I was inspired to share my rich journey of living with the challenges and blessings of Pseudoachondroplasia (a condition with malformed joints afflicted by arthritis and short stature) when Ben, the son of a good friend, was diagnosed with a debilitating condition at the age of twenty. Immediately I felt a strong urge to share with him the vital insights I have learnt that have helped me find inner peace, good health and to live a full life. And the chapters of a book came to me. So I am writing my book “Little Body Huge Life” and while I continue editing, it is time to share some of it with the world.
Everyone I know has issues with their bodies, mine are just more obvious. Most people don’t have a positive relationship with their body, whether it’s weight issues, illness, disability or injury. Many who are blessed with a ‘normal’ healthy body just don’t like it or parts of it and they treat it accordingly. Many abuse their body by not taking proper care of it; by not eating well, not exercising enough and imbibing too many toxic substances and then are prone to illnesses, pain or decreased capacity in later life. This has bigger ramifications; as we treat our bodies so we treat mother earth.
With a degenerative condition hanging over me all my life I have had a strong motivation to take good care of my body, keeping it fit and healthy, to stave off the deterioration and a frightening future. What has helped the most has been a profound journey of coming to love and accept myself and the body I was born with, and a deeper journey of the spirit, of touching that vast part of me which is not the body. Living with the paradox ‘I am not the body but I am’ sums up my journey of taking good care of my body as well as connecting with my inner divine spirit that is untouched by any of my body issues. If I can learn to love and accept my less than perfect body, and myself, then anyone can.
I started writing my book in late 2009, pouring everything into all the stories of my rich and varied life. But when it ended up being 250,000 words, an unpublishable, undigestible length, so came the slow, tortuous process of cutting it back, finding the diamond at the core.
Disability is coming for most of us sooner or later. It is so easy to trip, lose our footing, fall over and damage ourselves, and pay the price of a moment of inattention. Either from an injury or perhaps an illness, we can find ourselves with new challenges and limitations. Hopefully it’s only temporary, but not always.
It’s so easy to take our current abilities for granted. The same for me, even though I have experience in losing abilities. Losing a few more, I wished I had appreciated that I had been able to roll over in bed easily, to get out of bed easily, to be able to dress myself, to get in and out of the pool.
How did I manage to trip over on a mat only 3 mm thick? The problem dates back to my biggest crash course, when I tripped over on Christmas Day 2008, when my foot caught on a plastic hall runner. It resulted in a bad left knee fracture and in the knee replacement surgery, the stem of the new knee smashed into the stem of my existing hip replacement, and fractured my femur. Ten weeks in hospital later, not only did I end up with the left leg being 2 centimetres shorter, I never gained a full bend of that knee. My shoes are built up so I can function with spine and hips balanced, with both legs the same length, but sometimes my foot doesn’t lift one millimetre high enough and it gets caught, on a rug or even on bare floors. I have fallen at home, and out and about, it can happen anywhere.
In 2021, my last fracture, of the wrist
Despite working with my bodyworkers and developing a high level of awareness of lifting my feet 99 percent of the time, every few years since then, it seems, I’ve had a one per cent moment, and I’ve had a fall, with a few near misses because I could grab hold of something. This was another, after no falls in three years, and never in my 27 years going to Bali, with all its tripping hazards. I was doing pretty well I thought, but here I was again. Is there anything else I can do to prevent them? I don’t like this reality that I’m a falls risk. It’s been a balance for years now, between being aware of my feet and walking technique, aware of the risk of falling, while not giving it energy or attention or visualisation, so I’m not living in fear or anxiety, or creating the reality of falling more often.
A new railing and an extra step makes access safer and easier
Ironically my room was the safest ever this time, after the owners installed a hand rail at my request, down the steps of my room. This eliminated high awareness, cautious moments from previous years, not feeling so safe. My room is wonderfully accessible, which is why I’ve been able to return for so many years, I am usually able to safely function on my own; reach what I need to, and the shower, toilet, and now the steps, all easy to use.
I was grateful I had a peaceful week to get over the worst of the symptoms, feeling more accepting. I was managing more sleep but still feeling wiped out. I wasn’t up for doing much, I felt vulnerable and fragile, but managed a girls’ lunch with Iluh (co-owner), her daughter and Luana on the day before we departed. It was good practice in being out in the world again.
Lunch with Luana, Iluh and Sintya
Heading Home
I was in better shape to deal with the rigours of travel.
Despite a smooth trip, with very good wheelchair assist service by Jetstar, the Bali airport and Luana, I was exhausted arriving home.
Airport in Denpasar Bali, grateful for the assistance from Jetstar and Luana
First morning I woke up groggy and optimistically attempted to put on my winter dressing gown. It ended up uselessly on the floor. I simply couldn’t put any clothes on. My one functioning arm didn’t have enough motion to manage. What to do? It was freezing (3 degrees C), and I was naked. I turned on the heater in the living area, and managed to swathe myself haphazardly in all the colourful shawls I had, but still felt cold. When my friend Satrup arrived to help me dress, go to see my GP and have an xray, she smiled at the sight of colourful, dishevelled me. ‘You look as though you walked backwards through a Bedouin tent, collecting shawls as you went!’
I was surprised that the xrays revealed a fracture of my upper arm. I was told it would heal the best with using a sling, so it was very good I’d been using one since the fall. The shoulder surgeon delivered good news, no surgery needed and I should return to my previous functioning. My fears of a lasting detrimental impact dissolved. What I feared was a full stop, with little improvement possible, was only a comma. He encouraged me to do without the sling, keep the arm moving, within pain limits. If one is going to fracture their arm, it turns out the upper humerus is not a bad place for it to happen.
My new fashion – living and sleeping in my old long black cardigan, button up small top and comfortable skirt, and a shawl to keep me warmer.
Yet more adaptations to function at home were needed, especially staying warm in a cool Spring. I couldn’t wear pants or T shirts, so I ended up living and sleeping in an old long black cardigan, and having cold legs most of the time.
Thankfully I had unspent NDIS funds so I could get daily help. My two long time carers stepped up, despite having busy schedules, so giving me continuity of care, for which I was most grateful. I needed transport for any outside excursions, so I kept them to the essentials only.
Thank God for Chiropractic!
A few days after my return, I discovered why I still hadn’t been feeling so good, in my first Chiropractic session with Dr Liam at Cottesloe Chiropractic. The impact of the fall wasn’t just felt by my arm, but the jarring made a few neck vertebrae slightly dislocated (making me feel like I have a hangover all the time), and spine and ribs also needed sorting. Three sessions and I was feeling much clearer and alert.
The skilled hands of Dr Liam at Cottesloe Chiropractic
The shoulder surgeon told me I shouldn’t be having Chiropractic, due to my tight forenum magnum (the hole at the base of the skull for the spinal cord, nerves etc). Given I’ve been having gentle Chiropractic for twenty years, and it’s great power and effectiveness in helping me live with less pain and have a better quality of life, I said ‘The work on me is gentle, persistent persuasion, and it’s helped alleviate the neurological symptoms (brain fog, migraines, fatigue) from dislocated neck vertebrae. Chiropractic isn’t just big manipulations.’ But my lived experience didn’t sway him, and he repeated the recommendation in his written report to my GP, who is supportive of my choices for what works for my body, including Chiropractic.
By three weeks after the fall, I turned a corner. With my elbow improving, I could move the whole arm more, hold a little weight, so a bit more functioning was possible (eg. holding a cup), I was no longer solely one-handed . I had plenty of couch time where comfort was premium, and lived quietly, not able to drive, swim, or dress myself. I was no longer stuck in a mini-hell, but with improvement and positive prognosis I had hope I would have my life back, and just had to hang in for a few more weeks.
