out the tradition and were individually blessed and before I knew it, I had attended my first balinese ceremony. Once again I was filled with gratitude.
The next day I farewelled Jero, Made and Susan and my time at Airbnb Amarvi and headed back to Legian. My few days up North had been amazing. I arrived back in Legian just in time to catch the crew who were at lunch celebrating 25 years since Caz’s actual transplant day. When they asked me how was Ubud I just didn’t know where to start. Even with only three days apart we all had so much to catch up on.
That night I few out of Bali to Darwin and on to Broome, arriving home in time for work on Friday morning. What an adventure. My heart was so full and still is.
I love to travel; the people you meet and the endless opportunities and inspiration that travel provides. This short week in Bali for Amanda and Caz has given me so very, very much and I am filled with gratitude.
Next is Christmas and I’ll be staying put in my beautiful little home in Broome. The plan is to relax with friends and create in my millinery space. I wish everyone a very special time for Christmas and if your time is spent with family, I ask that if the opportunity presents, to please discuss with your family the topic of organ donation. Amanda has taught me that even if we as individuals are willing organ donors, the ultimate decision comes down to our family. If you haven’t had this discussion with your family they may not know your wishes, or what to do if the situation presents. Please look into the topic of organ donation and have the family chat. As sensitive as the issue is, you may just save a life.