Blessings from Obstacles
Three months after the fall, I am experiencing unexpected blessings from my mishap. I am so happy having my life back. I’m freshly appreciating being able to drive, dress myself (though still with restrictions), feed and shop for myself and accessing a pool. Having independence and freedom again is a joy. And while I’m still working on gaining full movement of my shoulder, elbow and arm, limitations, like not being able to wear 90 percent of my wardrobe, are a mere inconvenience when I compare to when I had more restrictions and dependency.
I’ll be back in my second home of Bali again next year, ready for a happier holiday.
Happy hour with owners of Segara Wangi Beachfront Cottages Candidasa Bali, Made and Iluh, and Luana.
I tripped over on day 10 of my 3 weeks in Bali in August, and fractured my upper arm. In an instant my life changed, and I had to pivot to a different reality, dealing with pain, uncertainty and intense adjustments to how I could function with more than my usual restrictions. I’ve been in this situation several times in my life, and my first reaction was ‘Oh no! Not again!”
I was having a happy day. I’d just returned to my room with Ketut, a lovely staff member, after buying gifts in the art shop on the street front, owned by my Bali family. I love to support their business and bring back beautiful gifts.
As I walked out of my room after getting my purse, my left foot caught on the small mat at the entrance, and over I crashed hard on my left side, onto the tiled floor. Ketut screamed initially, then cried, as she helped me sit up on the ground. I knew I’d done damage straight away, my shoulder and elbow were painful. As Ketut started crying more loudly, I ground out ‘Call Iluh’. In 2 minutes there was a rush of 5 people looking at me with concerned faces.
I asked Iluh (co-owner and Bali sister) to get me a doctor, thankfully there was a medical clinic next door. The very young doctor tried to help, quoting her textbooks, about getting an xray, to see if it is fractured or dislocated shoulder. The picture of spending hours at a Bali hospital and engaging with a medical system that would have no idea about my rare condition, and the look of my dodgy joints on an xray, was not at all appealing. And what then? It was probably pointless.
Iluh
I didn’t think it was fractured, as it wasn’t the excruciating pain I experienced when I fractured my knee, and I could still move it a little. I figured there was some tissue damage in the shoulder and elbow (ligaments, muscles etc). I opted to wait and see if it got worse. And to stay on with my holiday where my simple needs could be met, all with the panoramic view of the ocean to soothe my spirit, and engage with my own doctors when I returned home. The doctor left me with an arm sling, Voltaren and the offer of an injection for the pain.
My holiday changed from one of happiness to one of coping with all the consequences of the fall. I had some serious new restrictions to negotiate on top of my usual ones. My minute by minute focus was on not moving my arm, resting it as much as possible, and avoiding pain. I was suddenly unable to dress myself. With one shoulder not functioning and the other only partly functional as usual, plus an injured elbow, I needed help to get dressed every day. At least I didn’t need many clothes in the climate. Thankfully my beloved travel friend Luana Priotti-Wilson stepped up and helped with what I needed – dressing each day, hair washing, getting supplies, ordering dinner delivery. Life became doing everything one handed.
With Luana before arm fracture
Without an arm and shoulder, I lost some forward momentum, especially for getting up from bed, a chair or car seat. I found myself using the core strength in my torso and thighs to help propel me forward and up. Forty five years swimming, twenty years hydrotherapy, ten years of hydro-dancing had developed core strength; I was grateful for it. I couldn’t roll over in bed, so getting out involved a crab shuffle on my back, moving close to the edge, then a pivot of my body so my feet were pointing over the side, then a forward pike with propulsion coming from my legs swinging down, all while keeping the injured arm stuck to my side.
Bruising down my arm was impressive, as was the swelling. My usually loose medi-alert bracelet started digging into my skin, and we spent an hour at the medical centre next door, with the same young doctor and a nurse, none of us knowing how to undo it, all of us working together through our language barriers and goodwill, and reattaching it on my right arm.
My nights were long; bed was no longer a haven. Limited options for having all of me (especially hips, shoulder, neck and back) comfortable, meant sleepless nights.
ONE-HANDED LIVING
So life carried on, with only the essentials attended to; but being Bali, a few extras. Delicious meals brought to me, and gentle sitting up massages with my devoted long-time massage lady, to soothe the other parts that were jarred in the fall. When I sent word to family up in the village, who I’d visited the week before, that I wouldn’t be able to visit again, they sent me a cooked meal; their way of sending their love and care. My days became very simple, reading, finding comfortable positions, having family visit, meeting with Serly the dressmaker to finalise the clothes I was getting made (though I wasn’t able to try them on, so I had to trust they’d fit okay), hanging out with my friend Luana, having my annual facial with Komang, watching the ocean. Through the fog it felt good to still able to be productive, working through the latest simple editing suggestions for my manuscript, albiet slowed down with one-handed typing. Thankfully the damage was to my left side, leaving my dominant hand free, especially as it’s my favoured side to use Teman my walking stick.
ACCEPTANCE IS THE PATH TO INNER PEACE
I had plenty of space to reflect on my predicament, observing my feelings and thoughts. When we can’t change what happens to us, our only power is in changing how we are with it. I have written a chapter ‘Acceptance is the Path to Inner Peace’ in my book, sharing what I’ve learnt in dealing with what I call ‘Crash Courses’, sudden mishaps or changes in circumstances like this one.
It was interesting to watch a similar journey to acceptance this time. I experienced the same stages, similar to the stages towards accepting death outlined by Elizabeth Kubler-Ross, as I grappled with the difficult bits – resistance (not happy, I don’t want this, resenting the new restrictions, no acceptance yet) anger (grumpy, struggling to manage, with moments of acknowledging the reality), depression (I’m over it, weary, a bit of grief in losing my holiday as it was, fear that I wouldn’t regain my shoulder function or that it would take a long time), bargaining (if I listened to the pain I could find positions that reduced it, more moments of acceptance), acceptance (this is my reality, go with it, surrender to it, explore how I can help myself, and appreciate the best bits eg. the ocean, the beauty, the love). Part of coming to acceptance is allowing all the stages whenever they arise. All my experiences of crash courses haven’t changed the process, I haven’t transcended the different stages. The only aspect that’s changed is that I usually attain acceptance more quickly these days.
This was only the beginning, more of the learnings and the absurd to come…..
What to do when you are one of the vast majority of first time authors who can’t attract the interest of traditional publishers?
Our options are either to give up, self-publish or work with a hybrid publisher who you pay to work with you to produce the book.
After 14 years work I’m not going to give up. But to self publish is to embark on another solitary mountain climb, having to learn another big world of skills and strategies and then try to market it on my own in a crowded sphere. I’m weary of solo mountain climbs after producing Full Circle on RTRFM 92.1 for 15 years and writing my book all these years.
Then I was introduced to Laura Baxter from the hybrid publisher Castle Mount Media in Germany by my friend Shazar Robinson in April 2024 in a Zoom call. It was refreshing to receive a warm, positive response. She said “I found myself in your book Suchita and I was greatly moved.’ Not only did I feel a connection with Laura, what she was offering was someone experienced guiding the birth of my book, giving it the best chance to get out into the world. When Laura said ‘We’re with you every step of the way’ I felt relief and hope that my book could become a reality. But when I found out it would cost AU$14,000 it seemed an impossibility, despite Shazar exclaiming we could do a Go Fund Me to raise the money.
Since then I’ve been doing everything I can to avoid having to do a public campaign with a last ditch effort to try to get the interest of the couple of remaining publishers and also an emerging writers program, with no breakthrough.
It took five months for me to reach the point where I see I have little choice to get my book out into the world. I’ve been pushed out of yet another comfort zone because of this book. Some hybrid publishers have given the industry a bad name, so I’ve done my due diligence plus that Laura has come via my network gives me confidence. With the help of Shazar we launched on September 10 and I’ve been blown away and so deeply touched by the generosity of my community. They are helping to make sure my book is a reality. WOW!!
If you’d like to help please follow the link. Thank you.
I sit up with attention when I read an article about Staying Upright on the ABC news website by journalist, writer and former host of The Drum Julia Baird #juliabaird. She is writing a series on how people endure and asks if we know of anyone who has something to share please email her. Yes I’ve got lots to share! The book I’ve been writing includes dealing with the brick walls and mountains of life.
I would love the opportunity to reach more people than my lovely followers on Facebook and Instagram. A few friends write to her in response and (I later find out) out of 700 emails in one week, I am thrilled to get a message from Julia that she’d love to talk with me.
I share the good news with friends and one says ‘She needs to meet you in person to get a feel of all of you, not just on Zoom, especially with a speech impediment,’ With Julia on her way to the Margaret River Readers and Writers Festival (3 hours south of Perth Western Australia) in a month I ask her about meeting there, where I can stay with family. She comes back with another ‘yes!’
It’s a leap physically, given I’ve been choosing to live quietly since January in order to try for my neck to stabilise. Every time I’ve done something even mildly adventurous the last couple of years (a few hours at a writers festival, a picnic) I’ve paid a price with subluxation of neck vertebrae resulting in fatigue and headaches for weeks. Travelling, sitting for hours in chairs too big, despite bringing my own cushion, and different beds make my back and neck unhappy. So I’ve been staying within my physical comfort zone and working with my Chiro. It’s hardly living hugely, missing out on special events, live acts, going on adventures which are the icing on the cake of life. But I want to reduce the suffering and stress of pushing through, and feel better more often. It’s a relief to live quietly and comfortably for a while in my sanctuary. It’s worth trying.
But opportunities like this are rare in my world, I have to go for it.
So I’m off to Margaret River!
A FEW OBSTACLES
Oh but wait! There a few obstacles!
Six days before I’m due to drive to Margaret River vertigo returns for the first time in 5 months. This is new in my life, happening with full force for the first time on my way to Bali in August 2023, but thankfully it’s been infrequent. I’m concerned that it might be a result of further degeneration in my neck and am awaiting MRI’s. It returns off and on for 4 days, to the point I’m seriously considering cancelling the trip all together. However disappointing it would be, I don’t want to risk getting stranded somewhere on the highway on the 3 hour trip. It’s too far and too great a risk.
Friends are determined for me to get there, as we discuss options. A couple of dear friends offer to come with me, but neither is in the best of health and I can’t accept. But fortuitously my sister happens to be up in town from Margaret River and I can go back with her. I just have to find a lift back home. I put some posts on social media and another dear friend offers to drive all the way from Balingup (one hour detour) to pick me up on Sunday. Yes! I’m meant to go.
It’s so lovely to be staying in the stone cottage after many years, looking out on the peppermint and marri trees, hearing and seeing lots of birds, feeling the peace.
Next morning my transport home reports she has Covid and won’t be coming south. Mmm…. first vertigo, and now Covid. A couple of hurdles.
But it feels like I’m meant to be here. If nothing else I’m relishing spending time with family, especially getting to know my gorgeous little 3 year old great niece. I post again on my networks for a lift home, figuring I could always catch the bus, even though I haven’t tried the big steps in years. I trust it will all work out.
What, and how much, to say to Julia in our messaging about meeting up? Old conditioning surfaces of not wanting to make a fuss, not wanting to be difficult to deal with because of my physical issues. Swatting that away I tell Julia ‘I’ve got vertigo on and off and need to work around getting lifts from my sister because I didn’t bring my car.’ ‘Oh no vertigo! Suchita please tell me when and where suits you and I will work around that. I have a car!’ I add ‘And if it could be somewhere quiet where I’m more easily heard.’ We make a time for the next day Friday and I’m rather excited. She says ‘If your vertigo is too bad I can make it another time over the weekend.’ In all our communications I’m touched by her caring, openness and warmth.
But I wake up next morning to the message our meeting is cancelled because Julia is unwell. She wrote about her health challenges in ‘Phosphorescence’. It is unclear if we’ll be able to meet.
Vertigo, Covid and now Julia not well. Right then.’
NOT MUCH GRACE
I’ve been reading Julia’s latest book ‘Bright Shining – How Grace Changes Everything’. There’s not a lot of grace happening. But I’m meant to be here.
By the time we arrive at the festival on Saturday morning the vertigo is back after 3 days break. I’m not steady on my feet, at risk of falling over, I’m feeling crap (it’s not just dizziness). We adapt, me holding onto my sister, managing to stay upright.
I booked to see Holly Ringland because I loved ‘Lost Flowers of Alice Hart’. When she starts talking of her latest ‘The House that Joy Built’ about creativity and fear ‘oh I need to hear this.’
GRACE COMES AND GOES
Within five minutes of sitting at lunchtime with friends who live in Margaret River my lift home is organised for Monday morning. ‘Ah here is grace back!’ Don’t you love small communities? It also shines through in this festival, all the smiling volunteers and staff, so many participants know each other, it’s so friendly with a warm vibe. I have five people looking out for me while I’m unsteady. It’s my first time here and I’ll be back.
I spend the afternoon at a publishing workshop, staying seated with the vertigo effects. I’ve been to so many over the years, there isn’t anything new for me, just a confirmation I’m doing all I can and that yes getting traditionally published is very difficult. I’m here to hopefully meet the presenter who is involved in the writing scene in WA and who is a mutual follow on Instagram. I’m trying to broaden connections in the local writing community while I’m here, after giving up a few years ago when it didn’t feel worth the effort. My last attempt was at a small monthly gathering of book writers where I was desperate for input about ‘show don’t tell’ which I was struggling with. Around the table of fifteen people it was impossible to get a word in because someone was always jumping in and my soft voice lost out. Usually I just went along with it as I often learnt something and I didn’t feel so alone as a writer, but this time felt like an urgent need. When I mentioned my difficulty with the convenor during the break I thought I might find some support. But he didn’t intervene and I was left frustrated, my problems remaining, as the meeting finished. As it was the same time as a favourite hydrotherapy session, I opted for the extra exercising instead.
We do a couple of exercises with others at our tables, like assessing a book we are given for publishing. But I’m not the only one finding it hard to hear or be understood in the noisy room, there is too much distance between us around the large round tables. When the end of the session comes and suddenly a queue forms to meet with him, I’m stuck in my seat unable to stand safely. I’m thwarted yet again. I’m really trying to get ahead here. Being a first time unknown author seeking a publisher is hard enough, without the limits of my body adding to the frustration. Grace doesn’t feel like it’s here.
Julia tells me she is hoping to make her session the next day. But it’s still an unknown if we will be able to meet, the most I hope for is a quick heartfelt hello if her event happens. Thankfully next day the vertigo is over. Oh the pleasure in being able to walk confidently, independently.
I’m amazed to see Julia stride onto the stage for her session in her green sequined pants suit with strength and energy. Talk about staying upright. I soak up the discussion around her books ‘Phosphorescence’ which explores awe, and the new one ‘Bright Shining’, and what awe and grace mean in our lives. Elevating their significance in a world that rarely talks about either, it is wonderful to float around in them and reflect on how I can enhance them in my life.
I sit down several metres opposite Julia for the book signing and wait for my chance to say hello. She recognises me and gives a radiant smile and a wave. She focuses on each person, smiling, many wanting to share something with her, some she hugs. I enjoy watching the whole scene; the long queue of mostly older women speaking animatedly or waiting quietly, Julia’s interactions and the heart connection with fans, the organisers quietly doing their thing.
I notice a woman with funky short hair off to the side talking with two other women, and when finished she comes and sits on the padded bench seat next to me. I’m wondering if she is Julia’s friend Jock, who Julia mentioned in her session is travelling with her. I smile and lean over doing my best to speak over the noise and say ‘Are you Jock?’ She smiles and says ‘yes’. I say ‘I recognise you from Julia’s description in “Phosphorescence”. ‘Yes that happens a bit’ with a rueful smile. ‘And who are you?’ she asks. No sooner had I got ‘Suchita’ out and she immediately knew who I was, and the sagas Julia and I were going through just to meet. ‘She’s hoping you can spend time with her when she’s done here.’ I do an inner fist pump. ‘Your Zorbas Dance Club sounds amazing, we love to dance. Are you still doing it?’ ‘No I stopped some years back.’ We go on talking dancing.
GREEN SEQUINS
When she is free, Julia comes over with a big smile “Suchita! Finally!’ and gives me a big hug, as I drown in green sequins. ‘I’m hoping you can join me in the authors’ green room for a coffee’ she says. ‘You’re up for it?’ I ask. ‘Yes!’ she says (she seems to say that a lot). I do an inner dance of pleasure and joy. I’ve gone from it’s not going to happen to yes it is! Grace is back in full glory.
I give up trying to be cool about my first time in a green room. I’m offered an array of delicious food and drinks by the lovely volunteers, ‘no thanks, I’m too excited!’ I say. As Julia relishes the soup, we settle in. Watching her interactions with Jock I can see their special friendship, an easy casual intimacy between them. The Tshirt Julia is wearing under the sequin jacket says “Smash the Patriarchy’. ‘I’ll send you questions‘ Julia says as we sit, ‘but I’d really like to get to know you a little while we can. So what is concerning you now?’ I find myself raving on about the difficulties trying to get my book published, my frustration and weariness pouring out. She is sympathetic and says ‘I can mention it in the article. What about writing some articles?’ She admires Teman my walking stick. ‘It’s made from a mallee root, with this perfect round ball for the hand. It keeps me solid and balanced’ as I show her. We discuss loving our body and what that means, and what keeps me upright. I feel like we could talk for hours. It is such a delight to spend about 30 minutes when she gives me her full attention while asking questions. She fetches me some divine pumpkin soup, despite not being at full strength herself, and we take photos. Standing next to statuesque Julia certainly makes clear my height, as I search for ideas for a book cover photo which shows my height at a glance. My inner dancing continues all evening.
GRACE EVERYWHERE
For the trip home I have concerns about spending 3 hours with a stranger, becoming exhausted trying to communicate with the noise of the car. When he sends a message asking if there are any special considerations he needs to be aware of, I say ‘Thank you for checking. I have a speech impediment which takes a while to get used to, so it’s fine if we don’t talk much. And if I have vertigo I may need your assistance to get inside.’ In a refreshing change for an older man, he starts our journey by asking questions about my life. We talk non-stop for the whole trip. we have so much in common; knowing many of the same people, both conservationists, community minded, having other similar interests. And no vertigo. Grace everywhere.
STAYING UPRIGHT
Julia and I each faced adversity but we both adapted and stayed upright, kept going with our plans for the wonderful festival and were rewarded. In a clear example of the ebbs and flows of life, the contrast between a few days of obstacles and then grace overflowing was stark. It was all the sweeter coming after challenges.
I had three neck vertebrae slightly dislocated by the time I arrived at my Chiro a couple of days later. It only took two sessions to settle it back, which is great progress after usually taking weeks to stabilise.
Wow! Beautifully written, she observed closely. What heartfelt, respectful, insightful writing. I love her acknowledging ‘the deep pots of hard earned wisdom’ of the many people quietly getting on with their lives while staying upright, it’s not just me. And weaving dancing into it all – yes! And ‘stubborn joy’! I love how she finished the article with the enduring qualities of mallee trees, linking that to Teman my walking stick and me. I feel seen and heard like never before.
As the gentle violins, then the first tenor begin, I crank up the volume. I want to hear every note of the Three Tenors singing Nesun Dorma. It’s the perfect soundtrack to the landscape of farmland, bush and forest on the highway, on the five hour trip home.
Adjusting the upholstered foam insert for the car seat for maximum comfort, I’m hoping my old Holden Barina station wagon won’t create a drama by breaking down in the middle of nowhere, like once before.
It’s all the backdrop to an internal struggle, wrestling with a major crossroads. At age thirty one I have to choose between continuing my Environmental Science career or jumping off another cliff into the unknown, to live my creativity, inspiration, passion, spirituality and bliss and see where they take me.
I’m not long returned from ten months of travel on my year’s leave without pay. First tropical island hopping through South East Asia and then five months at an ashram in India. A journey of extraordinary inner and outer adventures, bringing me home with opened heart and free spirit. Back at work, I felt almost a physical contraction in my body and spirit, shrinking to fit the confines of the job. I dreaded the return to living like an automaton, in robot mode, up and at ‘em in the morning, only half awake, half aware every day. Going back felt jarring.
TWO PATHS
So I am driving along contemplating the two paths in front of me, going from one to the other, thinking and feeling through the pros and cons. Added to the mix of needing to make a major life decision within the next few days, I’m worried about my friend Anshumali who at forty one is on life support with a brain aneurism. A musician, astrologer and university graduate, we shared a house for a few months and became firm friends, having many deep, philosophical and hilarious conversations. He is very real reminder that postponing living to the full is a path of regrets.
Like much of life, it isn’t a black and white decision, with plenty of grey in the middle. I still love many aspects of the work in wild and stunning national parks. It’s my dream job. I worked seven years to achieve it. It’s not an easy decision to give it away. It fulfills my desire to make a difference, to make a contribution, which helped shape my decision to choose a degree in biology and environmental science. It’s work with high meaning, making sure our wilderness areas exist healthily for the long term. My colleagues are lovely, intelligent, committed people. Turning my back on a well-paid career, knowing it will be a growth industry, knowing I could progress to a senior level and have influence, is not to be done lightly.
A BANDAID
But my frustration has been growing. Environmental science is a bandaid, dealing with the symptoms of a bigger problem – the level of human consciousness. Having been transforming my own consciousness for the past ten years, I see the connection between the individual state of mind and our collective impacts on the planet. We are all ripples in ponds. While the work is important, it isn’t getting to the core of the problem.
This career takes all my energy. It’s becoming more physically demanding. And there is a part of me dying inside, particularly my creativity. My desire to try DJing can go nowhere. I’m frustrated that I have abilities which don’t have an outlet. From the first day of the job I knew that I wouldn’t be doing this work forever. I want a chance to explore, develop and use more fully all of who I am, especially my talents and skills. I believe a recipe for a rich, contented life is fulfilling our potential, and using our gifts to make a contribution to the world. After jumping off several cliffs to work on myself, in clearing the way inside to my larger self, I need to live all I have discovered more fully. I have a longing for a bigger life. But is this the right time, or should it remain ‘one day’ for now?
With the first crescendo of magnificent voices and orchestra, my heart soars at the prospect of jumping off the cliff, and being free to be me. But it’s scary too, this is a big leap into the unknown, with no idea of what I will do, and no income prospects for a while, though the redundancy package of $19,000 will help. But I have no mortgage or family responsibilities, I’m not bound by those restrictions.
Then I’m filled with dread. How to tell my parents, who supported me through university? Would leaving the career for my dream of a huge life be irresponsibly self-indulgent coming from my privilege?
No! Not with known and unknown limitations and challenges in my future. I need to go for it while I can. Being in my particular body, somehow gives me permission to live not an ordinary life, but to take risks and go for the highest. Because I am different I feel freer to live a different life, to choose the road less travelled.
LIVING WITH PASSION AND TOTALITY
All this swirls inside as I’m carried away with one of the most magnificent crescendos ever created, with the large orchestra and not one, but three tenors, giving their all. I realize I have to live my life with that level of passion and totality.
Then it becomes clear I have to take the jump. And now is the time with the redundancy money to ease the way. I can’t wait any longer to live a huge life. Playing the track again I soar with the thrill of endless possibilities, shouting ‘Yes! Yes!’ with a fist pump out the window at the exultant end.
Arriving home at sunset a few hours later, I discover that at the exact time I was listening to Nessun Dorma the life support on Anshumali was disconnected and he took his last breath. It sends shivers down my spine. It’s like his final gift to me was the shove I needed to push me over the edge, to be audacious and live a life true to myself.
I didn’t know that I wouldn’t be able to dance by the time I reached my early thirties, but I take comfort that while I could, I did!
In dancing I’ve found a profound joy of being in my body, it’s helped me love and tune into it, feel its beauty and become embodied.
Early Free Dancing
My love of dance was born when I was young, sitting with my family in the cheap seats watching Rudolph Nureyev, Margot Fonteyn and Michal Baryshnikov with some of the world’s greatest ballet companies. I loved the stirring music that was brought to life by the dancers. I loved the spectacle of the whole show, with the costumes, sets, the drama, the grand old theatre, everything about it.
When I was twelve I came home buzzing from seeing an exciting dance performance to the Listz Hungarian Rhapsody No. 2. When I found out my parents had the full orchestral version on record, the idea grew that I really wanted to dance to it. It’s a rich piece with both passion and softness. One day when everyone was out I turned up the volume, and danced my heart out around the lounge room, discovering a whole new world of letting my body go into the music. The privacy was important, I was free to move how I felt. It didn’t matter what I looked like, it didn’t matter that I was not ‘good’ at dancing, all that mattered was that it made me feel invigorated. I felt as graceful and athletic as a ballerina. This was the start of a great love of free dancing and feeling joy in my body.
Bush Bands and Live Music
Little wonder that when I discovered dancing at university, with bush bands and live bands at hotels my love of dancing took off.
At pubs first I was an observer, not game to get up in front of everyone. Then a friend would drag me onto the dancefloor. It took me a while not to be too self-conscious, feeling like everyone was looking at me, and to find my own style. I gravitated to dark corners where I was the most invisible. Because everyone else was going for it, so could I. My body was at its peak of capability and I loved dancing so much I usually overdid it, always dog tired and sore afterwards, but it was worth it.
Active Meditation
What shifted everything was dancing in Osho’s active meditations. My first therapy workshops at the local Rajneesh centre included active meditation. To do both therapy and meditation together was potent, fast tracking emotional healing and a deepening spiritual awareness.
Dynamic and kundalini are active meditations devised by Osho (formerly Bhagwan Shri Rajneesh) for Westerners who, he believed, with our busy minds have trouble just being able to sit still and meditate in the traditional Eastern way. So first we need to move, release and express some of the tension and worries, then we can more easily sit quietly. Both have a dance component and they changed how I danced and my relationship with my body.
Movement to music rather than dance might be a better description. The instructions are to let the body lead, however it feels to move and express itself, to allow it. To get the mind out of the way enough to be able to tune into the body, and to trust and allow it to move as it wanted.
I was intrigued by the instructions and not sure what they meant. So it was a surprise the first time, as I stood and listened to the music with thirty others, being open and waiting for the movement to come, without forcing or making it happen. A tiny movement of my hands arose, and I stayed playing with that than until my wrists and then my arms started, which lead to a gentle swaying, and off I went.
Everyone had their eyes closed so there was no self-consciousness about what we look like or moving to impress others. It took me a while to get the hang of this new kind of dancing. This wasn’t about jumping up and down to a clear beat like my usual style. But having my feet on the ground and moving in more creative ways, plenty of arm and body swaying. I danced out my pain, frustration, anger, joy, expressing what was needing release at that moment.
It felt such a respectful thing to do, to listen to the body and let it respond to the music, with echoes of my childhood dancing to Listz. This changed my relationship with it. It was a good way to tune more into my instinctual self, rather than the mental self.
I felt such a joy and freedom giving expression to my deepest being through dancing in a meditative state. It taught me a new respect that grew the more I did the meditation, and to tune into the more subtle levels. These have been tremendously helpful in loving and taking care of its needs.
A Breakthrough
But this freedom was not to last. In 1992 at the Osho commune in Poona India, my body’s new limitations were demanding attention. Here was my next level of deterioration. With an increasing difficulty in being able to walk, stand and dance, kundalini meditation was becoming a painful exercise in my hips, thighs and back. While in my early twenties I danced for several hours, now thirty minutes was too long. More of my attention was going on experiencing the discomfort than letting go into the music.
But I had a breakthrough during a meditation.
Stubbornly persisting because I loved kundalini, especially with hundreds of others creating a powerful field of meditation, I didn’t want to miss out. It is gently active, meaning it worked for my body.
After a few days of struggling with this fresh development, one afternoon during the shaking, I couldn’t stand the pain anymore. ‘This is ridiculous, creating all this suffering. For God’s sake, sit down woman!’ I stayed still on the plastic chair for a few minutes with my eyes closed, watching the pain settle down and drawing in deep breaths. People around me continued their silent shaking. I felt sad, ‘Is this the end of active mediation for me?’ The evocative music was calling and I had a strong desire to continue. ‘Can I shake while sitting?’ So I experimented with shaking what parts I could; firstly just my fingers lightly softly, then my hands, which extended to my arms, shoulders, head a little, legs and feet. ‘It’s not the same, it’s a bit clunky, but it’s okay, I can feel it releasing tension and help me become grounded in my body.’ The aching eased so I stood up again and continued and then when it became uncomfortable, I sat again, shaking as before. I continued the same in the dancing stage. It felt like a compromise of the technique but what a relief to not have the discomfort.
It felt important to be respectfully listening to the needs of my body. While I missed being able to shake and dance with all of me, the quality of my meditation improved because I wasn’t so consumed by the aches. I could relax. The Queen of Adaptation strikes again.
Chair Dancing
New limitations didn’t mean I had to miss out. I became accustomed to the new version and explored ways of being as total sitting down as I had been standing up. While I felt a keen sense of loss at not being able to dance as I had, after a while, to my surprise, there was no sense of loss within the meditation. I felt whole.
I realized it is important for me to cultivate grace, by dancing in a chair, swimming and hydrotherapy which I continue to this day, because most of the time I don’t feel physically flowing. Those times support me to love my body.
That’s not to say I didn’t grieve not being able to dance anymore, especially when watching others having a wonderful time moving freely for hours. But discovering that I could still enjoy its delights while sitting, helped with my journey of acceptance. I reached the point of feeling as happy and total dancing in a chair as I had ever felt on my feet.
Becoming a Dance DJ
But in a wonderful twist, for twenty years I channelled my love of dancing into creating the ultimate experience for others. It wasn’t like I thought ‘Damn I can no longer dance, it’s time to finally say yes to my desire to try DJing’. But I had the chance a few months after returning from my travels, and I loved it from the first night with a happy, pumping dancefloor. After a few years of learning Zen and the art of DJing, creating the experience to feel the joy of moving to music at Zorbas Dance Club, my grief melted away.
Chair dancing became my happiness and a way of tuning into the crowd and the music to choose the perfect next track. And occasionally an exceptional track made it impossible not to get up for a couple of minutes to dance my heart out until the pain had me sitting again.
Chair Dancing DJ
Tina Turner
But it was Tina Turner who opened the doors for me to dance again.
One day at hydrotherapy I was going through the sometimes boring exercises, with plenty of kicking and walking, when ‘Nutbush City Limits’ came over the system, louder than the usual background level. As an old favourite at my Zorbas Dance Club, immediately I wanted to dance. But what about the ten others quietly going about their exercising? Would I look too weird? But the beats, Tina, the energy were calling me, I just had to dance, weird or not. I started off subtly but suddenly all my years of not being free to dance on my feet disappeared in my delight in dancing with no pain. I leaped, I bopped, I twisted, I moved my arms all over. Oh my God! I can dance! Oh to feel free to move with abandon. I moved bits I didn’t know I had. Hale Tina!
There was no stopping me after this and I invested in a waterproof mp3 player, loading it with my considerable collection of cruisy, groovy tracks. No more boring hydrotherapy. I’m a great believer in value adding to life’s experiences when we can, and so it has been for hydrotherapy. Even simply walking or doing squats, I can move to the rhythm, add a bit of sass and fun. Jumping up and down adds much needed weight bearing, which isn’t possible out of the water.
Dance has once again become an important part of my life. It’s feels like a miracle to have lost full body dancing and now I’ve found it again, with all its physical and mental health benefits.
Loving our body doesn’t finish with a full stop. It takes ongoing nourishing of our wellbeing bank, and dancing gives mine a huge boost.
From the chapter ‘Learning the Art of Asking For and Receiving Help’ in ‘Little Body Huge Life’
After a bad fall in 2009, I was on a crash course of learning the art of asking for and receiving help. The knee fracture could only be fixed with replacement surgery during which my femur was fractured. I, like most people, would rather not have to ask for help, I’d prefer to manage whatever it is myself. But there are times we have no choice. By the stage of the accident, living in a deteriorating body had given me training in the art of asking and receiving. It was one thing to accept help from friends, but I was about to launch into an intense learning curve.
INTENSE LEARNING CURVE
Friends and family stepped up magnificently in my months of recovery. But having surrendered to needing support, I wanted to do it with awareness so it was clean and clear. That meant having an honest look at any residual discomfort. I had to consciously ignore old habits of resisting and welcome the receiving within me. I found a clean gratitude when the receiving doesn’t come with neediness, or being a victim, but actually one of strength in recognizing the reality of what is required and not letting petty hang ups prevent getting what is needed. Friends talked of loving having the opportunity to help out a friend, that it felt like an empowering healthy exchange. With the intensity of so much giving and receiving, so the last of my ‘I’m not worthy to receive this, I don’t want to be a burden…’ disappeared.
A PROPOSAL
My friend Anatta came by with a proposal a few months after my ten weeks in hospital. She said “I’ve got a proposition for you! Let’s put on a fundraising Zorbas Dance Club to help you with your needs in recovery and at the same time answer a desire I’m hearing from many people for the return of Zorbas”. Anatta had been my floor manager for my one-of-a-kind community dance club in Fremantle Western Australia for the last two of its ten years, before I hung up my headphones as DJ and manager. At a time where the only venues that provided for free dancing were nightclubs and pubs, Zorbas provided a safe space for the community to gather to dance and socialize. It was my passion and great love.
Early Zorbas Dance Club
I was touched by Anatta’s kindness but the idea had me squirming. “Thanks for your thoughtful suggestion” I said “but no I don’t want to do it. I’m uncomfortable with being openly in need in the wider community. I don’t want people to think ‘poor Suchita’.” It didn’t sit well with my pride and ego to ask so publicly for help. “And I don’t want to lay open my vulnerability.” I was living a quiet isolated life focusing on my healing, physically fragile walking with crutches and not able to do much. I felt more vulnerable than usual out in the world. I wasn’t as clear of my issues about receiving as I thought I was.
Besides, I was okay, life wasn’t so desperate that I needed a fundraiser to overcome my current circumstances. I was managing to have what was important, with healing sessions and other essentials. “But what about a wheelchair, wouldn’t that be helpful?” threw in Anatta. “But I’m not at all sure I’m capable of any DJing, let alone helping to organize an event.” I threw back. I was still becoming tired easily and was always worn out in the evenings. Djing is intense demanding work at night, and I found the idea daunting, especially when I wouldn’t be able to speak to anyone with my whispery voice above the loud music.
THE CLINCHER
Anatta returned with new ammunition in a few days. She said “I’ll do all the organizing, all you have to do is turn up and you’ll be totally supported. I’ll get friends to help which will make it fun. Can we ask Avi to DJ the second half of the night so you don’t have to cover the whole five hours?” Avi had been a regular DJ who understood the Zorbas ethos better than anyone else. “Besides” she added the final salvo “it isn’t just about you getting support, you would be giving back and providing a service to your community. It’s been too many years since our last dance night and they’re desperate!” That was the clincher, to be able to give a special experience, something only I could uniquely do, how could I say no?
PUSHED OUT OF NUMEROUS COMFORT ZONES
So I was persuaded into reluctantly asking for help on a scale bigger than I had before, pushed out of numerous comfort zones by the love and determination of a dear friend. I had to open to receiving a whole new level of support without feeling diminished. I didn’t want any part of a victim mentality that ‘poor Suchita’ had to have a fundraiser after her misfortune. I didn’t feel like a victim if I could give back, then it felt like an exchange and not a one way affair.
FACING THE REALITY
It was time to face the reality that I needed a wheelchair of my own, rather than hiring an ill-fitting one when required. So that I could get out and about more; go to shopping centres, to concerts, festivals, events or walks out in the bush. I finally came around to the idea out of necessity. Here was a familiar pattern of denial and resistance to going that next step in acknowledging deterioration, until I had no choice. I also needed a wheelchair made especially to fit me, which would cost up to $3000 and not something I could afford without a fundraiser.
AN EXTRAORDINARY EVENT OF LOVE AND GENEROSITY
So a date was set two months ahead. My old partner Avi leapt at the chance to do the later stint of DJing. And so began a collaboration of my friends, who had already given so much support in the last six months, and the wider community, to create an extraordinary event of love and generosity.
The Hilton Bowling Club was transformed from drab sixties décor surrounded by club paraphernalia to a cosy, cosmopolitan venue with the help of lots of velvet, candlelight and large black and white banners of figures moving, and we were off. I had a stream of people coming up all night with big smiles, welcoming me back, giving me a hug. Saying “Great to be here, I have so missed your dances”, “It is so good to be back here again, thanks so much.” “Does this mean you’ll be doing more?” It was gratifying and humbling to receive such a warm heartfelt welcome.
Everyone was so happy returning after a long dance drought. We had a big crowd of about two hundred and fifty, and the dance floor was packed with people being free and wild, letting go into the music and the dance. Hugs and smiles were happening everywhere as old friends greeted each other with joy and celebration. There was also generosity abounding; many handed over more than the $20 entry price, as well as buying heaps of raffle tickets for the amazing array of healing sessions, gifts, vouchers and services which were donated.
RETURN OF THE PEAK QUEEN
The Peak Queen was back. I did my best to create a wonderful dance experience and chose music that brought the dancers into their hearts, creating a big long peak towards the end of my set so the crowd reached heights of energy and joy together. Arms were raised, voices sang out, arms linked, smiles abounded, eyes shone and the sweat dripped. When I finished at ten o’clock, I asked Avi to read out some words. “Thankyou all for coming tonight and for your generosity. Love is the most important thing there is, and there is an abundance of it here tonight – we are truly blessed.” With huge applause and cheers, my heart was bursting with love and gratitude. All the more for my ten months of difficulty and isolation, this was like a huge salve over it all.
The night was overwhelming, I have never felt so much love, within and without. I kept reminding myself to stay open and expand into it. Feeling it, allowing it, rather than shutting some of it out because it was all too much which I didn’t deserve. What an exceptional experience, and I wasn’t going to miss it. So much love coming to me, so much love coming from me, and so much love in the hall all around. It filled my heart that Zorbas had touched so many. For days I was in a love bubble.
Perhaps it was time to come out of retirement from DJing. There was clearly a demand for more Zorbas dances, and I could see it was possible with enough support. Anatta said “I would love to continue organizing them. You may have trouble walking and talking but there is nothing wrong with your DJing abilities”. I had missed contributing to my community after giving up my radio show Full Circle on RTRFM 92.1, it feels part of a fulfilled life.
Not only was it a successful night energetically, we raised $5000. We were thrilled. It enabled me to obtain a specially designed wheelchair, plus it helped pay for many healing sessions, and new outdoor seating which was an upgrade from the old couch that friends had deemed beyond redemption.
So in (reluctantly) asking for and receiving help from a wider circle everyone gained. In the midst of not feeling capable of doing much in the world with little voice or walking ability, unsure about my future, part of my life purpose was reaffirmed, which continued for another ten years. People talked of “the best night ever at Zorbas” and we all shared the love.
I’m sitting with my Occupational Therapist (OT) on a group phone call to NDIS (National Disability Insurance Scheme), in case the person on the other end can’t understand my speech, like the last time I tried. All our efforts over 6 months in getting action on my $1800 bath lift have come to nought. The man answering our call says repeatedly ‘I will pass that on.’ Sophie and I exchange grimaces, we realise he is but a gate keeper, and there is no getting through to the decision makers. NDIS has become an impenetrable black hole.
Twenty months later and I’m still unable to have a bath and receive the therapeutic benefits on my aching joints and muscles. When I tell people I haven’t been able to have a bath in ten years they exclaim ‘Oh my God, I love my baths, that’s terrible!’ Since I tripped over twelve years ago, fractured my knee and in the knee replacement surgery my femur was fractured, I’ve been unable to kneel and that was my only way of getting in and out of the bath on my own. Instead with a bath lift I’d be on a seat as it slowly lowers or rises.
When the WA Housing Authority built my especially designed home in 1999 they made an exception to their policy about not including baths because they recognised its value to me. It’s a pity the organisation which specialises in disability can’t do the same.
Just as well I’ve worked on my issues and don’t have self esteem or confidence problems, because trying to get your fundamental needs met from an organisation whose job it is, that feels like you are dealing with a brick wall, can be demoralising, fraught and exhausting. Just what someone who has many challenges in life doesn’t need from the organisation that is meant to be there to help.
NDIS OFF TO A GOOD START
It wasn’t always like this. When I started with the Western Australian program five years ago, I felt respected and heard. I had my own local coordinator in the organisation signing me up easily, who visited several times in my home, and got to know me and my life. She felt like my champion to get my needs met. When WA joined the Australia-wide version, it was the new coordinator who made suggestions of what I could apply for, such as dressmaking for my not-usual body and my Travelscoot. It took about three to four months for new items like the scooter to be approved.
My Travelscoot enables more adventures, at Cradle Mountain Tasmania
NDIS has made a huge contribution to my life for which I am very grateful. Paying for all my 6 hours a week of home support, my twice weekly hydrotherapy, and sessions with my Feldenkrais practitioner, plus contributing $60 for a regular massage, saves me the money I was already paying for them. This means I can have more regular Chiropractic, massage and pedicures (I can’t reach my feet) and join the health club with the better year round pool. My body is doing better with less pain and more strength, and I have an improved life quality. I have more energy so I can do more, with my small business, chores in the house and garden, have a social life and adventures and participate in my community. NDIS is life changing for individuals and their families but also good for the economy, with every dollar allocated there is at least double contributed to the economy.
That is until the cuts and changes brought in by the previous Australian government. Now there’s no individual coordinator, caps on staff numbers, it has become an overwhelming behemoth, with no action and no care.
DASHED HOPES
Hope and dashed hopes have prevailed around the bath lift, as every day when I use the bathroom, there is my beautiful deep bath, complete with railing and arm rests, calling me. My first OT found bath lifts to try, but the ripples on the bottom of the bath interfered with the suction pads’ action, and it was too unstable. End of story, no more baths for me. Until my new OT had the brainwave to see if the suction pads could be moved, and hallelujah they can. With hopes for a bath by winter 2021, Sophie put in the application in February 2021. I bought special bath oil from my potions queen friend. Twenty two months later and I’ve resorted to making the bath a happier place with a hanging plant.
The icing on my frustration cake is that I have $5000 unspent in my assistive technology budget to pay for the bath lift.
RENEWED HOPE
But with a new government there is renewed hope. No big changes overnight but finally I have a person in NDIS to email with, and she doesn’t understand why the bath lift hasn’t been approved, and asked me to send her an updated quote.
Oh but now the chair we decided was best is out of production. So we have to go through the whole process again, costing $3000 of OT time.
This is my little window into the dysfunction of the NDIS and its costs. Mine is minor compared to many others, like those with substantial cuts to essential and important services who have had to appeal against the lawyers of the NDIS (costing millions).
This revolutionary scheme, that enables people with a disability to live to their potential, with flow on benefits to their families, community and the economy, started out much better (with room for improvement), and can be again. There are reviews underway, but with disabled people as part of the organisation, increased numbers of well trained staff, a designated coordinator for each participant, streamlined processes and a dose of common sense it can keep on enhancing lives.
UPDATE ON THE SAGA OF THE BATHLIFT
Two and a half years after applying to NDIS, one year after delivery was promised I FINALLY HAVE A BATH LIFT!
My OT Andrew from @IndigoAustralia has been with me all the way and when it was delivered this week he took great care to set it up. Except we discovered it wasn’t the lift we’d ordered. ‘Oh no! Can you believe it, the saga continues!’ Thankfully it was only a miscommunication, and this bath lift fits me and my bath well. Phew!
I can happily report my first bath was wonderful, with many more to come.
On the Sunday morning I’m so impressed that the Williamstown Literary Festival actively supports emerging writers and first time published authors. While the big festivals have the crowds and well known authors, this kind of gathering is so important for the next generation. I feel like this is where I belong. If these writers can get their book published, so can I.
They make a whole ceremony of the awards, getting the shortlisters of each of the four categories up in turn on the small stage, presenting us with a certificate and our copy of the anthology, the winner reading out an excerpt of their story. To see the stage full of young people for the youth prize is a thrill.
The Jennifer Burbidge Short Story award is in memory of a young woman, funded by her family, and asks for writing about disability in an Australian setting. I’m very happy to meet her sister, and to receive a commendation for my story; that’s a win.
I figure this is the most acknowledgment any of us has received, and on the lonely road of a writer, it feels bloody good. Good on the Willylit Festival.
A few of us short listed for the Jennifer Burbidge Award at the Willylit Festival
HEALING HANDS
A priority of my life and resources has been devoted to caring for this imperfect body, enhancing its potential so I can live to my best. So to be back with this talented healer fills me with joy and excitement.
I have three sessions over six days with Frank, the master Chiro.
I relish having his healing hands and attention asking ‘How can I be of greatest service here?’ ‘Yes! Yes! This feels so, so right. Good on me for getting myself here.’
And with my neck not needing rescuing this time, he has a broader scope of where to put his attention. I’m his last appointment of the day and we have an hour together. He’s feeling my back, my neck, hips, letting his hands inform him and he intuitively responds using his large kitbag of techniques’ (See An Extraordinary Gift pt 1 & 2).
‘So tell me what’s been happening’ he says, ‘How is your body, what have you got to report?’ ‘I’ve been having some falls, about once or twice a year, when my left foot doesn’t lift up a millimetre or two enough, gets caught and over I go. They’ve been doing some damage, jarring everything, especially my neck, a wrist fracture, setting me back from the progress I’ve been making.’
Thankfully they’ve not been anywhere as severe as 2009 when after falling I fractured the knee, and then during the knee replacement surgery my femur was fractured resulting in ten weeks in hospital and a long rehabilitation. One consequence is the foot occasionally tripping me up.
Frank works the foot, and deeply into the thigh muscles, stroking the fascia tissue. He jiggles and stretches my hips, back and neck. He regularly checks in how I’m going, ‘shall I continue or have you had enough?’ ‘Oh keep going’ I say’ we don’t have much time, let’s go for it.’
I’m zonked heading back to the hotel, wiped out; powerful stuff. Having a day off in between helps for recovery and for the work to settle.
After another wonderful session with a master healer
In our next two long sessions Frank continues his magic. How I love to be working with him. Both tuning in, both present, respectful. He works on my lower back, moving the bottom end of the table up and down, my legs and lower back with it – a slow gentle stretch, a bit strange, oh but it feels so good, so satisfying, like nothing I’ve ever experienced. I feel each extension, down then back up, each stretch, while Frank digs into different spots. Suddenly there is more space, more ease in my middle back, sitting straight is easier. I’m so grateful for my three sessions, and of course I wish I could have more.
SCOOTER CAMPAIGN
For the five days until the retreat starts, in between my sessions with Frank, I get out to explore Melbourne and eat delicious food at the myriad of options, within my limits. I’m in heaven touring the Melbourne Botanical Gardens on their mini-bus trip with an informative guide happy to answer all my questions. But it’s frustrating not being able to explore more deeply at my leisure. I say to the staff at reception ‘So much to dive into, my passion for the natural world and botany, and I only get to see it fleetingly. Why don’t you supply scooters?’ They agree. ‘Our sister botanical gardens have scooters, and they’re popular. Please write to management, we’d love to see them here’.
It’s my kind of heaven to be in the Melbourne Botanical Gardens
I’m on a bit of a campaign on the lack of scooters available for people like me, who turn up without a companion to push the wheelchairs provided. My dodgy shoulder, elbow and wrist joints prevent me from propelling myself. I would like to go to the Zoo, or art gallery, the aquarium, but I can’t manage the walking distances and unknown amount of seats, on my own.
It’s like they’ve ticked the box for accessibility with a wheelchair and paths, but it only caters for some and excludes my kind of disability. After using the free scooter at the Melbourne Museum two years ago, which enabled me to spend hours happily immersed in their exhibits, feeling included and welcomed, I’m saying as I contact other major venues, ‘If the Melbourne Museum can supply them, so can you.’ Letting them know there is a demand.
On the free scooter at the Melbourne Museum March 2021
My excitement when I turn up to the Museum on my last day turns to disappointment when I’m told their one scooter isn’t working. ‘Really?? You only have one? This is my one day I can do this.’ Now what am I going to do with my day? I sit a bit lost for half an hour in the busy entrance foyer, under the apologetic eye of a staff member who agreed ‘it’s not good enough to advertise and then not have any available’, trying to find an alternative close to Melbourne I can manage. There are none.
Excited to be heading into the Melbourne Museum June 2022, until I discover their one scooter is out of action. Picture taken by friendly people who saw my attempts at a selfie with short arms.
I assuage my disappointment with a slap up lunch at my favourite Malaysian restaurant near the hotel and continue my search for Australia’s best vanilla slices from the bakery over the road (they get a big tick).
Best Mie Goreng
I’m having trouble sleeping, I can’t get comfortable, with my shoulders, neck and hips not happy. Some attributable to the bodywork but I finally realise my latex mini mattress I always take travelling, long enough for shoulders and hips, is worn down and not giving the padding as it should. It means the whole trip the nights are long and I’m sleep deprived. Bugger.
QUALITY TIME INWARDS
Then it’s time to jump into my next adventure, with a two hour drive with two lovely women into country Victoria in winter, to be surrounded by forest and visiting wildlife. Being back with my fellow silent meditators, it’s a joy to be sitting in the first session for the meditation retreat after two years.
Five days of deep silence with the support of a self-realised teacher and forty others, sitting and walking with awareness, watching my breath, my thoughts and sensations, observing what is arising, is like an outer holiday but inner intense work. Life is simplified for quality time inwards – off grid, no phone, no lists to do, no driving, shopping, minimal decisions, meals provided, none of the everyday tasks (except for our rostered chore) and no talking, interactions dropped.
I feel supported to be here, a lift from and back to Melbourne organised, and the little extra comforts given to me add to it – my chair near the fire in the meditation area already set up; in my accessible room the bed side lamp, room heater and electric blanket, in the middle of winter they are most welcome.
The local mob
DAY THIRTEEN
My neck stays in place until day thirteen. It’s done really well considering all I’ve been up to.
This time I watch in meditation how the effects on my brain function of a slight pressure on a nerve in my neck, roll over me, like dark storm clouds sweeping in. The head and neck ache, and fatigue settle over me. Seeing it is instructive, and how much of an effect it has. In my usual life, when I wake up with these symptoms, I can feel a bit overwhelmed, a bit stressed if I have a busy day ahead. I feel only half functional, like I’m pushing through heavy fog all day, although when I’m engaged in conversation or work they fade to the background.
But here, nothing to do but pay attention, which isn’t easy feeling tired when drifting off beckons. But I take the pressure off to be super alert, keep it gentle and come back to watching my breath when I remember. Do the best I can in the conditions. I’m here, that’s the main thing, nourishing my deep self.
I’m ready to head home at the end of the five days, now that I’m not in great shape. I feel crap, with a headache and wiped out, and travelling is one of my least favourite times to feel poorly. I’m sure many of us have had those trips, when it’s an endurance test after not much sleep or feeling unwell, and how long and drawn out it feels. I have vivid memories of the worst ones, like the ten hour drive in bumper to bumper traffic with Bali Belly. My five hour wait at the airport in seats that are too big and not comfortable don’t help but at least it leaves on time.
The first night back in my supremely comfortable bed I’m out for nine hours. Bliss.
LIFE IS NOT A STRAIGHT LINE
Then came a ‘no’. The publisher to whom I sent three chapters, after saying ‘yes’ to my pitch, came back as a ‘no’. ‘Good luck finding the right publishing fit.’ So with the peaks, come the troughs, revealing again that life is not a straight line, especially for a writer. I will continue to send submissions to publishers to find my right fit.
NO REGRETS
Looking back, my wonderful adventures fed me on many levels, and I’m still feeling the after effects: more space and movement in my upper back and a slight improvement in my voice (which is huge); inspired by all the first time published authors, and to keep entering competitions. My creativity, body and spirit were all nurtured. It felt important to say ‘yes’ when everyone else was saying ‘yes’ to me. Good on me for taking the jump.
But I’ve paid a price, despite vigilance and care. It’s taken a month of feeling pretty crap and weekly sessions with my local Chiro (Dr Liam at Cottesloe Chiropractic) for my neck to settle back into place. But with all the adventures, I have no regrets. Meanwhile this ‘Queen of Adaptation’ is thinking about ideas for greater comfort next time.
With a degenerative condition hanging over me all my life I have had a strong motivation to take good care of my body, keeping it fit and healthy, to stave off the deterioration and a frightening future. What has helped the most has been a profound journey of coming to love and accept myself and the body I was born with, and a deeper journey of the spirit, of touching that vast part of me which is not the body. Living with the paradox ‘I am not the body but I am’ sums up my journey of taking good care of my body as well as connecting with my inner divine spirit that is untouched by any of my body issues. If I can learn to love and accept my less than perfect body, and myself, then anyone can.
LittleBodyHugeLife 